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on the fence with decision-making
Good Morning everyone
My name is Lisa and I have end stage cirrhosis. I am having a hard time deciding to move forward and committing to the process of being put on the transplant list.
A bit of back round information on me, I am 55 soon to be 56 I was given the news of my diagnosis end stage cirrhosis in august of 2023. To be clear I really had no idea I was so sick or that my liver was shot, I was not always an alcoholic and in my diluted mind considered 10 years of hard drinking nothing in comparison to 20 or 30 years. I come from alcoholism on both sides of my family.
back to the issues. The night I was rushed to the hospital I was bleeding out, blood was exciting my body with every path it had at it's disposal, by the time I arrived at the hospital I had filled the vomit bag 85% full with blood and no longer had control of my bowels. I was in serious trouble, they rushed me to surgery to put a stint in my liver, by this time I was no longer conscious, but the varices were bleeding so bad in my throat they had to inflate a balloon to try and stop the bleeding first, 8 hours passed and I was still alive but the bleeding had not stopped, it would not be long before I bled to death. The doctor in charge made the decision to leave the balloon in longer than typically permitted. They threw the hail Mary and by the grace of god the bleeding stopped after almost 12 ⏳ they put the stint in my liver but not before They told my family I had less than a 5% chance of making it, well I made it, but not doing good, the doctor said they just did not have the specialists or equipment to help me any further, I was transferred to Banner in a coma and close to death. Banner liver transplant team decided the stint that was put in was not long enough and needed to be fixed. Back to surgery, they extended the stint I started to turn around.
a few weeks later I was sent home. My meld score was 16 in the hospital, of course they could not stress enough to never drink again and that I needed to work on getting clean and being put on the transplant list.
At the time I drank, smoked cigarettes and smoked medical pot. I have been clean and sober for 17 months, my meld score started to go down slowly over a year to 11, unfortunately the last 6 months it is back on the rise up to 14 last time my doctor checked. She has done every test to see what could cause the bilirubin increase. no cancer, no jaundice, no kidney problems, tips is paten and so on.
Finally my question? I have been doing a lot of reading and each case is very individualized and no 2 people react the same to a transplant.
In the end I question if a transplant is worth a few more years? I have other medical conditions and they consider me high risk. Aren't we all high risk at this point? I just don't know...
Thank you Lisa
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I am so sorry for what you are going through. I too ended up at the hospital very very sick. I went for a regular check up and my doctor basically wouldn't let me leave. The journey through transplant can be daunting at times but a good support system and a good team of doctors will get you there if your doctors feel that you are a candidate for a transplant I would encourage by all means to start that Journey with them. You will be amazed at how different you will feel once you heal and things start turning around. My doctors come in all the time I was a mess I was just bright yellow with jaundice I had muscle atrophy I was bloated and I had no energy or strength I'm a totally different person today and there's many many years potentially of living after transplantation people live years. Your doctors would not put you through a transplant if they didn't think it was worth it for you so I would encourage you to listen to your doctors find a good transplant team. I went to mayo in Rochester. What they can do today with medicine and transplantation is a miracle and I hope you can find a way to just trust the process and I think you'll find that you're worth giving yourself more years. good luck to you
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6 ReactionsThank You for sharing, needed to read that...
Hi, Lisa (@runninglykos).
First of all, I'm glad you "made it" after being so sick.
Yes, the decision as to whether or not to go through the transplant process is daunting. I am older than you and had a kidney transplant one year ago, even though I had more conditions than you can imagine. Because of that, I never thought I would be approved and receive a transplant. But I did, and I'm doing very well.
Ultimately, the decision is yours to make, but I just want to let you know that medical technology is so advanced when it comes to transplants these days. Doctors are having great success even in complicated cases where patients (like me and you) are dealing with multiple conditions.
Hopefully, you can at least consult with a good reputable teaching hospital like Mayo who can assess your situation and address your concerns so that you can make the best informed decision. I stress a good teaching hospital because most smaller rural or regional hospitals do not have the expertise as Mayo and other teaching hospitals have. They are able and willing to take on the more complicated cases and, seemingly, work miracles. I feel like that's what happened in my case. Wishing you all the best!
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2 Reactionsthank you for sharing. this is so helpful, I am with banner university and they have a fairly advanced transplant team, but I do not see them directly, since I left the hospital I have been under the care of one of the head liver doctors NP. She is very good, but I want a more direct avenue to my questions and care. I contacted Mayo myself in a proactive approach. I feel a little guilty Banner and the liver team saved my life.
Thank you. Lisa
Don't feel bad, Lisa. Banner carried out their assignment at the time, and they did it well because they saved your life. But the next step in your journey may be an assigment for a different medical facility. You have to go with whoever is best for you, your health, and your future at any given time. And it may not always be the same facility. Any reputable facility will only want the best for you, even if they aren't the ones to carry out the treatment.
Have you heard back from Mayo yet, or are you still waiting?
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5 Reactionsmy44 thank you so much beyond helpful. Mayo was excellent in responding to me within 48 hours. They need my medical records of course to look at my case and see if I am a candidate for even starting the process. I have yet to do so, in light of not be sure of my decision and for feeling a bit guilty. I have no doubt Banner only wants the best for me and would help me no matter what team I may decide on. My research and gut instinct tells me Mayo is the place I need to be. They are a 5 hour drive from me so I am lucky to be within a few hours of them.
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4 ReactionsHi, Lisa.
You listed several "positives" in your post. 1. You feel that Banner would want the best for you. 2. You've been researching and that research seems to be leading you in a certain direction. 3. Mayo promptly responded to you and has requested your records, which means they are willing to at least look at your case. 4. You're within a few hours of Mayo. And 4. Your gut is telling you that Mayo is the place you need to be. For a lot of people, that gut feeling is what usually indicates the path they need to pursue.
But you want to be very sure. So,
I encourage you to continue with your research and compile all the information you need, get Mayo the records they requested for review, and see where that leads you as far as next steps.
Best wishes to you on this journey. You have the support of everybody here at Connect. Continue reaching out to us if you need to, and please keep us posted as to how things go for you.
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8 Reactionsthank you so much, I truly appreciate all your encouragement and words of wisdom. I do have a lot of positives and I am so glad I decided to join this supportive group. my44 you should be a counselor, I hope you do not take this wrong but you feel like one of my moms hugs, she has been struggling with my situation and has emotionally checked out, it's hard but I understand. I will be sure to post my progress.
wishing you and everyone all my best Lisa.
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5 ReactionsHi, Lisa.
I am always glad to help in any way that I can. And guess what? I'm not offended by being compared to one of your mom's hugs. Actually, I take that as one of the best compliments ever! So thank you for that. You made my day. 😊
I look forward to your updates.
Take good care of yourself. 💕
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2 ReactionsHi Lisa,
This is my fourth attempt at responding to your post. I feel for you and your situation, remembering where I was nearly a year and a half ago. So, here are a couple of internet-safe thoughts.
I understand the loyalty to the place that saved your life. (I still look forward to visiting Mayo.) But, your liver's a big deal. Second opinions are normal and can be helpful to you. The more information, the better. If you don't like Mayo, you can always return to Banner.
If you do decide on having a transplant, mindset is everything. You need to be confident in your information, your medical team, your support, and yourself. It can be scary, no doubt. You'll need all of them, and then some, when the time comes. But, if I read it correctly, you're in the 5%, so you'll be just fine. 🙂
Getting on the transplant team's radar is not a bad thing. I went through the evaluation process twice: once in Boston when I lived in NY and again at Mayo-Jacksonville. My answer in Boston was not yet; I was still too healthy. However, that evaluation work supported my Mayo evaluation, which aided in getting listed. So, you may not get listed, but you'll have a baseline if things get worse. And you'll get a better understanding of how your other medical issues might impact/influence the possibility of a transplant.
You're in my prayers.
Dave
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