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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

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

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

Saturday, July 22, 2017

5 Years

Hello World!

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 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