O.K, Done with Mothers day and back.
I'm normally dark skinned but my bilirubin levels were way up. My eyes showed it best. Yellow, Not white. I never ate properly because drinking and quickie meals was a necessity in the later days. That worsened my condition. I was 40 at the time and weighed about
210 lbs. @ 6 ft. a overall healthy appearance to anybody. Internally I was a time bomb. Three months came and went and I got much sicker. HE and Ascites became the prevalent issues along with malnutrition. My stomach was getting full of ascites, I had to get paracentesis done once a month because diuretics had minimal effects.
We set up a appointment at UNC Chapel Hill to see a Hepatologist. They went through my records and sat me down and discussed what might happen if I did or didn't join the program and transplant. I knew nothing about
liver disease and had read about
Hep.C online after I was diagnosed. Grim looking stuff with minimal chance of life. I asked Doc "How long do people live with Hep.C before they die basically". He looked puzzled and picked up my reports again and said "You don't have Hep.C. Who told you that?". My internal medicine doctor sighted the cause of lab reports to be Hep.C related. The G.I at the first hospital didn't dispute or look into it further and took the internal doctors word on it. The second GI at the following hospital did know it was not Hep.C related but failed to mention it to me or my family.
The hepatologist explained what the requirements were to be listed and said I would be a candidate if alcohol wasn't a factor. MELD score was 26 and you are actively listed at 23 there. I was 28 when I was brought into ER months before. That started my journey officially into sobriety although I hadn't drank since originally being admitted. No documentation, no potential transplant. Spanked my butt and sent me on my way "See you in 6 months and call if you need us".
Fluid issues increased in severity. HE was horrible and the cramping continued in fingers and joints. I eventually over the course of the next few months was getting paracentesis done 2 times a month and dropped weight to 145 lbs. after each procedure. They removed 10 to 12 liters of ascites each time. I had to continue going to addiction therapy appointments 2 times a week ( As per UNC) and keep up with local GI all the while. Paracentesis was done at hospital in outpatient services. I was exhausted, weak thought I couldn't make it. I went back to UNC after 2 months to discuss ascites issues and they reviewed my charts again. I missed 2 Therapy appointments in 2 months. Doc said "Why?" Soon as I began to speak he said you realize you'll have to start therapy over (6 months). Two months, Wasted because I didn't reschedule therapy while getting paracentesis done.
Wanted to quit the program and die but didn't utter a word. No job, No money, Bills piling up and little prospect of living or having a life beyond hospital doors. Wife, I did get married by the way during all this insanity. Might be a legal defense some day
. I'm laughing now but wasn't funny at all then. Fast forward to 6 months later. I had already applied for disability early on and company let me keep group insurance policy as long as I paid it myself. Now getting Paracentesis done 2 times a week at 7-9 liters a week. Diuretics still not working and UNC had put me on something called Xifaxin for HE, to be taken with lactulose. A hernia in my belly button was getting worse. It was filling up with fluid and had gotten enormous. My intestine one afternoon decided to go into a hernia in my belly button and swelled to golf ball size. ER surgery had to be done to prevent rupture of intestine.
Got out of surgery and went to UNC where they gave me the option of TIPS now that sobriety documentation had been complete. TIPS is basically a shunt that allows fluid to bypass the damaged area of my liver that created the build up of fluid in abdomen. Potentially no more diuretics and paracentesis. I just pass the bad stuff out as normal waste. Down side being possibility of increased HE, Dying from complications of surgery and likely a shortened life span. Well, Being alive wasn't wonderful at the moment and the thought of death didn't and doesn't bother me as bad as it did in healthier days. I accepted and signed my name.
Although I finished sobriety leg of pre-transplant I still had to get a clean bill of health to be listed. That means a thorough exam. They flip you inside out and look for any reason you may be a risk in transplant surgery. If something is found, they repair it and you move on. I couldn't pass the exam without going through TIPS and I knew it. Hell, I had trouble walking 20 ft much less a stress test. My MELD was around 18 but I was still sicker than I was at 26. TIPS was done 2 weeks later. I didn't die needless to say, I still have HE problems although not severe as before, but take Xifaxin and Lactulose. Vitamin C and Dietary supplement along with eating healthy low or no sodium meals. As far as the shortened life span is concerned (Doc said "TIPS is about
quality of life not quantity"), I'm not excluded from transplant when the TIPS goes bad. In fact, it makes me higher on the list (MELD).
I'm currently fluctuating in MELD and it is between 7-10 of late. I'm non active for transplant due to repeated low MELD. I tire easily and can't drive long distances by myself, I remain active without overdoing it. I found my limits and don't push it. You don't notice but it takes me forever to reply on the forum. I never was a typist but still have to think and type slow, erase and edit (HE). Still comes out a mess sometimes. Such is life at this point. I find repetition is where I function best so contrary to how lengthy some of the writing/posting gets I keep things simple in normal life. I know there is stuff I left out but we have time at least today anyhow right? Got a question don't hesitate to ask.
" Never try to teach a pig to sing , It wastes your time and annoys the pig . "