June 14, 2022
2022 and I have been spending so much time stuck at home due to fear of catching covid. So far I have been able to avoid it. We always wear our masks and avoid crowds. Lung function is still doing good and a nodule on my thyroid has shrunk so that is great news! Still have gallbladder issues and have gone to the ER for it a few times. Transplant doc has me on meds to help it b/c to remove my gallbladder would be risky due to them having to cut me open b/c I have too much scar tissue from previous stomach surgeries. I have been taking Trikafta med that has really helped with my sinuses and helped me gain some weight. Diabetes has been pretty stable. Not bad enough to need insulin but bad enough I have to take meds and check my blood sugars. Mentally struggling with not being able to live like before Covid, not being able to fly and see family and friends and no fun vacations. I try to keep my mind occupied with hobbies. Life is still better than before transplant when I couldn't breathe and constant fevers! August is my annual at Mayo transplant clinic where I will have 2 days of testing. It will be 13 years post!!! I've been very lucky to have such great lungs!
January 26, 2019
I know it has been a while since I have an update. My lung function has been doing great!! However, they did see some fluid/ air seepage 8n my right lower lobe. They aren't going to do anything yet though b/c my numbers are so good. I am over 9 years post now!! Still have lots of stomach problems due to meds and surgeries. Going to a different clinic now since they got rid of my transplant doctor's clinic in Tampa. Still heartbroken about that! Tried the Orlando clinic and had lots of issues with them so wasn't don't to well physically then. Now going to Mayo clinic in Jacksonville.
I turned 40 this year!!! Thanks to my boyfriend and former step-dad, they made it possible for me to do something on my bucket list last year. I got to swim with whale sharks!!! It was so amazing!! They are friendly and are filter eaters that just eat plankton so I wasn't scared at all. It was an experience of a lifetime!
Now onto the bad part... Medicare has changed how transplant meds are billed so they go under part B instead of part D like all the other meds. That means no extra help from Medicare that I was getting and no help from Medicaid at all. So, my copays have gone way up and costing me more than I can afford. This just started and will be affecting other people who have had lung and some other organ transplants that rely on these meds the rest of their life. It-s so unfair what Medicare and Medicaid are doing to us! I have not asked for donations in a long time but now I am desperately needing your help! Please donate if you can and remember it is all tax deductible through this non-profit organization. They help by reimbursing me for meds that I send them receipts for. Any help is appreciated! Even writing to your representative would be helpful.
October 20, 2015
My funding has lasted me 6 years but now my account is nearly depleted so I need to do more fundraising to help continue paying for my uninsured meds. The biggest one being for my stomach. I had to have surgery on my stomach to prevent refluxing into my lungs which leads to rejection and the surgery destroyed some of the nerves causing some gastorparesis. I need to take the med or I will have sever pain and nausea due to food sitting in my stomach and not emptying for a long time. When I eat my next meal there's no room for anything so these meds help things move along. The only med they have for it that is FDA approved, I have bad side effects from so I have to order a med from the UK (that is approved there) with a prescription from my doctor. So this all has to be paid out of pocket and runs around $100 a month! On top of that I have several other vitamins and supplements (like Ensure) to help me maintain my weight and provide nutrition that my body has a hard time absorbing from food alone. I am on disability so my income is very low and I have a hard time paying for these meds so I desperately need your help! Thank you to all those who have helped and those how help in the future!
August 7, 2015
In 2 days I will be 6 years post double lung transplant! It's been a fairly stable year. Still have stomach problems from past surgeries. Got an EGD done and the doctor said there is nothing they can do b/c some of the nerves have been cut. Lungs doing good but still a little junky sometimes. I got to mark something off my bucket list....I got to go on a cruise with my family in March!!!!! My Aunt was kind enough to buy me a ticket and it was the best vacation ever!!! 13 of us total! Unforgettable memories I will always cherish! I keep busy with constant problems with insurance and pharmacies and lots of doctor's appointments. I'm living with my boyfriend of 3+ years and my 2 dogs and half the time my boyfriend's daughter lives with us who is now 15! Between all of those things, I stay pretty busy. Still sleep for long hours but manage to usually get some stuff done. We also have an awesome little Koi pond that I help keep up and feed and that's where I go for some peace and quiet. I have my annual check up in Sept. so hopefully it all goes well. A little concerned about some irregular heartbeats I get once in a while and not the best kidney function but I guess that's expected with all the meds I am on. Still overall things are pretty good. Just needing some more help with paying for my medicine. My stomach med alone is $100 out of pocket a month b/c it's not FDA approved but it's the only thing that works and is prescribed by the doctor. Without that, I would be having severe stomach pains on a daily basis. So your help is greatly appreciated! Thanks!
May 2, 2014
Getting close to 5 years post transplant and doing well!
November 10, 2013
Lungs are still doing well! Lung function is great but still get junky a lot. They think it is probably from my sinus drainage going into my lungs. Still do daily breathing treatments along with about 30+ meds a day. My stomach is doing a little better now that I have added prunes daily along with my expensive non-insured medication. Trying my best to stay away from sick people. Very thankful I have not had to have any surgeries this year!!! I am a little worried though about my account running very low on money and hope I can find some more people to donate. I can't afford these meds without the help!
