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

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