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!