Cirrhosis of the liver (end stage)

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frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 11/7/2005 2:10 PM (GMT -7)   
mad  My boyfriend was diagnosed with cirrhosis of the liver ( he's in the end stage) in April of this year after he had really bad swelling in his feet and legs and turned really jaundiced. Since then he has been in and out of the hospital for various reasons related to his condition. We seem to constantly be fighting his water/weight gain. He is on lactulose, lasix and aldactone the doctor changes the dosage of the lasix and aldactone so often it is a wonder it even works at all. I feel useless to a certain degree because there is nothing I can do for him. He is in constant pain and within the last week it has just gotten worse. We have been told that he has approx a year, but who really knows. He has an appt. at the end of this month for pre-transplant testing to see if he will beable to handle a transplant, that's his only  hope for living since his liver is so shot. My biggest fear is that we are going to be told his body won't handle it, then what.... sit back and watch my love die? I get so scared now on his condition it's not funny. He's had a couple of episodes where he wasn't himself. The material and things that we have read doesn't seem to be to promising.

PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 11/8/2005 12:25 AM (GMT -7)   
I'm sorry and I understand - my father is suffering from cirrosis and end stage liver disease also -he was recently in the hospital with kidney and liver failure - he came home and he is back almost to himself at least for now - it is so hard not knowing what is going to happen and how long we have - I can imagine the things you are thinking - I can tell you from reading this site and experience with my dad the lactulose helps keep his head clear.  Are they giving your boyfriend anything for pain?  I go back and forth between wanting to know what is going to happen and trying to enjoy the time that I have with my Dad - it is the hardest thing to watch someone you love suffering - I wish I could know - I wish I could tell you - it is so hard - I hope your boyfriend can get on the list for the transplant

frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 11/8/2005 8:39 AM (GMT -7)   
It is really hard not knowing what is going to happen next. He is on a real mild pain medicine because his liver can't handle anything stronger. It doesn't help him though, he still complains of hurting. I do a lot of wondering if things will get worse, or if he'll stay like this?  The material and things that we have read doesn't sound too promising. I've read were other people's amonia levels have caused them to go into a coma. That really scares me. He has had a couple of episodes that lasted a couple of days, but hopefully that won't get  worse. The doctor just upped his lasix again and that scares me because I don't want him to wind up with kidney failure but yet we have to get the excess fluid off. I just wish I knew what was going to happen down the road. I get so tired of him being in pain and nothing I can do about it.

PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 11/8/2005 9:29 PM (GMT -7)   
I know exactly what your are talking about - hang in there - I wish so bad I could know what is going to happen with my Dad - we are living with him now and I'm afraid if we move out because he is feeling well he will go down hill and if he is only going to be around for 6 months I want to just keep living with him because I know he is lonely since my Mom died and want to enjoy his life with him - but then if he gets any better I'll be driving him nuts - where is the crystal ball when you need one.  He is lucky to have you it is hard on you but imagine if he didn't have you how much harder it would be on him.  I wish I had some words of wisdom.  Take it easy

frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 11/9/2005 10:11 PM (GMT -7)   
There are a lot of times I wish that I had a crystal ball myself to tell me what was going to happen next. It is like one scarey rollercoaster ride, with all the pain and things that come along with this disease. I am glad your dad is doing better. I wish I knew what was going to be in store here. One thing though, it is never boring, always something going on. It is nice to know that I am not alone and have someone to chat with about this. It gets so frustrating at times especially when you see them in so much pain and nothing you can really do. There are times I try and be so strong but then other times I just loose it. Thanks for listening. You take care too.
 

weav
New Member


Date Joined Nov 2005
Total Posts : 5
   Posted 11/13/2005 8:39 PM (GMT -7)   
frieghtened, I can tell you a story of what I went through. It does seem to be the end of the world whe you don't know much and you are starting into the pre-transplant testing.
This isn't to make you feel worse but to let you know there is a light at the end, and my story is one of a lot I have told since I transplanted.

It all start for me back in 1999. In a return trip after doing a start up in Denmark I gave blood at the plant for a friend that had a bypass. I was home about a week and headed back to Denmark for a month while a was there the wife call and said I go a letter for the blood center say I needed to see a doctor and not to give blood again.
I kind of blew it off after I got back and two months later I passed out one day. It was only for a min or so. The wife got me in to the doctor I went from his office to ICU and spent three days there and then 12 more days in the hosptial. I had me first bleed I had lost so much that they stopped pulling blood samples for three day because it was dropping my level each time. They told me I had Hep-C and that my liver was in bad shape and Set me up to see the doctors at Baylor in Houston the next week. Well after three more week of test and all the meds your man is going through They told us I needed a transplant. Well we figure a few years before I would be in trouble. They told us something we didn't want to hear. I had six months a year at the very best. We were crushed! We had no idea that I was that bad. and they started me on pre-transplant test to see if I could do it.
I didn't have the water problem but the Nh3 and Protien was my biggest problem with in a month I was so sick and hated lactulose, lasix and felt the same as you. Felt all my time was sleeping or in the bathroom. March 2000 I made the list all seem to be going well then I was taken off the list for three weeks due to a kidney problem that turned out to not be a problem.
The pain does get you down and they will tell you you have to get worse. When I made the list I was a three like everyone. We were like Hey I got a year shouldn't I be higher on the list. With so many people wait on the list you have to get sick and a lot sick to move up in rank. The list isn't just you state or area it the whole USA. When you start finding INFO thats a lost of people and a lot in the same boat you are and worse.
All went well if you can call it that till mid Sept 2000 when I had my second bleed I was at home that I just didn't feel rightall evening. They had gave me a test kit to test myself for blood. I did it and it showed a little but not as bad as the first bleed. They had told us if I show sign of a bleed to get to a hosptial as fast as we could. So be didn't head into Houston we went to the closest one were my GP was. Got in to the ER at midnight. They ran test and I wasn't that bad and were trying to get my gastro guy in there to handle me. Well he was out of town and his stand in wasn't picking up the phone.
about 4:00am I started passing blood and a lot of it. Off to ICU I went. By 8:00am I had lost so much blood they had my bed jack up I was almost on my head My blood pressure was 62 over 40. The doctor showed up and they took me in to start the banding on the neck to stop the bleed. they got that done and then loaded me on to life flight to Baylor down town. I went from the bottom of the list to the top.
I spent 16 days in the hosptial most of that they were trying to hold me hoping a liver would come up. When they had to send me home they told me to go home and get all my afairs in order and do not do a thing to just stay in bed as much as I could that i only had a few days or a week or two at best. We went home and could believe this could be it. Did what I could which wasn't much Got the call eight days later at 2:00am that they had a liver and it was in route to Baylor and I needed to get there ASAP. After I was told three people had been call but I ended up being the best match I went under at 6:00am and woke up in ICU at 5:00pm. I just though the last six month I had had pain I had more tude runing out of me than I ever figure they could. Will I was out and and back at home in four days after a about a month I was walking a mile and Just got better after that. The first tie I wife got to see me in ICU she said my color was the best she had ever seen in the 25 years we had been together.
Now after four year I doing ok I on week 34 of my Peg treatments for the Hep-C. A transplant doesn:t fix that problem But I was clear at 12 weeks and have been since. I think it isn;t that bad see what I have already been through I easy to handle after what I been through already.

Hang in there!! It seems like they are just shoving you from one thing to the other but when it happen it fast. With what they hae learned in the last five years a lot more people are getting a new life. It doesn't seem that way when you waiting but number of transplants have doubled in that time.
Best wish and don't give up.

Don

Post Edited (weav) : 11/13/2005 7:42:45 PM (GMT-7)


frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 11/13/2005 9:47 PM (GMT -7)   

Don,

     :-)  Thanks for sharing your story. I am glad things worked out for you and that you are doing better. The doctors told Steve (my boyfriend) that he has approx. a year left. His cirrhosis was caused from drinking. He hasn't touched a drop since April 2005. He is only 45. It is really hard living with the possibility that we may not have a whole lot of time left with one another, but after reading what you have been through I feel that there maybe a little hope at least. I guess we will find out more when we go to KU for his pre-transplant testing. I hope they will beable to help but yet I am scared. His doctor here won't do a liver biobsy because his blood is so thin, but yet in the packet we got from KU it states if you haven't had one that they will do one. I hope all goes well for that. There really is a lot of stuff a person has to go through. I feel really bad for my boyfriend. I know how scared I am for him to be going thru some of these tests, I can't imagine what he is thinking. Hopefully things will work out for us like they have for you. It just seems like everytime we think we get over one obsticle another follows. Just a neverending ordeal I guess. He has had some bleeding lately but the doctors don't seem to be too concerned. We just get told it is part of the disease. Which sometimes gets frustrating because it seems like that is their answer for everything. One of our biggest fears now is him getting kidney failure on top of this liver disease. He doesn't really go as much as he should be with all the lasix and aldactone he takes. He still retains a pretty significant amout of fluid. Maybe they will try and drain some or something when we go to KU. Thanks for listening, it is comforting to know that their is hope, and hopefully ours will wind up a success story also. 


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 11/14/2005 7:42 PM (GMT -7)   

frieghtened,

Just checking in and saying hello.

If your boyfriends problem is from alcohol - have they done a biopsy?  I only ask because I know they can't tell how much of the liver is left without one and they go by history and blood tests.  It is good they are going to let him get on the transplant list - I just mentioned that to my Dad the other day - he needs to stay sober and if he can maybe they'll put him on the list-well and if he doesn't stay sober that is it.

I don't want to spread false hope but I'm telling you I have had Drs. tell me that my father-in-law was going to die at least 4 times and he came home every time (when he did die the Dr. thought he'd pull through - go figure) and they thought my Dad wouldn't even leave the hospital - they didn't give him any medication for his kidney failure and his kidney's have bounced back and are working - I have faith in Drs. but they really can only give you a guess - so if you have faith grab on to it and hang in there.  My Dad walked about 3 miles on Saturday - the nurse just couldn't believe it.

Hoping your day goes well.

 


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 11/14/2005 7:43 PM (GMT -7)   
sorry I just re-read your post about the biopsy...

frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 11/14/2005 9:38 PM (GMT -7)   
Hi PN16,
 
    He had to attend AA for at least 6 months ( and will have to continue doing so)  before they would consider him to go thru the pre-transplant procedure, which is what we are doing at the end of this month. If everything goes okay then they will put him on the list, but he has to go thru a lot of testing to see if his body will handle a transplant. The testing and stuff they have planned is almost overwhelming. Poor Steve is probably going to feel like a guinea pig to a certain degree. I have some hope, but there are days when he looks and feels so bad that I am not sure what to think.I know nobody can really tell when somebody is going to go or really how long anyone has. At this point we have just tried to start spending as much time together as possible. I hope all goes well in 2 weeks.That is really great that your dad walked that far. I am glad to hear that he is doing better. So far things haven't been too bad lately about the same as usual. Keep in touch.

Post Edited (frieghtened) : 11/14/2005 8:46:35 PM (GMT-7)


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 11/15/2005 2:42 AM (GMT -7)   
I send some good vibes your way - I hope you have a good day tomorrow:)

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 12/2/2005 1:41 AM (GMT -7)   
hi. i'm really sorry to hear what you are going through. i don't really know what to say to you except hang in there & don't ever give up hope. i too have severe advanced cirhosis & i was told i had 2 weeks to 6 months. that was 8 yrs. ago & i still have the same liver but am hoping for a transplant. but the point is there is always hope.diet & fluid intake are very important to the fluid build-up & be very care full about the sodium intake. most of all remember you are never alone. stay strong. i'll think of you & pray often for you & your loved one.
                                                                                           lerie

frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 12/6/2005 9:41 PM (GMT -7)   
:-)  Well we went to KU Medical Center last week so that Steve could go through the pre-liver transplant process to see whether or not he will make a good candidate. We got some of the test results but won't know all of them for about 2 to 3 weeks. In the meantime we have to make a dental appointment so that he can get a letter stating that he is okay and free from any infection then it is on to the waiting process to see if all of the physicians agree that he should be placed on the list? Then it is more waiting....... and then the worse he gets the better it will be for him to be placed higher on the list. I guess all we can do now is wait......... I get so tired of waiting and seeing him just decrease a little more every day. I know I don't deal with it all very well at times I can't even imagine what he feels like on the inside sad . Not a lot of news yet HOPEFULLY within the next few weeks we will know more, so I'll keep you posted.

theswan
Regular Member


Date Joined Nov 2005
Total Posts : 197
   Posted 12/9/2005 12:30 AM (GMT -7)   
Thanks for this post and website

I am distressed for a good friend.He has Hep-C and went to the area medical center and was told his liver is "going" he called me two days ago from a hospital.
He had a reddness on his innner thigh and felt very tired.They tell him his liver is 'failing" upon visiting him He was so tired he started snoring as I spoke to him and then would be awake again-like a switch was turned.He then spoke nonsense and then became lucid again.I am so upset over the sudden swing in his health.I called today and he spoke of dying soon! He said there is ammonia in his blood!

Please if there is someone who knows about this,please respond,I am also very afraid.Can he get better? at least for a while if not for good?

This is hard on all!

Glen

Gogo
New Member


Date Joined Aug 2005
Total Posts : 2
   Posted 12/9/2005 11:53 PM (GMT -7)   
If anyone is close to St. Louis Missouri Go see Dr. Bruce Bacon At St. Louis University Hospital...He is head of the liver transplant department at the hospital...He treated Naomi Judd....He has been my Dr. since Nov. Of 93...He also treats Willie Nelson...The Dr`s. in Illinois had gave up on me but I am still around after 12 years of being doctored by Dr. BaconThe toll free number is 1 800 268 5880 as for him & they will connect you to his office....God Bless & good luck Everyone

PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 12/14/2005 10:39 PM (GMT -7)   
to frightened -

Hope all is well and the holidays are distracting a bit.

To Glen - my Dad was told he had days to live and it has been about 4 months he recovered from kidney/liver failure (he has cirrosis) - my family is staying with him and we are enjoying our time with him - he isn't 100% but he is doing well eating and we went shopping - so your friend may have a bit of a recovery - the problem is no one knows or can even tell you. The Drs. told us my Dad wouldn't leave the hospital a few months ago and we put up a tree this weekend?!?!?

My Dad is starting to slur more now and is very slow - like he is in slow motion, I don't know if he is wearing himself out or if it is his liver not working as well as it was - I'm constantly worried but I do feel blessed to have this time with him - if he had passed away in Sept. I would have missed out on so much - he was so out of it before he went in the hospital - since we are living with him we have all become closer and he is enjoying us - (I've become a better cook!) he wants us to move home after the holidays (we live in the same town)- I don't think he wants us to leave but I think if we stay he will feel he isn't going to recover and positive thinking and denial has gotten him this far - I'm so nervous about it but I think we will try it

I'll echo GoGo's thoughts -
god bless and good luck
hang in there baby!!

frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 12/15/2005 9:52 PM (GMT -7)   

PIN16

So far everything is going okay, Steve is still hanging in there. We are awaiting his test results from KU we have some of them but not all. The holidays seem to be a little more special this year than the past probably because he is so sick and we aren't sure if this will be the last or not so we are trying to make it as special as possible. I'm really glad to hear your dad is better. Best wishes to you and your family and happy holidays :-) !!!


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted Yesterday 9:49 PM (GMT -7)   
frightened...

Happy holidays to you too - I hope Steve is feeling well and can eat some pie:)

All the best

smurfybluedancer
New Member


Date Joined Dec 2005
Total Posts : 1
   Posted 12/27/2005 2:18 PM (GMT -7)   
I just joined because i understand what all of you are going through since my mom has the same disease--cirrhossis brought about by a blood transfusion in 1988 that gave her Hep C. I am going crazy...I can't stand it when she is out of her mind (encepalopathy) and she is getting worse and worse.  She can't even stand up.  What bothers me is that we live in New York City, where the best specialists are, and no one referred us--I had to do all the research by myself.  I just can't believe that there is nothing that can be done for her.  I am so upset.

Cyborg Ninja
Veteran Member


Date Joined Jan 2006
Total Posts : 647
   Posted 1/11/2006 2:56 PM (GMT -7)   
This is such a horrible disease and reading all of the anecdotes here makes me depressed and angry. I wish there was more research and more was being done for people with the disease. So few people get transplants. It seems the doctors take far too long to do testing for possible transplants. If anything it should be done asap. I can only hope for the best for all of the people here who have hepatitis and for the loved ones of those people.

Big_Ol'GUt
Regular Member


Date Joined Mar 2003
Total Posts : 146
   Posted 1/11/2006 3:26 PM (GMT -7)   
Cyborg Ninja, just so you know that there is alot of research being done on HCV. My current job is to study HCV, and get an understanding of why it varies greatly from people to people. And how come some people respond to tx and others do not. One thing we do know is that the immune system plays a major role in one's response to the tx and virus. But you have to also understand, that Drs. where not even aware of HCV until the late 80's-early 90's. Up then it was only known as nonA/nonB hepatitis; and test to screen for HCV were not developed until the mid-90's. The understanding and tx of this horrific diesease is still in it's infancy, although many advances have been with in the past decade.

So few people get transplants, because there are not that many livers available.
***Every idea is a link in the chain of progress ***

DX in Aug. 20002
Surgery (small bowel resection) for crohn's on Aug. 17, 2005. Symptoms since I came out of my mother (LOL), no but really the age of six is when I first started developing signs of Crohn's.

Post Edited (Big_Ol'GUt) : 1/11/2006 2:37:00 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/12/2006 1:35 AM (GMT -7)   
"test to screen for HCV were not developed until the mid-90's."

Big, there was a blood test in '92 for HCV. That's when my blood was tested, based on my history of chronic fatigue for a year or two. I was formally diagnosed with hep C in March of '93 per biopsy. I'm not sure when they started testing blood used for transfusions on a regular basis, though.

Connie

frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 1/17/2006 9:29 PM (GMT -7)   
Well it is the beginning of a new year and still a long way from Steve being put on the liver transplant list. We were told that he had to have clearance from a Dentist,(because you have to be infection free.) We went and had all of his pre-transplant testing done and everything is in his favor for a transplant. We just need clearance from the dentist. Which is going to take a while. It took us a month and a half to find a dentist that would accept medicaid, Steve finally got his SSI approved. He goes next month for a check up with his hepatologist. He goes back to the dentist next month to have some teeth pulled. It is a very slow process on getting things in order it seems like, but yet at other times things just seem to be over-whelming. Here the past week he has been in and out of awareness. It's like one minute he'll be okay and the next look at you like where am I?? I just wish things would go a little faster and that he was on the list already. He keeps saying as slow as this dentist is he maybe gone before he can even be on the lists and what really hurts is that the dentist he has is not compasionate at all and it actually maybe a possibility???? I just wanted to give an update on his condition. He's hanging in there and holding his own at this point. As in life some days are better than others, we just keep going...........
 
 
 
 frightened
 

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/17/2006 10:11 PM (GMT -7)   
Hi Frightened,Can you ask the dentists receptionists to call you right away if they get a cancellation?Will the hepatologist increase the lactulose to see if that helps? they just raised mine to 120ml a short while ago & the increase has helped me.Maybe it would be worth asking.I can understand the feeling of frustration with these so called proffessinals, in my own experience once they hear the word cirrhosis they don't care. But keep calling around to see if you can find one that will squeeze him in. Please don't give up hope. I'll be continuing to pray for you & Steve.My heart goes out to both of you.When it gets overwhelming come to the forum & talk to us,unload if you will. We're here for you.Hugs to you. later....
lerie


frieghtened
Regular Member


Date Joined Nov 2005
Total Posts : 48
   Posted 1/18/2006 7:17 AM (GMT -7)   

Hi lerie,

  The receptionists will call if there is a cancellation, it is the dentist who only wants to pull like one tooth a month he is really rude. He only needs two teeth pulled and several filled. Steve is just uneasy if he'll only pull one a month he wonders how many a month he will fill??? Steve is on 60cc of lactulose 4-5 times a day and still gets disoriented. I try and have him take more but he gets so stubborn at times it is hard to do. Well it's 7:15am here and I got to my kids to school. Thanks for the suggestions.

frieghtened
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