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Liver transplant - Let's support each other
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?
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@racing212, Good for you!
Don't you hate to hear those kinds of comments? I can clearly remember hearing disaster stories from some people while I was waiting and struggling with my awful symptoms. I chose not to listen to them.
I am so happy for you that you are going strong even with a rising MELD. Keep on doing what you are doing and following the advice of your medical team. And congratulations on the relief from ascites and those paracentesis procedures. (I had to use that word because I. too, had many of them. And I even learned how to spell it!)
Over all, How are you feeling? Do you have nausea or tiredness? Do you have any idea why the fluids are not building us now?
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1 ReactionHello fellow liver patients! If your alive...it’s a great day for celebrating!! I have a question for everyone! What was ur opiate medication? I’m trying to see if anyone can relate to me. In 2004 they removed a tumor on my remaining ovary. I only had one cause I had ovarian cancer at 19 yrs. old. So,I was to have my one ovary removed(hysterectomy) so the cancer Dosent come back. So in 2004 they reluctantly did surgery ( hysterectomy) they considered me very high risk for surgery. My liver was so far gone,this is the first time my liver was mentioned. The doc did the surgery and then relayed the condition of my liver to me and family. He said it was a big bag of peanuts! The liver that is. Anyway they put me on narcotics stating after surgery. They kept me on a daily stream of Dilaudid. The point 4s! I was on them daily till my transplant for 2 straight years. Then<get this,they continued to give me every month 180 point 4 dilaudids from transplant till last year. So from 2014 till 2018,I was on this narcotic daily. Never missed a day. That is daily use of the strongest narcotics out there. I also was on them every 4-6 hrs for a solid 5 years. Four yrs. after transplant I was still taking the same amount. I think I was over prescribed!! I finally took matters in my own hands. I refused anymore scripts and had to get on a methadone 30 day detox program. That’s how I got off the narcotics that were prescribed every month! Have any of you had this problem either now or before?
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1 Reaction@rosemarya the only thing I can add about HE is that the the symptoms vary so much from person to person, and there are those very fortunate ones like yourself who never have HE.
Also, the other symptoms vary a lot from person to person. I never jaundiced, had loss of appetite (except during an HE episode and not always then even), only lost weight intentionally, did not have ascites until very shortly before my transplant, I was not itchy, and do not recall my palms being red.
Other common symptoms not mentioned here that many people have, me included, are shaky hands, (as my cirrhosis progressed I couldn’t get a spoonful of soup to my mouth), plus I was always very cold, had leg cramps (these were mostly in my thighs and were excruciating, but thankfully passed in about 10 - 15 minutes), declining platelet counts, and recently diagnosed diabetes.
HE was what brought the fact that there was something wrong to a head so I didn’t need an explanation, I had been having episodes for almost a year and a half at that point. I was monitored and I think I knew everything I needed to know after I finally had a diagnosis.
I went to my local hospital when I had HE episodes, in retrospect I wish my husband had gotten me to Mass General, my transplant hospital. My local hospital really was not that familiar with HE and my treatment was pretty bad.
Another time the NP called and said to get to the hospital immediately, to go local. My hematocrit and hemoglobin counts were very low. I think the counts were so low she was concerned that if my husband drove me to Boston, a good hour away, I could have a problem because the doctor at the local hospital said my counts were so low that I could have had a cardiac arrest. They sent me by ambulance to Mass General. I am not sure if my situation would have been handled as well in the local hospital.
For those going through this, I can only say if you have found an excellent transplant center and an excellent hepatologist, just do what is suggested and take care of yourself, let them know if anything is wrong. Be confident and positive, better days will come.
If you have not yet chosen a transplant center, do your research and find the best that is geographically available to you, or that you can get to if it is a distance. There are a number of helpful sites, one is SRTR.org.
JK
I get tired real easy. I fall asleep at the shop once in awhile and noone says anything. They put a shunt in my liver a year ago and that stopped the fluid build up
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1 Reaction@rowdyramsey I have been on just about every narcotic (hydrocodone, oxycodone, oxycontin, Dilaudid) at some point in time for knee replacements, the liver transplant, and a couple of other painful things but never for as long as you were. I was on either oxy or hydrocodone for a few months following my first TKR but for some reason I have so far been able to discontinue narcotics without a problem. Part of that may be that I have always been very conservative in how much I took.
That's good that you, yourself, took the initiative to discontinue the drugs, that does seem like an excessive amount and I suspect almost anyone would get dependent on them if they were taking them for that long.
You must be feeling much better now, I am happy for you, and impressed that you took care of this yourself.
@racing212 It seems a lot of people complain of fatigue. I have been having a problem with that recently but I don't think it is related to my liver transplant, I am pretty sure it is related to simply not sleeping very well. Are you able to get a good night's sleep? I often wake up and am exhausted still but can't fall back to sleep. I will get up, have breakfast and then after doing a few things return to bed for a nap. I can do that because I am retired.
JK
It's gotten worse since my liver don't work right any more. I also had leukemia that also wore me out
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1 Reaction@racing212 health problems really do cause fatigue, and you apparently have a couple of things contributing to it. Try to get more sleep than you usually need to see if that helps, or if possible take naps. I found naps to be essential when I was pre-transplant. Have you spoken to your doctor about it?
I hope your problems resolve soon so you can get on with a more active life. Do you know your MELD score now?
JK
Thank you for your kind words! Yeah I was way over prescribed. By the end of it I could take 20 .4 Dilaudid at one time and it didn’t even touch me! I knew . They actually threw me off the transplant list because they said the pain would be to great cause they could Not give me enough pain meds to comfort me because my tolerance was so high. They alone where responsible for medicating me because I was living at the hospital on a permanent basis. They gave me Dilaudid every 4 hrs along with Atalanta and morphine every 3. The doctor called my mom and said I had lapsed into a coma and this was the end. She came immediately and found me totally awake and out of my mom. My mom caused a big scene(she is a retired RN. I wasent in any coma<they had drugged me so bad that I lost consciousness. My mom went nuts on them. They overly medicated me and if I wasent under HE,I was a zombie stoned out of my mind! They put me back on the list 2 months later
Unfortunately , I have developed an eating disorder in which my life is at stake once again. Problem is I cant eat. I’m nauseated all the time and can’t get food down because of it. It’s not like I don’t eat cause I think I’m fat. I don’t eat because I have no appetite.. I’m seeing a doctor and a psychiatrist. About 2 months now. They have done nothing!!i go every other week and not one thing is talked about of any importance. It’s a joke!
Fatigue is always been a problem for me. It takes me 2 hours in the morning just to feel like I can move. It’s ridiculous. I have no problem with sleep. I have been on Trazadone since the transplant. I go to sleep within 20 min.<don’t wake up and I can sleep 10-11 hours a day! I am still disabled so I’m home all the time.Are you still disabled from your transplant? Anyone?
@rowdyramsey I had a great recovery from transplant and never had a problem from it.
Your journey sounds very unusual. I assume you are being treated at an excellent transplant center, if so you need to believe in them. If not, then find a different one.
I'm sorry to hear you are having difficulty eating now. Hopefully the doctors you are seeing will be able to provide you with some help. Please let us know how you are doing, and if they do have any suggestions for you to get beyond your lack of appetite.
JK
I honestly can't recall any pain meds after surgery. Maybe within the first 48 hours but nothing after that for sure. The only pain I remember is from lying awardly in the bed trying to get comfortable and my back hurt after 8 1/2 hours during surgery.
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