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v1crew65
@v1crew

Posts: 44
Joined: Jul 05, 2016

waiting and scores

Posted by @v1crew, Aug 25, 2016

I was wondering how long people have been waiting to get on the liver transplant list, and if on it how long they have been waiting. Also I am curious about the average meld scores in the southeast region. The other thing is how others cope with the waiting and the anxiety of watching their scores go up and down. I know myself, I get feeling pretty good about where my score is and then when it takes a pretty good jump the worry intensifies greatly. Then what I do to deal with it seems to be a lot less effective. Any insight would be appreciated. Thank you

REPLY

Great questions @v1crew! I’m tagging @hlweber1 @lindami @peakbagger @sophiadelgado @bszychow and @lastdaze04 to join this discussion and share their experiences, concerns and thoughts.

Hi v1crew, I hope the best for you. I am on the Pancreas list for one year. The first time I was called after a few months, but it didn’t
make it to Mayo in time so they had to cancel and I went home. Just last week I had my yearly evaluation came home then a few days
later called back up. After being there all day ready for them to roll me into surgery. instead they told me it was not usable. It’s tough
sometimes just waiting for that call that can be any time 24/7. just keep your thoughts as positive as you can. and if you start getting
down find something to do anything to get in a happier mood.
It may not be all your looking for but I hope it helps.

Puzzles. Any kind of puzzle! Especially jigsaw puzzles helped me pass time.

@rosemarya

Puzzles. Any kind of puzzle! Especially jigsaw puzzles helped me pass time.

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Have you looked at the information and data at United Network for Organ Sharing? There is some good reading there. Might be what you are looking for, or at least occupy your mind.
https://www.unos.org

Liked by caretothepeople

@rosemarya

Puzzles. Any kind of puzzle! Especially jigsaw puzzles helped me pass time.

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another good resource is the US Govt Organ Procurement Network. I hope you find this information helpful. Rosemary

https://optn.transplant.hrsa.gov

The OPTN is operated under contract with the U.S. Dept. of Health and Human Services by the United Network for Organ

@rosemarya

Puzzles. Any kind of puzzle! Especially jigsaw puzzles helped me pass time.

Jump to this post

hi!

Unfortunately I have read all that I can find about UNOS and OPTN. Also everything I can find on the pathology of the liver ,hepatocellular carcinoma in cirrhosis patients, pancreatitis, Vitamin D deficientcy, diabetes development due pancreatic damage and injury to islet b cells etc etc. I have watched I don’t know how many liver transplants on you tube, both live donor and deceased , lectures etc. LOL. I need something other to think about besides my ESLD asn that is not easy to do as everything you eat,everything you do, you worry, It starts to consume you. It is hard to distract yourself. You are too tired to do anything physical, and on days you are not you worry about injury and bleeding out or getting an infection I try to get some fiction from the library as it can be distracting and it seems to help. Not working 60-70 hrs a week has freed up a lt of time, which I have been using to try to further my education without being committed to classes. You can learn a lot from books., and the advantage is there are no grades ,it is free and you don’t have to worry about issing a lecture because you just play it after a nap. HA! I wish I has figured this out 30 years ago (though you couldn’t watch lectures on the inteweb) As ofr puzzels they are not really my thing but I have been fooling with scale model cars. I shake so bad the don’t come out very good, but the didn’t when I was 10 yrs old either, they kinda look the same….. At any rate, Diners, Drive-ins and Dives is on the food network right now so I guess I will watch with envy and wish I could have some of what they are eating…. Sorry about the ramble V1CREW

@rosemarya

Puzzles. Any kind of puzzle! Especially jigsaw puzzles helped me pass time.

Jump to this post

@v1crew, Why am I not surprised that you have already read and digested all of that data!! You are amazing. Really on top of your situation. Or at least the part that you can be on top of. Hang in there. I am not going to tell you that it will get any easier. It is not easy to wait for the unknown. But one day, you will get a call. When you least expect it. And you will never forget that special moment!
Rosemary PS Rambling is ok; it helps pass the time.

@rosemarya

Puzzles. Any kind of puzzle! Especially jigsaw puzzles helped me pass time.

Jump to this post

LOL, you know what they say…lost at sea or surviving ESLD. Until you get rescued,(or get a transplant) the more you know about it the better your chances of making it!Have a great evening! Craig

@v1crew the waiting game can be so tough and can lead to a lot of emotional ups and downs. Some people find that working with a therapist or finding a support group can help with processing the feelings and make waiting a little more bearable. It can sometimes help to be around other people who understand and can relate to what you’re going through – maybe even learn tips or ideas about how to cope from them . The American Liver Foundation may have some resources of interest: http://www.liverfoundation.org/support/

@caretothepeople

@v1crew the waiting game can be so tough and can lead to a lot of emotional ups and downs. Some people find that working with a therapist or finding a support group can help with processing the feelings and make waiting a little more bearable. It can sometimes help to be around other people who understand and can relate to what you’re going through – maybe even learn tips or ideas about how to cope from them . The American Liver Foundation may have some resources of interest: http://www.liverfoundation.org/support/

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I had to fire my gang of therapists 3 or so years ago when I quit drinking! LOL. I know 3 people that have had kidney transplants, but no one with a liver transplant. I cope with it pretty well for the most part, but the anxiety before and after going to Jacksonville is the hardest. Always wondering what will my score be , how bad are the labs , how does the MRI look ,etc last time my score went up 4 points in 3 months , the time before that it went down a couple. You get there and think,”I don’t feel to bad” and you score is higher than the last time when you were feeling lousy. I always loved roller coasters , but I would like to get off this one. It gets old.I just try to keep busy with distractions, but the difficult part about that is that every aspect of you daily life is affected. The first thing you do in the morning is take a hanful of pills drink some of this and that and spend the rest of you day worrying about everything you eat, (diet) everything you touch(infections) and all the while making sure you don’t bump into anything or get a cut(bleeding) so it is kinda hard to stay distracted. but you just do the best you can with what you have to work with. I have caught up on a lot of reading I had been putting off because I used to work so muck, and I am slowly getting back into some of my less dangerous hobbies(model cars instead of real cars. Unfortunately, where I live there are not a lot of groups,as there is not a Hepatologist in the whole county. One of the reasons I am on this site! Here everyone can relate. Thanks for reminding my of the LF, I had forgotten about them. Have agreat day and thank you.

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