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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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oh my Dave you have me in tears. This was beyond helpful and so informative. You just answered a few questions I had. Part of my indecision is getting a response that would eliminate me on other health complication's. I do need to feel very confident and comfortable with my team if and when it comes to that, that will help me stay in a positive mind set. Thank you from the bottom of my heart for commenting on my post and I can never get enough prayers. My prayers are with you as well.
Lisa
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5 ReactionsHi, @runninglykos. Add me to your growing list of supporters. It sounds to me like you’re going through a very scary period in your life and have been through a great deal already. I understand the difficulty of being faced with such a difficult decision, however, I feel certain that when you are able to get all of your questions and concerns addressed, that you will have the opportunity to make that decision.
I received my transplant at Mayo Rochester. I will be waiting watching to hear if you will be going there.
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5 ReactionsMorning Rosemary
Thank you. It is a difficult time and having so many questions, concerns, and the overwhelming feelings and emotions I feel is not always easy to navigate, support from amazing people like yourself means so much to me. I am set to see my doctor in 6 weeks, I was wondering if I should discuss my action plan with her and request all my medical records to be sent to Mayo? If I do that is it possible my doctor would not longer keep me as a patient. It is super hard to get in with a Liver doctor in Tucson, it would be nightmarish if she dropped me.
Lisa
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2 ReactionsLisa @runninglykos
I, too, live in Tucson, but have a different provider. My Dr. had no hesitation in referring me to Mayo, once it became clear that he’s done all that he can for me (MELD score of 23, 5 mos ago he said he thought I had about 30 days - maybe). I was in almost as bad a state as you, albeit without some of your complications, and I know that my Dr and your providers really want the best outcomes for us because they know WE ARE WORTH IT, no matter what we tell ourselves (I’m 60 and thought “why would a drunk deserve a transplant - I am unworthy” - I am not. Nor are you. I don’t see Mayo myself for about 6 weeks but am taking it as the gift it is - I strongly encourage you to do the same).
Kelly
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5 ReactionsHi Kelly
Thank you, you know exactly what I said to myself and your words hit home. Part of the reason I joined this support platform, I wanted to connect with others and get much needed insight. I am happy and excited for you my fellow Tucson resident, maybe we can connect down the line in person.
Have a great night and keep warm we are in for a cold evening.
Lisa
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1 Reaction@runninglykos, I have located a couple of links that address your concern about seeking a 2nd opinion. I think that you will find some information to help you with making a decision:
- Three Reasons Why Getting a Second Opinion Is Worth It
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/three-reasons-why-getting-a-second-opinion-is-worth-it/
- How to Ask for a Second Opinion
https://www.webmd.com/a-to-z-guides/features/how-to-ask-for-second-opinion
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I wouldn't advise you to cancel your current appointment. If I were in your situation, I would contact the Mayo Clinic Liver Transplant Department and see what they have to say about a second opinion. Here is the link to the liver department with Contact Information. You can call or send an email. They should be able to let you know whether to plan a second opinion appointment and/or what informatioin they need.
- Liver transplant expertise for complex liver issues
https://www.mayoclinic.org/departments-centers/liver-transplant/home/
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Lisa, you are doing the right thing to advocate for your health. I hope that you will be able to get the treatment at home or at Mayo.
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6 ReactionsLisa. Continue on your journey. I am one of those drunks, who was blessed with a new liver. I'm 6 years sober and living the life God wanted me to be living. Our drunk selves are not who we are and we can beat that terrible disease and live an amazing life. Forgive and love yourself. I promise others already do. You will never feel a second of judgment from mayo. They are there to help you win. God bless🙏
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5 ReactionsRosemary
Thank you! I will take advantage of those links. I appreciate your help and words of encouragement. This is a wonderful group and one of the best decisions I made in being pro active in my Healthcare. I have most of my medical records and will be faxing them to the clinic today. They will let me know if they decide to move forward. fingers crossed.
Have a wonderful day
Lisa
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4 ReactionsWishing you all the best! 💟
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1 ReactionThank You...