Liver transplant - maybe!!!!!

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DeniseS
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/27/2006 1:34 AM (GMT -7)   
Thanks to the people who responded to my last thread on here. Things have gone a bit down hill since then, hence the reason I haven't got back to anyone!
 
I have been told there is a likelyhood of having a liver transplant and I am now just waiting on being referred to a liver specialist! I don't want to panic until I am told this is definitely the case but I am feeling very emotional at the moment.
 
Thanks for listening!
 
 
Denise

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/27/2006 3:25 AM (GMT -7)   
Hi Denise,
I have not seen your posts before. Welcome to the Hepatitis Forum.
If you need a liver transplant a specialist is the best person to see. I can understand how emotional you must be. the very mention of a transplant by my heptologist sent me into a spin but here I am 20 months later with my autoimmune hepatitis stable with medication and hopefully my cirrhosis has not deteriorated. I certainly don't have any of the obvious signs that it has gotten any worse.

There are many Forum members who will be able to give you advice and support in this time of need. Remember every member is listening to you, taking what you say seriously, and praying that you will get the best treatment for your ongoing good health.

Take care. Marg.

DeniseS
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/27/2006 3:50 AM (GMT -7)   
Thanks!

I think most of this forum is based in America, I am from England and it's hard over here sometimes to get support. Not from people not wanting to, but not having the facilities to be able to!

The waiting game is the worst at the moment but trying to fill my time visiting friends etc.

Take care

Denise

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/27/2006 4:59 AM (GMT -7)   
Hi Denise,
I am in Australia. I get a lot of support from the forum members and I have a great heptologist and GP. I have been told the Liver Clinic I visit is the best in Australia. My GP has a big interest in hepatitis, looking after many drug and alcohol hep patients. My cirrhosis came from autoimmune hepatitis; my body rejected my liver, nothing I could have done about it. I don't know anyone in Australia with this disease but I have met a few on the Hepatitis Forum who suffer from AIH. It's good to talk to someone with the same as problem as yourself.
Hope you find the members here as helpful as I have. Hope you don't have to wait too long to find out about the transplant! and if you need one I hope you don't have to wait too long.

Why do they think you need a liver transplant? Do you have liver failure? Cirrhosis? liver cancer? I tried to find your first post but has no success.

Take care.
Marg

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/27/2006 6:16 AM (GMT -7)   
Hi Denise,Welcome to HW forum.i'm sorry sweetie I don't remember your other post either so would you mind filling us in again? What kind of liver disease do you have Denise & how long have you had your condition?A good hepatologist is critical. You might find it very helpfull if you write down all your questions so as not to forget all the things you want to ask him or her. You will find a lot of support here.This is also my scource of strong support. the waiting game is the worse. Hang in there.My thoughts & prayers are with you. later...

PS please feel free to go thru the other posts here & join in the great conversations & gather a little info. Glad to have you here!
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


DeniseS
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/27/2006 9:29 AM (GMT -7)   
I was very confused when I first came onto the forum as I am new to such things. Not sure where I put it! Basically I have autoimmune hepatitis, for which I am on prednisolone and imuran. This has caused me to get secondary pulmonary hypertension, for which I am on sildenafil and oxygen, and also portal hypertension, for which I am waiting treatment. I also have hypothyroidism, on thyroxine. Type 1 diabetes, on Novorapid and Levimir. I also suffer from arthritis, which I just take pain killers for. As I have been on prednisolone since I was 9, I have now developed osteoporosis.

My main thing is the extreme tiredness I feel every day and the frustration of not being able to do things with my son because of breathing difficulties!

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/27/2006 11:13 AM (GMT -7)   
Hi Denise, I am so very sorry your post got lost here somehow. I can"t immagine how that may have happenned but obviously & unfortunately it did. I"m sorry I can immagine how confused you must have been.But we found you now hon! We are here for you Denise.You may want to ask your Hepatologist or family Dr. about nadolol for your Portal Hypertension to help reduce the blood pressure , also have you been checked for esophagal & or intestinal verices? of course we can also get verices in the portal vein & other places. Avoid too much stress & get plenty of rest. Your hepatologist may also advice you to decrease activity levels to decrease blood flow. Sweetie if you are taking pain pills this will disqualify you from becoming a transplant candidate as you have to be completely abstinate of all narcotics, benzos, amphitimines & alcohol for a minimum of 6 months before transplant will be considered. Ostreoarthritis is typical in liver patients,very common in deed. If the meds you take cause it as well then this will be a double whammy for you. my heart goes out to you for it is not easy living with pain but there are things you can try to elevate the pain without drugs. Hope some of this helps.As for your fatigue the liver disease will worsen this too. Try to make sure you get adaquate rest whenever possible although this is not easy to do either sometimes.Take care. My thoughts & prayers are with you. later....


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/27/2006 12:39 PM (GMT -7)   
Welcome back, Denise. I seem to remember your first post, because it struck me about the prednisolone. Long-time use causes fractures, which is what caused your osteoporosis. It's the leading cause of avascular necrosis (bone death), as well. I am opposed to it because of its many negative side effects, but realize that some people absolutely have to have it.

If you need a transplant, you will have to go through a lot of pretesting first. If you qualify, there will be more waiting for a liver.

I hope you will come back here often, as it is a great place for both info and support.

Connie

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/27/2006 6:30 PM (GMT -7)   

Hello Denise,

Welcome to the forum! My husband is in the long process of trying to be listed for a transplant. We were beyond belief when we were told that he needed one!! It has been a rollercoaster of emotions. I can relate to how you are feeling. The forum has a wealth of information and we are a very caring & supportive group. Just take one day at a time. We will be here for you!! My prayers are with you!!

HUGS

Teresa


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 3/27/2006 8:30 PM (GMT -7)   
welocome! I found this forum only a couple weeks ago and have found the people on here to be so helpful and caring,I cant imagine going a day without checking in! There are no support groups in my area,so I feel very blessed to have stumbled onto this forum! My hubby has hep b with end stage cirrosis. He is currently taking inferon treatment to try to put the hep into "submission",and hopefully slow down the scarring process. I too have hep b,contracted from my husband,most likely around the time we got married last summer.,,he had no idea he had it and probably had for a long,long time..I hope you get your answers soon and that they are good ones!
trish

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/28/2006 3:12 AM (GMT -7)   

Hi Denise,

I take Fosimax to counter the effects Prednisone has on by bone density.  In the last twelve months my bone density has actually improved, by just a tiny amount, instead of reducing by 3% for my age plus the effects of medication and liver disease.  Ask your doctor about it. 

Take care. 

Marg


DeniseS
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/28/2006 4:22 AM (GMT -7)   
Tried Fosimax but the Dr thinks I am better off on Alendronate. My last bone scan showed no worsening of bone density, thank goodness!

Still waiting on being referred, but I knew this was going to be a long wait! Just want to know one way or another what I am facing. I am able to cope better when I know rather than just guessing what is going to happen in the future!

Really glad I came across this forum. Everybody has been so helpful and friendly!

Thank you!


Denise

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/28/2006 4:30 AM (GMT -7)   
Hi Denise, you will find many of us know exactly what your going thru with "the waiting game". I,m like that to, as long as I know What it is I'm dealing with I can do just that deal with it. Its the unknown that prevents us from coping. I'm glad you came across this forum to sweetie. Have you gone thru any of the other posts here yet? We are here for you . My thoughts & prayers are with you. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/28/2006 2:33 PM (GMT -7)   
Denise, be sure to read the Resources section here, if you haven't already. You can get some solid info from the American Liver Foundation online, too. Knowledge is power. Like you, I want to know all I can about illness that affects me or those close to me. I've certainly learned a lot here, too, about various forms of cirrhosis, diet, etc.

Hang in there!

Connie

DeniseS
New Member


Date Joined Mar 2006
Total Posts : 6
   Posted 3/28/2006 2:36 PM (GMT -7)   
Thanks. I will check it out!

Any advice is greatfully received!


Denise
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