The decsion to be on a liver transplant list or not.

Posted by ran73 @ran73, Oct 27, 2023

Hello all,
This forum is so helpful with information on a subject that I'm relatively new to.
I'm a healthy (other than liver) fit, active 73 yr. old female. After years of daily cocktails and decades of unknown Hep C & B my liver didn't stand much of a chance. I was asymptomatic so easier to stay in denial about the damage I was doing. I'm now 27 months sober, a non smoker with an extremely healthy diet designed to be liver friendly. I've lost 70 lbs, no longer overweight and jog 45-60 min. daily. My heart, lungs and kidneys are healthy. I'm not diabetic. I haven't felt better or had more energy in many years.
Six months into sobriety I did full disclosure about the drinking to my primary physician who initiated the labs that led to the discovery of both hep c and b that apparently I had for decades. Antiviral treatment has cured the hep c. The hep c remains inactive. More labs and imaging led to my Hepatologist's diagnosis of stage 4 cirrhosis with HCC. That was a difficult revelation, but to be expected.
Two weeks ago microwave ablation was done on a tumor, my first and hopefully last. The surgeon strongly recommended putting me on a transplant list, because he foresees tumors in the future and this liver eventually failing. That was another shocking conversation. I didn't think a transplant was needed or even possible considering a meld score of 9, my age, compensated cirrhosis and the fact that I've not been ill and feel really good. My hepatologist has not recommended transplant so this has been confusing.
The hepatologist hasn't changed his position since the ablation. He's ordered a CT angiogram every 3 months, supports a "wait and watch" approach with transplant as a last safety net.
Needless to say, I'm all for his advice as is my 83 yr. old husband who is dependent on me to be our household administrator. Asking him to take on the responsibilities (and stress) of a transplant caregiver
seems impossible and unfair.
So that's my tale of woe. Not nearly as difficult as many here. I'm grateful for all I've had in this life and will keep putting one foot in front of the other with fingers crossed for a few more healthy years.
I'll continue to educate myself from the experiences of everyone here.
Thanks for listening.
Randi

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@katebw

@hope25 my apologies- I didn’t realize you were asking me. By the time I understood I had liver disease my MELD was 32 and would only fluctuate down to 28 here and there. So my needing a liver transplant was a clear cut thing and I didn’t consider a living donor as there was no time to do so.

I have learned from others who have had a slower developing liver disease who are seeking a living donor as they are feeling very sick but in the eyes of the National Transplant List system they cannot be listed in the traditional way. I’ve heard that Mayo, University Hospital in San Antonio, U Pittsburgh and MGH Boston all have specialized living donor programs for liver transplant.

My transplant was through MassGeneral Hospital in Boston as I live in western MA. They are phenomenal. I didn’t scout around as I was so sick so suddenly but nevertheless I was lucky that they were my default transplant service.

Prior to my diagnosis, in retrospect for about 2 years I was not feeling well- tired all the time. I worked right up until a driving catastrophe led to my diagnosis but in retrospect I wasn’t as mentally sharp and lacked necessary energy to do my job well for those two years. Liver disease can affect one’s cognition I think in large part because there are higher levels of ammonia in one’s brain. It’s also fatiguing and muscle wasting so important to be as active as possible while ill- as hard as that is. Best of luck to you on your journey, I think this is a great way to find support.

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Thank you for your feedback. I have spoken to a transplant coordinator at UPMC. I live on the east coast and there is a drop in clinic about 1-1/2 hrs from here. She felt PENN was an acceptable place to be evaluated (already have gotten a 2nd opinion). I was told “nothing to do.” I am being told that I have “compensated” disease. I think that I have minimal hepatic encephalopathy and biopsy showing “vascular congestion.” Doesn’t this indicate decompensation? I am active but worry about the muscle wasting. Any suggestions are appreciated.

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@hope25 when I was diagnosed, again I was very sick and at age 53 lived with my mother for 6 months as her house is accessible and mine is old and steep. I was told to eat a high protein diet- like 85 grams protein per day, and it was emphasized that it was heavily plant based- tofu, almonds, beans and rice, etc). I had physical therapy and took daily walks. I drank tons of water, limited sugar and had no alcohol, Tylenol, etc. despite how completely ill I was, I felt much better when I made concerted efforts to take care of my body. Ironically I felt very well during the 2 weeks before being called in for surgery.

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@katebw

@hope25 when I was diagnosed, again I was very sick and at age 53 lived with my mother for 6 months as her house is accessible and mine is old and steep. I was told to eat a high protein diet- like 85 grams protein per day, and it was emphasized that it was heavily plant based- tofu, almonds, beans and rice, etc). I had physical therapy and took daily walks. I drank tons of water, limited sugar and had no alcohol, Tylenol, etc. despite how completely ill I was, I felt much better when I made concerted efforts to take care of my body. Ironically I felt very well during the 2 weeks before being called in for surgery.

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Thank you for responding so promptly. I am also 53 and have been adhering to 1.8g/kg of protein per day. I have been weight training 4-5 days/ week to prevent muscle mass loss. I jog 3-4 miles per day. I am fatigued in the morning mostly; and this is difficult since I used to be an avid runner. Did you experience any palpitations? I have SVT but a normal ECHO. They didn’t recommend any treatment. Worried about this affecting my transplant candidacy.

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@hope25 it sounds like you are doing all good things to stay in reasonable shape and strength with liver disease. You experience limitations but are compensating. I didn’t experience palpitations that I remember. I looked up SVT having not heard of that. I don’t have that. Prior to getting on the official transplant list I underwent a lot of testing including nuclear stress tests to ensure my cardiac system could handle everything. I imagine that when one gets to the point of discussing a liver transplant you are already sick and transplant docs need to make sure you’re sick enough to be offered a transplant (living or deceased donor) but well enough to manage the surgery and aftermath . They raked me over with a fine tooth comb to ensure that I had very good support in the aftermath which I did. My understanding is that most issues that could harm your ability to eventually be on a transplant list can be reconciled- infections, heart disease, blood pressure, anxiety, support systems, etc.

I cannot remember- do you know what has caused/is causing your liver disease? Do you have a sense of the pace of your disease?

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@katebw

@hope25 it sounds like you are doing all good things to stay in reasonable shape and strength with liver disease. You experience limitations but are compensating. I didn’t experience palpitations that I remember. I looked up SVT having not heard of that. I don’t have that. Prior to getting on the official transplant list I underwent a lot of testing including nuclear stress tests to ensure my cardiac system could handle everything. I imagine that when one gets to the point of discussing a liver transplant you are already sick and transplant docs need to make sure you’re sick enough to be offered a transplant (living or deceased donor) but well enough to manage the surgery and aftermath . They raked me over with a fine tooth comb to ensure that I had very good support in the aftermath which I did. My understanding is that most issues that could harm your ability to eventually be on a transplant list can be reconciled- infections, heart disease, blood pressure, anxiety, support systems, etc.

I cannot remember- do you know what has caused/is causing your liver disease? Do you have a sense of the pace of your disease?

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No, I don’t have a definite cause. My ceruloplasmin was low, but the hepatologist thought it was related to nutritional statu, not Wilson’s disease. The other labs were ok. The NASH fibrosure is on the high end of normal and is being continually monitored. He did not recommend a liver biopsy since invasive. I have felt the same since March. After eating more calories, started to feel sleepier compared to normal. This concerned me, but not the physician. I bought LOLA (helps with ammonia-athletes who protein load use this) and feel it made a difference. I have not been diagnosed with encephalopathy. It appeared that my arms and back were losing muscle. My weight is stable. I really have no other symptoms. Sometimes I feel the physician’s are minimizing this and waiting until the bottom falls out. That concerns me. They have the experience of seeing other patient’s so maybe I am overly concerned.

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@hope25

Thank you for your insight. Were you able to work, drive and complete your activities of daily living during these 10 years pre-transplant? I have so many concerns about the trajectory of this disease. Wondering if I need 3rd opinion when my MELD is so low.

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I struggled with day-to-day activities and did not feel safe enough to drive. I struggle with the concept of getting multiple medical opinions as it says that you don't trust the care you are receiving and that is truly the problem. We need to know that our doctors have only our best interest in mind. If you question this, then you need new doctors more so than just another opinion.

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@hope25

No I am not on a wait list. I calculated my MELD at a “7.” I was told only a MELD of “15” is considered for a living donor. I was told that I have “compensated” disease despite “venous congestion” on gastric biopsy. This points to portal hypertensive gastropathy which is not being acknowledged as “decompensation.” I was told that I do not have portal hypertension, but the above suggests that I do. I wonder if I should be started on Carvedilol. Any thoughts?

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Hi, @hope25. By way of introduction, I had my transplant 14 years ago. I had been diagnosed with a non-curable progressive liver disease for which there is no cure (except a transplant when the liver fails) For 10 years, I waited, wondered, worried, and was under the care of a wonderful gastroenterologist who consulted with a hepatologist in regional transplant center. So I can understand what you are experiencing.
As I read your message, I am wondering whether you are under the care of a specialist (gastroenterologist or hepatologist) who can guide you with potential treatment. My GI (gastroenterologist) assured me that he would send me to the transplant center for evaluation "when" it was time. After approximately 8 years, I was referred, evaluated, and listed. The waiting, wondering, worrying, and excellent care continued via transplant team.
During that time, I learned that every liver patient can experience different symptoms. I learned that changes can come suddenly, and some are treatable or manageable. Not every liver disease is going to result in need for transplant. The best advice that I experienced was to remain physically active, eat a healthy diet, avoid alcohol and over-the-counter medicines and supplements.

Have you connected with a GI who has some expertise with liver disease? Have you received a diagnosis for your liver issues?

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@rosemarya

Hi, @hope25. By way of introduction, I had my transplant 14 years ago. I had been diagnosed with a non-curable progressive liver disease for which there is no cure (except a transplant when the liver fails) For 10 years, I waited, wondered, worried, and was under the care of a wonderful gastroenterologist who consulted with a hepatologist in regional transplant center. So I can understand what you are experiencing.
As I read your message, I am wondering whether you are under the care of a specialist (gastroenterologist or hepatologist) who can guide you with potential treatment. My GI (gastroenterologist) assured me that he would send me to the transplant center for evaluation "when" it was time. After approximately 8 years, I was referred, evaluated, and listed. The waiting, wondering, worrying, and excellent care continued via transplant team.
During that time, I learned that every liver patient can experience different symptoms. I learned that changes can come suddenly, and some are treatable or manageable. Not every liver disease is going to result in need for transplant. The best advice that I experienced was to remain physically active, eat a healthy diet, avoid alcohol and over-the-counter medicines and supplements.

Have you connected with a GI who has some expertise with liver disease? Have you received a diagnosis for your liver issues?

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Hi Rosemary,
Thank you so very much for your detailed response. I have seen a local hepatologist with poor bedside manner and thus sought a 2nd opinion at PENN. I had extensive blood work and a low ceruloplasmin which was attributed to nutritional status. I was told that it is unlikely Wilson’s disease. My NASH fibrosure is high end normal and has increased in the last 6 months. I have not had a liver biopsy. All bloodwork, fibroscan and US are normal. The only positive finding was a biopsy of the antrum with pathology of “ venous congestion.” I was not told this was portal hypertensive gastropathy. I was told that I do not have portal hypertension or any sign of decompensation. The consultant mentioned getting an MRI to take a closer look. I am very concerned and feel that everything is minimized.

I eat extremely healthy and jog 4-5 miles daily. I began lifting weights in June as I feel my muscle mass has decreased. I have a BMI-19 so probably not a great reserve. I eat 6 small meals and around 75g protein daily.
Any recommendations that you can mention are greatly appreciated.

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@amyintucson

I struggled with day-to-day activities and did not feel safe enough to drive. I struggle with the concept of getting multiple medical opinions as it says that you don't trust the care you are receiving and that is truly the problem. We need to know that our doctors have only our best interest in mind. If you question this, then you need new doctors more so than just another opinion.

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Amy,
I agree with your insight. I do trust the 2nd opinion. I overthink and research everything. I want to be proactive. I am concerned about having a low MELD score; and if I get sicker, might need to find a living donor. I feel that perhaps I should be doing this now.

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