My name is Stacie. I have enjoyed reading the discussions and have been able to relate to so much and learn at the same time. I have so many questions and thoughts but I will try to encapsulate them as best I can.
A bit of my history...I am 46 years old, I have cirrhosis of the liver. It is about as advanced as it could be. Plugging in my numbers to the Mayo Clinic's MELD calculator based on blood work from 3/21, my score was 16. At one of my most recent hospital visits, my doctor told me that my condition was "guarded at best" and that I need to move forward with getting on the transplant list.
My disease is due to alcoholism. I found it interesting in someone's discussion earlier that she is only 26 and HATES when people say she was so young to have had a transplant. I feel the same aversion when people feel the need to clarify that their liver disease is NOT because of alcohol but because of another medical condition. Does being an alcoholic make my disease a little more "dirty". I'm not bitter to be honest with you; I just find it interesting.
I have been an alcoholic for most of my adult life. My story is pretty garden variety with the exception of the here and now. I have a very strong genetic predisposition to alcoholism. I started drinking in my teens as kids do. Went off to college and well...college and booze are like PB&J. In my 20s, had a career and my clothes got nicer and my drinks more expensive. I followed all "normal" progressions (whatever that means)...married, bought a house, had my first baby at 27 and my fourth at 31. Yup, four babies in four years. I did not drink during my pregnancies and even after my kids were born, drank far less than prior to having children.
Well, those babies are now 19 (daughter) 16 (twin sons) and 15 (son). My twins and my youngest are only 11 months apart. OOOOPS!!!! I know every parent says this but it is so profoundly true. There is nothing that I love more, respect, admire, cherish, I could go on, than my fantastic four.
Once my kids were a bit more independent, I guess the tween years, I was afforded more freedoms. I also discovered a very lost feeling that I had become antiquated and who would choose a 40 year old over a 25 year old for a position. I was an event planner and it is a very showy. superficial albeit fun business. Depression kicked in. And so did much heavier drinking. There are other factors but we all have crap in our lives and to blame my poor decision making and lifestyle choices are nobody else's fault. Nobody held a gun to my head and forced me to drink Without pride, I do own that.
So here we are. As mentioned I have cirrhosis. I knew people who passed away from cirrhosis but never knew all the "fun" that goes along with it. I knew nothing about ascites until it looked like I was ready to give birth to triplets. Never heard of hepatic encephalopathy until I had it. By the time I was hospitalized, it was so severe that after I started making a turn around I was told that I would have brain damage at best or die. I was hospitalized for two and a half months with no recollection of the first month and the rest a bit fuzzy. I have been hospitalized about a dozen more times since. I have also had the joy of kindey stones, a partially collapsed lung which creates tremendous shortness of breath, and a litany of other things. I have a Pleurx catheter in my chest (because the ascites surrounds my lung as well as going to my belly) so my ascites can be drained at home and now have oxygen in my home as well. With all the little bonus problems, my blood levels fluctuate quite a bit so my meds are fine tuned quite frequently to balance everything out. My personal favorite was drinking liquid potassium. It made lactulose taste like a milk shake.
November 4, 2016 was my last drink and cigarette. It was my five month anniversary yesterday. Yay me!!!! While I have the natural feelings of regret, shame, guilt, etc. that goes along with my version of this disease, I also have a feeling of tremendous pride for making it through. Even if I don't live to see a transplant, I will die knowing that my life was no longer eclipsed and for that, I am grateful beyond words.
So a couple of questions... I understand that you need to be six months sober to be considered for a transplant and, as mentioned, yesterday was only five months. My doctor faxed everything to Mt. Sinai in NYC where, God willing, I will be a viable candidate. I have a call scheduled for tomorrow with a coordinator and am wondering if I should make my initial consultation for after the six month mark.
I have read a great deal about the multitude of tests and meetings with the various sectors of the transplant team but was curious, from initial consultation to receiving a yay or nay for the transplant list, about how long is that process?
About how long is the surgery. I've heard everything from six hours to 20 hours. Also, a lot of people on here were hospitalized way longer than the anticipated week to ten days that I was told and have read.
How long in the ICU as, again, I've heard varying stories. How long until they get you up to walk? How long were you in pain until you no longer felt narcotics were necessary? While I don't intend to be a martyr and suffer unnecessarily, as you all know the drugs are so addictive and that scares me a bit as I do have an addictive nature.
I've dropped about 40 pounds since November and my nutritionist told me I could use a few pounds need to gain weight but on the flip side, I weigh myself daily and if I gain two to three pounds in a day or five over the course of a week, then I should go to the hospital. Obviously I drop weight after being tapped (one liter is equal to just under two pounds) and I eat well. The ascites accumulates so rapidly that I am good for a liter every other day when tapped. It could be more but draining too much is bad for the kidneys. Uggg!!!
I have a million other questions but will start with these. But I have to ask...did anyone see "the light". As long as mine is a bright white one, I'm okay to pay it a visit as long as I return home.
Thank you so much for listening (reading) to my history. I look forward to hearing anyone else's experience and answers to my questions.