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!

@biteme

I was diagnosed in August of 2019. I have a MELD. score of 7. I would enjoy hearing from anyone with advice.

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Hi, @biteme Welcome to Connect. You have a very low MELD score, you are fortunate that your liver disease was apparently caught very early. I had a liver transplant in September 2016 and have not had any problems from it. I was told by the hepatologist who I went to after my cirrhosis was finally diagnosed that I probably had it for 10 years. I had symptoms that there was a serious problem starting December 2013. I actually had other symptoms before that were not considered to be serious – shaky hands, low platelets, being cold all the time, fatigue, and very severe leg cramps I was finally diagnosed in March or April of 2015.
What type of symptoms led to your diagnosis, if you don’t mind sharing? It seems as if we are all different.

@jeanne5009 A MELD that low after 3 years is great, especially if you are still able to have a good quality of life. It’s obvious that you are a positive person. I think that really does help. You can’t let the disease rule you.

@joanaiken I know that the wait for kidneys tends to be very long. Do you have any indication how much longer you will have to wait? Are you on dialysis? For some reason I never turned yellow before my liver transplant! As I said before, we are all affected differently.
JK

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@contentandwell

Hi, @biteme Welcome to Connect. You have a very low MELD score, you are fortunate that your liver disease was apparently caught very early. I had a liver transplant in September 2016 and have not had any problems from it. I was told by the hepatologist who I went to after my cirrhosis was finally diagnosed that I probably had it for 10 years. I had symptoms that there was a serious problem starting December 2013. I actually had other symptoms before that were not considered to be serious – shaky hands, low platelets, being cold all the time, fatigue, and very severe leg cramps I was finally diagnosed in March or April of 2015.
What type of symptoms led to your diagnosis, if you don’t mind sharing? It seems as if we are all different.

@jeanne5009 A MELD that low after 3 years is great, especially if you are still able to have a good quality of life. It’s obvious that you are a positive person. I think that really does help. You can’t let the disease rule you.

@joanaiken I know that the wait for kidneys tends to be very long. Do you have any indication how much longer you will have to wait? Are you on dialysis? For some reason I never turned yellow before my liver transplant! As I said before, we are all affected differently.
JK

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@contentandwell @biteme
Yes lucky so far. I have stage 4 cirrhosis with mild HE and small varices. Having issues with diaherria, interstitial cystitis and vertigo among others. Mayo is calling me in for a check. They are so good. Its a 5 hour ride but I don't mind for them to give me some answers. My PCP is awesome and watches me like a hawk too.
Sometimes I have to be my own cheerleader though…. some people tend to think I'm fine or will get better. Not an understanding support group. But, I look at it as that gives me more time to prepare them for the not so good days. They might be very surprised judging from what most of you are coping with…
Keep your spirit friends….we are stronger than most!

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@contentandwell

Hi, @biteme Welcome to Connect. You have a very low MELD score, you are fortunate that your liver disease was apparently caught very early. I had a liver transplant in September 2016 and have not had any problems from it. I was told by the hepatologist who I went to after my cirrhosis was finally diagnosed that I probably had it for 10 years. I had symptoms that there was a serious problem starting December 2013. I actually had other symptoms before that were not considered to be serious – shaky hands, low platelets, being cold all the time, fatigue, and very severe leg cramps I was finally diagnosed in March or April of 2015.
What type of symptoms led to your diagnosis, if you don’t mind sharing? It seems as if we are all different.

@jeanne5009 A MELD that low after 3 years is great, especially if you are still able to have a good quality of life. It’s obvious that you are a positive person. I think that really does help. You can’t let the disease rule you.

@joanaiken I know that the wait for kidneys tends to be very long. Do you have any indication how much longer you will have to wait? Are you on dialysis? For some reason I never turned yellow before my liver transplant! As I said before, we are all affected differently.
JK

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I went in with gallbladder pain in August last year. I was diagnosed then. I they didn't tell me that my MELD was a 17 at the time. Then I had my first visit to the transplant team and was so grateful I was at a 7. I have always been positive never a doubt or much tears other than telling my family and that was just a few minutes. I praise God everyday for continued health. My issue now is extreme lower abdominal pain here and there. I had a cat scan yesterday so I'm patiently waiting on the results. I immediately had a herniated belly button. Other than I feel great.

Thank you everyone for your support, this is my first time to reach out.
Denise

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@jeanne5009

@contentandwell @biteme
Yes lucky so far. I have stage 4 cirrhosis with mild HE and small varices. Having issues with diaherria, interstitial cystitis and vertigo among others. Mayo is calling me in for a check. They are so good. Its a 5 hour ride but I don't mind for them to give me some answers. My PCP is awesome and watches me like a hawk too.
Sometimes I have to be my own cheerleader though…. some people tend to think I'm fine or will get better. Not an understanding support group. But, I look at it as that gives me more time to prepare them for the not so good days. They might be very surprised judging from what most of you are coping with…
Keep your spirit friends….we are stronger than most!

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@jeanne5009 I always found my visits to Mass General to be reassuring too. You are lucky to have such a good PCP. I think mine cared but was sort of clueless.
I’m surprised that you are stage 4 with such a low MELD. I hope your HE is not too troublesome. My episodes were distinct and lasted from less than a day to about 3 days – those put me in a hospital. After being put on xifaxan with no lactulose I didn’t have an episode for almost a year. When they resumed I had to take lactulose also. The resumption was an indication that my liver had deteriorated further.
I looked and felt well right up until the last month. People were always commenting on how well I looked, even my PCP.
I hope if you do eventually get worse days that they will be only for a fairly short time as mine were.

@biteme you were actually lucky to have a gall bladder problem since it revealed a much bigger problem. That’s wonderful that you are feeling healthy and being positive. If you can keep that attitude it will serve you well. Even my PCP commented on that with me, that I don’t let things defeat me. It does help a lot I think. It certainly makes your life better.
I hope the results of the CAT scan are not bad, and that you will share them.
JK

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@contentandwell

Hi, @biteme Welcome to Connect. You have a very low MELD score, you are fortunate that your liver disease was apparently caught very early. I had a liver transplant in September 2016 and have not had any problems from it. I was told by the hepatologist who I went to after my cirrhosis was finally diagnosed that I probably had it for 10 years. I had symptoms that there was a serious problem starting December 2013. I actually had other symptoms before that were not considered to be serious – shaky hands, low platelets, being cold all the time, fatigue, and very severe leg cramps I was finally diagnosed in March or April of 2015.
What type of symptoms led to your diagnosis, if you don’t mind sharing? It seems as if we are all different.

@jeanne5009 A MELD that low after 3 years is great, especially if you are still able to have a good quality of life. It’s obvious that you are a positive person. I think that really does help. You can’t let the disease rule you.

@joanaiken I know that the wait for kidneys tends to be very long. Do you have any indication how much longer you will have to wait? Are you on dialysis? For some reason I never turned yellow before my liver transplant! As I said before, we are all affected differently.
JK

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When I was diagnosed with liver disease, it was when I vomited frank blood in a large volume in the middle of the night on May16th, 2007. ER then admitted to ICU. Was informed that I had cirrhosis stage 4 and would require a liver transplant. WHAM ! Just like that. The hepatologists said that I was Hep C positive and had mostly acquired it 20-30 years ago and had no symptoms. My MELD score stayed 9-12 for about a year. Was hospitalized several times for bleeding esophageal varices with EGDs performed at regular intervals with some banding. Normal bilirubin is 0.3-1.0. The docs at Mayo said that they had never operated on someone with such a high level. I was placed on the kidney transplant waiting list last September. The nephrologist wanted me to be ready for dialysis just in case. I had an AV fistula created which quickly collapsed and failed. Next step would be a graft if needed. I am surprised that the only few people that have stepped up to the plate to be a living donor have medical issues that would disqualify them. Except for my husband, but that would run into caregiver issues post op. I admit that it has been frustrating, as you have to be more sick before you can feel better. That is where I am now. Support is so invaluable right now. I am now a medically retired RN who worked with renal patients for 4 years. The thought of dialysis scares me and I am terrified that I will need it……. One thing that I have learned on this journey is that you need to advocate for yourself with the medical team.

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@joanaiken

When I was diagnosed with liver disease, it was when I vomited frank blood in a large volume in the middle of the night on May16th, 2007. ER then admitted to ICU. Was informed that I had cirrhosis stage 4 and would require a liver transplant. WHAM ! Just like that. The hepatologists said that I was Hep C positive and had mostly acquired it 20-30 years ago and had no symptoms. My MELD score stayed 9-12 for about a year. Was hospitalized several times for bleeding esophageal varices with EGDs performed at regular intervals with some banding. Normal bilirubin is 0.3-1.0. The docs at Mayo said that they had never operated on someone with such a high level. I was placed on the kidney transplant waiting list last September. The nephrologist wanted me to be ready for dialysis just in case. I had an AV fistula created which quickly collapsed and failed. Next step would be a graft if needed. I am surprised that the only few people that have stepped up to the plate to be a living donor have medical issues that would disqualify them. Except for my husband, but that would run into caregiver issues post op. I admit that it has been frustrating, as you have to be more sick before you can feel better. That is where I am now. Support is so invaluable right now. I am now a medically retired RN who worked with renal patients for 4 years. The thought of dialysis scares me and I am terrified that I will need it……. One thing that I have learned on this journey is that you need to advocate for yourself with the medical team.

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@joanaiken
Yes..yes..yes. Advocate for yourself if you are able…if not educate all caregivers….this is hard because some caregivers are better for certain things. Not everyone can comprehend the medical aspects…especially in an emergency…..

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@joanaiken

When I was diagnosed with liver disease, it was when I vomited frank blood in a large volume in the middle of the night on May16th, 2007. ER then admitted to ICU. Was informed that I had cirrhosis stage 4 and would require a liver transplant. WHAM ! Just like that. The hepatologists said that I was Hep C positive and had mostly acquired it 20-30 years ago and had no symptoms. My MELD score stayed 9-12 for about a year. Was hospitalized several times for bleeding esophageal varices with EGDs performed at regular intervals with some banding. Normal bilirubin is 0.3-1.0. The docs at Mayo said that they had never operated on someone with such a high level. I was placed on the kidney transplant waiting list last September. The nephrologist wanted me to be ready for dialysis just in case. I had an AV fistula created which quickly collapsed and failed. Next step would be a graft if needed. I am surprised that the only few people that have stepped up to the plate to be a living donor have medical issues that would disqualify them. Except for my husband, but that would run into caregiver issues post op. I admit that it has been frustrating, as you have to be more sick before you can feel better. That is where I am now. Support is so invaluable right now. I am now a medically retired RN who worked with renal patients for 4 years. The thought of dialysis scares me and I am terrified that I will need it……. One thing that I have learned on this journey is that you need to advocate for yourself with the medical team.

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@joanaiken You have surely been through a lot with two liver transplants and now needing a kidney transplant. Did the immunosuppressants cause the need for a kidney transplant? I used to participate in a different liver group and I recall one person saying that their transplant center had told them that eventually they would probably need a kidney transplant due to the immunosuppressants. My transplant center, Mass General in Boston, has been very pro-active. When my creatinine went up they changed my immunosuppressant. They really stay on top of everything and tend to be conservative, which I like.
I know the thought of dialysis is daunting but I have known a number of people who have led very good lives while having dialysis a number of days a week. My niece's husband was on dialysis for about five years. They used to travel within the country and set up dialysis ahead of time at a hospital close to where they would be. He finally got his new kidney last August.
I hope your wait will not be as long as his was.
Best hope is that you do find someone who will be a live donor for you. If that doesn't happen I hope your wait isn't too long for a cadaver kidney.
You are fortunate to have your husband there with you to be your caretaker. I had the same good fortune. Our son and daughter live out of state so they were here only in spirit and for occasional visits.
Being a retired RN does give you a better appreciation for all of this, but also probably makes you more conscious of which nurses are great and which are not so great. When I was in my local hospital a few times pre-transplant for HE episodes, most of the nurses were "not so great". When I was in Mass General every nurse I had was great.
Hugs, JK

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Thank you. Yes, I was informed by the transplant hepatologist that about 20% of successful liver transplants will need kidney intervention. I take Prograf and have been on 1.5 mg BID for years and has kept my liver stable. Last November I had labs drawn and my Prograf level was elevated. My dose was decreased to 0.5 mg BID. My renal numbers improved. This AM I had labs drawn and my liver enzymes were dramatically elevated. Mayo called and wants a repeat lab tomorrow AM. Maybe an ultrasound or biopsy depending on the results. I am a seasoned RN but this is complex, even for me.
When I had my second liver transplant I was very ill, given about 72 hrs to live. That surgery was complicated due to scar tissue. Prior to them finding a liver my kidneys failed and were considered "injured" which led to the kidney failure. I had intensive hemodialysis which saved me. Yes, the Prograf is nephrotoxic and contributed to the renal failure. It is a real balancing act in managing both organs.
Being a patient has given me a new perspective on being a nurse. I consider that a gift. A few years ago my friend suggested I write a book. I thought about the title Both Sides of the Bedpan. LOL
Thank you for the encouraging words about dialysis. My fear is an overreaction based on what I have seen.

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@contentandwell

@joanaiken You have surely been through a lot with two liver transplants and now needing a kidney transplant. Did the immunosuppressants cause the need for a kidney transplant? I used to participate in a different liver group and I recall one person saying that their transplant center had told them that eventually they would probably need a kidney transplant due to the immunosuppressants. My transplant center, Mass General in Boston, has been very pro-active. When my creatinine went up they changed my immunosuppressant. They really stay on top of everything and tend to be conservative, which I like.
I know the thought of dialysis is daunting but I have known a number of people who have led very good lives while having dialysis a number of days a week. My niece's husband was on dialysis for about five years. They used to travel within the country and set up dialysis ahead of time at a hospital close to where they would be. He finally got his new kidney last August.
I hope your wait will not be as long as his was.
Best hope is that you do find someone who will be a live donor for you. If that doesn't happen I hope your wait isn't too long for a cadaver kidney.
You are fortunate to have your husband there with you to be your caretaker. I had the same good fortune. Our son and daughter live out of state so they were here only in spirit and for occasional visits.
Being a retired RN does give you a better appreciation for all of this, but also probably makes you more conscious of which nurses are great and which are not so great. When I was in my local hospital a few times pre-transplant for HE episodes, most of the nurses were "not so great". When I was in Mass General every nurse I had was great.
Hugs, JK

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@contentandwell ..I have never been advised nor has it ever been mentioned to me that my immunosuppressant ( tacrilomus- prograf ) could cause me kidney problems! Is this something I should be asking about at my next hepatologist meeting?

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Absolutely and ASAP.

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Probably.

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@gaylea1

@contentandwell ..I have never been advised nor has it ever been mentioned to me that my immunosuppressant ( tacrilomus- prograf ) could cause me kidney problems! Is this something I should be asking about at my next hepatologist meeting?

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@gaylea1 I presume you get regular lab work done. If your creatinine (and I think BUN too) is within range then you don't need to worry. Mine was going high so they told me to drink 80 – 100 ounces of water/fluid a day. That didn't do it enough for me so they switched me from tacrolimus (Prograf) to sirolimus (Rapamune).
You still see a hepatologist post-transplant? At my hospital, after transplant you no longer see the hepatologist, just the transplant team. All hospitals seem to have slightly different protocols.
Bottom line — if they are not concerned then you don't need to be either!
JK

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Has anybody ever read the information literature that comes with your medications?
Whenever I get my refills from the Mayo Specialty Pharmacy I get a very detailed information sheet. When I get a medication from my local pharmacy, I usually must ask for the information sheet/Medication Guide..
When I first read the long list of risks and potential side effects for my transplant medications, I was surprised and also worried. So, I began my list of concerns and…my transplant doctor or nurse has always been most helpful. They have explained to me about what this means for me and how they are going to monitor the health of my transplanted organs. And equally important they told me what I need to do help keep my organs healthy.

If you want to read about Sirilimus, Tacrolimus, and other medicatioins, you can find an alphabetical listing of Drugs and Supplements at:
https://www.mayoclinic.org/patient-care-and-health-information
Here are some highlights that I read – The dosing for both of these medicines will be different for every patient. And the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. The medicine usually comes with a Medication Guide and patient directions. Read them carefully and make sure you understand them before taking this medicine. If you have any questions, ask your doctor.

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@rosemarya

Has anybody ever read the information literature that comes with your medications?
Whenever I get my refills from the Mayo Specialty Pharmacy I get a very detailed information sheet. When I get a medication from my local pharmacy, I usually must ask for the information sheet/Medication Guide..
When I first read the long list of risks and potential side effects for my transplant medications, I was surprised and also worried. So, I began my list of concerns and…my transplant doctor or nurse has always been most helpful. They have explained to me about what this means for me and how they are going to monitor the health of my transplanted organs. And equally important they told me what I need to do help keep my organs healthy.

If you want to read about Sirilimus, Tacrolimus, and other medicatioins, you can find an alphabetical listing of Drugs and Supplements at:
https://www.mayoclinic.org/patient-care-and-health-information
Here are some highlights that I read – The dosing for both of these medicines will be different for every patient. And the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. The medicine usually comes with a Medication Guide and patient directions. Read them carefully and make sure you understand them before taking this medicine. If you have any questions, ask your doctor.

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Excellent response.

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