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.