List fatigue

Posted by shanesplanet @shanesplanet, 3 days ago

I know that being on the list is just the beginning of the journey. There is a lot to be done after transplant. But I can’t help feeling just burned out with the process. I’ve been on the list now for just over a year now. 2 lists actually. I am status 7 on both because a tumor they found in August ( first status 7). Has grown and they need another biopsy. A CT guided biopsy is dangerous because it is located under my small intestine. No surgeon wants to do laparoscopic bx due to End Stage disease. So here I sit with a MELD of 18 and am in limbo. It’s been 18-21 since I’ve been listed. But yet I see and personally know people who list and within a couple months of listing are transplanted. Meanwhile since it’s been just around three years since I went on vacation and had a drink. Because of that one week I had to jump through all kinds of hoops. I wasn’t even sick back then. I got sick when I was training for a masters race to start my competitive cycling event year. Sometimes I just want to say fuck it and go just chill in the islands until I end up in the ICU. I’m sick of people treating me differently, worried if I am doing too much or not taking care of myself. I was a paratrooper medic for 13 years. I retired last year from 31 years in healthcare (nurse/ medic). Started a reggae apparel company and it’s successful. I think I know when I need a sandwich. Sorry for rambling just overwhelmed.

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chickytina | @chickytina | 3 days ago

I had a double lung transplant May 2022. I wasn't on the list long due to having a ranking of 75. I was on 30 liters of oxygen, so had to be in the hospital before I had surgery. If I were able to go on vacation beforehand, I would have. We had been planning on going and I would need to go in my wheelchair (couldn't breathe enough to walk 20 feet), but my condition got a lot worse within 6 months. Since then I have been able to live a lot more. I don't need the wheelchair and don't need oxygen.
I would say while you are listed enjoy all of the things that you won't be able to eat afterwards. I know that I am more restricted than others due to my potassium level. I love bananas (more plantains though), pomegranates, papaya, some sandwiches, etc. I miss a nice med-rare steak. All meat has to be 165 degrees and med-well or more within 2 hours of eating.
I know that waiting is hard, but try to enjoy the time that you have to do different things. Afterwards life changes in both good and bad ways. If you are physically able to, I would discuss if you are able to go on vacation with your doctor.

craigcraig | @craigcraig | 3 days ago

Hi Shane I am sorry for your situation. I can see why you feel burned by the system. Sorry that your wait has been this long without a transplant. The only thing I can say that might help is they have all that criteria and while you may deserve one now it is nothing personal (by them) against you , they are just going by their stuff. But it's personal to you !

I like Tina's advice maybe talk to your Doctor about a vacation ? I had a liver transplant about 2 years ago and I don't travel well. My only travel has bee 4 trips to Mayo AZ. No problem for me but that has been hard on my wife who has wanderlust and loves to travel/ vacations/etc. . While it is tough all I can suggest is hang in there as best you can. And look forward to that day you get the call. It is possible it could be soon . Prayers up.

pgruetz | @pgruetz | 2 days ago

Just be patient I waited only 3 months because my meld score was in the 30s I was near death and bleeding out and acites was 9 liters every 2 days it doesn’t sound like you are that extreme yet I’m a 3 year post and love my vacations and living life again like the other person said eat all your raw meat sushi because after your transplant you will have a whole new diet and learn how to cook and your restaurant days and fast food yeah that’s gone to so be patient is my advice

shanesplanet | @shanesplanet | 1 day ago

It was more of just a venting post. I usually go to Belize a few times a year and am generally sitting there now. But since I got sick this is the longest I have been in the country. I have a 3 day music festival (I'm the founder) in the islands I need to be at in OCT. And a trip to Africa in the works. But sitting in Florida for the time being.

craigcraig | @craigcraig | 1 day ago

It sounds like you have a very fun and active life ! Much more so than me. I walk our golden retriever , play fantasy football and go out to dinner with my wife. 🤣. Some day you will be back to it. (---:

stephanierp | @stephanierp | 1 day ago

Hello,
I remember the anxiety and the “quit treating me differently” mode of being on the list. You’re allowed! I was in the list - matched - then my numbers improved so match was terminated - then numbers dropped dramatically- and I had to start all over again. It was a roller coaster with life and death consequences. It’s hard to know what to do. You want to be available but also live your life. I am 5 years post-transplant and travel quite a bit. The pre-transplant list time was just a chapter of my life - not he end but the beginning. And in hindsight was a time with many blessings of its own. Though at the time, it was often difficult to appreciate.
Prayers for peace❤️

shanesplanet | @shanesplanet | 1 day ago

In reply to @stephanierp "Hello, I remember the anxiety and the “quit treating me differently” mode of being on the..." + (show)

@stephanierp I am taking the time at home to design more apparel and every now and then I research older design styles and work on merch that fits say like 1974. All with Reggae themes and it's been fun. I just wish I was at my place in Belize.