Re: PT and Liver Disease/ from Lyn

[Guest guest]

Thanks for the kind words. Yes, being weak and shaky is a normal occurence for me. Some days are just BAD but I try hard to always watch my attitude. You mentioned stomach and gall bladder issues, I too have the same. My stomach was really the only thing that kept bothering me early on so I had been on protonix and now nexium. It works for me. Mid-september my world fell apart when my body just started failing. I spent almost all of october in and out of the hospital. My gall bladder was finally removed. I experience pain but I never felt as bad as I did then, except for when I get a pottasium drip, it makes me cry. I take a lot of meds each day to regulate my blood chemistry and for fluid, my stomach and thyroid disease. (potassium,thiamine,magnesium,synthroid,folic acid, nexium, lasix, spironolactone) The fluid pills are doing good with less lung pain and rattling as well as reducng the fluid in my abdomen. I am on fluid and diet restrictions and do my best to preserve the sanctity of my body. I wish I could say that I was on the transplant list, it would be good. I am undergoing the full transplant evaluation now, and yes I look in my mailbox every day hoping to see that I have been accepted to the list. I wait less patiently but remain hopeful.

Peace, thanks for listening.

travis

md

TX evaluation

[Guest guest]

Hi ,

My name is and I have a different liver disease than you, but liver disease just the same.

I am so sorry you are feeling so sick.

I feel bad if I dont eat. I get weak, shaky and just plain ill feeling.

I have stomach problems and gall bladder problems too. My insides are so cramped for space due to cysts in and on my liver.

What is the dr. doing for you? I assume you are on the transplant list.

Anyway, I just wanted you to know that I am very sorry to hear you are so unwell.

We are all in the same boat, just some worse than others..

We take one day at a time, try to eat healthy, avoid as much stress as possible, and see the drs. regularly.

I wish for you a better New Year, 2004.

Have a very nice day,

Lyn in Ark.

Travling03@... wrote:

I have been sick for what seems like forever some days, course then again some days themselves seem to go on that long. I am very weak and the fact that I cannot do what I liked to do at this time doesn't sit well on my mind. I have lost so much weight being down to 120 now and the muscle wasting leaves me feeling helpless and not at all comfortable around my friends anymore when the smallest things are so so heavy. My Doctor has allowed me to start in some light physical therapy to attempt to maintain some muscle tone. I it makes me feel better about myself am I doing the right thing or are there things I should watch out for so as not to do any harm. So far all I have seen as bad is how tired I get after doing it. My energy level is usually ok in the mornings but then I fade fast and have noticed that I need to eat regularly and often or I start to crash. I understand

that nothing will help my energy. Well I think or hope what I have said made sense and I look forward to any comments. I am cirrhosis stage 4 or stage 4 cirrhosis or just stage 4, sorry even the stage thingy still confuses me. What are the stages? I know I am end stage.

If any of you are on the TRNSPLNT mailing list you already saw me ask this. I'm sorry.

Thanks, and I wish a happy and healthy new year to all.

travis

[Guest guest]

Hi ,

My name is and I have a different liver disease than you, but liver disease just the same.

I am so sorry you are feeling so sick.

I feel bad if I dont eat. I get weak, shaky and just plain ill feeling.

I have stomach problems and gall bladder problems too. My insides are so cramped for space due to cysts in and on my liver.

What is the dr. doing for you? I assume you are on the transplant list.

Anyway, I just wanted you to know that I am very sorry to hear you are so unwell.

We are all in the same boat, just some worse than others..

We take one day at a time, try to eat healthy, avoid as much stress as possible, and see the drs. regularly.

I wish for you a better New Year, 2004.

Have a very nice day,

Lyn in Ark.

Travling03@... wrote:

I have been sick for what seems like forever some days, course then again some days themselves seem to go on that long. I am very weak and the fact that I cannot do what I liked to do at this time doesn't sit well on my mind. I have lost so much weight being down to 120 now and the muscle wasting leaves me feeling helpless and not at all comfortable around my friends anymore when the smallest things are so so heavy. My Doctor has allowed me to start in some light physical therapy to attempt to maintain some muscle tone. I it makes me feel better about myself am I doing the right thing or are there things I should watch out for so as not to do any harm. So far all I have seen as bad is how tired I get after doing it. My energy level is usually ok in the mornings but then I fade fast and have noticed that I need to eat regularly and often or I start to crash. I understand

that nothing will help my energy. Well I think or hope what I have said made sense and I look forward to any comments. I am cirrhosis stage 4 or stage 4 cirrhosis or just stage 4, sorry even the stage thingy still confuses me. What are the stages? I know I am end stage.

If any of you are on the TRNSPLNT mailing list you already saw me ask this. I'm sorry.

Thanks, and I wish a happy and healthy new year to all.

travis

[Guest guest]

Hi ,

I meant to get back to you to let you know that I really am so sorry you have had so much problems..

Are you still taking nexium for acid reflux? I haven't tried that. I have that bad!

Do you have AIH? I have read so many e-mails from different groups, I am not sure..

I have polycystic liver disease which is a rare disease where the liver does not drain the way it should. It causes cysts to form outside the drain pathways. I have some very, very large ones on my right lobe.. Also have smaller ones throughout the rest of my liver.. I was at Mayo clinic in Oct of last year.. The only option they say is a liver resection to cut out the bad part of the liver along with the cysts, or a liver transplant,if it gets bad enough..

I hope all goes well with your transplant evaluation.

Liver disease is bad! But of course, any disease is bad.. Especially when it is chronic and you cant fix it..

Thank goodness for the meds for AIH, but I know they cause many side effects.Still. those that they help it is well worth it..(if they keep one alive and the meds seem to do that.) in most cases.

I wanted to wish you a good rest of the week.

Take care of yourself.

Blessings,

Lyn

Ark.

Travling03@... wrote:

Thanks for the kind words. Yes, being weak and shaky is a normal occurence for me. Some days are just BAD but I try hard to always watch my attitude. You mentioned stomach and gall bladder issues, I too have the same. My stomach was really the only thing that kept bothering me early on so I had been on protonix and now nexium. It works for me. Mid-september my world fell apart when my body just started failing. I spent almost all of october in and out of the hospital. My gall bladder was finally removed. I experience pain but I never felt as bad as I did then, except for when I get a pottasium drip, it makes me cry. I take a lot of meds each day to regulate my blood chemistry and for fluid, my stomach and thyroid disease. (potassium,thiamine,magnesium,synthroid,folic acid, nexium, lasix, spironolactone) The fluid pills are doing good with less lung pain and rattling as well as reducng the fluid in my abdomen.

I am on fluid and diet restrictions and do my best to preserve the sanctity of my body. I wish I could say that I was on the transplant list, it would be good. I am undergoing the full transplant evaluation now, and yes I look in my mailbox every day hoping to see that I have been accepted to the list. I wait less patiently but remain hopeful.

Peace, thanks for listening.

travis

md

TX evaluation