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!

@joanaiken

Excellent response.

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@joanaiken, Every year for my annual eval, I undergo a series of tests that monitor the function of my liver and my kidney – as would be expected. The minimum amount of tests includes these basic ones: blood tests, urine samples, a renal function test, ECG, X-rays, abdominal ultrasound, and on protocol years (1,2,3,5,10) a biopsy of my transplanted kidney. I had always thought that the renal function test was because I have a kidney transplant, however, I have met several other transplant folks in that waiting room, and I think the nurse told me that all transplant patients have the kidney function test.
Since you have a liver transplant, do you mind if I ask you, Have you had the renal function tests? (involves passing and measurement of urine quantity, blood draw, dye injection) If so, did the results show evidence of your advancing kidney failure?

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Yep. I have had annual evaluations for 10 years. The last few have not included biopsy unless indicated. Funny you should mention biopsy. I have one with ultrasound scheduled, along with repeat labs on Monday morning. Had 2 sets of labs drawn this week that showed a dramatic increase in the liver enzymes. I am a nervous wreck today. I think this is due to a Prograf dose decrease about 3 months ago . The dose was bumped up starting this PM. It has been quite the journey in managing both the kidney and liver. Thanks for hearing me out.

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@rosemarya

@joanaiken, Every year for my annual eval, I undergo a series of tests that monitor the function of my liver and my kidney – as would be expected. The minimum amount of tests includes these basic ones: blood tests, urine samples, a renal function test, ECG, X-rays, abdominal ultrasound, and on protocol years (1,2,3,5,10) a biopsy of my transplanted kidney. I had always thought that the renal function test was because I have a kidney transplant, however, I have met several other transplant folks in that waiting room, and I think the nurse told me that all transplant patients have the kidney function test.
Since you have a liver transplant, do you mind if I ask you, Have you had the renal function tests? (involves passing and measurement of urine quantity, blood draw, dye injection) If so, did the results show evidence of your advancing kidney failure?

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@rosemarya I have never had a renal function test? This is the first I've been hearing about this.

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@contentandwell

@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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@contentandwell. The (liver) transplant team is made up of a group of hepatologists at University Hospital. I do have labs done every month still. They are keeping a close eye on me. I normally drink at least 64 oz water daily. I do have some symptoms, loss of appetite, restless nights and some diziness.

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@rosemarya

@rrichardparker, I want to re-welcome you to Connect. It has been a while since I have seen you in the transplant group. I am also a transplant recipient. I joined Mayo Connect because I wanted to meet and to learn from other transplant patients. I learned that as a recipient, I can share my own experiences to help others along their own journey. I have a feeling that you have learned a lot from your transplant, as well as how to manage your self care for 6 post transplant years.

Are you interested in supporting others who are like yourself?
I invite you to look thru the transplant discussions that are happening because there have been a lot of new members and conversations. You are always welcome to join in anywhere, with your own comments, questions, and helpful suggestions.
How can I help you get started?

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It’s always helpful to hear how others are managing or managed your journey through transplant. I am currently listed for liver/kidney transplant. So far I have had four false alarms. I find that after each one- it’s such a let down. I have had all the prep for transplant down to the shower and IV. Although I am very happy for the potential opportunity, each time… the waiting is hard.

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Power through ! It is so worth it. Best wishes.

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@birdienanie

It’s always helpful to hear how others are managing or managed your journey through transplant. I am currently listed for liver/kidney transplant. So far I have had four false alarms. I find that after each one- it’s such a let down. I have had all the prep for transplant down to the shower and IV. Although I am very happy for the potential opportunity, each time… the waiting is hard.

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@birdienanie I also went through the whole prep…ready to be transplanted but it fell through. The excitement and the let down were a set back emotionally but when my call finally came I was fully prepared. Hang in there it may come totally out of the blue. I was all ready for a late night or early morning call but it ended up being a 12 noon call and I was elated..

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@gaylea1

@birdienanie I also went through the whole prep…ready to be transplanted but it fell through. The excitement and the let down were a set back emotionally but when my call finally came I was fully prepared. Hang in there it may come totally out of the blue. I was all ready for a late night or early morning call but it ended up being a 12 noon call and I was elated..

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Thank you

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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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@rosemary Good link. My transplant does keep a careful watch on everything that involves my transplant. They leave other issues to my PCP, I think that is unlike Mayo.
On my lab work last week my sirolimus was a bit higher than it had been and they called me about it. They are leaving me as is for now but want me to get tested again sooner than usual so if it is higher they can decrease my medication. They want it at the lowest dose that will protect my liver but at the same time not leave me too unprotected to germs and infections.
Unfortunately, my blood counts cause me to have to continue prednisone. 😥
JK

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@gaylea1

@contentandwell. The (liver) transplant team is made up of a group of hepatologists at University Hospital. I do have labs done every month still. They are keeping a close eye on me. I normally drink at least 64 oz water daily. I do have some symptoms, loss of appetite, restless nights and some diziness.

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@gaylea1 At Mass General they do work in cooperation with each other of course but pre-transplant you generally only see the hepatologist, and post only the transplant team. The hepatologist has let me know though that she is there for me if I need anything.

I never had a false alarm call. Like you, I was called at right around noon. We got to the hospital in mid-afternoon, but the transplant didn't occur until about 12:30 A.M.
When they called I asked if I could take a shower before I came and they said no! Come right away. I suspect they just wanted to have me there to make sure I had nothing to eat in the pre-surgery time.
JK

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@contentandwell

@rosemary Good link. My transplant does keep a careful watch on everything that involves my transplant. They leave other issues to my PCP, I think that is unlike Mayo.
On my lab work last week my sirolimus was a bit higher than it had been and they called me about it. They are leaving me as is for now but want me to get tested again sooner than usual so if it is higher they can decrease my medication. They want it at the lowest dose that will protect my liver but at the same time not leave me too unprotected to germs and infections.
Unfortunately, my blood counts cause me to have to continue prednisone. 😥
JK

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I feel ya.

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@joanaiken

Yep. I have had annual evaluations for 10 years. The last few have not included biopsy unless indicated. Funny you should mention biopsy. I have one with ultrasound scheduled, along with repeat labs on Monday morning. Had 2 sets of labs drawn this week that showed a dramatic increase in the liver enzymes. I am a nervous wreck today. I think this is due to a Prograf dose decrease about 3 months ago . The dose was bumped up starting this PM. It has been quite the journey in managing both the kidney and liver. Thanks for hearing me out.

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@joanaiken, I'll be thinking of you tomorrow and hoping that the results of the biopsy are satisfactory. It will be probably be a long and stressful day for you.
Hugs,

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Thank you so very much, Rosemary! I am ok with the procedure. Mayo has liver biopsies down to a tolerable experience. I have had several through the years. It's more the 40 mg of Prednisone that has been rather distracting. LOL Hugs back.

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I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

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@jeanne5009

I'm in FL and would love to be part of the group. Anyhing about HE interests me. I am ESLD and have moderate HE. Meld is 8 and Mayo sees me every 6 months unless needed.

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I go to mayo mn,and evey 3 months my meld is 19. And get HE often. I get it so bad i spend days in the hospital and even been transford to bigger hospital's

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