Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@contentandwell

@benlam11 I am relieved for you that they found the root of your problems. Medications are such a double-edged sword — they are good for certain things but can cause other problems. I was on Furosemide for a while, near the end of my pre-transplant time and it didn't cause me a problem but a number of other medications did, particularly one that if I remember correctly was for nausea.

That's great that Mayo has been so good for you. I feel the same way about Mass General. From what I have heard most of these transplant centers have really excellent teams and are very caring. There are a few that operate at less than expected but overall most are quite good. I know at this point that if I ever need hospitalization I will head right down to Boston to go to MGH.
JK

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I am a transplant patient too and I too am interested in how you came to be in the hospital. I was in the hospital at Mayo for 6 months after my transplant with complications. Let me know about your transplant experience( all of you in this conversation.)
Christine
Christine

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@christinelouise

I am a transplant patient too and I too am interested in how you came to be in the hospital. I was in the hospital at Mayo for 6 months after my transplant with complications. Let me know about your transplant experience( all of you in this conversation.)
Christine
Christine

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@CHRSTINELOUISE, Six months in the the hospital must have been quite a trial and then afterwards as well. I hope you are doing well now. Transplant experiences are so different. It's hard to compare cases. I had a rejection scare three days after discharge that put me back in the hospital for three days on IV TACROLIMUS. I am currently 13 months +/- post OP. My Transplant clinic Nurse lowered my Magnesium to 200 mg. Twice a day, and wanted to discontinue Urso, but the doctor wanted to stay with the protocol. I wish you all the best. My hospital was selected for me on a first bed avialable protocol. I did how ever end up at my first choice.Tim

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@christinelouise

I am a transplant patient too and I too am interested in how you came to be in the hospital. I was in the hospital at Mayo for 6 months after my transplant with complications. Let me know about your transplant experience( all of you in this conversation.)
Christine
Christine

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@christinelouise I am not sure of exactly what you mean. I was in a hospital a number of times pre-transplant, for short stays. A few hospitalizations were due to HE episodes, and then a couple were for other problems, like very low blood counts — hemoglobin and hematocrit. Those numbers were so low that the doctor at my local ER said I could have gone into cardiac arrest. I was sent by ambulance to Mass General and had a few transfusions which solved the problem.
I was only Mass General for six days following my transplant. I'm sorry that you were in for so long, what was the cause of that? I can't imagine being in a hospital for six months. When was your transplant and how are you now?
My experience was very positive. I recovered amazingly quickly and have felt great ever since. I feel very blessed to have been given this second chance at life.

@luckonetj Having a potential rejection must have been scary. I am glad you are doing well now. I am thankful that my new liver and I have gotten along well right from the start. The only problem I have had was that tacrolimus was causing my creatinine to go high so first, they had me drinking 80 – 100 ounces of fluid a day. That didn't have the desired results so they then changed my immunosuppressant to sirolimus. That has worked out well. I do still drink all of that water.
I have never heard of a hospital being selected for a patient. What state are you in? My transplant was at Mass General and from what I know the patient chooses the hospital where they want to be listed. There are four hospitals in MA that do adult liver transplants, two in Boston, one in Burlington, and one in Worcester.
JK

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@christinelouise I to have higher creatinine levels with Tacrolimus just past the normal range. I'll mention sirolimus to my nurse next time. They attributed the hi levels of creatinine to the Antiviral I was on. I do have to drink more water during the day. Doctors orders.

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@luckonetj My creatinine levels were up around 140 and even some times up to 150. That was why I was switched to sirolimus. I actually like the sirolimus more because I only have to take it once a day and I choose to do that in the morning about an hour or more before breakfast. As with tacrolimus, you can take it with or without food but you must be consistent. If I had to take a second dose later in the day it would be more difficult for me to be consistent, especially when we are in a different time zone. I like taking it without food because I was able to lower my dosage from 4mg to 2.5mg. Anytime I can take less medication I consider it a win.
JK

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I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

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@tayloryvette

I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

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Hi and keep strong. I'm a post transplant patient. Are you having any problem with fluid build up? I sure did. Talk to your Dr's. They can petition you to get higher up the transplant list based on your situation.

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Thanks and yes. I struggle with even wanting to eat sometimes. I only weigh 125. I lost another 3 lbs. this week. Thank you for the encouragement. so needed and appreciated. Congrats on your recovery! Gives me hope!

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@tayloryvette

Thanks and yes. I struggle with even wanting to eat sometimes. I only weigh 125. I lost another 3 lbs. this week. Thank you for the encouragement. so needed and appreciated. Congrats on your recovery! Gives me hope!

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Tayloryvette, I am post transplant and lived with liver disease for 10 years from the first signs that was a almost fatal esophageal varasies to acites 10 years later. I lived with a MELD score in the teens for Years. Acities kicked in 6 months before my transplant . I went about my daily life until I had sever flue like symptoms at which time I was addmited to the hospital and then transferred to the transplant hospital. It sounds like you already have selected a transplant hospital so you should be in good shape. It's a good thing that you are reasonably heathy with a lower Meld score. Good luck.

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Taylor, hang in there. I now live in Las Vegas, however since liver transplants are not available in Nevada, I started researching transplant centers. For me I chose the MAYO in Phoenix and started the getting ready tests in Feb. of this year. I was almost complete (Stage 5 Kidney Disease and non-alcoholic cirrhosis of the liver). After a long story, I'll skip – I was emergency transferred from Las Vegas to Phoenix. Had my last test (angiogram – if you don't pass – no transplant – and was sent to my accommodations. That Night after being on the list for just a few hours – they had a donor that was an exact match. My liver (I'm only 6 weeks out) has been normal almost no pain – my kidney is another issue. Get to a Great transplant center and ask approximate waiting times. Here in Phoenix it's usually months – instead of years elsewhere Also look at their success rate now and several years out. Do not delay.

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@tayloryvette

I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

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Tayloryvette, Taylor, I am sorry that you are going thru this miserable time. Are you currently under the care of a liver specialist? What is the diagnosis for your liver failure?

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@suzeaz

Hi and keep strong. I'm a post transplant patient. Are you having any problem with fluid build up? I sure did. Talk to your Dr's. They can petition you to get higher up the transplant list based on your situation.

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@suzeaz, Welcome to Connect. How long ago did you receive your transplant? How are you doing now?

You are absolutely correct to encourage patients to talk with their doctor. Liver disease and transplant require a team effort between doctors and patient.
@tayloryvette, Here is some information about the MELD score written by the transplant staff that supports your menton about petitions by the doctor in some cases.
Pages>ransplant>The MELD Score: Definitions and Frequently Asked Questions
https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

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Just out of curiosity does anybody have any credible information out there regarding cellular memory transference? My wife and I were talking about that the other day. We are both Packer fans….she said as long as I don’t instantly become a Vikings fan it’s all good. 🙂

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@rodney9999

Just out of curiosity does anybody have any credible information out there regarding cellular memory transference? My wife and I were talking about that the other day. We are both Packer fans….she said as long as I don’t instantly become a Vikings fan it’s all good. 🙂

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@rodney9999 You got me curious about this so I did some googling. Most of the traits and tastes that people think they may have acquired from their donor can be explained by other things. Simply going through what we have gone through can have an effect on a person. I am pretty much the same person I was before, perhaps a bit more sympathetic but that was always a trait of mine. If I had to come up with any change in me I think I enjoy moderately hot (spicy) foods more than I used to but I also think that as a person ages their taste buds are not as strong so that could be the reason for that.
JK

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@tayloryvette

I too am a pre-liver transplant candidate and have just as many questions, however, I wanted to introduce myself. Taylor is my nick name, I live in very rural part of Michigan with my husband, a dog and a cat. Now a Real Estate Agent, I was a Restaurant/Bar owner and in the business for 30 years. . Just never thought Liver Disease would slowly creep in and take over my body without feeling or knowing a thing. Scary! I am in my 4th year with end-stage and getting more and more scared. My meld score went from a 16 down to a 10, 2 years ago, however I am scheduled for a current assessment and labs to determine if it has gone back up. My symptoms slowly returning are telling me to get the transplant process moving. Waiting on a number is insane.

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Hi Taylor

Please try not to be too scared. I, too, lived in a rural area with my husband and our animals; we had a busy hotel an , yes, liver disease, can creep up on you especially when you are so busy and distracted all the time. I was ill for four years without realising what was wrong until the physical symptoms became so bad that i sought help from my GP. After that, I was in the hands of my consultants and hospital who were wonderful.

I had my transplant five years ago and I feel as if I have a whole new life. I am on minimal medication and, honestly, some days I think it was all a dream. It was also a good learning experience is so many ways so it's not all negative by any means. I have a better life now and I value that life more than ever.

I know that I am in the unusual position of having no financial worries as health care here in Scotland is completely free. I am so sad when I hear the stories on this wonderful forum about people struggling to pay for care and medication.

Please be assured that members of this forum will give you all the help and advice you need. I wish I had known about it when I had my own transplant. There is a wonderful life waiting for you after your transplant.

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