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!

@luckonetj

@livertrex, I wish you the best and a speedy recovery. Are the Doctors recommending A partial Liver section? My liver specialist specialized in such surgeries.

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No, I have cirrhosis that I contacted when I had hepatitis seeing 2006 attract attract. I'm on the list for a liver transplant.

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@contentandwell

@gaylea1 What does the doctor say about still being light headed? I had nothing like that after my transplant, just some fatigue for a while. I hope the light-headedness goes away soon, I would not want to live like that on a daily basis. Is it pretty much all of the time?
JK

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I had my Liver, Kidney transplant 4 weeks ago and in the past week I've become very light-headed after walking 100' indoors. MAYO needs to do some checking, especially since I fell while using a walker. I'ts just like for a few seconds every bone in my body disappeared while I never got dizzy or shaky and was able to continue a conversation from my new floor view. I'm now stuck in a wheelchair anytime I go more than 100'. If anyone else has been though this, please advise. The MAYO in Phoenix also seems to have a bedsore problem as several people I've spoken with (all multiple organ transplants) seem to have this same problem. And after asking for a week – while in the Hospital Bed – it was largely ignored. While the Hospital is incredible some of the auxiliary patient support systems (scheduling) are not at the level as the rest of the Hospital.

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@kltchrmn

@jim1208 I have signs of HE at 11. Shaking hands at times, easily off-balance, slowdown in speech, difficult word retrieval. My worst episode was in December 2017. Was hospitalized after a bout with norovirus – total lack of memory. My MELD has gone down since then. No serious attacks since then, just the symptoms.

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I had two episodes of HE before my transplant which required hospitalization. My doctors said that they were caused by constipation which allowed the toxins and amonia to build up in my system I am surprised not to hear mention of the dreaded Lactulose! The cure for HE for me was several days of really high doses which literally cleaned out my system! It was horrific but it worked. Afterwards, I made sure that I took my Lactulose every day and I had no more episodes.

It's horrible stuff but it works.

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@benlam11, I am happy to hear that you have received your liver transplant. Congratulations!
At 4 weeks you are at the beginning of your recovery and from my experience, the body needs time to get comfortable with its new organ plus recovery from a major surgery.
I am concerned, as you are, about your fall. Were you able to walk without assistance prior to your transplant? Did you come into transplant with any mobility issues? I ask because I had been active all my life, and my liver/kidney failure knocked me down, but with medical intervention and physical therapy, I did manage to regain some physical improvement prior to transplant surgery. I returned to my home 3 weeks after my transplant to gradually return to a new normal.

I assume that you are having frequent labs drawn to measure the levels of your antirejection meds? These can be hard to get adjusted to correct level in the beginning, too. Have you contacted your nurse coordinator?

Benlam11, The Office of Patient Experience is where to address concerns about your care experience at Mayo Clinic via phone, email, or letter. The Patient Experience staff are not equipped or authorized to answer medical questions or provide follow-up care.
Scottsdale or Phoenix campus: ARZOPE@mayo.edu 480-342-2651

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@livertrex

No, I have cirrhosis that I contacted when I had hepatitis seeing 2006 attract attract. I'm on the list for a liver transplant.

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@livertrex,
I would like to share some information that might be helpful to you and to others.
Liver Cancer.
https://www.mayoclinic.org/diseases-conditions/liver-cancer/symptoms-causes/syc-20353659

Infographic: Liver Cancer
https://www.mayoclinic.org/diseases-conditions/liver-cancer/multimedia/liver-cancer-infographic/ifg-20442997

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Yes, I am very interested in Tacrolimus adverse reactions.

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@jim1208

I can sleep them off. I definitely feel like I am losing my mind. Always dizzy and lightheaded. My right hand has started shaking some now.

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@jim1208 My shaky hands started long before I had HE episodes. At the time the doctor I went to said they were essential tremor, but since they no longer shake they were definitely from cirrhosis.
The hepatologist I went to after being diagnosed said I probably had cirrhosis for about 10 years, it takes that long for symptoms to really become apparent. During that time not only did I have shaky hands but my platelet count was dropping more and more. I was going to a hematologist for that and he diagnosed it as Immune thrombocytopenia (ITP). That generally causes bruising though and I did not have any unexpected bruising, just what is typical. I was also diagnosed with diabetes during that time, another tie-in with cirrhosis.

@kltchrmn Interestingly, I also had norovirus during my wait for a liver transplant. Coincidental? I still have some difficulty with word retrieval but I attribute that to getting older.

@luckonetj I was pretty good with HE before my transplant. I was on both xifaxan and lactulose and that seemed to keep me cognizant. I did have a hospital stay at one point in July but that episode was short-lived. They must have discharged me too soon though because I was home for one day and then back in the hospital for a day. I never got talkative, just the opposite. I became withdrawn and one time when I had a really bad episode I was almost catatonic. I actually remember that well. It was like I was a spectator to what was going on around me.
I live in NH and there are no liver transplant centers here. I am only about 55 miles north of Boston though so when I was finally diagnosed I went to a hepatologist there, at Mass General Hospital. She was great as are all of the transplant doctors. I feel so fortunate to have them so close by. There are two hepatologists in NH, up north at Dartmouth-Hitchcock Hospital.

@gaylea1 More exercise certainly cannot hurt. So, your doctor has not indicated if this is typical, and hopefully temporary?

@livertrex I too had malignant lesions in my liver from cirrhosis. They ablated them but there was still a trace when they dissected my liver after transplant so now I have to go for yearly MRIs. I never had fluid removed. I had no problem with it until about a month before I had my transplant. At that point I felt like I had a barrel around me. I had lost weight and thankfully saved my older clothes because otherwise I would have had nothing to wear. I did have off and on problems with edema which also got very bad shortly before my transplant. I could not get any shoes on my feet, just slippers.
JK

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@musicman2019

Yes, I am very interested in Tacrolimus adverse reactions.

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@musicman2019 I don't have any of the listed side effects of TACROLIMUS. My labs confirmed I have extremely low T that will be treated by hormone shots this month. I read it is common with male transplant recipients.

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@benlam11

I had my Liver, Kidney transplant 4 weeks ago and in the past week I've become very light-headed after walking 100' indoors. MAYO needs to do some checking, especially since I fell while using a walker. I'ts just like for a few seconds every bone in my body disappeared while I never got dizzy or shaky and was able to continue a conversation from my new floor view. I'm now stuck in a wheelchair anytime I go more than 100'. If anyone else has been though this, please advise. The MAYO in Phoenix also seems to have a bedsore problem as several people I've spoken with (all multiple organ transplants) seem to have this same problem. And after asking for a week – while in the Hospital Bed – it was largely ignored. While the Hospital is incredible some of the auxiliary patient support systems (scheduling) are not at the level as the rest of the Hospital.

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@benlam11 Congratulations on your transplant, it's such a relief to be on the other side.

Did you have any mobility problems prior to transplant? Your fall sounds very unusual. What did your doctor say about it?

I have not heard of people getting bedsores in the hospital but I am not at Mayo. Were you able to get up and be somewhat mobile while in the hospital, and how long were you inpatient?

@wildcat The dreaded lactulose! We make the best of it. My daughter had a way of pronouncing it in a funny sing-song way to get me to laugh, and after my transplant, while in the hospital, if I complained of any discomfort my husband would exclaim "NO MORE LACTULOSE" to give me something to laugh about.
JK

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@musicman2019

Yes, I am very interested in Tacrolimus adverse reactions.

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@musicman2019 I was on tacrolimus after transplant and my creatinine started climbing. I was told to drink 80 – 100 ounces of fluid a day but that did not help much so they switched me to sirolimus. I still drink all of that water but I no longer have a creatinine problem. They really keep track of me, very thoroughly.
I also started having bad diarrhea while on tacrolimus. I was hoping with the change to sirolimus that would go away but it did not. I have come to realize that I now am lactose intolerant. I believe the tacrolimus must have triggered that since it happened right after starting tacrolimus.
JK

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@contentandwell

@musicman2019 I was on tacrolimus after transplant and my creatinine started climbing. I was told to drink 80 – 100 ounces of fluid a day but that did not help much so they switched me to sirolimus. I still drink all of that water but I no longer have a creatinine problem. They really keep track of me, very thoroughly.
I also started having bad diarrhea while on tacrolimus. I was hoping with the change to sirolimus that would go away but it did not. I have come to realize that I now am lactose intolerant. I believe the tacrolimus must have triggered that since it happened right after starting tacrolimus.
JK

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@musicman2019 originally I was on cellcept, tacrolimus (prograf) and prednisone. A few months in they found the cellcept was causing a low white blood cell count and eliminated it and the prednisone. Now I take 1mg of tacrolimus every 12 hours. I have no side effects from it and my liver function is great.

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@musicman2019

Yes, I am very interested in Tacrolimus adverse reactions.

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@musicman2019, Welcome to Connect. I am a transplant recipient, and I have been taking tactolimus since my simultaneous liver and kidney transplant in 2009. I have needed only minor adjustments to my dosage in the early years. I have been on my current dosage for the past 4 years. My labs are drawn at 3 month intervals, and it includes a test that provides information about the level of the prograf/tacrolimus in my blood. There is a therapeutic range that my transplant teams have assigned to me. It is necessary for the level to be high enough to suppress the immune system, and also low enough to be least harm to the body.

Here is a list of side effects for tacrolimus.
https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/side-effects/drg-20068314

musicman2019, Are you currently taking tacrolimus? Do you have a transplant, or are you considering a transplant?

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Rosemary, Volunteer Mentor @rosemarya This is Ben Lambert and I just spent a couple of days in the hospital and they discovered my medications 2 – 25 mg metoprolol and 2 – Furosemide pills were creating the problem. So now I'm free of all Blood Pressure Medications and feeling much better. Just in case someone else goes through the same episodes – call your coordinator nurse and get on top of it quickly – not like me who waited several days thinking it would go away. The Mayo has been incredible one of their home outside providers – not so much. So once you leave the Mayo orbit (even though Mayo allows these sales people in), be cautious.

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@benlam11

Rosemary, Volunteer Mentor @rosemarya This is Ben Lambert and I just spent a couple of days in the hospital and they discovered my medications 2 – 25 mg metoprolol and 2 – Furosemide pills were creating the problem. So now I'm free of all Blood Pressure Medications and feeling much better. Just in case someone else goes through the same episodes – call your coordinator nurse and get on top of it quickly – not like me who waited several days thinking it would go away. The Mayo has been incredible one of their home outside providers – not so much. So once you leave the Mayo orbit (even though Mayo allows these sales people in), be cautious.

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@benlam11, You have brightened my day! This must be such a relief for you to be feeling better. I am sorry about the hospital stay, but I am happy that the problem is easily resolved. Our medication do play tricks on us sometimes, especially in the beginning.
I think that it is safe to say that you have learned, and shared, a most important message with all of us: "Call your coordinator nurse and get on top of it quickly". If I hesitate hesitate or have questions, my husband always insists that I make the call! I am fully aware that many of our local health care professionals don't have the full ability to handle some of our special transplant care. After all it is a highly individualized and specialized area of expertise and training.
You are wise to have learned to advocate for yourself. I find that I often teach my local health providers about post transplant life. Just a couple of weeks ago I shared my scars and story with a new nurse at my PCP's office appointment. I learned that she had assisted a surgeon for years in surgery. She was impressed with my beautifully healed Mercedes scar.

I have had several hospital overnights for observation, usually if my temperature rises quickly. I am quick to produce my Mayo Transplant 24-7 phone information when I arrive.

Benlam,
How are you feeling now? Is your balance better, are you able to walk without a wheelchair?
How did you end up in the hospital?

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@benlam11

Rosemary, Volunteer Mentor @rosemarya This is Ben Lambert and I just spent a couple of days in the hospital and they discovered my medications 2 – 25 mg metoprolol and 2 – Furosemide pills were creating the problem. So now I'm free of all Blood Pressure Medications and feeling much better. Just in case someone else goes through the same episodes – call your coordinator nurse and get on top of it quickly – not like me who waited several days thinking it would go away. The Mayo has been incredible one of their home outside providers – not so much. So once you leave the Mayo orbit (even though Mayo allows these sales people in), be cautious.

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@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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