Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 , My condolences regarding your hubby.Sounds like you and I are almost at same time frame.I had my gallbladder taken out in late August '07. That is when I was told to see a specialist. Needless to say and long story short- I have ESLD, Hep C, ascites, muscle wasting etc etc. Until they finally got my diuretics right at end of May (still need a little adjusting), I was getting "drained" every 2 weeks. The first 2 months after gallbladder surgery and being told all this I felt like I was going to die right there and then. Now with antidepressants and a sleep aid, I live apretty normal life again but this is only since end of May. I too have umbilical hernia which was where I had it fixed before with mesh a few years back..but it is back along with a major groin hernia which hurts so bad after sleeping or sitting for a long time or trying to walk a long ways. I was told not to vacuum or to lift anything over 5 pounds .MY body aches were and are my biggest complaint at the moment. They doubled up the dosage of pain pills and it seems to finally take the edge off most of the time. I was told 2 weeks ago in San Francisco at the TP evaluation that I was a great candidate for liver but they want to do the TIPS procedure first. Anyone ever had that done???????????????.Anyways, got to run for now. If anyone has ever had the "TIPS" procedure please let me know more about it. in Nevada Newton in Nevada'Be kinder than necessary because everyone you meet is fighting some kind of battle. Subject: Re: ESLDTo: HepatitisCSupportGroupForDummies Date: Sunday, August 31, 2008, 3:07 PM A dear friend of my husbands passed away last year from HepC. He decided he was going out parting and having a good time. He just couldn't give up the drinking Anyway over a 5 year period we saw him almost every day and it was not until the last month of his life that his kidneys failed and he required dialysis. That's when things got ugly. He lasted 5 weeks on dialysis and them passed away and it was not a nice way to go! I am also ESLD for how long who knows but in August of last year I knew something was wrong. By December I was a mess!! I looked 9 months pregnant and could not get out of bed unassisted, plus I felt like Crappola!!!! Even then I thought it was from menopause and all I needed was some antibiotics and water pills. Once they drained the fluid out of me 10 quarts I again felt fine. Freaking out because now I had a diagnoses but felt fine. Tired all the time but I had been like that for years. My family told me it was old age and time for me to cut back on my 12 hour day as a pharmacy Tech. A very physical and stressful job!!! I was still tired and remain that way all the time now. I am on SSDI so I can sleep when I want which makes it OK. Lots of side effects from the medication to keep the fluid out but my bloodwork STATS have actually improved due to some diet changes and quiting smoking. I do not feel like I am dieing! I really feel fine now that meds have taken hold. I don't know that I could have handled everything so well if I did not have my Lexapro. No one knows how sick I am except close friends and family and even they cannot believe I am ESLD. This will probably change once I start TX in September. I have been working on my "bucket list" and have so far done everything on it except for 2 things which I hope to be able to sneak in in October I eat really well and have used professionals (PhD nutrition) to help me determine what the best diet for me would be. I see her if my bloodwork goes funky and we have tweaked it a couple of times and it always works!!! I exersize mostly water stuff and yoga now. I cook for hubby, do laundry, clean house etc, etc I cannot move fast so it takes me forever to accomplish something and due to my umbilical hernia I cannot life anything heavy. I cannot go out if its really hot and no sunlight till after 2:00pm. All things I can live with and maintain a good quality of life. There are days when I am bed ridden because of fatigue or diarrhea, but other than this stuff I am fine. I also could no way no how work. I do have one very unpleasant side from medication.. .gas. Oh I have days where all I do is fart my brains out!!! I just don't feel comfortable in social situations with gas this bad. So ESLD can be good or bad. If you want to go out worn out and used up partying your brains out...I see nothing wrong with it because we all end up in the same place if Tx doesn't work. Me I am going to fight to keep my quality of life until that is not possible anymore "IF" Tx fails me. > > To those that are considering tx, please re-read what said. I want to > reinforce that. Although tx is a personal choice and everyone is not > medically able to do it, I believe that everyone whose doctor will allow it > should try it. The short term (6 months to 1 year) inconvenience & side > effects of tx is a very small price to pay to avoid the long term effect of > ESLD, which is painful & ugly and horrible for the caretakers as well as the > patient. You can't count on a transplant because there aren't enough livers > to go around and you may not even qualify by the time you need one because > of other medical issues caused by the hep or the liver failure. > > > > > > Suppose you were an idiot. And suppose you were a member of Congress.... > But then I repeat myself. > -Mark Twain > > > > > [HepatitisCSupportG roupForDummies] My TX Bio - > > > > > . > > I pray all that are on tx now are able to clear the virus successfully. To > those that are considering tx be sure to listen to those that have had > complications as a result of Hep C and those that are in End Stage Liver > Disease (ESLD) as you are making your decision. This is a serious illness > and should be taken seriously. > > > > All the best to everyone, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Hi, I also am in ESLD & mine is different from . I do not (as yet) have varices or ascites. I do have severe edema, portal hypertension & gallstones. I also have encephalopathy, splenomegaly, diabetes & I'm losing my hair! My only meds are diuretics for the edema, Lactulose for the encephalopathy & insulin for the diabetes because the oral diabetes meds are not liver friendly. Sometimes I can't sit for long because my feet & legs swell so badly(edema). I can't be sure from day to day whether or not I'll remember appointments or even what day it is(encephalopathy) I sleep a lot but only in 2 or 3 hour naps(also encepahlopathy) Finally, I have no energy - I have gone for weeks without doing the laundry or bathing. If it wasn't for my weekly home care aidethe dishes would stay dirty & the floor would never get swept. I'm on the transplant list because the doctors can't seem to decide if I have liver cancer or not - they can't biopsy the lump because it's in a place they can't reach!SuZie Subject: Re: ESLDTo: HepatitisCSupportGroupForDummies Date: Sunday, June 28, 2009, 7:23 AM outward symptoms of the disease are muscle wasting. I go to the gym to maintain and build muscle but its been a long hard battle that will continue. I have Ascites which is fluid retention in my belly and a really large gross me out umbilical hernia I wear a hernia belt when my Ascites flares up and I exercise but most times my tummy is flat as a board. I also have varices, portal hypertension, and gall stones. I take no medicine for these issues as they still are not bad enough to treat. I do eat really well and follow a diet that a PhD nutritionist and I worked up that specifically targets my nutritional imbalances from Hep C and complications. Hot dang it really works well. I personally believe that food heals and does a way better job than herbs and especially drugs! I take no medication except Aldactone and Lasix to control my fluid build up which is a constant hassle! I travel, have hobbies, good friends and family and lead a rather normal life. My Service Dog Athena has helped more than anything and she is my constant companion. I work with her every day training her and me for the day I finally crash and burn and if lucky enough will get a transplant. Dragon Slayer Extraordinaire Geno 3, ESLD 54 year of female Married with children & grandchildren > > , Can you share some of your ESLD symptoms? ESLD is something that does not get discussed very much. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.