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Posted 1/18/2010 3:06 AM (GMT 0)

Mike  I feel for you.  My husband went through EVERYTHING you are going through.  Look back at some of my old posts.  I think at one time they drained 20 liters from him in one week.  That caused horrible cramps.  We would be up all night and all he could do is stand up and try and walk.  I just don't get why the Dr. are telling you they don't know why you are cramping.  Eveyone I have talked to that has liver disease and has to be drained gets cramps.  And thats not all most of them ITCH really bad.  I so sure that would be a good form of torture!!!  One think I remember is Jerry had Albumin before they drained him.  That did help some.  I'm not a nurse (but I should be) but I think Albumin is some kind of protein.  Are you on a transplant list?  Hang it there.  It really help if you can find a Dr. that know what to do.

JoAnn

Posted 1/18/2010 5:59 AM (GMT 0)
Hi Mike and welcome to HealingWell. The diuretics need to be readjusted sometimes as your symptoms change. Your doctors should know this. I can not count the number of times my husband's hepatologist changed my husband's prescriptions. He even changed is lactolose as needed.

It is a hard balancing act with the meds and even the foods that you eat that's for sure. Is your doctor a hepatologist? If so he is used to being bugged and he gets paid big bucks for your care, so don't hesitate to tell him anything that is concerning you.

Take care.........thoughts and prayers......
Posted 1/18/2010 6:23 PM (GMT 0)
Good Afternoon everyone,
I just started with this new doctor at MGH and I know he is against the paracentesis because of infection and the chance of a bowel perforation .The paracentisis was done at the Leahy in Burlington by a nurse practitioner on 11/30/09,she said she took 5 liters,and 2 weeks later on 12/14/09 she took another 5 liters and that time she gave me 4 bottles of albumin after the ascities was withdrawn because they could not find any albumin. The nurse was very good and I got more info from her than my hepatologist over there. She told me my spleen was enlarged and alot of fluid was being retained. I was 245 to 250 lbs.at the end of November. After the 2nd paracentisis I was 224.5 my lowest weight and I still have noticeable fluid in my stomach, legs,kneecaps are large and feet. Neither doctor has talked about a liver transplant, but now I have completed the M.R.I. of the stomach and Upper GI Endoscopy, Liver function blood test. The only thing I have not done is see a shrink or start on psych meds for the depression if I am able to take the cocktail Peginterfueron & Ribavarin. My viral load may be too high at 2,499,000. My doctor at the Leahy wrote in my medical records that the cocktail might not even help me due to the viral load, but she was trying to sell me on it from the 1st time I saw her 08/31/09. She said something about a 3rd drug you take while you are on the cocktail that is still on the shelf but she can get it for me. She was not up front with me about the viral load and I asked her about if I should be on a transplant list and she said, Not Now. In November I made the decision to get another opinion and go to th MGH. So far I been listening and following his directions until 01/28/10 I see him for a follow-up and Wednesday an ultrasound at the Danvers,MGH.
Posted 1/18/2010 6:50 PM (GMT 0)

Mike, from what has been done so far at MGH, it looks like they are evaluating you for transplant--to find out if you would qualify or how to treat you.  The 3rd drug being added to the combo of interferon and ribavirin is telaprevir, an antivirtal.  The new treatment is in final trials now and they will be looking to see who benefits from it most.  It will be widely available in about a year. 

At your follow-up at MGH, I would directly ask the doctor what the plan is for your ascites and edema; if they are heading towards listing you for transplant, and whether you are a candidate for the new treatment (the trio.)  Write those questions down, along with any others you might have, and take them with you.

Hugs,

Connie

Posted 1/19/2010 2:21 AM (GMT 0)
Hi. I am new here and a little nervous, not only have i nevere been in a chat room , i'm really bad at typing.

Iam 51 yrs old and have been diagnosed with esld. On Jan,1,2009 my life changed for ever. I knew I was sick,but my doctor shrugged of my complaints of pain in my middle back, right side swelling and vision problems. I was self employeed with my husband and blamed alot on stress and lack of sleep. My dr blamed it on my moderate drinking( 2-3) a nite for a number of years. Iended up in the ER in unbearable pain, jaundice and almost in a coma. It took a week to stabliize my blood and asisties. My meld score was 18 and I was put on a transplant list and given my options as to what to do with remaining 5 years I have left. The Mayo dr. says that with so many people needing livers,moderate drinkers like me rarely get a liver without completeing aa and physocological test, etc.I have not had a drink since and don't mind aa, have been told they pretty much thro people like me under the bus. Iam pretty sure that I'm not interested in a transplant anyway. I'm down to 80lbs. and can't seem to gain any weight. The muscle loss is unreal and being a business woman in town, public appearances are not my favorite thigs to do . My husband and kids are my rock. It pains me thatthey have to see what is happenig to me. Maybe if it could have been found sooner .............

Anyway I am lost and feel alone even with the support I get from my loved ones. Can anyone one guide me thru this?
Posted 1/19/2010 2:29 AM (GMT 0)

Mike, I am glad you went with another place for another opinion. I know Leahy well and they have a good reputation but Doug and I always felt left out of the loop and never got straight answers from them. I know most of the Drs trained at BI and MGH but I think they lost something in translation..... they were horrible for returning calls even frantic calls. Doug took a big risk and was so discouraged he ended out suspended from the transplant list while setting things up to go to BI. The program there had been suspended for a few years to restructure and revamp the entire program. So he went a year just seeing the hepatologist at BI till the transplant team started back up. It scared me him not being on the list, he just couldnt tolerate the way they treated patients at leahy after traveling all those hours. Hindsight he was right. Our transplant coordinator was the best and always returned calls same day......whether nights or weekends. Like Connie said make a list of questions dont let anyone leave the room till answered, always remember you are your only patient so you come first!

Also do you have a Handicapt placard? Free street parking at a meter in boston with placard! Your Dr can do paperwork if u dont have one....

What insurance do you have, you would be surprised what you are eligable for.

Sue

Posted 1/19/2010 2:30 AM (GMT 0)

SDgrandma, I have taken the liberty of copying your post to a New Topic, so that all here might see it.  When a new member joins, it's best to start a new topic or you can fall through the cracks on someone else's thread.

You said you HAVE been put on a transplant list?  This is something you should consider, if you want to save your life.  If you go to AA, it has to be documented for 6 mos.  I have been sober as a result of AA for 23 1/2 yrs.  They will not "throw you under the bus."  In fact, you don't have to say a word if you don't want to.  I also go to Mayo and they saved my life.  So I can only suggest that you learn as much as you can and do what the doctors tell you to.  Read the educational info in the Hepatitis Resources folder at the top of the page, and also some of the older posts.

Have you seen a dietician yet?  If not, request a meeting with one.  Diet is very important to a liver patient.

We are here for you.

Hugs,

Connie

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