Hello World!
Well, this will most likely be my last entry. 😞
I’m moving to a different platform! You can continue to follow my journey on Facebook! I’ve created a page titled Jessi’s Journey. I can be more interactive with you guys and I just prefer making short quick update videos over typing a long spiel and having to spellcheck 8 times.
I’m hoping you will follow me there. If not, I bid you a fond farewell!
https://m.facebook.com/Jessis-Journey-367979157125875/ <<< Check it out!
Breathe Easy
Live Life then Give Life, Please be an Organ Donor.
Tuesday, March 26, 2019
Tuesday, February 19, 2019
This is 33
Hello World!
Well this is 33.
And I’m not upset about it. I mean, I wasn’t suppose to live this long. I say it every Birthday because making it 1 more year was my wish for a long time. How crazy is that? Your birthday wish becomes: please let me make it to Easter then July 4th then Halloween then Thanksgiving, hopefully Christmas and if I’m lucky another birthday.
10 years ago. March of 2009 is when everything went downhill so fast. I went from College student living on my own to back home with my parents. Needing 24/7 supplemental oxygen, eating through a tube, using a wheelchair to get around, and in the hospital like clockwork - 2 weeks in, 1 week out. It was hard and scary and frustrating and depressing. I was losing.
I would go on later that year to fall into a coma for about 45 days. I would have to relearn to walk, swallow, laugh, basic motor functions. I would be listed for a double lung transplant and wait 2 years 2 months and 2 days. After transplant I would have heart issues and need my heart stopped - yes, stopped completely, and restarted. I would develop neuropathy in my hands, feet, and back. Skin cancer is a new battlefront. I would have liver issues. Develop Kidney failure. Fall back to an unhealthy weight. Chronic Rejection took hold of my lungs and I had chemo and IVIG. Now both kidney and a second lung transplant are in the future.
All while that is going on, I would watch my Dad be diagnosed with stage 4 terminal cancer. I’d watch him fight every week at chemo for 4 years when the Drs didn’t give him 6 months. I was told he would do his chemo treatment then drive the 2 hours to my hospital where I laid in a coma just to be with me. I watched my childhood house burn to the ground. In that fire we lost 3 family dogs. 1 was my best friend. Tucker had been through everything with me. My dad died a few weeks later. I watched my Mom rebuild her house and life. I tried inter grating myself back into “normal” life after transplant.
Through all of that, all that negative - I managed to graduate college - with a 3.4 GPA - and still party like a rockstar. Move out on my own. Met someone and fell in love - Married him! Expanded my family 10 fold. Bought a house on a quiet piece of land in the country - the dream! Welcomed new dogs into my life - my whole life. Welcomed my nieces and nephews into the world. Climbed mountains - Cadillac twice! Ran my first ever 5k - ok so there was some walking, baby steps. Became an expert on travel from NH to OH. Attended more weddings than I can count! Competed in the Transplant Games of America - Silver in Bocce! Rode a motorcycle for the first time. Ate ramen noodles for the first time - thanks Bri. Ate salt water taffy for the first time - again, thanks Bri. Cut all my hair off - twice! In July it will be 7 years post transplant. I fostered dogs. Helped grow our family business. Discovered my love for mowing the lawn. I laughed. I loved. I cried. I yelled. I lived.
I lived.
Age is all about perspective. To some 33 is old, to others it’s young. But to me it another milestone. I’m proud to grow another year older. I embrace what it has to offer. Birthdays are meant to be celebrated - Big and loud - Every year. You are never guaranteed another one.
Happy Birthday to me! Live your life loud.
-Breathe Easy
10 years ago. March of 2009 is when everything went downhill so fast. I went from College student living on my own to back home with my parents. Needing 24/7 supplemental oxygen, eating through a tube, using a wheelchair to get around, and in the hospital like clockwork - 2 weeks in, 1 week out. It was hard and scary and frustrating and depressing. I was losing.
I would go on later that year to fall into a coma for about 45 days. I would have to relearn to walk, swallow, laugh, basic motor functions. I would be listed for a double lung transplant and wait 2 years 2 months and 2 days. After transplant I would have heart issues and need my heart stopped - yes, stopped completely, and restarted. I would develop neuropathy in my hands, feet, and back. Skin cancer is a new battlefront. I would have liver issues. Develop Kidney failure. Fall back to an unhealthy weight. Chronic Rejection took hold of my lungs and I had chemo and IVIG. Now both kidney and a second lung transplant are in the future.
All while that is going on, I would watch my Dad be diagnosed with stage 4 terminal cancer. I’d watch him fight every week at chemo for 4 years when the Drs didn’t give him 6 months. I was told he would do his chemo treatment then drive the 2 hours to my hospital where I laid in a coma just to be with me. I watched my childhood house burn to the ground. In that fire we lost 3 family dogs. 1 was my best friend. Tucker had been through everything with me. My dad died a few weeks later. I watched my Mom rebuild her house and life. I tried inter grating myself back into “normal” life after transplant.
Through all of that, all that negative - I managed to graduate college - with a 3.4 GPA - and still party like a rockstar. Move out on my own. Met someone and fell in love - Married him! Expanded my family 10 fold. Bought a house on a quiet piece of land in the country - the dream! Welcomed new dogs into my life - my whole life. Welcomed my nieces and nephews into the world. Climbed mountains - Cadillac twice! Ran my first ever 5k - ok so there was some walking, baby steps. Became an expert on travel from NH to OH. Attended more weddings than I can count! Competed in the Transplant Games of America - Silver in Bocce! Rode a motorcycle for the first time. Ate ramen noodles for the first time - thanks Bri. Ate salt water taffy for the first time - again, thanks Bri. Cut all my hair off - twice! In July it will be 7 years post transplant. I fostered dogs. Helped grow our family business. Discovered my love for mowing the lawn. I laughed. I loved. I cried. I yelled. I lived.
I lived.
Age is all about perspective. To some 33 is old, to others it’s young. But to me it another milestone. I’m proud to grow another year older. I embrace what it has to offer. Birthdays are meant to be celebrated - Big and loud - Every year. You are never guaranteed another one.
Happy Birthday to me! Live your life loud.
-Breathe Easy
Wednesday, January 30, 2019
Still Trying Though
Hello World!
Well, well, well... 2019. Not all I had hoped/planned for BUT 1 month in and I’m still trying.
I love the whole New Year New Me mentality. I’m a great procrastinator. I’m a great excuse maker. I love the idea of adulthood means if I don’t want to do it, I don’t have to. Wellll that makes change hard. Extra hard. So deadlines tend to work for me. For the entire month of December I planned and mentally geared myself up for change. I was ready. My health had another idea. So instead of kicking off the new year invigorated and ready to rage... I had pneumonia!
I went through 3 weeks of on and off again fevers. Chills. Sweats. Zero appetite - that 90lbs I worked so hard for disappeared real quick. I was sleeping a lot but not really getting rest. Coughing myself awake every night to the point I was sleeping upright. Not the way I planned to start the new year.
Thankfully after some increased steroids and added antibiotics I’m feeling like myself again. While the majority of the pneumonia is gone, I’m now at risk to get it again this winter so I have to be vigilant as to people I see and things I do. Which, truth be told, I’m not super upset about having to do right now cause it’s winter. It’s cold outside, I don’t want to be out there anyway.
But all things in the health department are moving... mostly forward... which is good. I went and got my first pair of glasses the other day. I only have to wear them at night when I drive. I had my lip biospsied again and it came back positive for squamous cell skin cancer. So I’ll be having that removed in the coming weeks. It’s in such a weird spot, it makes eating a little difficult. I use a lot of straws now. My kidneys are still functioning at subpar, no worse which is a plus. Lately my liver has been acting wonky as well. No answer to why that is besides the usual... medication side effects.
Lungs are stable, stable at 30% of normal so not great by any means... but stable is good. One thing I really want to do for 2019 is get my lung function up. My last Transplant Check up went great. Doctors are really loving that my lung function has stayed stable for almost 2 years now. That’s really good when you fight chronic rejection everyday. We are basically just waiting for that decline to start again and then we will start the process for another lung transplant. But I hate when I hear “that’s your best” or “things aren’t going to get better.” I’m stubborn. I know that. Sometimes that works for me and sometimes that works against me. I hate when someone else tries to tell me what my limits are. So I really, really, REALLY want to work on boosting this lung function to be better. And yes, I know PFTs are just a test and how I feel really matters. But I like numbers, and I want to see it on paper. I’m going to be starting Pulmonary Rehab. I’ve done this before and formal exercise is not my favorite thing to do. The idea is the 8-10 weeks of Pulmonary Rehab will help jump start a workout program I can do at home. It will show me what I’m capable of and how I can do the right exercises at home without overwhelming myself.
The other big health topic on the agenda is still the feeding tube. I have a new insurance company so hopefully that will be coming in the next few months. I have to start the whole process over again but I think this time I’ll have a better result. I’m not looking forward to having the tube but I know it will be more beneficial to have it.
My brain has been in overload since the new year. Other than my physical health I’ve been dealing with depression and anxiety again. That’s always going to be a work in progress. Not letting it control my every day is the biggest thing. I’m looking forward to working on a new CF related event for the fall. I love being part of the Board of Development on the CF Foundation. I’m going on a family vacation in April to Disneyland. I can’t wait to go camping all summer. My marriage is wonderful. My dogs are amazing. I really am enjoying my life right now.
2019 will be a great year. The future is limitless.
Breathe Easy
Well, well, well... 2019. Not all I had hoped/planned for BUT 1 month in and I’m still trying.
I love the whole New Year New Me mentality. I’m a great procrastinator. I’m a great excuse maker. I love the idea of adulthood means if I don’t want to do it, I don’t have to. Wellll that makes change hard. Extra hard. So deadlines tend to work for me. For the entire month of December I planned and mentally geared myself up for change. I was ready. My health had another idea. So instead of kicking off the new year invigorated and ready to rage... I had pneumonia!
I went through 3 weeks of on and off again fevers. Chills. Sweats. Zero appetite - that 90lbs I worked so hard for disappeared real quick. I was sleeping a lot but not really getting rest. Coughing myself awake every night to the point I was sleeping upright. Not the way I planned to start the new year.
Thankfully after some increased steroids and added antibiotics I’m feeling like myself again. While the majority of the pneumonia is gone, I’m now at risk to get it again this winter so I have to be vigilant as to people I see and things I do. Which, truth be told, I’m not super upset about having to do right now cause it’s winter. It’s cold outside, I don’t want to be out there anyway.
But all things in the health department are moving... mostly forward... which is good. I went and got my first pair of glasses the other day. I only have to wear them at night when I drive. I had my lip biospsied again and it came back positive for squamous cell skin cancer. So I’ll be having that removed in the coming weeks. It’s in such a weird spot, it makes eating a little difficult. I use a lot of straws now. My kidneys are still functioning at subpar, no worse which is a plus. Lately my liver has been acting wonky as well. No answer to why that is besides the usual... medication side effects.
Lungs are stable, stable at 30% of normal so not great by any means... but stable is good. One thing I really want to do for 2019 is get my lung function up. My last Transplant Check up went great. Doctors are really loving that my lung function has stayed stable for almost 2 years now. That’s really good when you fight chronic rejection everyday. We are basically just waiting for that decline to start again and then we will start the process for another lung transplant. But I hate when I hear “that’s your best” or “things aren’t going to get better.” I’m stubborn. I know that. Sometimes that works for me and sometimes that works against me. I hate when someone else tries to tell me what my limits are. So I really, really, REALLY want to work on boosting this lung function to be better. And yes, I know PFTs are just a test and how I feel really matters. But I like numbers, and I want to see it on paper. I’m going to be starting Pulmonary Rehab. I’ve done this before and formal exercise is not my favorite thing to do. The idea is the 8-10 weeks of Pulmonary Rehab will help jump start a workout program I can do at home. It will show me what I’m capable of and how I can do the right exercises at home without overwhelming myself.
The other big health topic on the agenda is still the feeding tube. I have a new insurance company so hopefully that will be coming in the next few months. I have to start the whole process over again but I think this time I’ll have a better result. I’m not looking forward to having the tube but I know it will be more beneficial to have it.
My brain has been in overload since the new year. Other than my physical health I’ve been dealing with depression and anxiety again. That’s always going to be a work in progress. Not letting it control my every day is the biggest thing. I’m looking forward to working on a new CF related event for the fall. I love being part of the Board of Development on the CF Foundation. I’m going on a family vacation in April to Disneyland. I can’t wait to go camping all summer. My marriage is wonderful. My dogs are amazing. I really am enjoying my life right now.
2019 will be a great year. The future is limitless.
Breathe Easy
Thursday, October 18, 2018
Super Update
Hello World!
First I would like to say to those few people - it’s really not many - but those people that feel the need to tell me I share too much and people don’t want to hear about my “problems” this post is soooooo not for you. This blog isn’t for you. I’m not for you. I’m an open person and it hasn’t always been that way. But my being open helps me process things. When my old roommate Depression crashes the party and every day/night invites his lady friend Anxiety over so I’m third wheeling it with no control.... this helps. When someone reaches out to me and says they are going through the same thing... that helps. To bring light and awareness to different situations that maybe someone has never heard of... that helps. My openness is to help. Anyone. Anywhere. Anytime.
Now back in January I was pretty optimistic about 2018.... well per usual life had other plans. The first half of the year was challenging in different ways. My health was good, but other parts of my life weren’t fantastic. This latter part of the year is proving to be very trying medically.
Cystic Fibrosis is this complicated SOB of a disease. Most of the time the lungs are the center of attention cause let’s get real, lungs are super important, I mean breathing is right up there with a heart beat. But CF also greatly affects the digestive system. The same thick mucus that clogs lungs and creates infection also clogs all other organs, including the intestines. People with CF have a hard time gaining weight because of it. Their bodies don’t absorb fats or proteins or vitamins correctly. Their pancreas doesn’t produce insulin correctly. Most CFers have vitamin deficiencies and are underweight and smaller than their peers. Because of this you are taught at a young age to EAT! No skipping meals, lots of snacks, food, food, food. Try and give yourself a “cushion” to work with if you get really sick.
All that being said, when your lung function goes down, your body is working harder to breath and by doing so you burn more calories than normal. Which means you need to consume even MORE calories. A healthy persons diet is usually based off a 2,000 calories a day diet.... Double it for CFers, and when you are sick just triple it! My lung function is around 35% - give or take a few percent. That means my lungs are working at 35% of normal function for a person my age. Which makes my heart work harder so my resting heart rate is at an exercise level. WHICH MEANS I’m burning extra calories even when I’m sitting still. WHICH MEANS I need to eat soooo much fooooddd!! I’ve been on a weight decline for close to a year. I stabled out around 95lbs for a while. Then it started to drop again. Now I can seem to break 90lbs no matter how much or what I eat. So it was decided I needed a feeding tube. This isn’t my first time needing one. I had one for about 4 years prior to my transplant.
That was back on September 4th. I have since been in an uphill battle with my insurance company on coverage. At first it was denied saying it was an elective surgery. I’m not sure who does this electively, but I wouldn’t. That last time I had my tube placed I ended up in a 45 day coma.... yeah sign me up for that again! Last week they finally accepted our appeal to get the tube placed but they are still not covering and formula or supplies. We are going on 2 months and it’s infuriating. The battle continues. I have many, many, many voices working for me that I can’t help but have an optimistic view that we will figure this out. It’s taking a long time - which it shouldn’t - but it’s not over. And while I wait for this tube I’m doing my best to just keep eating! It’s just another hiccup in the road.
Along with this feeding tube fiasco I’ve been having hip pain the last month or so. I was told a while ago that my bones are pre osteoporosis... so of course I figure this meant my bones were going. Some days it hurts so bad I can barely walk. THANKFULLY that’s not the case. A recent appointment revealed that’s its muscle deterioration. Which isn’t great, but better than losing bone. When you don’t have anymore reserved fat your body starts taking away muscle. So I’ll be starting physical therapy to hopefully rebuild some lost muscle and hey, maybe gain more! 😜
My other medical issue that has caused A LOT of anxiety lately has been a cancer scare. Cancer is suck and evil word that just breeds fear. So I kept that close to myself and only a select few. Back in August I went for a routine Pap Smear and my results came back abnormal. No big deal - most of the time. However having CF, having an immunodeficiency, having a family history of cancer - all works against me! So last week I had 3 different biopsies taken - which is TRAUMATIC when it’s in that area of your body. 2 came back as a rare, aggressive precancer - of course! Rare and aggressive is my medical specialty. So I have a same day surgery coming up in November to remove these lovely precancers. I’m a hot mess about it. My lungs are too shitty to do a full sedation, so an epidural will be used. I’m a spaz and I don’t handle these things well. This will be interesting.
On the transplant front, I go back to Cleveland in November. I’m not expecting anything unexpected. Should be routine with blood work, chest X-ray, pulmonary function test, and then meet with my TX team. My kidneys are still not living up to there potential. But they are hanging in there. Got my flu shot, did you get yours? Overall I’m good. I don’t always sound good, but I got to vent now and then.
I’ve said it before and I’ll say it again, I’ll try and be better about updating sooner and letting you guys know about some of the good things that are non medical going on in my life.
Breathe Easy
First I would like to say to those few people - it’s really not many - but those people that feel the need to tell me I share too much and people don’t want to hear about my “problems” this post is soooooo not for you. This blog isn’t for you. I’m not for you. I’m an open person and it hasn’t always been that way. But my being open helps me process things. When my old roommate Depression crashes the party and every day/night invites his lady friend Anxiety over so I’m third wheeling it with no control.... this helps. When someone reaches out to me and says they are going through the same thing... that helps. To bring light and awareness to different situations that maybe someone has never heard of... that helps. My openness is to help. Anyone. Anywhere. Anytime.
Now back in January I was pretty optimistic about 2018.... well per usual life had other plans. The first half of the year was challenging in different ways. My health was good, but other parts of my life weren’t fantastic. This latter part of the year is proving to be very trying medically.
Cystic Fibrosis is this complicated SOB of a disease. Most of the time the lungs are the center of attention cause let’s get real, lungs are super important, I mean breathing is right up there with a heart beat. But CF also greatly affects the digestive system. The same thick mucus that clogs lungs and creates infection also clogs all other organs, including the intestines. People with CF have a hard time gaining weight because of it. Their bodies don’t absorb fats or proteins or vitamins correctly. Their pancreas doesn’t produce insulin correctly. Most CFers have vitamin deficiencies and are underweight and smaller than their peers. Because of this you are taught at a young age to EAT! No skipping meals, lots of snacks, food, food, food. Try and give yourself a “cushion” to work with if you get really sick.
All that being said, when your lung function goes down, your body is working harder to breath and by doing so you burn more calories than normal. Which means you need to consume even MORE calories. A healthy persons diet is usually based off a 2,000 calories a day diet.... Double it for CFers, and when you are sick just triple it! My lung function is around 35% - give or take a few percent. That means my lungs are working at 35% of normal function for a person my age. Which makes my heart work harder so my resting heart rate is at an exercise level. WHICH MEANS I’m burning extra calories even when I’m sitting still. WHICH MEANS I need to eat soooo much fooooddd!! I’ve been on a weight decline for close to a year. I stabled out around 95lbs for a while. Then it started to drop again. Now I can seem to break 90lbs no matter how much or what I eat. So it was decided I needed a feeding tube. This isn’t my first time needing one. I had one for about 4 years prior to my transplant.
That was back on September 4th. I have since been in an uphill battle with my insurance company on coverage. At first it was denied saying it was an elective surgery. I’m not sure who does this electively, but I wouldn’t. That last time I had my tube placed I ended up in a 45 day coma.... yeah sign me up for that again! Last week they finally accepted our appeal to get the tube placed but they are still not covering and formula or supplies. We are going on 2 months and it’s infuriating. The battle continues. I have many, many, many voices working for me that I can’t help but have an optimistic view that we will figure this out. It’s taking a long time - which it shouldn’t - but it’s not over. And while I wait for this tube I’m doing my best to just keep eating! It’s just another hiccup in the road.
Along with this feeding tube fiasco I’ve been having hip pain the last month or so. I was told a while ago that my bones are pre osteoporosis... so of course I figure this meant my bones were going. Some days it hurts so bad I can barely walk. THANKFULLY that’s not the case. A recent appointment revealed that’s its muscle deterioration. Which isn’t great, but better than losing bone. When you don’t have anymore reserved fat your body starts taking away muscle. So I’ll be starting physical therapy to hopefully rebuild some lost muscle and hey, maybe gain more! 😜
My other medical issue that has caused A LOT of anxiety lately has been a cancer scare. Cancer is suck and evil word that just breeds fear. So I kept that close to myself and only a select few. Back in August I went for a routine Pap Smear and my results came back abnormal. No big deal - most of the time. However having CF, having an immunodeficiency, having a family history of cancer - all works against me! So last week I had 3 different biopsies taken - which is TRAUMATIC when it’s in that area of your body. 2 came back as a rare, aggressive precancer - of course! Rare and aggressive is my medical specialty. So I have a same day surgery coming up in November to remove these lovely precancers. I’m a hot mess about it. My lungs are too shitty to do a full sedation, so an epidural will be used. I’m a spaz and I don’t handle these things well. This will be interesting.
On the transplant front, I go back to Cleveland in November. I’m not expecting anything unexpected. Should be routine with blood work, chest X-ray, pulmonary function test, and then meet with my TX team. My kidneys are still not living up to there potential. But they are hanging in there. Got my flu shot, did you get yours? Overall I’m good. I don’t always sound good, but I got to vent now and then.
I’ve said it before and I’ll say it again, I’ll try and be better about updating sooner and letting you guys know about some of the good things that are non medical going on in my life.
Breathe Easy
Tuesday, January 16, 2018
I'll Take It
Hello World!
So 2018 has started out very interesting. At first, things were not going how I planned them and I was getting discouraged that this was just the start of a very tough year. Right off the bat I was hit with a new diagnosis, Hyperthyroidism. Which I knew nothing about. I had no idea what this was going to entail. Thankfully it turns out Hyperthyroidism is super common and easily controllable with a pill. Whats one more pill anyway at this point?
The other big issue, which continues to be an issue, is my weight. I some how lost 10lbs over the holidays. Even with all the extra food and calories. Thats sooooo not good. Adjusting to this renal diet has been HARD! I complain about it all the time because it is just a nightmare. The foods I love, that are also high in calories and fat are now on my "do not eat" or "limit" eating lists. I'm adjusting. It takes time, but I can do it. The problem is though, CFers already have trouble keeping weight on. We don't absorb all the nutrients from our food, about half actually. So CFers are encouraged to eat extra and add calories. My CF team is worried this renal diet is going to cause me to loose weight. And it seems their thoughts have been correct. I'm eating all day long and I'm just barely breaking even with my weight. I weigh about 100lbs, give or take 5lbs. Ideally I should be 115lbs. If I hit 90-85lbs there is a good chance I'm getting another feeding tube placed.
Skin cancer update.... it has been removed! I have a spot on my face that was squamous (spelling?) cell cancer. I had a simple Mohs Surgery to have it removed. Transplant patients are known for getting skin cancer, its one of those lovely side effects to our anti rejection medications - they make us super sensitive to the sun. I get a routine head-to-toe skin check every 6 months.
My Lungs: While I seem to be over the pneumonia I caught last month my lungs aren't back up to my baseline. Right now my baseline is about 35% of normal. My last lung function test showed I was at 29%. Which isn't where I want it but its better than the 26% it was in the hospital a few weeks ago. My latest xray was able to show there was no new scarring from the pneumonia, which is awesome because it means my lung function can totally go back up - there was no permanent damage. One of the highlights of my last Cleveland trip was doing my reevaluation for oxygen. So you have to be reevaluated every year to determine if you still need oxygen and at what level. I was able to walk a full 10 minutes, at a power walking pace and my O2 Saturation only dipped below 90 twice. Thats amazing! I got the all clear to do everyday activities 02 free! Now I only need to wear my oxygen at night and if I'm going to do some thing strenuous like a sport or hiking or any kind of cardio. i still have chronic rejection but it has stabled out over the last 6 months. All the talks of a second lung transplant are currently put on hold for now.
My Kidneys: These bad boys have been giving me trouble... extra trouble, for months now. I finally got to meet with the Cleveland Kidney Transplant team, and well, they didn't understand why I was there haha. My kidneys are working at about 30%, which is why I'm having problems processing certain things, like potassium, and why I'm having the leg swelling. They are damaged because of the long term predinose use and other anti rejection medications. BUT they told me a kidney transplant isn't considered until 20% and dialysis isn't done until about 10%. So right now there really is nothing more to do. I'm doing everything I can. And just like my lungs, my kidneys could stable out and I have 30% function for years. I could also get sick and lose more function in a month. There really is no telling. So I'm done worrying about it. I'm done letting it stress me out. It wasn't necessarily the answer I wanted, although I'm not really sure what I wanted to hear. I just wanted an answer and a direction. I got that. I still have my kidney stone in my right kidney, but as long as it doesn't bother me, we aren't going to do anything about it
Medically, it seems I'm finally hitting some level ground after months of being on a roller coaster. I'll take it. A boring health life is nice. Heres to hoping I can get through the rest of winter without any sicknesses.
Now that I have some answers and a direction we are going health wise, I can refocus on other things in my life. In January I started working from home. For a few different reasons, but one big one was health. It gives me more flexibility to really keep on top of my medical things and doctor appointment's by setting my own schedule. its been a few weeks and it has definitely been an adjustment. I do enjoy it though. As of right now I don't do any formal exercise. With some of my free time I'm going to try swimming again. I loved to swim as a child, I was even on a swim team. But I haven't been swimming in a VERY long time. Last time i tried to swim I had an anxiety attack. The pressure from the water on my chest made me panic and I felt like I couldn't breathe. I know it was all in my head but it freaked me out and I haven't been swimming since, nothing deeper than my waist. So I would love to start swimming again.
Overall I'm excited to see what 2018 holds, so far its been interesting. While I tend to blog when my health is going crazy, I'll try and be better about keeping you guys updated on the other parts of my life too! Much Love!
Breathe Easy
So 2018 has started out very interesting. At first, things were not going how I planned them and I was getting discouraged that this was just the start of a very tough year. Right off the bat I was hit with a new diagnosis, Hyperthyroidism. Which I knew nothing about. I had no idea what this was going to entail. Thankfully it turns out Hyperthyroidism is super common and easily controllable with a pill. Whats one more pill anyway at this point?
The other big issue, which continues to be an issue, is my weight. I some how lost 10lbs over the holidays. Even with all the extra food and calories. Thats sooooo not good. Adjusting to this renal diet has been HARD! I complain about it all the time because it is just a nightmare. The foods I love, that are also high in calories and fat are now on my "do not eat" or "limit" eating lists. I'm adjusting. It takes time, but I can do it. The problem is though, CFers already have trouble keeping weight on. We don't absorb all the nutrients from our food, about half actually. So CFers are encouraged to eat extra and add calories. My CF team is worried this renal diet is going to cause me to loose weight. And it seems their thoughts have been correct. I'm eating all day long and I'm just barely breaking even with my weight. I weigh about 100lbs, give or take 5lbs. Ideally I should be 115lbs. If I hit 90-85lbs there is a good chance I'm getting another feeding tube placed.
Skin cancer update.... it has been removed! I have a spot on my face that was squamous (spelling?) cell cancer. I had a simple Mohs Surgery to have it removed. Transplant patients are known for getting skin cancer, its one of those lovely side effects to our anti rejection medications - they make us super sensitive to the sun. I get a routine head-to-toe skin check every 6 months.
My Lungs: While I seem to be over the pneumonia I caught last month my lungs aren't back up to my baseline. Right now my baseline is about 35% of normal. My last lung function test showed I was at 29%. Which isn't where I want it but its better than the 26% it was in the hospital a few weeks ago. My latest xray was able to show there was no new scarring from the pneumonia, which is awesome because it means my lung function can totally go back up - there was no permanent damage. One of the highlights of my last Cleveland trip was doing my reevaluation for oxygen. So you have to be reevaluated every year to determine if you still need oxygen and at what level. I was able to walk a full 10 minutes, at a power walking pace and my O2 Saturation only dipped below 90 twice. Thats amazing! I got the all clear to do everyday activities 02 free! Now I only need to wear my oxygen at night and if I'm going to do some thing strenuous like a sport or hiking or any kind of cardio. i still have chronic rejection but it has stabled out over the last 6 months. All the talks of a second lung transplant are currently put on hold for now.
My Kidneys: These bad boys have been giving me trouble... extra trouble, for months now. I finally got to meet with the Cleveland Kidney Transplant team, and well, they didn't understand why I was there haha. My kidneys are working at about 30%, which is why I'm having problems processing certain things, like potassium, and why I'm having the leg swelling. They are damaged because of the long term predinose use and other anti rejection medications. BUT they told me a kidney transplant isn't considered until 20% and dialysis isn't done until about 10%. So right now there really is nothing more to do. I'm doing everything I can. And just like my lungs, my kidneys could stable out and I have 30% function for years. I could also get sick and lose more function in a month. There really is no telling. So I'm done worrying about it. I'm done letting it stress me out. It wasn't necessarily the answer I wanted, although I'm not really sure what I wanted to hear. I just wanted an answer and a direction. I got that. I still have my kidney stone in my right kidney, but as long as it doesn't bother me, we aren't going to do anything about it
Medically, it seems I'm finally hitting some level ground after months of being on a roller coaster. I'll take it. A boring health life is nice. Heres to hoping I can get through the rest of winter without any sicknesses.
Now that I have some answers and a direction we are going health wise, I can refocus on other things in my life. In January I started working from home. For a few different reasons, but one big one was health. It gives me more flexibility to really keep on top of my medical things and doctor appointment's by setting my own schedule. its been a few weeks and it has definitely been an adjustment. I do enjoy it though. As of right now I don't do any formal exercise. With some of my free time I'm going to try swimming again. I loved to swim as a child, I was even on a swim team. But I haven't been swimming in a VERY long time. Last time i tried to swim I had an anxiety attack. The pressure from the water on my chest made me panic and I felt like I couldn't breathe. I know it was all in my head but it freaked me out and I haven't been swimming since, nothing deeper than my waist. So I would love to start swimming again.
Overall I'm excited to see what 2018 holds, so far its been interesting. While I tend to blog when my health is going crazy, I'll try and be better about keeping you guys updated on the other parts of my life too! Much Love!
Breathe Easy
Saturday, December 30, 2017
Bye 2017
Hello World!
The past several months have been a little crazy. It all started back in September.... well I guess it initially started way back in July. I woke up 4th of July with crippling kidney pain. Turns out I have a kidney stone (its still in there) which cause an infection which created more injury to my kidneys - starting this lovely trend downward with my kidneys.
After that incident in July, I was relatively ok for the rest of the summer and early fall. Sometime in September I picked a bacterial infection. and for 4 months it created havoc for my body. I had everything from fevers, to no appetite, to throwing up, to extreme fatigue, to extreme dehydration, to edema (swelling).... on and off for months. Putting me in the Emergency Room this December.
That day I woke up with a slight fever of 99, took some Tylenol and it went away. But by the end of the day the fever was back with a vengeance and was at 103. I took more Tylenol hoping it would go away and by morning I would be better. Well the fever only dropped a little bit and around 3:30am i started to feel dizzy. so I did all the fighting i could at home and gave in and let Brian take me to the ER. Turns out I was dizzy because my blood pressure was so low, dangerously low, from dehydration. I also ended up having pneumonia in my lungs. All these things sent my kidneys into freak out mode even more and my kidney function sky rocketed.
Since getting released from the hospital I have ANOTHER brand new diet change. Low Potassium, Low Phosphorus, Low Calcium, Low Sodium, High Protein... while watching my sugar levels because they have been sky high lately. So I have a whole sheet of paper with approved foods on it. I never realized how picky of an eater I was until I was given this list. The toughest part is keeping food interesting, so I'm not eating the same thing everyday. I now take insulin daily - although we are still working out the kinks. I'm rarely "normal." Its either in the 400s or around 30. Its been fun. My pneumonia is gone. My lungs feel much better. However I was not happy with my last PFTs, because they showed a decline, to 26%. That's a 10% drop from where I was. Now this could just be from the pneumonia and it will bounce back - that's what I'm hoping for. But it could also be my new baseline because the pneumonia did too much damage. Only time will tell. A plus is that I feel good, so hopefully its not permanent.
In the coming month I will be meeting with Cleveland's Kidney Transplant Team and hopefully walk away with a direction we are going in - whether it be dialysis or transplant or nothing. Just some answers and direction would be nice. I'm tired of the "lets wait and see." I also have appointment to get my skin cancer removed coming up. It originally had to be cancelled because of the hospital stay.
OUTSIDE of all my medical shizzz life has also had its pockets of crazy. 2017 has been a great year - overall! We started out rough and ended rough but that ride in the middle was beautiful! We successfully survived another year of marriage. We got to settle into our home even more - connected more with neighbors. Really starting to put some roots down. I got to celebrate my 5 year post lung transplant anniversary. We started fostering dogs. We got to be reminded just how AWESOME our families are. When we did hit some rough spots this year, our families were always there, in some way, to make everything better again. We know we are lucky and very grateful. But when everything seems to be going wrong and the world is dark, the light of our families pull us through every time.
2017 has been a great year. In 2018, things will change. New roads will be traveled on and we are ready. As long as I have Brian by my side and my family at my back I can do anything. I'm ready for anything. Its not "New Year, New Me." Its just a new year. A fresh start.
Lets do this 2018!
Breathe Easy
The past several months have been a little crazy. It all started back in September.... well I guess it initially started way back in July. I woke up 4th of July with crippling kidney pain. Turns out I have a kidney stone (its still in there) which cause an infection which created more injury to my kidneys - starting this lovely trend downward with my kidneys.
After that incident in July, I was relatively ok for the rest of the summer and early fall. Sometime in September I picked a bacterial infection. and for 4 months it created havoc for my body. I had everything from fevers, to no appetite, to throwing up, to extreme fatigue, to extreme dehydration, to edema (swelling).... on and off for months. Putting me in the Emergency Room this December.
That day I woke up with a slight fever of 99, took some Tylenol and it went away. But by the end of the day the fever was back with a vengeance and was at 103. I took more Tylenol hoping it would go away and by morning I would be better. Well the fever only dropped a little bit and around 3:30am i started to feel dizzy. so I did all the fighting i could at home and gave in and let Brian take me to the ER. Turns out I was dizzy because my blood pressure was so low, dangerously low, from dehydration. I also ended up having pneumonia in my lungs. All these things sent my kidneys into freak out mode even more and my kidney function sky rocketed.
Since getting released from the hospital I have ANOTHER brand new diet change. Low Potassium, Low Phosphorus, Low Calcium, Low Sodium, High Protein... while watching my sugar levels because they have been sky high lately. So I have a whole sheet of paper with approved foods on it. I never realized how picky of an eater I was until I was given this list. The toughest part is keeping food interesting, so I'm not eating the same thing everyday. I now take insulin daily - although we are still working out the kinks. I'm rarely "normal." Its either in the 400s or around 30. Its been fun. My pneumonia is gone. My lungs feel much better. However I was not happy with my last PFTs, because they showed a decline, to 26%. That's a 10% drop from where I was. Now this could just be from the pneumonia and it will bounce back - that's what I'm hoping for. But it could also be my new baseline because the pneumonia did too much damage. Only time will tell. A plus is that I feel good, so hopefully its not permanent.
In the coming month I will be meeting with Cleveland's Kidney Transplant Team and hopefully walk away with a direction we are going in - whether it be dialysis or transplant or nothing. Just some answers and direction would be nice. I'm tired of the "lets wait and see." I also have appointment to get my skin cancer removed coming up. It originally had to be cancelled because of the hospital stay.
OUTSIDE of all my medical shizzz life has also had its pockets of crazy. 2017 has been a great year - overall! We started out rough and ended rough but that ride in the middle was beautiful! We successfully survived another year of marriage. We got to settle into our home even more - connected more with neighbors. Really starting to put some roots down. I got to celebrate my 5 year post lung transplant anniversary. We started fostering dogs. We got to be reminded just how AWESOME our families are. When we did hit some rough spots this year, our families were always there, in some way, to make everything better again. We know we are lucky and very grateful. But when everything seems to be going wrong and the world is dark, the light of our families pull us through every time.
2017 has been a great year. In 2018, things will change. New roads will be traveled on and we are ready. As long as I have Brian by my side and my family at my back I can do anything. I'm ready for anything. Its not "New Year, New Me." Its just a new year. A fresh start.
Lets do this 2018!
Breathe Easy
Wednesday, November 8, 2017
Crazy few Months
Hello World!
Well Fall is always a crazy season for me. October is always full of Doctor visits which of course trickle into November. So a full medical recap:
I had some spots checked out on my face for skin cancer. They came back positive. So I will be having Mohs Surgery to remove it. I’ve had this before, almost 2 years ago or so. So I’m not that worried about it since I’ve been through it before. My lungs are looking good and stable - which is always great. I’m still considered in Chronic Rejection but I’m stable. For almost 2 months now I’ve been battling some kind of sickness. The Doctors have run every virus test they could and came up with nothing. We did several spetum cultures and swabs and really didn’t get anything back for a bacterial infection. Finally we just tried a basic blanket antibiotic- Augmented - it’s a penicillin based antibiotic and it seemed to have worked! So still not really sure what the sickness was. But the antibiotic worked. During that sickness I lost my appetite and felt nauseous most days so I lost a bunch of weight. I was also coughing so much I wasn’t getting any sleep and was severely sleep deprived and exhausted. I’m finally starting to get my appetite back and sleeping through the night again. As far as my kidneys go they are not good. I’m now in stage 4 chronic kidney failure. There’s only 5 stages. But basically I’m headed to dialysis or transplant or both. I’ll know more in the coming months as I have an appointment with a kidney specialist towards the end of November and then when I go back to Cleveland in early January I’m going to meet with their kidney transplant team. Because of the increased kidney issues I’m starting to see swelling in my face and my legs. Right now it’s thought to be fluid retention. A diet change - AGAIN - could be in order, I’m still waiting to get some blood tests back. I have my next check up in Cleveland in early January and I have a follow CF Clinic in December. All in all - crazy couple months but hopefully we start getting some answers so we can figure out the next step.
Other than medical stuff I’ve been really good. We started fostering puppies over the summer. That is a lot of fun. We’ve had 6 little ones come through our home so far and we are scheduled to get 2 more this week. Puppies are lot of fun but a lot of work. Bri and I also escaped for a weekend away to NY to attend a wedding. Even though it was only 1 night, it was so nice to get away. Nothing that new and exciting on the home front. Our 1 chicken, Mary Poopins, is doing well. We plan on getting more chicks in the spring. We are looking forward to the holidays and the coming months. I recently got to witness my sister-in-law run in her first ever marathon- that was pretty cool. She ran in the NYC Marathon on the Breathe Team supporting the CF Foundation. So very cool. I’m also working on getting a new Great Strides Walk site up in running in my hometown. Being sick I haven’t done as much as I wanted but now that I’m feeling better I’m back at it!
I’ll try and update more often! Thanks for all the thoughts, vibes, prayers, juju or whatever you send my way. I do appreciate it. Much Love!
Breathe Easy
Well Fall is always a crazy season for me. October is always full of Doctor visits which of course trickle into November. So a full medical recap:
I had some spots checked out on my face for skin cancer. They came back positive. So I will be having Mohs Surgery to remove it. I’ve had this before, almost 2 years ago or so. So I’m not that worried about it since I’ve been through it before. My lungs are looking good and stable - which is always great. I’m still considered in Chronic Rejection but I’m stable. For almost 2 months now I’ve been battling some kind of sickness. The Doctors have run every virus test they could and came up with nothing. We did several spetum cultures and swabs and really didn’t get anything back for a bacterial infection. Finally we just tried a basic blanket antibiotic- Augmented - it’s a penicillin based antibiotic and it seemed to have worked! So still not really sure what the sickness was. But the antibiotic worked. During that sickness I lost my appetite and felt nauseous most days so I lost a bunch of weight. I was also coughing so much I wasn’t getting any sleep and was severely sleep deprived and exhausted. I’m finally starting to get my appetite back and sleeping through the night again. As far as my kidneys go they are not good. I’m now in stage 4 chronic kidney failure. There’s only 5 stages. But basically I’m headed to dialysis or transplant or both. I’ll know more in the coming months as I have an appointment with a kidney specialist towards the end of November and then when I go back to Cleveland in early January I’m going to meet with their kidney transplant team. Because of the increased kidney issues I’m starting to see swelling in my face and my legs. Right now it’s thought to be fluid retention. A diet change - AGAIN - could be in order, I’m still waiting to get some blood tests back. I have my next check up in Cleveland in early January and I have a follow CF Clinic in December. All in all - crazy couple months but hopefully we start getting some answers so we can figure out the next step.
Other than medical stuff I’ve been really good. We started fostering puppies over the summer. That is a lot of fun. We’ve had 6 little ones come through our home so far and we are scheduled to get 2 more this week. Puppies are lot of fun but a lot of work. Bri and I also escaped for a weekend away to NY to attend a wedding. Even though it was only 1 night, it was so nice to get away. Nothing that new and exciting on the home front. Our 1 chicken, Mary Poopins, is doing well. We plan on getting more chicks in the spring. We are looking forward to the holidays and the coming months. I recently got to witness my sister-in-law run in her first ever marathon- that was pretty cool. She ran in the NYC Marathon on the Breathe Team supporting the CF Foundation. So very cool. I’m also working on getting a new Great Strides Walk site up in running in my hometown. Being sick I haven’t done as much as I wanted but now that I’m feeling better I’m back at it!
I’ll try and update more often! Thanks for all the thoughts, vibes, prayers, juju or whatever you send my way. I do appreciate it. Much Love!
Breathe Easy
Thursday, October 5, 2017
October is Check Up Month
Hello World!
Well October is always a month of doctors appointments. I had my CF Clinic appointment the other day. It didn’t go as well as I would of liked. My blood work came back all messed up. Kidney function was way off. Normal function level, I was told, is around 1.24. My levels came back at 2.43. Yikkeesss! Normal Liver function, again I was told, is about 1. Mine came back at 2.33. Yiiikkeeesss!!! Surprisingly my potassium level was still in the normal range since I have felt off for about a week. In the past when my potassium level was high I get this tingly burning sensation in my hands, feet and lips. And I have been experiencing this awful sensation everyday for about 5 days now. The problem is I get this same tingly, burning sensation when my Tacrolimis level is high as well. Tacrolimis is one of my anti rejection medications. A normal, for me, is 10-12. My level came back 23.6! Way high!!!! Too high. A toxic high. A plus during clinic my PFTs - lung function test - was at 37%. The highest it’s been in about a year! So I’ll take that!!!
So major dosage change with my Tacro. And more labs next week. The thought is once my Tacro gets back under control my liver and kidney functions will no back to my normal. If not, then we will do more tests. This high Tacro level is also messing with my pancreas and causeing me to have high blood sugars as well. Which means now I have to have a meeting with an endocrinologist about diabetes again. I’ve been down this road before - hopefully this is something that clears itself up as well.
I also have an appointment with a dermatologist this month. I have 2 spots on my face that I think could be skin cancer. I had a spot removed about 2 1/2 years ago on my face that was cancerous. And these look just like the one that was removed. Of course this appointment is like 4 days before I’m suppose to be attending a friends wedding - so hopefully I don’t look too much like Freddy Kruger.
And at the end of the month I have a Transplant Check up in Cleveland. Assuming we get everything figured out by then it will just be routine blood work, chest X-ray, lung function test and meet with my team. Should be a one night stay with no problems.
Overall I actually feel good. I had/have some kind of bug that knocked me down for a little bit with sinus pressure, chest tightness, coughing, sneezing, runny nose, and nausea - ya know the fun stuff! The only thing really left is a runny nose and I still don’t have much of an appetite. I was swabbbed for RSV at my CF Clinic. I’m still waiting for results. But the Drs are thinking it’ll be negative. I’m hoping that this sickness has run it’s course. Every winter I’m at a high risk of pneumonia so I don’t need to be down going into cold weather. If we get everything under control I can move on to the holiday months with no worries. That would be wonderful!!!
Breathe Easy
Well October is always a month of doctors appointments. I had my CF Clinic appointment the other day. It didn’t go as well as I would of liked. My blood work came back all messed up. Kidney function was way off. Normal function level, I was told, is around 1.24. My levels came back at 2.43. Yikkeesss! Normal Liver function, again I was told, is about 1. Mine came back at 2.33. Yiiikkeeesss!!! Surprisingly my potassium level was still in the normal range since I have felt off for about a week. In the past when my potassium level was high I get this tingly burning sensation in my hands, feet and lips. And I have been experiencing this awful sensation everyday for about 5 days now. The problem is I get this same tingly, burning sensation when my Tacrolimis level is high as well. Tacrolimis is one of my anti rejection medications. A normal, for me, is 10-12. My level came back 23.6! Way high!!!! Too high. A toxic high. A plus during clinic my PFTs - lung function test - was at 37%. The highest it’s been in about a year! So I’ll take that!!!
So major dosage change with my Tacro. And more labs next week. The thought is once my Tacro gets back under control my liver and kidney functions will no back to my normal. If not, then we will do more tests. This high Tacro level is also messing with my pancreas and causeing me to have high blood sugars as well. Which means now I have to have a meeting with an endocrinologist about diabetes again. I’ve been down this road before - hopefully this is something that clears itself up as well.
I also have an appointment with a dermatologist this month. I have 2 spots on my face that I think could be skin cancer. I had a spot removed about 2 1/2 years ago on my face that was cancerous. And these look just like the one that was removed. Of course this appointment is like 4 days before I’m suppose to be attending a friends wedding - so hopefully I don’t look too much like Freddy Kruger.
And at the end of the month I have a Transplant Check up in Cleveland. Assuming we get everything figured out by then it will just be routine blood work, chest X-ray, lung function test and meet with my team. Should be a one night stay with no problems.
Overall I actually feel good. I had/have some kind of bug that knocked me down for a little bit with sinus pressure, chest tightness, coughing, sneezing, runny nose, and nausea - ya know the fun stuff! The only thing really left is a runny nose and I still don’t have much of an appetite. I was swabbbed for RSV at my CF Clinic. I’m still waiting for results. But the Drs are thinking it’ll be negative. I’m hoping that this sickness has run it’s course. Every winter I’m at a high risk of pneumonia so I don’t need to be down going into cold weather. If we get everything under control I can move on to the holiday months with no worries. That would be wonderful!!!
Breathe Easy
Thursday, August 3, 2017
5 Year Check Up
Hello World!
Just had my 5 year check up with my Transplant team. Statistically speaking, only about 50% of lung transplant patients are still alive at 5 years. I know quite a few friends who didn't make 5 years and I know quite a few who are even farther out than 5 years. I'm oh so very thankful to still be here. Forever grateful to my donor.
I was hoping to see an increase or at least stability in my lung function. I also went to my appointment knowing I needed to bring up the issues I had been having in the last month with my kidneys. The lung function side of the appointment went great. I actually had a 2% increase. And in Lung Function Land we celebrate even the smallest improvements. It's better to be going up very slowly, then down at all. As for the kidney side - nothing good happened!
I figured I had a kidney stone. I've had one in the past and it felt the same. After my routine labs came back it showed my white blood cell count was sky high, we immediately knew I had a kidney infection. I also had a low grade fever - another sign of infection. So step 1 is control the infection and step 2 is to figure out if there is really a stone or just and infection. Step 3 would be if there is a stone, how do we get rid of it.
When dealing with Teams of doctors - it's a small group, so I don't always see the same pulmonologist. This particular Doctor in CLE, I have seen before. He's not my favorite. He's a great doctor, very knowledgeable and he's a nice guy. But He's possessive over his patients. If he sees you and diagnoses you with something - he likes to the run the show, he doesn't like input from other doctors. This doesn't work for me. I need someone who is open to working together with my CF team back here in NH. The other big thing he does - that I don't agree with - is his first line of defense for everything is a hospital admission. And my thought is it's so you are right there for him to watch over and control everything.
Now I've been called stubborn and hard headed before about medical stuff. But that's because - yes you are doctors and know more than me about these diseases and infections and such BUT I know more about ME than they ever will. I know what I'm capable of and I know all the pains and pings in my body. I've been honing this skill for 31 years. I will agree when I know a hospitalization is necessary - I've done it a million times. But I really felt like we were jumping the gun this time. And as a patient you need to fight for yourself, every time. I'm not trying to be a pain in the ass patient but I'm also not just going to sit back and blindly follow everything you say - I'm not a sheep.
He wanted to admit me immediately for my kidney infection. So I fought back against being admitted in CLE. I reluctantly agreed that I'd do an admission but I wanted to do it at home in NH. After some back and forth with my CF team in NH and the Transplant team in CLE we made a deal - I could come back to NH with the intention of being admitted through the ER immediately upon my return. And CLE would give me oral antibiotics in the mean time to hold me over. Now this is 1 night we're talking about. It's not like I was putting it off for a week or something. So we headed back home.
After 1 day of oral antibiotics I felt a thousand times better. No more pain, no more fever - so now I'm really annoyed at the thought of being admitted when oral antibiotics could work. I know it takes more than 1 day for antibiotics to take its full effect but improvement after 1 day is a good sign. So on our way home I talked to my CF team - who haven't even seen me, they've just been going off of what the CLE doctor said - and made a new deal with them. I could go home, not to the ER, and then the next day go for a CT scan of my kidneys to check for stones and then see them in person for an
appointment and go from there.
So after I got home, the next day I went in for my appointments. I do have a stone. BUT they don't think it's in my kidney. They think it's out side my kidney, more in my abdomen between my kidney and ovaries. So a little weird that I had back pain and not abdominal pain. Further blood work also showed that my white blood cell count was going down. So the oral antibiotics were working for the infection. After another long day at the doctors it was decided that I'll continue the oral antibiotics for another week and a half, no hospital, more blood work in a week, and as long as the stone doesn't move and cause me more pain we will leave it alone for now. And since they are pretty sure the stone is calcium based stone, a new diet change.
Eventually I may have to have the stone removed but at this very moment my creatinine level is 1.7, most likely because of the infection. A normal level is less than 1 and my normal level is about 1.2. So the next test they want to do once my level goes back down is another CT Scan but with contrast. Contrast makes your insides glow during a CT Scan but it can be hard on the kidneys.
As for the diet change... again! I now have to be careful about the amount of calcium I consume. I'm taking in too much for my kidneys to process and that's where the stones come in. So calcium is limited and potassium is still limited because my kidneys can't process that very well either. The biggest change with watching my calcium is going to be my Milk intake. And anyone who knows me, knows I can easily drink a gallon of milk a day on my own. Love milk. I also have to be more vigilant that I'm still eating enough protein and fat, since a big portion of the fat and protein in my diet was coming from milk. I only drink whole milk. Less milk, cheese, broccoli, potatoes...😠They keep limiting my favorite things!
Overall my 5 year check up went well. Lungs are looking stable and kidneys, well, they are still a work in progress. There maybe a time in my life where a kidney transplant is necessary because my kidneys will stop working all together. Right now, I have stage 3 kidney failure, they are working at about 40% of normal. A possible kidney transplant is something I've known that I might need since I had my lung transplant. Unfortunately they do tend to go hand in hand. Many lung transplant patients also have had a kidney transplant. It's just the way those magical antirejection medications work.
But for now me and my broken and recycled parts are doing just fine. Going back to work part time and trying to enjoy the rest of the summer. Next up, more possible skin cancer, I have an appointment to get that checked out soon! The ride never ends!
Breathe Easy
Just had my 5 year check up with my Transplant team. Statistically speaking, only about 50% of lung transplant patients are still alive at 5 years. I know quite a few friends who didn't make 5 years and I know quite a few who are even farther out than 5 years. I'm oh so very thankful to still be here. Forever grateful to my donor.
I was hoping to see an increase or at least stability in my lung function. I also went to my appointment knowing I needed to bring up the issues I had been having in the last month with my kidneys. The lung function side of the appointment went great. I actually had a 2% increase. And in Lung Function Land we celebrate even the smallest improvements. It's better to be going up very slowly, then down at all. As for the kidney side - nothing good happened!
I figured I had a kidney stone. I've had one in the past and it felt the same. After my routine labs came back it showed my white blood cell count was sky high, we immediately knew I had a kidney infection. I also had a low grade fever - another sign of infection. So step 1 is control the infection and step 2 is to figure out if there is really a stone or just and infection. Step 3 would be if there is a stone, how do we get rid of it.
When dealing with Teams of doctors - it's a small group, so I don't always see the same pulmonologist. This particular Doctor in CLE, I have seen before. He's not my favorite. He's a great doctor, very knowledgeable and he's a nice guy. But He's possessive over his patients. If he sees you and diagnoses you with something - he likes to the run the show, he doesn't like input from other doctors. This doesn't work for me. I need someone who is open to working together with my CF team back here in NH. The other big thing he does - that I don't agree with - is his first line of defense for everything is a hospital admission. And my thought is it's so you are right there for him to watch over and control everything.
Now I've been called stubborn and hard headed before about medical stuff. But that's because - yes you are doctors and know more than me about these diseases and infections and such BUT I know more about ME than they ever will. I know what I'm capable of and I know all the pains and pings in my body. I've been honing this skill for 31 years. I will agree when I know a hospitalization is necessary - I've done it a million times. But I really felt like we were jumping the gun this time. And as a patient you need to fight for yourself, every time. I'm not trying to be a pain in the ass patient but I'm also not just going to sit back and blindly follow everything you say - I'm not a sheep.
He wanted to admit me immediately for my kidney infection. So I fought back against being admitted in CLE. I reluctantly agreed that I'd do an admission but I wanted to do it at home in NH. After some back and forth with my CF team in NH and the Transplant team in CLE we made a deal - I could come back to NH with the intention of being admitted through the ER immediately upon my return. And CLE would give me oral antibiotics in the mean time to hold me over. Now this is 1 night we're talking about. It's not like I was putting it off for a week or something. So we headed back home.
After 1 day of oral antibiotics I felt a thousand times better. No more pain, no more fever - so now I'm really annoyed at the thought of being admitted when oral antibiotics could work. I know it takes more than 1 day for antibiotics to take its full effect but improvement after 1 day is a good sign. So on our way home I talked to my CF team - who haven't even seen me, they've just been going off of what the CLE doctor said - and made a new deal with them. I could go home, not to the ER, and then the next day go for a CT scan of my kidneys to check for stones and then see them in person for an
appointment and go from there.
So after I got home, the next day I went in for my appointments. I do have a stone. BUT they don't think it's in my kidney. They think it's out side my kidney, more in my abdomen between my kidney and ovaries. So a little weird that I had back pain and not abdominal pain. Further blood work also showed that my white blood cell count was going down. So the oral antibiotics were working for the infection. After another long day at the doctors it was decided that I'll continue the oral antibiotics for another week and a half, no hospital, more blood work in a week, and as long as the stone doesn't move and cause me more pain we will leave it alone for now. And since they are pretty sure the stone is calcium based stone, a new diet change.
Eventually I may have to have the stone removed but at this very moment my creatinine level is 1.7, most likely because of the infection. A normal level is less than 1 and my normal level is about 1.2. So the next test they want to do once my level goes back down is another CT Scan but with contrast. Contrast makes your insides glow during a CT Scan but it can be hard on the kidneys.
As for the diet change... again! I now have to be careful about the amount of calcium I consume. I'm taking in too much for my kidneys to process and that's where the stones come in. So calcium is limited and potassium is still limited because my kidneys can't process that very well either. The biggest change with watching my calcium is going to be my Milk intake. And anyone who knows me, knows I can easily drink a gallon of milk a day on my own. Love milk. I also have to be more vigilant that I'm still eating enough protein and fat, since a big portion of the fat and protein in my diet was coming from milk. I only drink whole milk. Less milk, cheese, broccoli, potatoes...😠They keep limiting my favorite things!
Overall my 5 year check up went well. Lungs are looking stable and kidneys, well, they are still a work in progress. There maybe a time in my life where a kidney transplant is necessary because my kidneys will stop working all together. Right now, I have stage 3 kidney failure, they are working at about 40% of normal. A possible kidney transplant is something I've known that I might need since I had my lung transplant. Unfortunately they do tend to go hand in hand. Many lung transplant patients also have had a kidney transplant. It's just the way those magical antirejection medications work.
But for now me and my broken and recycled parts are doing just fine. Going back to work part time and trying to enjoy the rest of the summer. Next up, more possible skin cancer, I have an appointment to get that checked out soon! The ride never ends!
Breathe Easy
Saturday, July 22, 2017
5 Years
Hello World!
I am forever grateful for their decision. Their last selfless act in this life was my new beginning. While it's been a bumpy 5 years. Statistically speaking only 50% of lung transplant patients are still alive at 5 years. I don't like statistics. Statistically speaking I should have already died 3 times. I don't like when people tell me I can't do something - call it hard headed, call it courageous - I don't care. I'm not looking to be one of your statistics.
Because of my Donor's selfless act I've been able to do a lot of things I had written off. Getting married for 1, buying a house, the possibility of a family. While it's not all a bed of roses and I'm currently battling chronic rejection - I'm not giving up. I've gotten a taste of the good life and I'm not ready to give it up. I hope to be able to celebrate 10 years post transplant.
Everyday is a gift. I know, cheesy, but it's true. Your body is valuable, take care of it. A 'thank you' will never be enough - it never has been. Everyday I get to live this life is because someone else decided they wanted to live on once it was their time to go. So I plan to do that. Live on. Keep going. Even if my speed is a lot slower than others, forward is still forward. All my days also belong to my donor. Together we have accomplished great things. And together we will accomplish so much more.
Here's to you, my donor, and all you have done for me. 5 years.
Breathe Easy
Today makes 5 years. 5 bonus years in this life.
5 years ago I was laid up in the hospital with a CF exacerbation for the umteenth time. My typical routine was 2-3 weeks in the hospital and 1 week out. I weighed about 80lbs and my lung function was about 13-15% depending the day. I sat around on 8-12 liters of continuous flow oxygen with my heart rate resting at 130-140. I used a wheelchair for most of my traveling. I ate most of my food through a tube that ran almost 24/7. I needed help bathing, getting dressed. I could no longer drive. I was barely allowed to be alone. Transplant was really my only option.
I'm asked all the time about my donor, and whether I know who it is or not. A while back I wrote a letter to my donor's family. It took me a long time to write it. I have never heard back from them - and that's ok. I said what I needed to say and I left it up to them if they wanted any kind of connection. So I don't have any idea who my donor is.
I'm asked all the time about my donor, and whether I know who it is or not. A while back I wrote a letter to my donor's family. It took me a long time to write it. I have never heard back from them - and that's ok. I said what I needed to say and I left it up to them if they wanted any kind of connection. So I don't have any idea who my donor is.
I am forever grateful for their decision. Their last selfless act in this life was my new beginning. While it's been a bumpy 5 years. Statistically speaking only 50% of lung transplant patients are still alive at 5 years. I don't like statistics. Statistically speaking I should have already died 3 times. I don't like when people tell me I can't do something - call it hard headed, call it courageous - I don't care. I'm not looking to be one of your statistics.
Because of my Donor's selfless act I've been able to do a lot of things I had written off. Getting married for 1, buying a house, the possibility of a family. While it's not all a bed of roses and I'm currently battling chronic rejection - I'm not giving up. I've gotten a taste of the good life and I'm not ready to give it up. I hope to be able to celebrate 10 years post transplant.
Everyday is a gift. I know, cheesy, but it's true. Your body is valuable, take care of it. A 'thank you' will never be enough - it never has been. Everyday I get to live this life is because someone else decided they wanted to live on once it was their time to go. So I plan to do that. Live on. Keep going. Even if my speed is a lot slower than others, forward is still forward. All my days also belong to my donor. Together we have accomplished great things. And together we will accomplish so much more.
Here's to you, my donor, and all you have done for me. 5 years.
Breathe Easy
Monday, April 10, 2017
I May Whine About It
Hello World!
As I dive into my newly hatched work out plan I immediately hit a giant wall. Oh yeah, That's right - my lungs suck - breathing while exerting myself is really really really hard. Dang. So the smooth plan I came up with has been quite bumpy already. The elliptical is kicking my butt... Hard. Even while I give myself that extra oxygen flow with my home concentrator pumping an extra up to 5 liters of O2 in me, my O2 levels are still way down to 82/83 percent. Now the normal is 99/100. So big difference. One of the best ways I can describe it to you is next time you work out or exert yourself - put a clothes pin on your nose and then only breath through a straw. That will give you an idea of how my lungs work. I would love to quit! But, how am I going to reach my goal with an attitude like that. So I drudge on.
I'm glad I workout alone in the mornings so I can yell in frustration, swear I'm never doing this again, sometimes shed a few years of anger, yell about how unfair things are and what did I do to deserve this, whine like a toddler that everything sucks. All these things I'm feeling are totally normal. And this is a great outlet to get out all that frustration. It's not easy. But the next day, I stair at my enemy (the elliptical) and say "let's get this over with." It's like a weird torcherous game I just keep putting myself through. 🤔. So if you have any advice that helps you get through those days you are ready to throw in the towel, leave them in the comments. I'll take all the tips and tricks I can.
This week I finally get to implement my afternoon walks as the weather is finally sunny and out! Last week I didn't get one walk in because it literally rained everyday and was still in the 30s. Here's hoping the walk later today goes smoother than that dang elliptical!
In other health news, I just completed my 2nd to last IVIG infusion. While I don't really feel like they are doing a whole lot, the Cleveland team and I decided that since I only had 2 left to just go ahead and do them - can't hurt. So I only have 1 left in May then we wait to see what my lung function does without it. I think it will either get better or stay the same. It better not go back down! In 1 month I go back for a CF clinic visit. We will do PFTs (lung function test) then and I will get an idea of how I'm doing since my April 1st check up in Cleveland.
Outside of the health world, I've started taking online classes for Medical Coding and Billing. Once I complete this course I will be able to find myself a new job. The idea behind taking these online classes is so I can work from home. A job from home will give that flexibility I need with frequent doctor visits and such while still being able to earn money and feel valuable. It's an exciting new chapter. Good things come to those who work hard and not give up.
I may whine about- but not give up.
Breathe Easy
As I dive into my newly hatched work out plan I immediately hit a giant wall. Oh yeah, That's right - my lungs suck - breathing while exerting myself is really really really hard. Dang. So the smooth plan I came up with has been quite bumpy already. The elliptical is kicking my butt... Hard. Even while I give myself that extra oxygen flow with my home concentrator pumping an extra up to 5 liters of O2 in me, my O2 levels are still way down to 82/83 percent. Now the normal is 99/100. So big difference. One of the best ways I can describe it to you is next time you work out or exert yourself - put a clothes pin on your nose and then only breath through a straw. That will give you an idea of how my lungs work. I would love to quit! But, how am I going to reach my goal with an attitude like that. So I drudge on.
I'm glad I workout alone in the mornings so I can yell in frustration, swear I'm never doing this again, sometimes shed a few years of anger, yell about how unfair things are and what did I do to deserve this, whine like a toddler that everything sucks. All these things I'm feeling are totally normal. And this is a great outlet to get out all that frustration. It's not easy. But the next day, I stair at my enemy (the elliptical) and say "let's get this over with." It's like a weird torcherous game I just keep putting myself through. 🤔. So if you have any advice that helps you get through those days you are ready to throw in the towel, leave them in the comments. I'll take all the tips and tricks I can.
This week I finally get to implement my afternoon walks as the weather is finally sunny and out! Last week I didn't get one walk in because it literally rained everyday and was still in the 30s. Here's hoping the walk later today goes smoother than that dang elliptical!
In other health news, I just completed my 2nd to last IVIG infusion. While I don't really feel like they are doing a whole lot, the Cleveland team and I decided that since I only had 2 left to just go ahead and do them - can't hurt. So I only have 1 left in May then we wait to see what my lung function does without it. I think it will either get better or stay the same. It better not go back down! In 1 month I go back for a CF clinic visit. We will do PFTs (lung function test) then and I will get an idea of how I'm doing since my April 1st check up in Cleveland.
Outside of the health world, I've started taking online classes for Medical Coding and Billing. Once I complete this course I will be able to find myself a new job. The idea behind taking these online classes is so I can work from home. A job from home will give that flexibility I need with frequent doctor visits and such while still being able to earn money and feel valuable. It's an exciting new chapter. Good things come to those who work hard and not give up.
I may whine about- but not give up.
Breathe Easy
Tuesday, April 4, 2017
Celebrate the Small Victories
Hello World!
So I haven't said much - health wise - lately because I didn't want to jinx myself. But since about mid February I have been feeling really well. It was super weird, I just woke up one morning and I just felt Good. And feeling Good isn't something I've felt in months!! So I've been patiently waiting for something else to go wrong. And here I am, almost 2 months later and my latest lung function test shows a 3% improvement! How about that - 3%! Hard work pays off.
Now 3% isn't a lot but we have to celebrate the small victories. My tests are FINALLY moving in the right direction. I really wasn't sure what I was going to do if the results were worse. With that being said, it's time to institute a strict routine. Over the last couple months I've been better about exercise but with the winter weather it's really hard to stay on track. 1 cold, crummy day can throw you off for days. As we move towards spring and nicer weather, it's time to kick it up a notch. I'm going to go from exercising once a day to twice. I have my elliptical that I will use in the mornings and in the afternoons, Brian and I are going to start going on daily walks. These daily walks will be good for everyone in the family, me, Bri and the dogs. We've all been cooped up inside all winter. Time to get out there and enjoy the season!
I plan on using this trip to Cleveland as my starting bench mark. I have to go back in 3 months. So in 3 months my goal is 5-10% lung function improvement. I really hate being put in a box and told how things are - so if I can prove Doctors wrong and raise that function I'll be on cloud 9! It wouldn't be the first time that doctors tried to tell me how things are and that they won't change and I did it anyway - I wasn't suppose to survive the coma I was in for 45 days, not only did I come out of that I was out of the hospital 11 days later. Don't live life with limits. You can ALWAYS do more.
In the other parts of my life as we move towards spring Brian and I are getting ready to build our very first goat pen! We are also looking into getting some chickens and ducks. I'm also going to try my hand at gardening. We are thinking about planting some apple trees. We already have kiwi vines and blueberry bushes on our property. We are trying to move towards a more sustainable way of life. We are by no means going "off the grid." I might die without my junk reality TV. But we are working towards raising our own meat and crops - homesteading - and eventually have solar power. Be more independent. Next year we are going to make our own maple syrup! Which for me will be a first, I can't believe I've lived in New Hampshire my whole life and I've never tried making my own syrup! Both of us like the idea of farm life and we plan on turning our little piece of earth into our safe haven for of us to grow old together on.
We aren't stopping or slowing down at all. Having these big plans for our future helps me keep my feet on the ground and pushing forward. I'm not going to let my medical circumstance dictate how I live my life. I Can't wait! Bring on change!!
Breathe Easy
So I haven't said much - health wise - lately because I didn't want to jinx myself. But since about mid February I have been feeling really well. It was super weird, I just woke up one morning and I just felt Good. And feeling Good isn't something I've felt in months!! So I've been patiently waiting for something else to go wrong. And here I am, almost 2 months later and my latest lung function test shows a 3% improvement! How about that - 3%! Hard work pays off.
Now 3% isn't a lot but we have to celebrate the small victories. My tests are FINALLY moving in the right direction. I really wasn't sure what I was going to do if the results were worse. With that being said, it's time to institute a strict routine. Over the last couple months I've been better about exercise but with the winter weather it's really hard to stay on track. 1 cold, crummy day can throw you off for days. As we move towards spring and nicer weather, it's time to kick it up a notch. I'm going to go from exercising once a day to twice. I have my elliptical that I will use in the mornings and in the afternoons, Brian and I are going to start going on daily walks. These daily walks will be good for everyone in the family, me, Bri and the dogs. We've all been cooped up inside all winter. Time to get out there and enjoy the season!
I plan on using this trip to Cleveland as my starting bench mark. I have to go back in 3 months. So in 3 months my goal is 5-10% lung function improvement. I really hate being put in a box and told how things are - so if I can prove Doctors wrong and raise that function I'll be on cloud 9! It wouldn't be the first time that doctors tried to tell me how things are and that they won't change and I did it anyway - I wasn't suppose to survive the coma I was in for 45 days, not only did I come out of that I was out of the hospital 11 days later. Don't live life with limits. You can ALWAYS do more.
In the other parts of my life as we move towards spring Brian and I are getting ready to build our very first goat pen! We are also looking into getting some chickens and ducks. I'm also going to try my hand at gardening. We are thinking about planting some apple trees. We already have kiwi vines and blueberry bushes on our property. We are trying to move towards a more sustainable way of life. We are by no means going "off the grid." I might die without my junk reality TV. But we are working towards raising our own meat and crops - homesteading - and eventually have solar power. Be more independent. Next year we are going to make our own maple syrup! Which for me will be a first, I can't believe I've lived in New Hampshire my whole life and I've never tried making my own syrup! Both of us like the idea of farm life and we plan on turning our little piece of earth into our safe haven for of us to grow old together on.
We aren't stopping or slowing down at all. Having these big plans for our future helps me keep my feet on the ground and pushing forward. I'm not going to let my medical circumstance dictate how I live my life. I Can't wait! Bring on change!!
Breathe Easy
Thursday, February 23, 2017
Got to Start Somewhere
Hello World!
So about a week ago I celebrated my 31st birthday and Brian celebrated his 35th! It was wonderful! Since Brian and I's birthdays are only 10 days apart we basically celebrate in little bits for 10 days. We had a nice family dinner one night with people from both sides of the family, we went to see The Blue Man group in Boston, had a lunch out with some friends, and splurged for a new PlayStation 4. All in all we both had great birthdays!
As for my health, about a week ago I woke up feeling great. Like better than I have in a long time. I'm not exactly sure why. I'm only on 1 new medication, symbacort - which I really don't think would cause this big change. I'm on schedule to see my CF team for a clinic on March 13th. I'm hoping when I do my lung function test that day it reflects how I feel. I would LOVE to see an increase in my numbers. Or if nothing else it stays the same, I don't know what I'll do if I see it drop again. That being said, my CF team has always told me - as well as my transplant team - it's not always about the numbers. How I FEEL means more than anything else. So I'll take this great feeling and run with it. The best thing I can do is while my lungs feel good - work my muscles! That means back on the elliptical. I'm nervous but ready. Got to start somewhere right?
No other news really. Just going day to day at the moment. With the weather this week being in the low 60s I'm so ready for spring and summer. Longer days with bright warm sunshine is what I crave. Working on our future goat pen is a project I'm excited to get into this spring. Along with planning a party for my 5th year anniversary for my lung transplant. Looking forward for the coming events.
Breathe Easy
So about a week ago I celebrated my 31st birthday and Brian celebrated his 35th! It was wonderful! Since Brian and I's birthdays are only 10 days apart we basically celebrate in little bits for 10 days. We had a nice family dinner one night with people from both sides of the family, we went to see The Blue Man group in Boston, had a lunch out with some friends, and splurged for a new PlayStation 4. All in all we both had great birthdays!
As for my health, about a week ago I woke up feeling great. Like better than I have in a long time. I'm not exactly sure why. I'm only on 1 new medication, symbacort - which I really don't think would cause this big change. I'm on schedule to see my CF team for a clinic on March 13th. I'm hoping when I do my lung function test that day it reflects how I feel. I would LOVE to see an increase in my numbers. Or if nothing else it stays the same, I don't know what I'll do if I see it drop again. That being said, my CF team has always told me - as well as my transplant team - it's not always about the numbers. How I FEEL means more than anything else. So I'll take this great feeling and run with it. The best thing I can do is while my lungs feel good - work my muscles! That means back on the elliptical. I'm nervous but ready. Got to start somewhere right?
No other news really. Just going day to day at the moment. With the weather this week being in the low 60s I'm so ready for spring and summer. Longer days with bright warm sunshine is what I crave. Working on our future goat pen is a project I'm excited to get into this spring. Along with planning a party for my 5th year anniversary for my lung transplant. Looking forward for the coming events.
Breathe Easy
Saturday, February 4, 2017
It's Official
Hello World!
Well it's official I am in Chronic Rejection.
So what does that mean... well.... the blunt answer, my donor lungs are failing. But there are still a lot of things up in the air.
I just had another appointment in Cleveland. My lung function was stable at 28%. While that's not really where I would like it to be, it's better than hearing it went down again. While out there I had an oximetry test done. It's a test where they see what your oxygen levels do while you are being active. This test showed that I need to be on oxygen when I'm out and about doing things. I'm also going to need oxygen when I sleep at night. I'm not excited about having my old friend back. However - I'm hoping the oxygen at night will help me sleep better and ultimately give me more energy.
There really isn't a whole lot left to try, the rejection has made itself at home and it's not going anywhere. So we are now in Maintenance Mode. EVENTUALLY I will be listed for another transplant, but we are not there yet. My Drs exact words were "lets milk these lungs for as long as we can." A 2nd lung transplant is complicated and not done that often. There is no telling how long it'll be before they list me or how long it'll be before I need oxygen all the time. Life just doesn't give you those answers.
I'm not sure what was worse, hearing that my body is failing, and well we know what that leads to, at 22 years old or 30 years old. I think this time around it's mentally tougher to deal with. I had already knew where my life was headed at 18, I accepted that. I accepted that I would probably never marry or live on my own or even see 30. It just didn't seem in the cards for me. Now, I have an amazing husband, a house of my own, I got my life back. Just this past Summer I was hiking up a mountain - now stairs are my worst enemy. So dealing with this drastic change has been a lot harder this time around. I got a taste of the good life and I'm not ready to give that up.
That being said, if you know me, you know I'm just going to keep doing me. I learned a long time ago that if I want to do it, I can - even if I'm slower at it or it takes me longer or I have to ask for help. I'm not going to live in a bubble. I'm still going to go out and enjoy life. I'm so grateful for the past 4 1/2 years of awesome health - I would of been gone a long time ago if it wasn't for my donor. These bonus years have been amazing and I'm not done living yet. I may have bad days or feel depressed sometimes but at the end of the day when I close my eyes, its a way to reenergize and start over.
And to the questions I get asked most often...
- "What's next." I have no answer for this. I don't know. I'm just going to take it a day or week at a time. That's all I can do. I can't dwell on the negative- that's physically and emotionally draining.
-"How are you doing/feeling" - I'm fine. I'm feeling good. I'll let you know when and if I'm not feeling good.
- "What can I/we do?" Nothing. There is nothing anyone can do - this is just my life.
I appreciate the worry and love everyone has for me. But I'm not made of glass, I'm not on the verge of breaking. Please, don't worry so much. My Dad told me a long time ago - Until they invent time machines, if you can't change it, don't stress about it. And I live by those words. I try not to let too many things bother me. I'm still going to laugh everyday. I'm still going to go to work. I'm still going to do things that make people say "should you be doing that?" I'm still going to be me - I don't know how to be anything else. I'm always willing to answer or at least try to answer any questions you might have about CF or Transplant. I'm an open book, 95% of the time.
Breathe Easy
Well it's official I am in Chronic Rejection.
So what does that mean... well.... the blunt answer, my donor lungs are failing. But there are still a lot of things up in the air.
I just had another appointment in Cleveland. My lung function was stable at 28%. While that's not really where I would like it to be, it's better than hearing it went down again. While out there I had an oximetry test done. It's a test where they see what your oxygen levels do while you are being active. This test showed that I need to be on oxygen when I'm out and about doing things. I'm also going to need oxygen when I sleep at night. I'm not excited about having my old friend back. However - I'm hoping the oxygen at night will help me sleep better and ultimately give me more energy.
There really isn't a whole lot left to try, the rejection has made itself at home and it's not going anywhere. So we are now in Maintenance Mode. EVENTUALLY I will be listed for another transplant, but we are not there yet. My Drs exact words were "lets milk these lungs for as long as we can." A 2nd lung transplant is complicated and not done that often. There is no telling how long it'll be before they list me or how long it'll be before I need oxygen all the time. Life just doesn't give you those answers.
I'm not sure what was worse, hearing that my body is failing, and well we know what that leads to, at 22 years old or 30 years old. I think this time around it's mentally tougher to deal with. I had already knew where my life was headed at 18, I accepted that. I accepted that I would probably never marry or live on my own or even see 30. It just didn't seem in the cards for me. Now, I have an amazing husband, a house of my own, I got my life back. Just this past Summer I was hiking up a mountain - now stairs are my worst enemy. So dealing with this drastic change has been a lot harder this time around. I got a taste of the good life and I'm not ready to give that up.
That being said, if you know me, you know I'm just going to keep doing me. I learned a long time ago that if I want to do it, I can - even if I'm slower at it or it takes me longer or I have to ask for help. I'm not going to live in a bubble. I'm still going to go out and enjoy life. I'm so grateful for the past 4 1/2 years of awesome health - I would of been gone a long time ago if it wasn't for my donor. These bonus years have been amazing and I'm not done living yet. I may have bad days or feel depressed sometimes but at the end of the day when I close my eyes, its a way to reenergize and start over.
And to the questions I get asked most often...
- "What's next." I have no answer for this. I don't know. I'm just going to take it a day or week at a time. That's all I can do. I can't dwell on the negative- that's physically and emotionally draining.
-"How are you doing/feeling" - I'm fine. I'm feeling good. I'll let you know when and if I'm not feeling good.
- "What can I/we do?" Nothing. There is nothing anyone can do - this is just my life.
I appreciate the worry and love everyone has for me. But I'm not made of glass, I'm not on the verge of breaking. Please, don't worry so much. My Dad told me a long time ago - Until they invent time machines, if you can't change it, don't stress about it. And I live by those words. I try not to let too many things bother me. I'm still going to laugh everyday. I'm still going to go to work. I'm still going to do things that make people say "should you be doing that?" I'm still going to be me - I don't know how to be anything else. I'm always willing to answer or at least try to answer any questions you might have about CF or Transplant. I'm an open book, 95% of the time.
Breathe Easy
Tuesday, January 17, 2017
Ready to Catch that Break
Hello World!
Well 2017 is not going the way it should. My health is SOOOOO not cooperating. My infusions of IVIG are going just fine. Not fun, but fine. However I don't think they are working. I had CF Clinic yesterday and my lung function is down another 12%. FANTASTIC! That puts my wonderful lungs working at a total of 28% of normal.... 28%!!!!
This sucks! I thought for sure it was going to show I improved or at least was staying the same. I feel better, not great, but better still. So I'm beyond frustrated with nothing working. My lungs were 76% in June... now 28. WHY?!? That is not ok. I just want some answers. I know the world of transplant and CF a lot of the time is trial and error to figure out what works best. But its so frustrating - the unknown.
I'm trying to stay positive and see the silver lining but I'm in too much of a fog right now. With talks of needing supplemental oxygen again - looks like the next step - to possibly needing a 2nd lung transplant - which I'm told is rare to even be able to qualify for 1, let alone get 1. I can feel the depression and anxiety setting in every time I visit the doctors.
This year was suppose to be the year Brian and I look into starting a family - my health puts all that on the back burner. I'm suppose to celebrate 5 years of my transplant... which I do plan to do, but now all I can think is "will I even be healthy enough to enjoy it."
Life is hard. I'm exhausted most of the time. Doing ANYTHING - shower, laundry, the stairs, walking long distances - it makes my Oxygen level drop to 90-92. Normal is 99-100. If it starts to drop below 90... which it has a couple of times,.. I'm going to have to go back on supplemental oxygen. An old friend I don't wish to see again.
Every transplant patient knows rejection will eventually catch up to them. How long that takes is different for every person. There are a lot of factors that goes into rejection from how well the organ matched the patient, to the compliance of the patient, to the organ that was transplanted, to what bugs you catch and fight off - a number of things. So in the back of my mind I knew this would happen one day. I just wasn't ready for it to happen now. And to happen so fast.
I go back to Cleveland February 2nd. Not sure how that appointment will go. Answers would be nice but I'm not holding my breath. There are talks of possibly more Rotuxin (chemo), or more Aparesis (not sure if that's spelt right, but the blood filtering thing). But I'm ready to try something new. I know there are a few more options we can try. I'm not giving up yet. I'm frustrated and angry about the situation but not giving up.
So my glove is wide open, Life I'm ready to catch that break!
Breathe Easy
Well 2017 is not going the way it should. My health is SOOOOO not cooperating. My infusions of IVIG are going just fine. Not fun, but fine. However I don't think they are working. I had CF Clinic yesterday and my lung function is down another 12%. FANTASTIC! That puts my wonderful lungs working at a total of 28% of normal.... 28%!!!!
This sucks! I thought for sure it was going to show I improved or at least was staying the same. I feel better, not great, but better still. So I'm beyond frustrated with nothing working. My lungs were 76% in June... now 28. WHY?!? That is not ok. I just want some answers. I know the world of transplant and CF a lot of the time is trial and error to figure out what works best. But its so frustrating - the unknown.
I'm trying to stay positive and see the silver lining but I'm in too much of a fog right now. With talks of needing supplemental oxygen again - looks like the next step - to possibly needing a 2nd lung transplant - which I'm told is rare to even be able to qualify for 1, let alone get 1. I can feel the depression and anxiety setting in every time I visit the doctors.
This year was suppose to be the year Brian and I look into starting a family - my health puts all that on the back burner. I'm suppose to celebrate 5 years of my transplant... which I do plan to do, but now all I can think is "will I even be healthy enough to enjoy it."
Life is hard. I'm exhausted most of the time. Doing ANYTHING - shower, laundry, the stairs, walking long distances - it makes my Oxygen level drop to 90-92. Normal is 99-100. If it starts to drop below 90... which it has a couple of times,.. I'm going to have to go back on supplemental oxygen. An old friend I don't wish to see again.
Every transplant patient knows rejection will eventually catch up to them. How long that takes is different for every person. There are a lot of factors that goes into rejection from how well the organ matched the patient, to the compliance of the patient, to the organ that was transplanted, to what bugs you catch and fight off - a number of things. So in the back of my mind I knew this would happen one day. I just wasn't ready for it to happen now. And to happen so fast.
I go back to Cleveland February 2nd. Not sure how that appointment will go. Answers would be nice but I'm not holding my breath. There are talks of possibly more Rotuxin (chemo), or more Aparesis (not sure if that's spelt right, but the blood filtering thing). But I'm ready to try something new. I know there are a few more options we can try. I'm not giving up yet. I'm frustrated and angry about the situation but not giving up.
So my glove is wide open, Life I'm ready to catch that break!
Breathe Easy
Thursday, December 15, 2016
Can't Catch a Break
Hello World!
Well it's been up and down the past couple weeks. I had a couple of days with low grade fevers. Coughing a lot, but not productive. So that gave me a sore throat and my voice sounded like a dragon. Lost my appetite for a few days. And that was all before I went out to Cleveland for my hospital follow up.
Went out to Cleveland this week for my hospital follow up. I wasn't really expecting great news, but I wasn't expecting for everything to be way worse! My lung function is down another 9%. I'm now at 40% of normal lung function for a person of my age. What the heck?!?!?! So I have no real news on what we are doing. They took some sputum and blood and they are running tests to see if they can find an infection - virus, bacteria or fungus. I got another round of chemo. Which is good and bad. It's suppose to help kill the bad antibodies in my body right now which is good, but it's killing my immune system even more which is not good and makes me more likely to catch something.
The hardest part is just hearing "We aren't really sure yet." It's too early to tell if the Rotuxin and the IVIG are helping the way they are suppose too. But with my numbers dropping still we have to start looking for another possible answer. That is by far the most frustrating thing. I just want an answer with a plan. This waiting in limbo sucks.
So as I wait for my results back from Cleveland I'll dive back into my routine. Work 2 days a week. I'm so grateful for Brian. He does so much for me. I'm not sure where I'd be without him. He works his butt off for us and then when he comes home he helps me around the house. If I'm not feeling well he takes over everything. He is the best husband. He gets it. He pushes me and encourages me to do as much as I can. At the same time he helps me whenever things get to overwhelming. I don't think he gets how much I rely on him. He is a just some kind of wonderful.
Relationships are already hard. But when you add a chronic terminal illness to the mix, that's really hard. I know Brian had no idea what he was really getting into. But I'm so thankful he has stuck around. With every new challenge we come across - which our first major challenge was 2 months into dating - instead of running away, he steps up in full force.
Here's hoping the holidays will come and go with no major events. I'm scheduled to go back out to Cleveland end of January/Early February. Until then I'm trying to stay as healthy as possible. I don't need my lung function going down any further. Instead answers as to why would be a lovely Christmas gift,
Breathe Easy
Well it's been up and down the past couple weeks. I had a couple of days with low grade fevers. Coughing a lot, but not productive. So that gave me a sore throat and my voice sounded like a dragon. Lost my appetite for a few days. And that was all before I went out to Cleveland for my hospital follow up.
Went out to Cleveland this week for my hospital follow up. I wasn't really expecting great news, but I wasn't expecting for everything to be way worse! My lung function is down another 9%. I'm now at 40% of normal lung function for a person of my age. What the heck?!?!?! So I have no real news on what we are doing. They took some sputum and blood and they are running tests to see if they can find an infection - virus, bacteria or fungus. I got another round of chemo. Which is good and bad. It's suppose to help kill the bad antibodies in my body right now which is good, but it's killing my immune system even more which is not good and makes me more likely to catch something.
The hardest part is just hearing "We aren't really sure yet." It's too early to tell if the Rotuxin and the IVIG are helping the way they are suppose too. But with my numbers dropping still we have to start looking for another possible answer. That is by far the most frustrating thing. I just want an answer with a plan. This waiting in limbo sucks.
So as I wait for my results back from Cleveland I'll dive back into my routine. Work 2 days a week. I'm so grateful for Brian. He does so much for me. I'm not sure where I'd be without him. He works his butt off for us and then when he comes home he helps me around the house. If I'm not feeling well he takes over everything. He is the best husband. He gets it. He pushes me and encourages me to do as much as I can. At the same time he helps me whenever things get to overwhelming. I don't think he gets how much I rely on him. He is a just some kind of wonderful.
Relationships are already hard. But when you add a chronic terminal illness to the mix, that's really hard. I know Brian had no idea what he was really getting into. But I'm so thankful he has stuck around. With every new challenge we come across - which our first major challenge was 2 months into dating - instead of running away, he steps up in full force.
Here's hoping the holidays will come and go with no major events. I'm scheduled to go back out to Cleveland end of January/Early February. Until then I'm trying to stay as healthy as possible. I don't need my lung function going down any further. Instead answers as to why would be a lovely Christmas gift,
Breathe Easy
Sunday, November 27, 2016
Thanksgiving 2016
Hello World!
Happy Thanksgiving everyone!! I hope everyone got to spend time with loved ones whether it be in person or via technology.
I'm so thankful for so many things. My family - as dysfunctional as we are, I would t want anyone else. My friends - we may not talk everyday or even once a week, but when we do catch up it's like no time has passed. Together we have been through so much and we always seem to gravitate back to one another. Friends are your family you get to pick. Thankful for the little things - a car, a job, a house, food in my belly - having access to the basics in life.
Thankful for my questionable health. While I may not be where I want, some days are hard - really hard lately, I'm thankful to still be here to complain about it. My donor - a thank you will never be enough. My donors family - for making that choice - you are just as important. I'm alive. And that will never be taken for granted.
And I'm oh so grateful for my husband. He is a one of kind man. He can drive me crazy and make me mad but at the end of the day I want him by my side. He doesn't always see the greatness in himself. He may not be "Mr. Romantic" with flowers and such. But he does all the little things - everyday - and that means more than 1 big gesture every now and then. When I'm with him I never have to pump my own gas, open my own door, pull out my own chair, clean the snow off my car, or carry the heavy stuff. He surprises me with chips. There's always root beer in the house. Weekend mornings have become breakfast in bed days. I get "Good Morning" texts every morning we are apart. He tells me everyday I'm beautiful- even when I'm on super steroids and pretty sure I look like a chipmunk or breaking out like crazy cause of my medications or have CF belly bloat cause well my insides never cooperate. He has this way of "not caring" about my CF while still caring. He just loves me for me. And one of my absolute favorite things about Brian is singing in the car with him. I hope the jam sessions never end!
For those who work on this holiday - Thank You! Your sacrifice with your family and friends does not go unnoticed. A big thank you to the nurses who work on the holidays - As someone who has spent holidays in the hospital - it's nice to not feel alone. We all wish to be at home but you go out of your way to make us feel better while we are there.
As the weekend comes to end try and hold on to that Thankful Spirit. Remember what the holiday season is all about. Say I love you more, hug your family and friends, be grateful for what you have.
Breathe Easy
Happy Thanksgiving everyone!! I hope everyone got to spend time with loved ones whether it be in person or via technology.
I'm so thankful for so many things. My family - as dysfunctional as we are, I would t want anyone else. My friends - we may not talk everyday or even once a week, but when we do catch up it's like no time has passed. Together we have been through so much and we always seem to gravitate back to one another. Friends are your family you get to pick. Thankful for the little things - a car, a job, a house, food in my belly - having access to the basics in life.
Thankful for my questionable health. While I may not be where I want, some days are hard - really hard lately, I'm thankful to still be here to complain about it. My donor - a thank you will never be enough. My donors family - for making that choice - you are just as important. I'm alive. And that will never be taken for granted.
And I'm oh so grateful for my husband. He is a one of kind man. He can drive me crazy and make me mad but at the end of the day I want him by my side. He doesn't always see the greatness in himself. He may not be "Mr. Romantic" with flowers and such. But he does all the little things - everyday - and that means more than 1 big gesture every now and then. When I'm with him I never have to pump my own gas, open my own door, pull out my own chair, clean the snow off my car, or carry the heavy stuff. He surprises me with chips. There's always root beer in the house. Weekend mornings have become breakfast in bed days. I get "Good Morning" texts every morning we are apart. He tells me everyday I'm beautiful- even when I'm on super steroids and pretty sure I look like a chipmunk or breaking out like crazy cause of my medications or have CF belly bloat cause well my insides never cooperate. He has this way of "not caring" about my CF while still caring. He just loves me for me. And one of my absolute favorite things about Brian is singing in the car with him. I hope the jam sessions never end!
For those who work on this holiday - Thank You! Your sacrifice with your family and friends does not go unnoticed. A big thank you to the nurses who work on the holidays - As someone who has spent holidays in the hospital - it's nice to not feel alone. We all wish to be at home but you go out of your way to make us feel better while we are there.
As the weekend comes to end try and hold on to that Thankful Spirit. Remember what the holiday season is all about. Say I love you more, hug your family and friends, be grateful for what you have.
Breathe Easy
Monday, November 14, 2016
Day 6
Hello World!
On day 6 of being in the hospital. Although it feels like FOREVERRRR. This morning I finished my last round of Apheresis. Yayy! This afternoon or tomorrow morning I'll get my first dose of Rituxan. Rituxan is the chemo agent. The first infusion can take anywhere from 6-8 hours depending on how your body reacts to it. It has a whole bunch of fun possible side effects - as would be expected. So while I'm excited to almost be done with this, not really looking forward to this drug. Assuming I don't have any crazy reactions to it, I should be discharged tomorrow!
My biopsies from my bronch last week came back with the answers they all ready thought. So no news there. Over the course of my admission I've had potassium problems again and my kidney function is acting up. They believe these will stabilize once I'm done with all these new medications they are throwing at me. Overall things are moving in the right direction and looking good compared to a couple weeks ago.
Going forward, I've said it before but I'll say it again things will be different. A new regiment. I don't like to use the word "healthier" because that would imply I don't currently do anything right - which is not the case, I just need to do it better. Ask any patient of a chronic illness, you get lackadaisical over time. It's human nature. I need to go back to a stricter, tighter regiment like I had right after my transplant. Back to the basics. Re-instill some better habits, if you will. Because I surely do not want to be stuck out here again anytime soon!
Can't wait to get back home again!
Breathe Easy
On day 6 of being in the hospital. Although it feels like FOREVERRRR. This morning I finished my last round of Apheresis. Yayy! This afternoon or tomorrow morning I'll get my first dose of Rituxan. Rituxan is the chemo agent. The first infusion can take anywhere from 6-8 hours depending on how your body reacts to it. It has a whole bunch of fun possible side effects - as would be expected. So while I'm excited to almost be done with this, not really looking forward to this drug. Assuming I don't have any crazy reactions to it, I should be discharged tomorrow!
My biopsies from my bronch last week came back with the answers they all ready thought. So no news there. Over the course of my admission I've had potassium problems again and my kidney function is acting up. They believe these will stabilize once I'm done with all these new medications they are throwing at me. Overall things are moving in the right direction and looking good compared to a couple weeks ago.
Going forward, I've said it before but I'll say it again things will be different. A new regiment. I don't like to use the word "healthier" because that would imply I don't currently do anything right - which is not the case, I just need to do it better. Ask any patient of a chronic illness, you get lackadaisical over time. It's human nature. I need to go back to a stricter, tighter regiment like I had right after my transplant. Back to the basics. Re-instill some better habits, if you will. Because I surely do not want to be stuck out here again anytime soon!
Can't wait to get back home again!
Breathe Easy
Friday, November 11, 2016
Stuck in Cleveland
Hello World!
Well things weren't any better. I'm stuck in Cleveland for now. My lung function dropped another 10% since I was here just a few weeks ago. So over the course of a month or so I've lost 25% of my overall lung function. NOT GOOD! Big red flag.
Good news, we have a plan!
The plan is to do 3 rounds of Apheresis. I'll try and explain this the best way I can, Apheresis is a therapy that circulates all the blood in my body. Basically my body is making "bad plasma" that's causing rejection, and this machine filters out the "bad" and gives me back "good plasma." Once I'm done those 3 rounds of Apheresis, I'm going to be given a chemo agent (I don't remember the name of it) via an IV. Then for the next 6 months I'll need to see my local Dr and get this chemo IV once a month. Hopefully once all that is done this acute rejection will be gone. It's a long road, but what's life without a little struggle? After all said and done, best case scenario will be my lung function goes back up! But at least this should stop it from declining. If it keeps declining, it's back to the drawing board - and let's not g down that road yet.
So at the moment I'm sitting in a Cleveland Clinic hospital bed. The plan is to be discharged Tuesday or Wednesday next week - assuming everything goes as planned. So it feels like forever away. I miss Brian and my pups. I find hospital stays are "harder" these days - and I think it's cause I know I have Brian at home. I didn't have anyone else before to really "come home to." So it's bittersweet. I will say technology makes things better, I can still see his face every night with FaceTime - which helps.
Other than that, life is going just peachy! Hopefully I'll be back up and running like my usual self in no time.
Breathe Easy
Well things weren't any better. I'm stuck in Cleveland for now. My lung function dropped another 10% since I was here just a few weeks ago. So over the course of a month or so I've lost 25% of my overall lung function. NOT GOOD! Big red flag.
Good news, we have a plan!
The plan is to do 3 rounds of Apheresis. I'll try and explain this the best way I can, Apheresis is a therapy that circulates all the blood in my body. Basically my body is making "bad plasma" that's causing rejection, and this machine filters out the "bad" and gives me back "good plasma." Once I'm done those 3 rounds of Apheresis, I'm going to be given a chemo agent (I don't remember the name of it) via an IV. Then for the next 6 months I'll need to see my local Dr and get this chemo IV once a month. Hopefully once all that is done this acute rejection will be gone. It's a long road, but what's life without a little struggle? After all said and done, best case scenario will be my lung function goes back up! But at least this should stop it from declining. If it keeps declining, it's back to the drawing board - and let's not g down that road yet.
Getting a round of Apheresis
The machine that filters my blood
So at the moment I'm sitting in a Cleveland Clinic hospital bed. The plan is to be discharged Tuesday or Wednesday next week - assuming everything goes as planned. So it feels like forever away. I miss Brian and my pups. I find hospital stays are "harder" these days - and I think it's cause I know I have Brian at home. I didn't have anyone else before to really "come home to." So it's bittersweet. I will say technology makes things better, I can still see his face every night with FaceTime - which helps.
Other than that, life is going just peachy! Hopefully I'll be back up and running like my usual self in no time.
Breathe Easy
Friday, November 4, 2016
Not Awesome
Hello World!
Well things aren't wonderful.
I'm a stubborn person. Have been my whole life. I'm opinionated and I know what I want. That can make me a difficult patient. Don't get me wrong I have an EXCELLENT relationship with my team of doctors. So great in fact I have personal cell phones I can call if I ever need anything. With that being said we've had our go arounds with what is "right" for me. Everyone is different.
A few weeks ago I went out to Cleveland for a transplant follow up. Things did not go the way I hoped. My lung function was way down. 15% from my baseline actually. Immediate red flag. My blood work also showed signs of new "bugs." These things called Donor Specific Antibodies (DSA) popped up. These are not good. It means my donated lungs are creating antibodies to fight my natural cells - basically rejection. SO I have to go back to Cleveland on the 9th of November for another lung function test, more blood work, chest x-ray, and a bronchoscope. During the bronch they will biopsy my lungs and be able to tell how serious the rejection is. Acute rejection is the "good" kind. Chronic rejection is harder to treat. But i won't really know anymore until then. In the mean time I'm on high dose prednisone, which is a steroid. Prednisone makes me hungry all the time, along with keeping me awake at night cause my brain wont shut off and makes me moody. I'm very grateful for Brian for dealing with me the last few weeks. Its been crazy.
On top of that stuff, the past few days have been rough. Ive been more short of breathe and extremely tired. So off to the doctors I went. Well thanks to the high dose prednisone my sugar levels have been sky high - which we have decided is the root of this latest issues. They also made do a "walk test," which is where they hook you up the 02 monitor and make you walk around to see how your 02 levels do. We discovered doing this that my 02 level drop down when I'm exerting myself. SOOOOOOOOOO I been banished from working until I go see Cleveland and get this rejection under control.
Most people would love a letter from the doctor saying they can miss work for a little bit. But Ive already put in that time - years for that matter. I want to work. Don't get me wrong there are days i wake up and grumble about having to go to work BUT I'm glad I can get up and go work. It gives me some purpose in my day. So it drives me crazy that I'm not allowed to go to work. I HATE being told that. I'm all about proving you wrong. Don't put limits on my life. I'll break them every time.
So reluctantly I'll listen to the Drs and stay home for a few days and soak in my puppy therapy. But i cant wait to get back out to Cleveland and figure this mess out. I'm ready to feel good again and get this back on track. Tired of being sick and tired. I'll update again as soon as I know more.
Breathe Easy
Well things aren't wonderful.
I'm a stubborn person. Have been my whole life. I'm opinionated and I know what I want. That can make me a difficult patient. Don't get me wrong I have an EXCELLENT relationship with my team of doctors. So great in fact I have personal cell phones I can call if I ever need anything. With that being said we've had our go arounds with what is "right" for me. Everyone is different.
A few weeks ago I went out to Cleveland for a transplant follow up. Things did not go the way I hoped. My lung function was way down. 15% from my baseline actually. Immediate red flag. My blood work also showed signs of new "bugs." These things called Donor Specific Antibodies (DSA) popped up. These are not good. It means my donated lungs are creating antibodies to fight my natural cells - basically rejection. SO I have to go back to Cleveland on the 9th of November for another lung function test, more blood work, chest x-ray, and a bronchoscope. During the bronch they will biopsy my lungs and be able to tell how serious the rejection is. Acute rejection is the "good" kind. Chronic rejection is harder to treat. But i won't really know anymore until then. In the mean time I'm on high dose prednisone, which is a steroid. Prednisone makes me hungry all the time, along with keeping me awake at night cause my brain wont shut off and makes me moody. I'm very grateful for Brian for dealing with me the last few weeks. Its been crazy.
On top of that stuff, the past few days have been rough. Ive been more short of breathe and extremely tired. So off to the doctors I went. Well thanks to the high dose prednisone my sugar levels have been sky high - which we have decided is the root of this latest issues. They also made do a "walk test," which is where they hook you up the 02 monitor and make you walk around to see how your 02 levels do. We discovered doing this that my 02 level drop down when I'm exerting myself. SOOOOOOOOOO I been banished from working until I go see Cleveland and get this rejection under control.
Most people would love a letter from the doctor saying they can miss work for a little bit. But Ive already put in that time - years for that matter. I want to work. Don't get me wrong there are days i wake up and grumble about having to go to work BUT I'm glad I can get up and go work. It gives me some purpose in my day. So it drives me crazy that I'm not allowed to go to work. I HATE being told that. I'm all about proving you wrong. Don't put limits on my life. I'll break them every time.
So reluctantly I'll listen to the Drs and stay home for a few days and soak in my puppy therapy. But i cant wait to get back out to Cleveland and figure this mess out. I'm ready to feel good again and get this back on track. Tired of being sick and tired. I'll update again as soon as I know more.
Breathe Easy
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