New Member-my story -long winded

Good Afternoon,

         My name is Mike, a 50 year old male with a history of alcohol abuse and was diagnosed with Hep C in early 90's. This past July my PCP had been after me to see a lliver specialist for 2 years. Due to an insurance change and a death in the family, I had cancelled twice. Last April 2009, I saw a Gastroentologist/Liver Specialist to schedule a colonoscomy requested by my PCP because I had turned 50 years old. I told the doctor when I ate rich foods or during holidays when we tend to eat more than usual that I would experience a dull constant ache on my right side, a bloating feeling that was very uncomfotable, but after a night of sleep it would pass. This only happened a few times a year. So, he set me up for an ultrasound and they found gallstones. For the last 5 years, I thought it was my liver and the Hep C?  He told me I should have the the gall bladder removed before it caused alot of serious complication because of the Hep C. He  also told me the gallstones were caused form the Hep C and through the liver function blood test he thinks I have cirrhosis of the liver, but can"t be sure without a biopsy for a liver. He sent me to a surgeon to have a biopsy and remove my gall bladder. They both told me it was a routine operation and there will be no problems. I would be up in a few days, and in a month, I would feel like myself again. Also, I would be able to eat what ever I wanted with no discomfort. I asked the surgeon if he conferred with the liver specialist and read my medical records concerning my Hep C and possible Cirrhosis of the liver. He assured me he did and like a dummy I signed off on it. My first big mistake! It seemed he could of cared less if I had or not. I had been asymptematic with HEP C and cirrhosis up to that day.

          In July 2009, I had my gall bladder and a liver biopsy was done at 12:00 noon. I discharged myself at 7:30 P.M. that same night a few days later. 3 days later ascities started leaking from my incisions Which were stitched up. A week later I had edema in my stomach,legs ankles,feet and scrotum area was so large it scared me! The liver specialist prescribed 50 mg spironolactone which did not help and hit me with the low sodium diet, 4 days later he prescribed 40mg of furosemide and i took both for 14 days. The 40 mg of furosemide worked like a miracle drug cleared the scrotum area in 2 days and after 14 days still had small amount of fluid in stomach, ankles, feet and legs but only slightly noticeable. The doctor checked my electrolytes 2 times and everything was fine potassium, sodium etc. and let me know that the biopsy confirmed cirrhosis and a low sodium diet would have to be followed for the rest of my life. Both him and the surgeon which I had follow-ups with said they did not know this could of happened. I was pissed off. On top of that the liver specialist said he did not think he had adequate services for me, so he was transferring me to another hospital and Liver Transplant/Hepatologist.

       I went to the new specialist in August 2009 and at that time the fluid retention started a little and was noticeable in the ankles. She told me I was Hep C genotype 1A with cirrhosis with a high viral load 2,499,000 and recommended the cocktail, interfueron with ribavarin, but she needed an M.R.I. of the stomach, an Upper GI Endoscopy to check for esophageal bleeding and varices, an ultrasound and an appointment with a psychiatrist for anti depressant medication to lift my spirits before the cocktail. I informed her and the 1st liver specialist that in 2000 or 2001 I tried the cocktail but stopped after 6 to 8 weeks because of the side effects. Mainly nueropathy in the feet and I wasn't sure back then why I decided to take it other than I just did not want it. I was asymptomatic, clean and sober for 3 years and had a plan. Had the insurance that payed for everything, attended night school and money saved and was in a lot better shape from working out at the gym than I am now at 50! Regardless they gave me the medication without a liver biopsy. I had the hardest time after stopping the medication. Could not sleep for days, very hard on the body, felt like some one beat me up. So, I had the M.R.I. done in October, but before that in late September she called in 40mg of Furosemide because of fluid retention. I took that through Sept. & Oct. stopping for a week as requested by the doctor when fluid resided. Thought I was getting better. I was active at the time walking a couple of miles a few days a week and probably started to eat a few takeout pizza's which I probably should not have. In the 1st week of November, I started to retain alot of ascities in my stomach, legs ankles and feet. Also, I started to experience cramping in my hands, fingers, feet, calves, ankles and toes. The doctor said she did not know what caused the cramping it just part of the disease. She upped my dose late november 40 mg Furosemide And 100mg Spiironolactone and the cramps once a week were unbearable lasting for 12-16 hours. All I can do is stand up, I get exhausted cramping everywhere in the hips and thighs. I tweaked the medication myself over the months according to my weight. i called her again and she told me to lower the dose which I anticapated and agreed to see me in the offic, because since August everything was done over the phone. She saw me and saw how much fluid I retained and and scheduled an ultrasound and paracentisis on nov 30th. Followed up on 12/14/09 with another paracentisis. I was around 250, now I am 230.They took 5 liters of ascities each time. I am alot more comfortable but now with the fluid retention she can not do the Upper GI Endoscopy. So, I got another opinion and went to see a liver specialist at Mass General In Boston. This doctor said he could do the endoscopy tommorrow morning i am scheduled for. I told him this has been going on for the last 6 months since my gall bladder operation. I just want to know my options. I have ascities, discoloration in the lower legs, especially in the ankles and feet which are nunb and cold at times. I have pain in my legs when walking,so excercise has been limited. Trying to stick to low-sodium diet, but lost a lot of muscle mass in chest , shoulders,neck,face and it was hard showing my face at Christmas. My mother was horrified because Easter was the last time I saw her. I live with my girlfreind and she has been a great help. Without her I do not know where I would be.

Bostonmike, You're at the right place. Prior to receiving a liver transplant, I went through most of the same things you did. It sucks, but in the end it all worked out beautifully. In my case I went through almost a week of testing to get on the transplant list. Colonoscopy and endoscopy (at the same time), talk to a shrink, social worker, transplant coordinator (Susan Noska, the best) surgeon (Dr. Hertl, a great guy and doc), heart workup, liver biopsy, prostate exam, and the worst thing was an arterial blood take. Nothing was much fun, though the alternative is worse. I have learned to live by that credo and it has helped me get by all of these travails. My hepatologist was Dr. Pratt and his PA was Abigail Mithofer. She was my primary contact and I will never be able to thank her sufficiently. She was brutally honest with me and always replied by phone or email when I needed guidance. There were times when I forgot things she'd told me, due to my not listening or wanting to hear what I wanted to. I was in the program for almost 5 years and wasn't sick enough (MELD score below 18) until days before my transplant when it jumped to 24. I was on my way to MGH for a seminar when Susan Noska called me with a liver transplant offer. I still have the message on my phone and listen to it every few weeks. Obviously, it changed my life. My transplant took place in late July and I was released from MGH, 10 days later. Eleven days after that my meds were squared away and I came home. Since then, I've been back twice and all is well. Many people say that someone was looking out for me, and I agree...the nurses and doctors were doing exactly that. Stay well, and feel free to contact me any time. I'd be happy to help. hep 93, Connie is another of my "angels." Listen to her, she's solid. **David**

BostonMike, thanks for bringing us up to date.  I also had to juggle my diuretics a lot in the beginning.  Now, I'm weaning off of them.  I feel that you are in a great place for treatment and will be well cared for.

Hugs,

Connie

Mike my hubby went to Beth Isreal Deconess I loved them over there but I know Mass General was tops two. We were referred to both places and chose B I because of a specific Dr who was running the program at the time. So Mike I think you made a good choice also! Doug had the same issue with the cramping and it took alot of juggling meds I would have to go through some old notes to remember what worked but it wouldnt matter cause each person is different. I do know after Doug had his gallbladder removed, he was not symptomatic he had porcelan gallbladder, the anesthesia and pain meds did effect his liver function and fluid retention which started the changing of diuretics. His surgery was the oldfashioned way... major surgery and week in hospital. I do know his cramping lessoned alot when we got creative in replacing the protiens he could no longer get from meat products which does effect muscle mass as part of the decreased muscle or wasting as it is called also causes cramping. It is a balancing act......you have a great team in Boston. I know dougs Dr's spoke highly of them. Stay in touch
Sue

Sue, A journal or personal medical history is a good idea. Since my gall bladder surgery on 07/09/09, I should have wrote down everything that happened up till now. I jot little things down about cramping days, my weight, & med changes in a new 2010 calendar since 12/01/09. I am trying to eat a good portion of protein everday, sometimes 2x a day. Lean steak once a week. A ton of skinless, boneless chicken, pasta, fresh salad, fruit & fresh vegetables. I want to bulk up my upper body because I lost it big time in the shoulders, arms, triceps & biceps,neck and face area. I am starting to eat fresh fish from a fish store in Gloucester, not supermarket fish, twice a week sword fish & haddock with small or medium baked potato and fresh veggie, salad for some magnesium. The appetite is still good, knock on wood! My potassium has been good but my doctor called me yesterday. He wants to change my meds to Tamtrene 100 mg.instead of Spironolactone 50 mg. with the 40mg of furosemide i have been taking. Also, to purchase an OTC Magnesium Oxide 400 mg. to go with the new meds. I think my magnesium is low, which can cause cramping. Hope this solves the problem and gets rid of the fluid retention. Not enough sodium being passed out of my body He said.

Isn't swordfish one of the fish that's warned against due to high levels of mercury?   It's good that you are eating fish, though.  Poultry is also good.  Stay away from red meat.  Also, ask for a meeting with a nutritionist when you return to MGH.  Some people need to watch their intake of protein, due to the liver's inability to break it down.  Remember that beans are also a good source of protein, as are eggs and low-fat cheeses.

Mike, next time you go to MGH for followup with your doc, ask that your medical records (including labs and scans)  from there be sent to you after every visit.   My hep doc at Mayo does this automatically.  However, other doctors haven't and I've had to request copies from Medical Records at $2.00 a page.  That can really add up, especially if you have a hospitalization.

Hugs,

Connie

Mike, in the future ask the doctor at the end of the visit to send you recent labs and scans.  If he/she is agreeable, this can save you a little money and hassle.  Be sure to follow up on the nutritionist, too.  I think you are doing really well, thus far, though, in being proactive with your health.

Hugs,

Connie

Just a reminder about the protein.  Its much better if you stick to soy protein because of amonia problems.  I would make my husband smoothies with soy protein.  That helped a lot.

JoAnn

Bostonmike  We found the liver specialist do not check your blood ammonia as a rule.  They just go by how you act.  BUT our gastrointerologist would check it frequently.  Jerry said he could tell sometimes when his got high but then if he got to the point of no return he didn't care. Once I caught him headed out side with a butter knife to trim the trees.  We just learned to stay away from the animal based protein.  As my daughter would say if it has a MaMa its the wrong kind of protein!!

JoAnn

My ammonia level used to be checked every 3 months when I was on the transplant list. You'll know it, because the blood sample has to be put on ice immediately. They used to come into the room with a cup of ice and the last tube of the draw was placed in the cup. That's how they would calculate the amount of lactulose and xifaxin for me to take. As to red meat...my dietitian, who's lovely, but a drill sergeant when it comes to what I should eat allows me beef. She said a piece the size of a deck of cards (about 4 ounces) once a week is fine. The steak you're eating, sirloin and ribeye are fattier than many others. Try flank, top round and skirt steak, as they're more lean. Mostly I eat chicken, fish, or shellfish. The latter two items are easily available for me to harvest or at this time of year, buy or barter for. **David**

Mike, all my Doctors told me to stay away from red meat and shell fish. I use ground turkey or pork for burgers,chili,meat balls,ect. My family is so use to it that they tell me not to use beef for them. Shell fish wasn't a problem since I'm allergic to it,allthough I use to love it.

Let me know how the juicer works. I make alot of smoothies with yogurt ,frozen fruit and alittlle V8 light  fruit juice. Since I'm diabetic the juicer would probably be better for me.

Take care,

Dee Dee

Hello All,
I am trying to substitute a meal by using the juicer. This afternoon used 1 cucumber, 4 medium carrots, an orange,lemon,grapefruit, and pineapple out of a can with juice drained. You only get a couple of 6 OZ. glasses, but it is filling. Yesterday my appetite was'nt that good. My doctor was suupposed to call me back with a change in the medication, Tamtrene and OTC magnesium oxide pills 400 mg. My pharmacist said they would not fill it for some odd reason and I called him to let him know. I am hoping to hear from him this week. Yesterday, seemed like one of those fluid retention days. Feet were swollen, kneecaps swelled, legs hurt when walking and had troube bending my legs and numbness of toes. Also, some cramping in feet, toes and fingers. Stomach is getting bigger and gained 2 to 3.5 LBS. in the last couple of days. I am on 40mg of Furosemide & 50mg. Spironolactone and it just seems to maintain the fluid retention. A few months ago It would take the fluid away, because I would stop the medication for a week a couple of times. Since my last paracentisis 12/14/09 for a month i gained like 4 to 5 lbs and in the last 4 or 5 days I gained 3.5 lbs. After the para 224.5 lbs and today around 233 lbs. I still have alot of fluis weight and should be lighter. Every time they upped my dose to 100 mg. Spironolactone after a week I got unbelievable cramping. My last 2 doctors do not think it is the meds, but a shifting of the ascities in my body that causes the cramping. I told him the spiro does not do anything to get rid of the fluid. My first doctor prescibed it alone and it did not do anything. The Furosemide worked great when i first took it. I knoow together they do work, but there just not doing the job in the last 2 months like they were a few months ago.
I hate to complain and bug my doctor about the meds and there are alot of people on this website that have bigger problems than I have. It seems like you have a few good days and think you are on your way to getting better and then all of sudden you have a bad couple of hours or a bad day and you say to yourself anything can happen with this diseease.

Mike, I am so sorry you are having a hard time with the fluid and cramps. The Mag Ox will help the other prescription may not be filled cause of insurance, that seems to be the biggest issue with meds. Although sometimes they will not fill without more info cause of conflict with other meds or medical issues and the Dr will have to speak to pharmacy. We ran into that a few times..... they want to be excused from responsibility. I know there were times Doug would be on 100 spironolactone and up to 120 of furosimide after they blocked his shunt. I so feel for you having a rough time. Whenever I see these post for everyone I just feel so sad that I cant help more. I dont have these issues but I so remember what my sweetie went through and I feel that same frustration not being able to make it easier for everyone.

Sue