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!

@contentandwell

@rowdyramsey make sure that you are on a wait list for the doctor in case there are cancellations.
The only time I have had a cancellation done without my knowledge was because the doctor was not going to be there. That time they gave me a new appointment without it being at a convenient time for me! I then had to reschedule which was a longer wait.
Maybe your PCP could get them to give your appointment some priority too, I have heard that sometimes that helps.
JK

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Yes,thank you very much about the idea of the waiting list.

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@contentandwell

Thanks, @gaylea1 every time I think about those days I shudder. It really was a nightmare and going almost a year and a half not knowing what was wrong with me is insane, I had many typical symptoms such as low platelets and shaky hands. As I have mentioned before, the PCP I did have called me, on the phone, and very simply stated that she thought I had Alzheimer’s! This was after one HE! She was the first doctor who referred me to a neurologist, but I stayed with him, after I quickly changed PCPs. The neurologist was stunned at that suggestion too, after one episode of confusion, and did a little informal testing, and although he didn’t know yet what was wrong he did know it was not Alzheimer’s. He was the one who figured it was a liver problem.

When I was hospitalized they didn’t know yet what was wrong and the treatment was horrible. It wasn’t much better after my diagnosis either, except for a small handful of nurses.

That it took so long to diagnose me is ridiculous. Granted, I never got jaundiced, and my ALT and AST were not horrible, but I have read that is not uncommon. The doctor I switched to, who is still my PCP due to not being able to find a decent one taking new patients, said when I confronted him about not diagnosing me, that he was relying on what previous doctors had diagnosed – shaky hands as essential tremor, low platelets as ITP (immune thrombocytopenia). My other symptoms were not addressed. I’ve had it in my mind that I will change doctors but have been dragging my feet. Being reminded of all of this, along with him dropping the ball on my osteopenia that is now rather advanced osteoporosis, has given me more resolve to make a change after the holidays. The one thing making that decision difficult is that I have a good communication with my PCP, and I like him!
JK

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Im on lactalose and rifaximin…I have mild HE. Will the meds keep me from
a full blown episode. At least I know what it is and its all on my records.
The big worry is that the local hospital may not know how to treat it!. I
have instructed my friends and family to get me to the transplant center
ASAP. Tampa told me they will come get me in a helicopter….
Probably have a heart attack if that went down..lol.

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@contentandwell

@jeanne5009 hi, Jeanne. I hope you don’t mind my responding to this too.
Initially I was just on lactulose and did have some episodes still. It is one of the only medications that the patient needs to titrate themselves – take the amount that gives the desired results without overdoing it. After a hospital admission the discharge hospitalist told me to take a HUGE amount of it and it was way too much. My husband had to go out and buy disposable underwear for me. Lactulose upset my stomach a lot so when I saw a hepatologist she switched me to xifaxan. Lactulose had not totally stopped my HE but xifaxan did for almost a year. When I had another HE episode I had to resume taking lactulose along with the xifaxan but I did still have some HE episodes. It was decided that my liver had deteriorated further.

@mostlybill more than likely the prednisone dose will be gradually decreased. I am on 5mg now and do not notice any effects but I am pretty sure that it has contributed to my developing osteoporosis. I’m happy to hear that you are back to a fairly normal routine now.
My BP has also increased but I have read that cirrhosis tends to make BP go down! My PCP wants me on a BP medication.
I think fatigue is pretty common, both before and after transplant. I find that I get tired a lot now too. I don’t sleep well but that’s another issue, but I have assumed that contributes to my fatigue. I used to be a “night-owl” but I am usually in bed now between 11:00 and 12:00. I did not have a drugged feeling but I think fatigue can cause that. On mornings when I have had a severe lack of sleep I feel woozy.

@racing212 not having HE since August is a pretty good amount of time. When I was getting them I woke up every morning praying that I would not have one that day. It’s so incredibly disturbing and I found it depressing too to not have control of my mind.

@tgshomes HE occurs when your liver doesn’t filter out ammonia and it goes to your brain. The effects can be anything from a mild fog, to confusion and being irrational, to coma and even death if severe and not attended to.
As I mentioned above, he does need to titrate the lactulose himself to get the desired results. Also certain foods tend to contribute to it more than others, particularly animal protein. My hepatologist did not recommend not eating any animal protein but she did say to have small portions. I found beef, which I love, to be most apt to bring it on.
I actually weighed my portion of meat and never exceeded 4oz.
I am glad to hear that they feel he will be close to a high enough MELD score that he won’t have to wait too long. It’s such an incredible blessing to be on the other side of transplant and be able to really live again. My cirrhosis was from NASH – non-alcohol steatohepatitis which starts as fatty liver generally.

@rowdyramsey you sure had a tough time before your transplant, with HE and fluid retention. I had edema off and on, but I didn’t have ascites until the last 6 weeks, I gained 35 pounds.
I suspect that, like me, you now feel that every day is a gift. I try to remember that even when I’m having a bad day, because it truly is.
JK

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Yes…Im the titrating queen! Ive got this down to a science after 3 yrs. 1
huge gulp at bedtime…kind of like the candy on the pillow in hotels..lol.
If I miss it I pay because I feel miserable and dopey. Then you have to
take it until you get results. No diarrhea cramps thank God. Its the
Rifaxim that keeps me mentally sound I think. That stuff is gold! And just
as expensive! Most folks are getting help with the expense I think. If
not..speak up there is help.
Someone recently was talking about this group and what a help it is. So
true! I have learned so much…would like to see my caregivers get more
involved though. They have no clue what you all are going through. Im in
this for 3 years EDLD 4 with a Meld of only 7. Not sure Im lucky as Im
going to be 70 this year and will likely need transplant after that. So far
so good though. I can still drive myself and am still able to care for my
house and an 84 yr old friend who is in really good shape.
Caregivers…daughter will have to cope as needed.
God only knows how the cards will fall. Im waiting for a winning hand!

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@rowdyramsey

Just wanted to welcome you and I’m sorry to hear of your dads illness. My name is ramona and I had a transplant in July of 2015. I’m on my 4th yr post transplant. I was 47 yrs old. I’m from MD,Baltimore county. My transplant was done at the university of Maryland. I lived in the hospital for almost 2 yrs. If I was released,I would be back in the ER within 12-14 days. I had 2 main problems,fluid and HE. I was about 180 at the most when I got sick. By transplant date I weighed 420lbs. All fluid. Docs had to tap me every 12 days and each time they fulled out 6 2 liter bottles. Image a 2liter bottle of coke. Now at 5 more 2liters to that. Every 2 weeks. I now weigh 150lbs at 5 foot 9. I also lived with HE every single day for almost 2 solid yrs. I had it bad! My ammonia levels were 190-over 200. Comatose levels. I drank lactolose all day and all night long! Every single day for almost 2 yrs. Sorry,I already said that! If you have any questions feel free….. I will try to follow your posts.

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Geez…..I can hardly wait! Lol…seriously happy you are still with us!
There is a reason I believe and you sharing your story to help us may be
yours….God bless you!
Ps..Sure glad I dont drink Coke!!

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@racing212

I'm on both meds and still get have episodes. The. Last one was in August..

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Can I get some feedback on how we are defining an HE episode? I know
everone is different but I never had a big one and am not sure my feelings
are really HE related. I have been diagnosed with it and am on the meds.
Thanks.

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@jeanne5009

Im on lactalose and rifaximin…I have mild HE. Will the meds keep me from
a full blown episode. At least I know what it is and its all on my records.
The big worry is that the local hospital may not know how to treat it!. I
have instructed my friends and family to get me to the transplant center
ASAP. Tampa told me they will come get me in a helicopter….
Probably have a heart attack if that went down..lol.

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@jeanne5009 Jeanne, from my experience I would have to say "maybe". It's so individual. I was on just xifaxan for almost a year and had no HE episodes at all. Then I suddenly had another one. We thought it was due to "the perfect storm" — I had a difficult ablation and I had norovirus so was not holding anything down. The hepatologist thought at that point though I should resume taking lactulose along with the xifaxan, that my liver had deteriorated much further. So then I was on both and I did have some full-blown HE episodes. Obviously the hepatologist was correct.

When I had my transplant, about six months later, my liver was pretty much spent. If a liver had not come along at that point I may not have made it. So much depends on your liver's condition. I really do not fully understand how they develop a patient's MELD score but I do know that some very sick people have low scores and some people who seem less sick have high ones. Mine was 28 at transplant.

Also, you ask about the definition of HE. That too varies by the person. I was fine most of the time, completely cognizant and able to live my normal life. Then I would get hit with major confusion, be totally irrational, and sometimes even combative. Some people just have a fog all of the time. It really varies tremendously.

You sound like one of the very fortunate people who are able to have good existence along with having cirrhosis. My sister has a friend whose mother had cirrhosis for 10 years. She eventually died from an unrelated cause.

I had thought xifaxan had come down in cost when it was no longer patent protected. When I was taking it we paid about a $700 a month co-pay.
JK

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@jeanne5009

Im on lactalose and rifaximin…I have mild HE. Will the meds keep me from
a full blown episode. At least I know what it is and its all on my records.
The big worry is that the local hospital may not know how to treat it!. I
have instructed my friends and family to get me to the transplant center
ASAP. Tampa told me they will come get me in a helicopter….
Probably have a heart attack if that went down..lol.

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Hi

I am five years post a very successful liver transplant. I took my awful Lactulose faithfully every day but still had one serious HE episode. It was unforgettable- three days in hospital and fed copious amounts of the stuff. It was dreadful but it worked. I was never given Rifaximin but I'm sure you will be fine if you take both meds faithfully and don't be tempted to miss a dose. I know it is disgusting but it is literally a life saver.

When i was admitted to A & E, the first doctor mis-diagnosed me but as soon as I saw my specialist he told my husband it was HE. He sniffed my face and said he could smell the ammonia! Embarassing, yes, but useful to know. I had no long lasting effects (as far as I know!).

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@jeanne5009

Can I get some feedback on how we are defining an HE episode? I know
everone is different but I never had a big one and am not sure my feelings
are really HE related. I have been diagnosed with it and am on the meds.
Thanks.

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My HE episodes included confusion, lack of awareness (time, place, situation) dizziness (including falling or fainting), irritability, and fatigue. Combined they made me one hot mess lol…When I had my most severe HE episodes I also lost consciencesness. (sp?).

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@contentandwell

@jeanne5009 Jeanne, from my experience I would have to say "maybe". It's so individual. I was on just xifaxan for almost a year and had no HE episodes at all. Then I suddenly had another one. We thought it was due to "the perfect storm" — I had a difficult ablation and I had norovirus so was not holding anything down. The hepatologist thought at that point though I should resume taking lactulose along with the xifaxan, that my liver had deteriorated much further. So then I was on both and I did have some full-blown HE episodes. Obviously the hepatologist was correct.

When I had my transplant, about six months later, my liver was pretty much spent. If a liver had not come along at that point I may not have made it. So much depends on your liver's condition. I really do not fully understand how they develop a patient's MELD score but I do know that some very sick people have low scores and some people who seem less sick have high ones. Mine was 28 at transplant.

Also, you ask about the definition of HE. That too varies by the person. I was fine most of the time, completely cognizant and able to live my normal life. Then I would get hit with major confusion, be totally irrational, and sometimes even combative. Some people just have a fog all of the time. It really varies tremendously.

You sound like one of the very fortunate people who are able to have good existence along with having cirrhosis. My sister has a friend whose mother had cirrhosis for 10 years. She eventually died from an unrelated cause.

I had thought xifaxan had come down in cost when it was no longer patent protected. When I was taking it we paid about a $700 a month co-pay.
JK

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I just had an he episode last friday and was in hospital 4 days. Im dont remember friday or Saturday very much. Its not the first that happened a year ago in October when i slept for days and woke up in a different hospital

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This has been a fantastic conversation and I want to expand upon it.

For anyone not familiar with hepatic encephalopathy (HE)), it is a buildup of toxins in the brain.
"A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. With time, hepatic encephalopathy can progress to unresponsiveness or coma.

Cirrhosis often has no signs or symptoms until liver damage is extensive. When signs and symptoms do occur, they may include:

Fatigue
Easily bleeding or bruising
Loss of appetite
Nausea
Swelling in your legs, feet or ankles (edema)
Weight loss
Itchy skin
Yellow discoloration in the skin and eyes (jaundice)
Fluid accumulation in your abdomen (ascites)
Spiderlike blood vessels on your skin
Redness in the palms of the hands
For women, absent or loss of periods not related to menopause
For men, loss of sex drive, breast enlargement (gynecomastia) or testicular atrophy
Confusion, drowsiness and slurred speech (hepatic encephalopathy) "
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
-Were you told about the signs of HE to look for when you were diagnosed with liver disease?
-Were you monitored in any way by your medical care provider?
-What do you wish you would have known then, that you know now?
– What kind of hope and/or encouragement would you share with someone who is new to this conversatioin.

@racing212, @gaylea1, @wildcat, @contentandwell, @jeanne5009, @rowdyramsey, @flagal22, @mostlybill, @tgshomes, and anyone I missed: I hand the mike to you.

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Well a year ago is when started going to the hospital for weeks and that's when they started lactoluse and xifaxin. I was getting fluid drained from abnomen every week for over a year. I haven't been drained since January of 2019. Im monitored every 3 months by a dr at rochester mayo in minnesota

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@racing212

I just had an he episode last friday and was in hospital 4 days. Im dont remember friday or Saturday very much. Its not the first that happened a year ago in October when i slept for days and woke up in a different hospital

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@racing212 I had some similar but I think my maximum hospital stay was 3 day, and I never lost consciousness.
I was out this afternoon and I was thinking about all of this while driving home. I almost got tears in my eyes. To me, HE episodes that made me irrational were the worst thing that ever happened. It was especially disturbing when I realized that I was being irrational.
JK

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@contentandwell

@racing212 I had some similar but I think my maximum hospital stay was 3 day, and I never lost consciousness.
I was out this afternoon and I was thinking about all of this while driving home. I almost got tears in my eyes. To me, HE episodes that made me irrational were the worst thing that ever happened. It was especially disturbing when I realized that I was being irrational.
JK

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Last fall the Dr. Told a friend that he didn't expect me to live until april. I fooled him its a year later and im still going strong. My meld score went up back in September.

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@contentandwell

@racing212 I had some similar but I think my maximum hospital stay was 3 day, and I never lost consciousness.
I was out this afternoon and I was thinking about all of this while driving home. I almost got tears in my eyes. To me, HE episodes that made me irrational were the worst thing that ever happened. It was especially disturbing when I realized that I was being irrational.
JK

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I understand how u feel about HE. I feel the same way. Scariest thing that’s ever happened to me

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@racing212

Last fall the Dr. Told a friend that he didn't expect me to live until april. I fooled him its a year later and im still going strong. My meld score went up back in September.

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@racing212 I found out after my transplant that my husband and sister didn’t think I was going to make it. When I discovered that I wondered if the hepatologist and her NP that I had prior to transplant thought that too because when they visited me in the hospital they were both so excited!
JK

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