I know it's been a long time since I have posted but things have been running pretty smoothly. I have started to see a decline in lung function down to 88% but still considered good. However, this is an indication of possible chronic rejection or lung infection. I really don't believe it is lung infection....plus I am on 3 antibiotics a day. Doctor may do I bronchoscopy with biopsy if my numbers aren't better by next appointment. I have been very lucky to have made it this long without any known rejection. Still, it scares me.
Another update is I have a new doctor due to Tampa General getting rid of private practice doctors which included my doctors so they have disbanded and moved away except for one. I chose to see a transplant doctor here in Orlando....oh yea, I moved to Orlando almost 3 years ago. My favorite doctor who was there from the beginning moved to Louisiana. Broke my heart! I was so depressed as the doctors and coordinators become like family. However, I felt so much better when a few months later I got a friends request on FaceBook from my doctor!!! I never expected that b/c I know he hates typing, haha. What's so great is that I can contact him on there and most of the time get an instant reply! The new doctor in Orlando seems nice but they do some things a little differently and some of those things I don't care for.....like more blood work and x-rays. They haven't been around as long as my clinic and doctor in Tampa were. Also, currently my Medicaid is not accepted there so I am getting co-pays on everything I do which has added up. I as not expecting this. I can't change my Medicaid plan till Aug.
Another tid bit....About a year ago I had a mass in my groin area taken out to check to make sure it was not cancer. Good news was it wasn't and was only a lypoma(fat). Bad news was that I had a bad reaction to the anesthesia. Non-stop vomiting and lower chest pain. Went to the ER in Orlando, did a bunch of tests and thought it was my gallbladder so they sent me by ambulance to my doctors at Tampa General. I was feeling better by then but they wanted more tests. My liver function was severely high and I had "sludge" in my gallbladder with slight dilation. Well, my gallbladder has been like that for at least a few years but the gallbladder surgeon didn't bother to read my records or everwhat was going on and just talked about taking it out in a few weeks. My lung tx doctor I had talked to right before said he was putting me on a med to see if it helped but the surgeon didn't even see that or know until I told him about it.
Before all this, I had felt like my body was shutting down and was crying b/c I was so hungry and thought I might die. It had been almost 3 days since I got to eat b/c the night, morning, and afternoon I was not allowed to eat before my initial surgery for the mass (which had gotten delayed), then threw everything up I tried to eat after surgery and then couldn't eat b/c of another possible surgery. I begged for food and was denied so I begged for a piece of candy later to at least suck on and then the doc decided to finally let me eat and if surgery was needed it could be done later b/c at least my liver number had gone down but was still far from normal. So fast forward a couple weeks and I go see the surgeon who did the surgery to remove the mass (who I believe was also a liver surgeon) and told him what happened. He looked at my chart and said it looks like I just had a bad reaction to the anesthetic. What!? I just about had my gallbladder taken out for no reason!!! I was so relieved and so upset at the same time. I have not had any problem since! I believe the chest/ abdomen pain I had was from throwing up through my Nissen stomach wrap I had for reflux. I have not been able to throw up since I had that surgery but I was so sick this time that it actually happened. It wasn't used to opening up that wide in reverse. Even sometimes when I eat things still have a hard time going down. I'm just sooooooo glad I didn't have to have another stomach surgery after how much mine got messed up from the Nissen!!! Plus any surgery with a suppressed immune system is scary! So I've had no more problems in that area other than the pain from gastroparesis.
Life continues to be stressful and challenging but I am still hanging on! I am thankful for the good people I have in my life! I'll try to remember to post an update on my lung issues in a couple months.