Live Life then Give Life, Please be an Organ Donor.

Tuesday, March 26, 2019

Shifting Gears

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! <<< Check it out!

Breathe Easy

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

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

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

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

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

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