Liver transplant

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Cazza
New Member


Date Joined Aug 2005
Total Posts : 12
   Posted 8/11/2005 12:33 PM (GMT -7)   
Hello,
I have been looking for a forum for people who have had liver transplants in the UK and haven't managed to find one, so I hope you don't mind me having a look round hare to see if there's anyone who has maybe shared some of my experiences.
I had a transplant 4 months ago after becoming acutely ill with liver failure within a matter of months from an unknown cause. It is very frustrating to be told that I may never know what led to my liver failure. I have never come across anyone else in this situation, though I know I can't be the only one!
I am now dealing with the emotional after-effects of having received a transplant. As I said, I became ill very suddenly after suffering on and off for a few months, and I was very fortunate to be placed on the super-urgent list due to the severity and rapidity of my illness, and I only had to wait 6 days for my transplant. This meant I only had 6 days to get my head round it before the op though! Now I'm trying to rebuild my life but most of the time I just feel like I can't think about anything but my illness and the transplant. I'm aware that I've been very very fortunate and it seems like every breath I take is a gift. This can be a wonderful feeling, but sometimes I just feel almost grief-stricken, and to be honest I'm an emotional mess! If there's anyone else who's been through this I'd love to hear from you, because sometimes I feel guilty for feeling depressed when I should be happy just to be alive.
Also, if there's anyone who has any questions about what to expect with end-stage liver failure or a liver transplant, I'd be happy to help if I can.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/11/2005 12:43 PM (GMT -7)   

Welcome, Cazza!

Congratulations on the new liver!  yeah

It's understandable that you would have some strong emotions after your experience. Not all of them are going to be good every day. That's perfectly normal.  The medications probably don't help, either.

There are a lot of great people here. Keep messaging.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/27/2005 7:23 PM (GMT -7)   

Cazza,

It's been a while since your last post.

How are you doing?  Everything going well?


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Cazza
New Member


Date Joined Aug 2005
Total Posts : 12
   Posted 9/1/2005 6:39 AM (GMT -7)   

Hi There! I'm doing really well thanks,

I'm really starting to get back to normal now. I'm looking for work, applying for a university course next year and finally getting some driving lessons.

I've decided to stop worrying about things all the time and just get on with my life. I've spent the last few months doing nothing but thinking, so now I want to start actually doing things! 

Hope everything is going well with you and your fiancee.

Cazza


Gandr1212
New Member


Date Joined Sep 2005
Total Posts : 1
   Posted 9/1/2005 12:30 PM (GMT -7)   
Hello,
I am new to this site.  I am looking for fellow transplantees.  I had a liver transplant Nov. 29th 2004.  Mine was due to alpha-1 antitrypsin def. 
 
1) Does anyone have a problem with there skin?  My skin feels like thousands of fine needles are sticking in me.  I tried sticking myself with a regular needle and it was dull in comparison. 
 
2) How long before your memory starts coming back?  My children don't believe any of my memories now.
 
 
Thanks,
Gail

Cazza
New Member


Date Joined Aug 2005
Total Posts : 12
   Posted 9/7/2005 10:18 AM (GMT -7)   
Hi Gail,

Wow, I don't know about the momory thing. Do you mean you have lost some of your memories, or that your short term memory is suffering? Or are you referring to memories of the time around your transplant, as that is usually hazy for most people due to the effects of the illness and medication.

Regarding you skin, I did have problems with tingling in my fingers and toes, but it wasn't as bad as yours sounds. I assume this must be a side effect of the drugs?

Hope you're keeping well,
Cazza

adlady16
New Member


Date Joined Aug 2005
Total Posts : 9
   Posted 9/8/2005 1:39 PM (GMT -7)   
Hey Tiff40!
eyes
I hope everything's OK. I haven't received any emails from you in a couple of days. Believe me, I know that with everything going on, you just can't wait to hit the pillow at night, but it seems the minute you wake up, it starts all over again. Just remember, I'm here if you need any info or help.

Adlady16

stephy123
New Member


Date Joined Sep 2005
Total Posts : 1
   Posted 9/8/2005 2:20 PM (GMT -7)   
hi, i'm about to begin Interferon treatments, which'll last for 6 months, for Hep. C. does anyone have any advice/ tips for me? i'm very, very scared.

tephanies2003

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/13/2005 9:00 PM (GMT -7)   
Welcome, stephy123.
 
Don't be scared! My fiance is 7 months into his 48 weeks and it's been much easier than they we expected.  I know not everyone is the same, but it is encouraging.  Right?
 
He gets sick to his stomach (nausea, gassy) and is really tired, especially after the shots. But nothing like what they warned us might happen.  The shots don't seem to hurt, physically.  (I hate having to 'poke' him, more than he seems to hate getting 'poked'.)
 
We have a friend in Canada who gets tired and sick to her stomach, so she drinks a lot of water.  It's really killed her appetite, but there are lots of ways around that, too.
 
rbetzmis has posted a few threads here.  He just, if I recall, took his 12th shot and had some great tips that work for him - diet and exercise.
 
If there's anything in particular that you're worried about - post it here and, I'm sure, someone should be able to help.
 
God Bless.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/13/2005 9:14 PM (GMT -7)   

Gail, welcome.

My fiance, Mark, whom I quote constantly, was transplanted in June, 2004.  He's gotten a lot of his memories back, but some things are still a little 'gone.'  In fact, he remembers certain things better than I do.  Other things are just kind of an ammonia-tainted haze that he's positive happened and I'm positive didn't. 

Mark has the same sensations that you're talking about - mostly in his feet and ankles now.  But he did have it in his legs, very badly.  At one point, the doctors gave him neurontin; because the pain was from the nerves healing in his legs, after being damaged by all of the water that he had carried for months before transplant.
 
Where exactly do you have this 'prickly' feeling?  If it's in your belly, that could also be from nerves regenerating/ healing.  Have you asked your doctor? 
 
I hope that helps.
 
God Bless.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

suslynn
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/4/2005 3:06 PM (GMT -7)   
I had a liver transplant 13 years ago. It was August 1992. I was back teaching full time the next fall and I really haven't missed much since then. I also had a baby after my transplant (6 years after). She is fine--healthy, normal 7 year old.
 
It was the best thing I have done. I had hepatitis, but they still don't know what kind or what caused it. I hope things are going well with you. I think I have to have my colon out, but you know--whatever I need to do, I will! Thank heavens they can do it!

maz83
New Member


Date Joined Oct 2006
Total Posts : 1
   Posted 10/22/2006 10:01 AM (GMT -7)   
Hello
 
i am new to this site. i also have been searching for a site for people who have had transplants. i had a liver transplant 13 years ago when i was ten. How are you doing now? still good?
 
i found all the stuff about tingly skin weird my drugs make my hair grow very fast particularly on my arms, i have very hairy arms does anyone else?
 
please reply i have never really talked to anyone else who has had a liver transplant
 
xxxx

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/22/2006 11:11 AM (GMT -7)   
welcome maz,please keep checking back and feel free to share your experiences,,,,,i know of at least one person whos husband is waiting on a transplant,so maybe you two can exchange information:)
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/25/2006 11:48 AM (GMT -7)   
Maz, hospitals that do transplants often have support groups on the premises. You might want to check that out. Meanwhile, we are here...though personally I have not had a transplant.

Connie

SisterMo
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 11/6/2006 4:37 PM (GMT -7)   

Hi Cazza,

I'm going thru the liver transplant process with my brother, its too long of a story to go into right now.  It's been 6 yrs. since he got sick.  After 5 years (at a large city hospital) they discovered that he also has Hep c.
 
I'm so happy to hear you are doing well.  It is a super scary thing the whole transplant thing, probably a good thing you didn't have time to think about it.  At least in the UK you don't have to worry about the cost!  Here, it will bankrupt you.
 
My brother was offered a liver after 3 months waiting but said "No thanks".  Now that his liver cancer is almost over the limit to offer him a liver, he is ready to go.  It may be too late for him (if it has spread they won't do it).  He has to have oral surgery or they won't do it either.
 
 

stuart9980
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/19/2009 11:19 AM (GMT -7)   

Hi all

I was very pleased to read the story about the lady who had a liver transplant 6 years ago and then went on to have a baby. I had an emergency liver transplant nearly 6 years ago, due to an arthritis condition that can cause problems with your organs. I am now very well and ready to start a family. I have had the all clear from the hospital so its all ayatems go now. Very excited....just hope I don't have any problems conceiving now!!! xxx wink


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/19/2009 1:13 PM (GMT -7)   

Hi, Stuart, and welcome to the forum!  I wish you all the luck in the world with starting a family!  You did pick up on a very old post.  If you wish to participate on the forum, it would be best for you to start a New Topic to introduce yourself and your situation.  In this way, you will not "fall through the cracks" and will get replies from other members.

Best of health and luck to you!

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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