1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

jeanne5009 | @jeanne5009 | Feb 25, 2020
In reply to @contentandwell "@joanaiken I hope the biopsy went well. Tests like that can be so unnerving. @jeanne5009 With..." + (show)
@contentandwell

@joanaiken I hope the biopsy went well. Tests like that can be so unnerving.

@jeanne5009 With a MELD of just 8, how severe are your HE episodes? Have any of them caused you to be inpatient?

@racing212 I too had HE a number of times that landed me in the hospital for two or three days. I have heard of people being in the hospital for much longer periods with HE though. In retrospect, I wish I had been transferred to my transplant hospital in Boston, rather than being in the local hospital here in southern NH. They were not very knowledgeable about HE and the treatment I had there was deplorable.
HE is scary and depressing. I consider my mind to be my best asset and to be so confused and irrational was very upsetting. I could feel them coming on and always thought if I just resisted enough I would not get one, but of course I did.

@beckyy39 If you have two willing donors who may be a match can they get tested and possibly have a transplant elsewhere? Having a living donor would certainly quicken the process.

@khh I too welcome you to Connect. I am very surprised that you have not seen a doctor. When I was to have my first appointment with a hepatologist they suggested that I could see her NP sooner than I could see her but I said that I wanted to be seen by a doctor and I was. On every appointment while I was pre-transplant I was seen first by the NP and then the doctor came in. Is there a different transplant center close enough to you that you could switch? For me, not seeing a doctor in all of that time would not be acceptable. If you go to the SRTR database it lists all of the transplant hospitals in the country. I had my transplant at Mass General in Boston and can not say enough good about them. They were wonderful and continue to be post-transplant.
JK

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@contentandwell
I have not had anything severe enough to send me to the ER. Always able to get to the doctor. Mine is mild with headache, extreme tiredness, crazy dreams and irritability. I take Rifaximin 2 times a day and was on lactalose but cut back on that just recently when I developed chronic diaherria. Going in for an EDG and biopsy of colon next week. I have also developed vertigo and interstitial cystitis. Both are really challenging. Never a dull moment. AND...my caregiver has developed a cyst on his pancreas. He is deciding when to have the Whipple procedure done. Lets talk about stress. We are all dealing with roadblocks that can sideline our efforts to ....taking care of us.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 25, 2020
In reply to @khh "I guess I lost it. Anyway, she has stated upon my request, that she will set..." + (show)
@khh

I guess I lost it. Anyway, she has stated upon my request, that she will set one up for after my appt the next time. That hasn’t happened. She is one of the NPs with the GI/liver people. No I’m not on any program list This is the first time I have reached out. I know 2 others on the list here at UMC; things have not gone well. She has not even worked me up yet. All of my friends who had transplants have gone elsewhere. I know your Jacksonville facility would be closer, but I was initially thinking about my family in Illinois and my boyfriend in Grand Rapids. Sorry I dozed off while I was typing.

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@khh, Like you, I have lost some of my replies. It mostly happens when use my laptop, Grrrrh. I am sorry it happened to you, and thankfully you were successful this time! Did you get a chance to check out the information that I sent you?

I understand your concern about a location that would e nearest to your loved ones. You are correct in considering that because of the support, emotional and physical, that will be needed along the way. I was originally listed locally, but complications resulted in me being transferred to Mayo Rochester. Fortunately my husband was retired and he was able to be at my side I have met others who have managed their long distance transplant quite well, too.
I was under the care of GI who consulted with a liver specialist at the regional transplant center. My numbers had been pretty much stable for years, but when my labs, MELD, and symptoms indicated that my condition was deteriorating, he referred me to the transplant center, where I was examined and accepted as a patient.

Do you know why your NP has not made an appointment with the doctor in the liver department? Have you been diagnosed yet with any particular liver condition?

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JK | @contentandwell | Feb 25, 2020
In reply to @khh "I guess I lost it. Anyway, she has stated upon my request, that she will set..." + (show)
@khh

I guess I lost it. Anyway, she has stated upon my request, that she will set one up for after my appt the next time. That hasn’t happened. She is one of the NPs with the GI/liver people. No I’m not on any program list This is the first time I have reached out. I know 2 others on the list here at UMC; things have not gone well. She has not even worked me up yet. All of my friends who had transplants have gone elsewhere. I know your Jacksonville facility would be closer, but I was initially thinking about my family in Illinois and my boyfriend in Grand Rapids. Sorry I dozed off while I was typing.

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@khh I'm not sure what UMC is but you need to think of yourself and your own wellbeing. It sounds as if you know people who are faring better going elsewhere, perhaps you should also.
What is UMC?
JK

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khh | @khh | Feb 24, 2020
In reply to @colleenyoung "Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon?..." + (show)
@colleenyoung

Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon? May I ask, are you a patient at Mayo Clinic or another institution?

Jump to this post

I guess I lost it. Anyway, she has stated upon my request, that she will set one up for after my appt the next time. That hasn’t happened. She is one of the NPs with the GI/liver people. No I’m not on any program list This is the first time I have reached out. I know 2 others on the list here at UMC; things have not gone well. She has not even worked me up yet. All of my friends who had transplants have gone elsewhere. I know your Jacksonville facility would be closer, but I was initially thinking about my family in Illinois and my boyfriend in Grand Rapids. Sorry I dozed off while I was typing.

REPLY
3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 24, 2020
In reply to @khh "Did you get any of that or did I lose the entire thing I typed?" + (show)
@khh

Did you get any of that or did I lose the entire thing I typed?

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@khh, I’m sorry to say that your message did not come thru. I hope you will send another one.

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khh | @khh | Feb 24, 2020
In reply to @colleenyoung "Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon?..." + (show)
@colleenyoung

Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon? May I ask, are you a patient at Mayo Clinic or another institution?

Jump to this post

Did you get any of that or did I lose the entire thing I typed?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 24, 2020
In reply to @khh "3 years ago, I went in to have my gallbladder out and found out I was..." + (show)
@khh

3 years ago, I went in to have my gallbladder out and found out I was a Metavir 4. My mother does as well. I quit any social drinking, aleve,aspirin, everything that day. My meld varies but stays just below what is “required” for the list. However, the remainder of my findings are just about incompatible with life. I am a physician so I can realize the severity of my US, CT etc. I am 52 years old and I believe I could have many more years to help patients. I am a good pathologist. The NP that sees me down here looks at the MELD score and has not let me have a consult with a transplant surgeon, who I would think would be more likely to look at the totality of my findings. I have followed every letter of the law for 3 years with not even a consult. That is where I am now.

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Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon? May I ask, are you a patient at Mayo Clinic or another institution?

REPLY
2 replies
joanaiken | @joanaiken | Feb 24, 2020
In reply to @contentandwell "@joanaiken I hope the biopsy went well. Tests like that can be so unnerving. @jeanne5009 With..." + (show)
@contentandwell

@joanaiken I hope the biopsy went well. Tests like that can be so unnerving.

@jeanne5009 With a MELD of just 8, how severe are your HE episodes? Have any of them caused you to be inpatient?

@racing212 I too had HE a number of times that landed me in the hospital for two or three days. I have heard of people being in the hospital for much longer periods with HE though. In retrospect, I wish I had been transferred to my transplant hospital in Boston, rather than being in the local hospital here in southern NH. They were not very knowledgeable about HE and the treatment I had there was deplorable.
HE is scary and depressing. I consider my mind to be my best asset and to be so confused and irrational was very upsetting. I could feel them coming on and always thought if I just resisted enough I would not get one, but of course I did.

@beckyy39 If you have two willing donors who may be a match can they get tested and possibly have a transplant elsewhere? Having a living donor would certainly quicken the process.

@khh I too welcome you to Connect. I am very surprised that you have not seen a doctor. When I was to have my first appointment with a hepatologist they suggested that I could see her NP sooner than I could see her but I said that I wanted to be seen by a doctor and I was. On every appointment while I was pre-transplant I was seen first by the NP and then the doctor came in. Is there a different transplant center close enough to you that you could switch? For me, not seeing a doctor in all of that time would not be acceptable. If you go to the SRTR database it lists all of the transplant hospitals in the country. I had my transplant at Mass General in Boston and can not say enough good about them. They were wonderful and continue to be post-transplant.
JK

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Thank you for asking about the biopsy. The procedure went well. The results showed no acute rejection, but the beginning of a chronic mild rejection. Cellcept was added to my medication regime. Tomorrow I will have repeat labs and an MRCP without contrast. There may be some issues with the bile ducts. If this exam is not conclusive, t may be followed by an ERCP. Post second liver tx I had this procedure twice to place stents for bile duct stricture due to scar tissue. All in all, taking this a day at a time. I trust my team at Mayo Phoenix.

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1 reply
JK | @contentandwell | Feb 24, 2020
In reply to @jeanne5009 "I'm in FL and would love to be part of the group. Anyhing about HE interests..." + (show)
@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.

Jump to this post

@joanaiken I hope the biopsy went well. Tests like that can be so unnerving.

@jeanne5009 With a MELD of just 8, how severe are your HE episodes? Have any of them caused you to be inpatient?

@racing212 I too had HE a number of times that landed me in the hospital for two or three days. I have heard of people being in the hospital for much longer periods with HE though. In retrospect, I wish I had been transferred to my transplant hospital in Boston, rather than being in the local hospital here in southern NH. They were not very knowledgeable about HE and the treatment I had there was deplorable.
HE is scary and depressing. I consider my mind to be my best asset and to be so confused and irrational was very upsetting. I could feel them coming on and always thought if I just resisted enough I would not get one, but of course I did.

@beckyy39 If you have two willing donors who may be a match can they get tested and possibly have a transplant elsewhere? Having a living donor would certainly quicken the process.

@khh I too welcome you to Connect. I am very surprised that you have not seen a doctor. When I was to have my first appointment with a hepatologist they suggested that I could see her NP sooner than I could see her but I said that I wanted to be seen by a doctor and I was. On every appointment while I was pre-transplant I was seen first by the NP and then the doctor came in. Is there a different transplant center close enough to you that you could switch? For me, not seeing a doctor in all of that time would not be acceptable. If you go to the SRTR database it lists all of the transplant hospitals in the country. I had my transplant at Mass General in Boston and can not say enough good about them. They were wonderful and continue to be post-transplant.
JK

REPLY
2 replies
khh | @khh | Feb 24, 2020
In reply to @benlam11 "Karen, I live in Las Vegas and had my Liver and Kidney transplant last June. This..." + (show)
@benlam11

Karen, I live in Las Vegas and had my Liver and Kidney transplant last June. This was after a misdiagnosis in 2 Las Vegas Hospitals before they found out I had NASH (non alcoholic liver disease) and entered an altered state. After that, I sent all my medical records to the Mayo in Phoenix and set up an appointment There I was diagnosed on my initial visit, that I needed transplants and the evaluation process began, it took 9 months to complete the evaluation with me being emergency transferred from Las Vegas to Phoenix as I was totally unaware of when nor how I got there. They stabilized me (3 days) completed the last test and then placed me on the transplant list. I received my transplant the next day and after a rough 3 Months ( I also had carotid artery surgery causing a minor stroke) , I feel better than I have in years. My best advice - follow the advice of your pre transplant coordinator EXACTLY. Listen to your Doctor and Nurse team. Never be afraid to ask your questions - write them down prior to your visit. Have all forms completed when you get there. Speak with your Social Worker about financial problems ( you will be expected to remain in the area for a couple of months. You will be overwhelmed with "paper" - save it all and read it prior to the transplant. There are numerous websites that provide extensive detail about success rates, transplant hospital ratings, etc. I went through numerous emotions with grief for the family that lost a loved one, to gratitude that the donated organs were life giving, to my wife (my Caregiver) who was heroic in helping me get through. I hope you have a quick an peaceful journey through the process and always reach out at the Mayo as you will never be alone. Ben

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Please read my reply to Rosemary. I have not seen a physician, nor have I been provided with a social worker. I have followed everything perfectly for 3 years so far and I still haven’t received a consult. And I have been requesting that from my NP. I would think that since I am still a working physician, she would at least let me have a consult. The findings in my scans are horrible including a liver density and a reverse flowing inferior vena cava. I have plenty of other terrible findings but those are not compatible with life that is the point I am at.
Karen

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