Liver
Pity Party
This is a long, lying-in-bed ramble-sorry!
How do I get past this overwhelming feeling that life after my liver transplant is just no fun any more? I seem to not look forward to doing the things I used to love. I know that seems stupid: being ALIVE is no longer fun??? There are just so many things I CAN’T do anymore physically due to after effects of the LT, and that I am not SUPPOSED to do because of the rejection possibility, and other problems that have now appeared. I really, really miss looking forward to dinner with friends and DRINKS (I no longer want to get drunk but drinks would be nice) or even an occasional toke! I think the problem may be that I didn’t get to make these decisions myself- they were forced on me (well, not entirely-I could have chosen to die instead of getting the new liver-RIGHT!) Sorry for the rambling. My wife has been complaining that I am no fun any more, and she is mostly right. I gotta get past this some how. I have even rationalized: I am already old- just go for it and have fun: you have a new liver so you have to have several years left anyway, right? Of course that would be unforgivably disrespectful to the family of my donor, and I would never do that. Just such a dilemma. Lost in thought…….
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Transplant Patient
I’m going to come at this from 2 angles: the first being from what we know of the brain and the way patterns work, we can’t give up a habit without replacing it with something else. My therapist and I talk about this all the time in terms of harm reduction. So with something like drinking alcohol, that would now cause me harm, I’m replacing that with something else. Personally I love mocktails. Making them, drinking them, I’ve given myself something else to trade in for alcohol. Is it the same? No, but it helps. I also don’t say absolutely no alcohol. That deprivation idea has never worked well. So I focus on all the reasons why i’d choose to drink alcohol, choose not to drink alcohol, why I want to, what I could replace it with… if what I’m actually craving is time with friends, what else can I do? Can I go out with them and not have alcohol? Or sometimes it’s ok, I’ll have a drink every once in a while, and then letting that be ok.
i let myself do the occasional thing, but I don’t let it become a habit. And I try to bring in as many other fun things as I can. It’s a huge mindset shift, so seeking out support helps too. Either having a mental health professional who can help you with this reframe, or I’ve found things like sharing here on TL or attending one of our support groups and getting ideas on what other people are doing helps too.
Welcome nvw1005 I know how you feel I went thru those emotions when I felt bad and wanted my old ways of life back.
I feel after 3.5 years LTP I now have a purpose in life, I was given this 2nd chance at living and it’s just going to be a little different. Get out there and live your best life you can, enjoy time w/family friends think of the alternative. I hope this group will help you get thru this.
Good luck and you are not wrong for feeling this way, it’s a day at a time.
@nvw1005, @Melsamm makes an awesome point. We were given a 2nd chance and we try to make the best of it. Like u n many in this group know, it can be really tough sometimes. I want you try your best to stay positive. Trust me, I know it “ain’t” easy. And this a great group to be a part of. Take care, friend.
Thank you all for the comments, especially AliEm14! It is really encouraging to hear that there are those among us who believe (as I do) that it is possible to have an occasional (and I stress “occasional”) drink without fearing a precipitous slide into wholesale drinking. I have embraced NA beer, and actually haven’t had alcohol for over 3 years, but I HATE the feeling of someone telling me I can’t handle even one drink because I will surely backslide! Obviously, those people under-estimate the willpower of survivors!
I can't really say anything in regards to drinking alcohol. I never liked it much, my weakness is coffee. But I can relate to the problem of suddenly having to live a different life from what one had before transplant. I struggled too right after my transplant. Alive but not really being able to do all the things I had imagined I would do once resurrected. The way I approached it was being deliberately grateful for the most ordinary things in life. I also had a lung transplant and therefore was grateful for being able to carry a jug of milk up the stairs without feeling breathless. Or, due to the ascites before my liver transplant, being grateful I could finally close my pants again because my swollen belly was shrinking. I know, it might sound discouraging right now to be grateful for such ordinary things, but it helped me to look forward. There were tiny things that were better now than before and slowly, slowly, month after month, the tiny things I was able to be grateful for grew to be bigger and bigger. It took me a whole year to feel reconnected to my new life. It was hard work but in the end it was all worth it because eventually I got to the life I always wanted. Not completely healthy, not living without limitations, but feeling good about myself. - I hope I could somehow help you a bit, if only by sharing that I struggled as well. All the best!!!!!
Inka that was so perfectly said. I had my LTP 3.5 yrs this is the third time after several surgeries after TP. to start over, again. I was getting my monthly labs everything was stable. then all of sudden my labs “ blood counts changed”. I was dx. w/acute myeloid leukemia so now I am having to deal with. different way of life again. So my message live your best life bc it can change in a minute. I think the hardest for me right now is this blessing I was given I am going to try and do everything to keep it safe from cancer. Like you said we r all struggling with so many different things after TP.
♻️💚
@nvw1005 I totally understand your feelings. I used to enjoy a glass of wine or an occasional beer with friends but I know the damage it can do if it gets out of hand. I had fatty liver and my problem was partially because of my food choices and I still have trouble making good choices. I have lost friends because I no longer drink but you know as you get through your first year you will begin to embrace the idea that you’re feeling better, taking care of yourself more and hopefully enjoying life in a new way. I think it’s ok to have a glass of wine or a mixed drink but only one , it’s about control. Best of luck to you and congratulations on your transplant!!
I was diagnosed at 16 with Lupus and I felt like my entire life was over and I wouldn't be able to experience life like I always dreamed. I received my kidney transplant at 24. Now I am over 40. And almost my entire life I give myself pity parties. In order to get over it, I've had to redirect my thoughts. I learned to love other things instead of my original dreams. Instead of being able to have my own children, I am the best auntie in the world. Instead of nightclubs, I obsess over sunsets. I just have found different ways to direct my energy. I probably appear boring to people. But what makes me super interesting is my superpower of having another persons organ keeping me alive. I definitely still have pity parties every now and again.
All:
Thanks for the thoughtful responses! Although I bemoan the differences in my life, I am strictly adhering to the new limitations and working hard. No alcohol and returning to part-time work. I will make it work. I don’t dwell much on what I can’t change.
nvw1005 I have done the same as you. It’s been over 4 years so I really do not have a desire now
I definitely enjoyed my cocktails, but it’s my choice. I did loose some my cocktail buddies. It is what it is I also had NASH w/cirrhosis end stage liver my TP team did tell me my new liver could develop the same disease.
Transplant Patient
I totally get this! It is so hard to be told not to do something vs deciding for yourself that it is much better for you. As a teenager, when I was dx w type 1 diabetes I felt very sorry for myself - no more spontaneous meals, having to carry devices everywhere, no more ice cream, pancakes, pasta even bread! No more freedom I felt.
That is what they told me in 1989…
First I saw it as a punishment for some sort of bad behavior, then I stopped believing in God, and then after some time I decided to try to solve the problem which was underlying the condition - so I went to medical school!
However, it was not until I decided to make choices for myself that I finally began living a life of joy again and control. I realized that bad food for people w diabetes are bad for everyone, so I could get a head start!
I realized I could control my intake and regulate how I felt. Taking back control gave me more happiness and less bitterness but of course did not reduce the stress or pressure I had set out for myself to be “perfect”.
Karin it had to be so hard to be so young and have diabetes I cannot imagine. i was told I had end stage liver disease at 59 and needed a TP. so I had the capacity as an adult to deal with it. “ it was difficult “. I admire how far you have come and all you have been thru on your TP journey.
I had a pity party for my self yesterday dealing with having ca. I have cried ,angry pissed off at the world for dealing this to me. I was blessed with a second chance at life and now this. I am still very grateful for my LTP. I pray I can beat this to.
Happy Spring🌻🌼🌸
PS I think you should be pretty dam PROUD of yourself💙💚