Well, I now have had 2 EGD's with dilation of my esophagus where my Nissen wrap was. Swallowing has improved FINALLY!!! It's still not normal or like it was before the transplant but much better at least. I'm off the anti-fungal, Vfend so of course my Prograff level went down WAY too much. They increased it and I go back in Wed. for another blood drawl to check my levels. Hopefully it will be ok so I don't have to go in again next week too. My last bronch in Aug. showed no fungus but some Psudamonas so my Colistin antibiotic has been increased to 3 times a day via nebulizer! Ugh! It's a temporary thing at least. At least my blood suger levels have gone down some after getting off the Vfend too. I've gotten a little more energy back since going off it too. It's so hard though to keep from getting a fungus b/c it's everywhere outside it's hard to avoid. I hope I at least get a good long break from it. I'm being more careful now in the yard by using a respirator but it's harder to breathe through it so I just don't get much done these days. I am getting spending some time refreshing and learning some more on some of the computer programs I learned in school but haven't used in years due to being sick. I am enjoying that at least and maybe one day I can take some refresher classes at school.
I continue to be amazed at some of the fat I have taken on this year. I never had any before b/c I was always under weight. I try to get some walking in at least 4 times a week and sometimes some other exercises but evidently I am not doing enough, haha. Still, I am happy with my weight. I'm around 117 which is more than I ever was before transplant. I still have a freaky hole in my stomach from the feding tube. Looks like an extra bellybutton. Don't like it at all.....kinda grosses me out, haha. I can handle all the other scars.
I don't think I have another appt. until early Nov. with the lung doctors. However, I did go in last week for my prograff levels and other bloodwork to see if something was up b/c of my constant fatigue. While I was there, I did a breathing test (PFT) for the research program on CYCLIST medication which I am not on drug. My FVC was 3.05 which is like 90% so that was great! Same number as last time or close to it. FEV1 was down some which I expected since it seems to be a constant thing with me after I get my bronchs. However, it didn't drop quite as much in that amount of time as it has in the past. So.....maybe...just maybe, things are starting to improve. I wonder if it has to do with getting the esophagus dilation.....being the theory stuff might have been backing up into my lungs b/c it couldn't get down fast enough due to the small opening. We'll see how things continue to go and if I start to see my build up of mucous go away, then we know it must have been the culprit. I have to add that even though I have been getting this mucous build up, it's nothing near as bad as before transplant. Also, I haven't coughed up any blood too. That has definately been a nice change since TX. I remember coughing up blood a lot the last couple of years before transplant. Pretty scary.
So things seem to be slowly improving. I still break down now and then thinking about all I have been through and worrying about having to go through it again. I just try not to think about it. I can usually talk to people about it without it getting to me emotionally but it's when I'm alone or trying to sleep at night or at the hospital when it really gets to me. It does get a little easier the further out I get and the longer I manage to stay out of the hospital. I'm trying to fill my head with some better experiences to remember. I managed to do that this weekend. The first time My boyfriend and I got to go out of town for fun for a change! I had a really great time and it felt really great to see how much some people/friends really care. I hope I can have many more weekends like this!
