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Posted 2/9/2007 1:05 AM (GMT 0)

Hey Everyone - I am looking for anyone who may know of someone having the same symptoms (after their transplant) as my brother.  My brother had one about 15 months ago.  Three months after his transplant he began having severe itching which has not let up yet.  They have tried several things such as changing his meds, removing gall stones, and even sending him to a Dermatologist.  Anyway - none of this has worked and this has been going on for several months and he is just miserable.  They believe that his bile ducts aren't working - but his liver is...   Therefore I am so confused - because how can a part of the liver not work but tests show that it is....     Help..... confused

Posted 2/10/2007 12:59 AM (GMT 0)
Pjhelp, welcome to the forum. I haven't had a transplant, but I can tell you that the gall bladder, which releases bile, is not part of the liver. It is just below the liver, and is a separate organ. The itching actually sounds like an allergic reaction, but that's just a guess on my part and I'm not a doctor. It seems the only thing that can be done at this point is to try to find some type of cream or lotion that will lessen the itching. Is the itching all over, or someplace specific?

Connie
Posted 2/10/2007 12:56 PM (GMT 0)
Thanks for the reply hep93 - The itching is all over his body constantly. They have changed his anti rejection drugs three times in case it was causing the reaction. This last one they have him on is not suppose to have no kind of side effect of itching but makes him very sick at his stomach. He has lotions and creams that keep his skin from being so dry in hopes that it helps the itching. They have taken 12 gall stones from his liver (not his gall bladder) and when they do that his itching lets up a little but not completely and then comes right back a few days later. Tests show the bile in the blood stream which is causing the itching. I wish they would go back in for surgery and look to see if something is not hooked up right but they won't do that. They put in back on the liver transplant list - but his scores for the liver have fallen so he is now on the inactive list which breaks our hearts because he is so miserable. I don't see how he has lasted this long with this condition. Honestly - he looked better before his transplant. I wish we could find an answer
Posted 2/10/2007 6:43 PM (GMT 0)
Hello,

I don't know about this particular set of circumstances, but...

My husband, who is in end-stage liver failure, recently had a very itchy eczema. GI doc said it wasn't related to his liver; dermatologist said it likely was. Jim wanted a steroid shot; dermatologist said no way Jose! She gave him a number of very brief treatments with UVB rays (in a device like a stand-up tanning booth), and within 2 weeks the rash and itch were gone.

Creams weren't helping the rash/itch, and cortisone creams were only thinning his skin more than it already is.

Best of luck to your brother.

Venita

 

Posted 2/11/2007 3:06 AM (GMT 0)
Hi Venita

Yep - my brother too had the UVB rays. Hasn't helped. I hope they find out soon what is causing this. Surely someone out there knows of a similar incident. I pray someone reads these notes because I know somewhere out there someone knows what is going on.
Posted 2/11/2007 4:33 AM (GMT 0)
The itching is called pruritis, and is caused by bile salts that are accumulating in your brother's blood. This is called cholestasis. From what I can gather your brother has had a liver transplant, so I assume that they performed a cholecystectomy when they did the transplant. So I would guess that the main problem is choledocholithiasis (would need to see a cholangiography). Choledocholithiasis is just a big word for gall stones getting stuck in the common bile duct (CBD), and this would cause pruritis (itching), and a congugated hyperbilirubinemia. Basically, your liver secretes bile (bile salts included) through the common bile duct and into the duodenum, there, bile helps to digest lipids. When this bile (and digested fat) enters the terminal ileum, the bile (with the bile salts) is absorbed and transported back to the liver via the portal vein for reuse (this is called the enterohepatic circulation). When there is an obstruction in the CBD, the hepatocytes cannot absorb bile out of the blood because there is no place for this bile to go. So, this bile enters the regular circulation, which will not cause any harm (exept for itching). Now, there are, as im sure you are aware, treatments for choledocholithiasis. Basically you need to restore bile flow. This can be done through ERCP, where they can use a baloon and a special basket to pull these stones out. The problem here is that these stones are chronic. I have recently become aware of an interesting approach that might can help. I would imagine that simply placing a stent at the Ampulla would not be of help. But placing a much onger stent or possibly a nasobiliary drain further up in the liver could be of help. The approach that I have recently become aware of is a case where the doc placed two stents in the right and left branches of the biliary system. He left these stents to drain into the duodenum. You should mention the possibility of this or a nasobiliary drain to your doc and see where it could get you. A nasobiliary drain can be placed pretty high up in the liver, so I would suspect that this would be the most reasonable and effective treatment. What meds is your brother taking? any Ursodiol? What do his liver function tests look like?  There are no drugs that are proven to help with the pruritis (Rifampin, Phenobarbitone, and even Naltrexone come to mind).  But a nasobiliary drain would.  Feel free to ask any more questions.  Hope your bro gets better.
Posted 2/11/2007 2:37 PM (GMT 0)
Than you very much for your informative response. Given the little bit of knowledge that I currently know and what you have said, I believe that you a correct in your assessment. For example, they tried the stints unsuccessfully as you mentioned above and you wrere right, they didn't work. I have provided your information to my brother and he is going to address it with his Doctors. I will provide feedback on the results of his next Doctors visit. Again, thank you so much for your resopnse, you have given me hope.
Posted 2/11/2007 4:19 PM (GMT 0)
Im glad to have helped and I'm sure that your bro's Docs can get things worked out... A new liver sounds sounds like the best thing for a permanent solution. The nasobiliary drain that I mentioned usually only drains for about 2 months, so depending on how often the stones occur, it might be helpful. The two biliary drains that I mentioned are called biliary bilateral plastic stent placement, and they used 2 10-french stents.  If this approached worked (depending on where these stones usually form), the plastic stents can be replaced with metal ones that would be more permanent and less likely to clog, migrate, or stop draining.  I know having ERCP's all the time cant be fun, and the chances of complications go up everytime you have one. Good luck and God bless... and please let us know as things progress.
Posted 2/11/2007 11:45 PM (GMT 0)
Ryno (aka MDchronie), I just wanted to say THANK YOU for taking the time to post your informative response. It appears you are an MD. If you are still active, I know your time is limited. People posting here are desperate for answers. Sometimes we can share our experiences and offer suggestions, but I believe only a doctor can provide really solid information.

Thanks again and God Bless,
Connie
Posted 2/15/2007 12:55 AM (GMT 0)
Hello MDchronie - update from my brother's doctor. He stated the procedure you spoke about was not a good option. I can't believe he wouldn't even consider it. Now he wants to filter his blood. Doesn't he know that that is not the fix. It may help temporary but the problem is still there. I want him to get another opinion. He has been suffering with this for over a year. He is in such bad shape. Imagine a 200 pound man down to 165 pounds. You know - he was so happy and blessed to get his new liver - but he is sicker now than he was then. I just don't understand it all... I am going to search for another doctor somewhere. Someone who will give him hope and improve his quality of life. Thanks again - for explaining his problem better. It helped me to understand it. Now I will find a doctor that specializes in this type of surgical procedures.
Posted 2/15/2007 2:03 AM (GMT 0)
pj,
sometimes there is a reason that drs do not want to do specific procedures,based on the facts of tests that they have run,,this may be the case with your brother. This site is NOT intended to diagnose,or treat anyones diseases,just offer suggestions,,,and without the full batter of tests in from of ANY of us, we do NOT know what is best for your brother. Maybe asking your brothers dr why this procedure woudnt be good for him would be the best bet,,,,,,you might be surprised to find a good solid answer,,,,,,,,i know that your frustrated but please,,,,,ask the dr more question. good luck
Posted 2/15/2007 4:16 AM (GMT 0)
I agree 100%, the effectivness of the stents would depend on where the stones are forming. Just a thought though. Like dialysis, the stents would not be a permantent solution. I am sure that your bro's docs are doing what they should be, and it sounds like they are very familiar with him and his situation. Do you know what kind of diaylsis they are looking at? God Bless and good luck, and remember, you cannot ask too many questions.
Posted 2/21/2007 1:16 PM (GMT 0)
eyes  Hi Everyone,

New to the forum.  I have autoimmune hep/cirrhosis and just found out yesterday that now I will be placed on the transplant list if I do not die first from dyspnea (shortness of breath) I am scared to death and every Doctor visit is met with severe anxiety and panic.  I have had more tests than carter has pills, I am surprised I still have blood left in my body.  My family is so upset the pulmonary Doctor says I am shunting in my lungs meaning the

blood doesn't get to the lungs fast enough and goes to the liver first.

Now I will be on the list like at the top anyone had a transplant and how was it.  I did visit some sites and did not like what I saw looks scary to me.  I have had surgeries before but not like that!  Anyone support would be most welcomed as I cannot begin to tell you  how upset I am.  Believe it or not my liver enzymes with my current meds are fine.  Prednisone and Imuran.

I do not even have asitices or varioceise I know I spelled that wrong just had an endoscope done eveything looked good except for gerd.  If anyone could help it would be great.

Thanks    Cheryl

 

Posted 2/22/2007 9:56 AM (GMT 0)
Hello Cheryl,

WElcome to the Forum.

How long have you been suffering from AIH / cirrhosis? This is my diagnosis as well but medication is keeping me stable. Has the decline been slow or were you well one day and suddenly got worse? I had terrible shortness of breath before I went into liver failure (before diagnosis) but Prednisone and CellCept have stableisedd the liver inflammation and my liver tests are close to normal now. I was hoping things would stay the same or improve so your post has hit me hard. (even though my liver doctor mentions transplanbt at every visit - just as the last option)

If the liver transplant is your only hope you have no choice. while it may be rough it will give you a full life and the success rate is quite high I believe. I have seen patients at the liver clinic just weeks from their surgery and they have looked well.

Hope everything goes well. Keep us informed of how things are going. The friends here are a great support.

Take care.
Marg
Posted 2/23/2007 8:05 PM (GMT 0)
Hi Marg,

 

Thanks for your reply.  I do not know when I actually got autoimmune hep. they say you have it for a very long time before you actually know it calling it the silent disease. I was diagnosed last April when I became jaundice all of a sudden and was sleeping all the time, I did not even notice just new I felt very bad and something was very wrong I had no idea what believe it or not so I went to the hospital. I have been doing well on my meds as well presnisone and Imuran in fact currently being weened off the prednisone.  Since December I have been having trouble breathing and also dizziness, nassea on going and feeling very fatigued.  I have gone to the hospital many times just feeling awful only to find that my o2 levels were down.  I suffer from most all the symptoms of end stage liver disease except for varicies and the other thing ascites ? Forgive my spelling those are the only 2 things I do not have thank God!  But now suddenly have dyspnea or hypoxemia they do not know if it is coming from the lungs or the heart either way it places me on the list right at the top the only way to fix that  is with a transplant.

 

I did go on my Doctors site at the University Hosp. and it states liver patients who go through a transplant stay in the hospital for 4 month's then have to live on campus for another 2-3 depending on how they are doing.  In the eval papers that I recieved they were very grafic about the proceedure and thankfully I was well enough I did not have to go through that portion of the eval. because I was doing so well.  Now things are being bumped up even appointments and tests and University Hospital will then be notified.  I am really having a hard time with this.....so it my husband he recently lost his Mother and he is sure I will die.  I keep telling him I will do my best I have things to do places to go and people to see and I want to do them before I check out.  But is does not calm him so we wait for the next batch of tests and see what they say either way I have been told and am going on the list.  I have been evaled twice so far and considered pre-transplant I was also informed depending on how advanced your cirrhosis is you will eventually need a transplant even though you can arrest the autoimmune disease the damage to the liver is still their of course this all depends on the degree of the damage.  I really appreciate you responding to me it means so much.  Hope we can talk again.

 

Cheryl

Posted 2/24/2007 5:40 AM (GMT 0)
Hello Cheryl,
I'm sorry that you need a transplant. But it is good news that you will be at the top of the list. My husband is tentively listed here in California. He will probably be taken off the list next month. His cancer has grown too much. What state are you in? Our transplant hospital says the normal hospital stay after a liver transplant here is only about 8 days and then another 30 days nearby the hospital. That's a big difference from yours. I did meet a transplant recepiant (sp) at a meeting that was only 2 weeks after her transplant and she was getting along real well. I expected her or anyone else still to be bed ridden but she walked right into the meeting room. She was holding a pillow to her stomach but she was walking. In that same meeting an older lady had a liver transplant about 12 years before and she looked great. And lead a very normal life after the transplant. Good Luck and best wishes, Pink Grandma
Posted 2/24/2007 1:47 PM (GMT 0)
Hi Pink Grandma,

Thank you for your kind reply! I am Very Sorry to here about your husband. From what I have read transplants for the liver generally only last about 5 year maximum I am surprised to hear about the lady who was living 12 years later. I am from Michigan.
I live in a very small town and have to travel 75 miles to get to the University Hospital we have no support groups here, I have looked all that up. The closest one is 50 miles away for just a few hours and not knowing if anyone will show up is not worth the trip. I got oxegen yesterday and have to be on it 24/7 now I feel like a real cripple I am not used to this at all. I was a very active person and could run circles around other people in a heart beat I am having a very hard time excepting all this and so is my family. I still have so much to do my daughter is getting married and a grandson is on the way, they live in Arizona and I cannot fly their I wish I could. I think the limitations are the worst and now I have to drag this big old o2 tank around makes me pretty angry. What about you and your husband?
how do you cope with his condition? I know if must be aweful hard. Please forgive my spelling as I do not see spell check on this site anyway it was awful nice you responded I hope to talk again and I wish you all the luck in the world and will pray for your husband as I know they do transplants on people with liver cancer as well.

Thanks again

Cheryl
Posted 2/25/2007 2:12 AM (GMT 0)
Hi and Welcome Cheryl.
I am sorry you have to have the liver transplant,but though I dont know of anyone personally that has had a liver transplant,my brother had to have a kidney/pancreas transplant about 5 yrs ago,,,,,he had been a diabetic from age 4,and his kidneys failed,,,,he is now doing GREAT,,,the medical community is doing wonders with medical procedures now,,,I dont think the stay is as long as you think after transplant,though different hospitals have different procedures. he was in a little less then 2 weeks,so maybe ask your dr about this,,,,good luck with holding up through all this and my prayers will be with you and your family...keep us updated.
Posted 2/25/2007 3:14 PM (GMT 0)
Hi Wheredidigo,

 

Thanks for your reply I really appreciate the support.  I am oxygen now and boy is it making a difference.  Everyone has been great I guess it is time to dig out the paperwork again with all the particulars and start asking doctors questions.

 

Cheryl

Posted 2/26/2007 11:27 PM (GMT 0)
Hello. I am new here. I have been trying to research some of what you have been discussing. My father-in-law had a liver transplant in June of 06. about 3 months ago he started with horrible sweats and itching. They changed some of his meds and took him off regular milk. (he was drinking nearly a gallon a day) This helped the sweats but did not improve the itching. They tried putting him on Benadryl. All that did was make him extremely crabby and made him sleep a lot. He is miserable. All he wants to do is sleep and when he stays in bed he spikes a fever. He stays cold. (he is anemic) So he wraps himself in a fleece blanket. This also makes him spike a fever.

Two weeks ago they put him Procrit to help with the anemia. This brought his HGB to a 10 so far.

I have read some of the responses from someone appearing to be an MD. Question....all your responses seem to make a lot of sense. Why wouldn't a place like Johns Hopkins just do the procedure you mentioned? They claim to be experts. Why would they let someone suffer for months with extreme itching and sweats before performing what I see as a simple fix??

Oh yeah as far as how long liver transplants last...the first nurse that took care of my father-in-law after his surgery....was a 12 year survivor of a liver transplant. I have heard and read about many long term survivors.

Wendy

Post Edited (WR) : 2/26/2007 4:38:55 PM (GMT-7)

Posted 2/27/2007 1:56 AM (GMT 0)
Hi Wendy.

Welcome to HW sorry to here that your Father in Law is having such a hard time.
It is probably his medications that are causing some of it. During my care I had to remind all my Doctors as their are so many that they all need to be on the same page as they were not and the University transplant team was not getting the information they needed for my evaluations.

I am so glad to here that the liver transplant does last longer than the 5 years I was told. I am very scared as this would be the next step for me. I do not and can not tolerate a lot of medications at all they make me very ill. Of course with a new liver maybe it would be ok I am hoping after going through all that of course we would expect it. I can understand clearly your frustration for your father in law and hope that they can and will resolve his itching issues as well as the fever and anemia's.
I appreciate the post keep us all posted as this helps us all. Thanks

Cheryl
Posted 2/27/2007 4:57 AM (GMT 0)
Hello Cheryl,
My sorry that there isn't a support group closer to your home. But you have one here at the tip of your fingers. Just keep logging on to healingwell.
We will be your support group as much as we can. And the biggest help that I got in dealing with my husband's condition was right here. It isn't the same as face to face but in some instances it is better. There's always someone here to listen to you and assist and anyway they can. Everyone here are going through trials and tribulations of different degrees. So even if they are not going through the exact same thing they can relate to the pain and suffering that you are going through. I was a basket case when I first logged on. But this has become a sort of release for me. I am coping alot better with the punches as they come. And believe me. Somedays I feel like I am black and blue all over. Keep your spirits up and take care of yourself. I'm sending good vibes your way....along with some prayers..... :-) Pink Grandma
Posted 2/27/2007 12:47 PM (GMT 0)
Dear Pink Grandma,

Thanks so much for your kind words. I am hearing a lot of good information here on this site. I have gotten a lot of good responses also. I can relate to the comfort that you are feeling from this site. My trials and tribulations have been long however I do look forward to the day I will feel like a million bucks again. haha! Today I am going to be a Grandmother again number 5 and am waiting for that most important call. Which I could be thier but.... I was actually present for 2 of the birth's and it was awesome.......I recently got oxygen and that is making my muscle's and body feel a whole lot better when I get up in the morning I do not feel like someone beat me up anymore I actually feel good so that is good.
I am sure things will be moving along quite quickly soon and hope to be better soon. I will pray for you and your husband and appreciate your prayers as well.
Thanks again for your responce we will talk again.

Cheryl
Posted 2/27/2007 7:54 PM (GMT 0)
Hi Pink Grandma,

 

Our newest Grandchild has arrived 7lbs. and 1 oz. 20 inches early this morning all are doing well.  I have some questions if you do not mind.

My husband goes back and forth and upsets me on a regular basis as he is so upset about my illness one day he says he can handle it and the next day he says can't he often talks about getting a place to rent.  His 13 yr old son recently came to live with us after loosing his Mother to brain cancer a year ago and my 14 yr old son lost his father two years ago to suicide. do you have up and down feelings about your husbands illness?  Do you feel like running away at times?  I would really like to know if anyone has had problems with a spouse who is just not thier for them like they would like them to be.  I am afraid in the end or if I get a transplant he is just not going to be their for me even though he says he is.  He constantly upsets me on a regular basis and claims he does not know why.  He recently also lost his mother a year ago and I know that weights heavily on his mind.

Any comments, suggestions, or help would be most appreciated.

 

Thanks

 

Cheryl

Posted 2/27/2007 11:17 PM (GMT 0)
Hi Cheryl,
I hope if they decide a transplant is necessary you are able to get one quickly. I wasn't aware you stayed in hospital for so long after a transplant. But if that's what's needed I guess there isn't a choice.

Keep posting here. It is such a supportive group. I have good family support and a wonderful group of friends but I still find chatting with the folk here who a fellow sufferers is something family and friends just don't understand.

Marg
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