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New Member Seeking Advice

Hi, everyone.

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.

Stacie

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Replies

  • Hi Stacie,
    Congratulations on 5 months of sobriety. Stay strong! I am 18 and approaching my 1 year liver transplant anniversary! I had a preemptive transplant, meaning that my liver was severely damaged because of an autoimmune disease, yet I had little to no symptoms. My transplant was a complete surprise because I got the call two days after I graduated from high school. I had some complications with my transplant and I needed a new liver immediately after I came out of the O.R. I ended up as a status 1A and got my second liver transplant 6 days after the first. Thank God. I was in ICU for three weeks because I had to monitored as I had complications. I was on Morphine, Dilaudid (highly addictive), and on Oxy for a short time. The pain isn't too bad because all of your nerves have been severed, however it's not the best feeling in the world. I would describe it as period cramps times 10 or maybe a whole bunch of paper cuts (maybe that's just me). I think the main cause of my pain was in my back. My surgeon said it was because I had spent so much time on the operating table and in a hospital bed and I still have back issues because of it. I took dilaudid for up to 4 weeks after my second transplant and then I made my mom get rid of them because I could tell that I was depending on the dilaudid too much. If possible, I would try to stay away from it (dilaudid) as much as possible. After my second transplant and the reconnection of my bile ducts, I was up almost immediately. I was so weak from inactivity, however, that it took me a bit longer than other transplant recipients. Anyway, they usually want to get you up as soon as possible. It feels weird to not be able to walk but I gained my strength back and now I'm in college going for nursing! I wish you the best! God bless.
  • Hi Stacy _ hang in there. It's important that you maintain your sobriety and as importantly, that the docs feel that you re going to do so. There are more people wanting livers than there are livers. You must be your own advocate, don't wait for them to offer. Watch your diet, no salt and limit fluids to try to keep the swelling down. There are essential no narcotics involved after surgery. Your biggest drug issue will be side effects from prednizone. I was an addict, and I never thought someone "like me" could get a liver. It's been 12 years 

  • Hi Stacie, my husband Willie already replied but I would like to add something. Willie was 37 days in ICU. (30.03.2015 - 05.05.2015). We always speak about Willie was a healthy man "hardly ever drunk alcohol and never smoked". We had the miss concept that "liver failure is alcohol related". How wrong we were. We try to set the record strait by telling Willie's story and add that "liver failure" can happen to anybody. You are open about your "alcoholism". Do not allow anybody and even yourself to make you feel "dirty". All of us have something that we would wish never happened. You are better than most. Being honest and open is more than most people are. You have a better change to overcome because you face your problem with honesty. We pray that you will get on the list soon and that you too will receive a second change in live.

  • Hi Stacie,

    You are welcome to contact me for any questions. Today is two years after my second liver transplant. The liver is the biggest organ and therefore it is a big operation. It is also a bloody operation. I received 22 pints of blood and 14 pints of blood plasma in my first transplant. The operation was just under 9 hours. I was in a induced coma till after my second transplant. I had 4 operations in 30hrs. I can tell you more later. I do not remember how long I was in ICU. I went home just over a month after my transplant. I had to learn to eat, to walk etc.

    I went several times back to hospital after my transplant. Two weeks after I came home I developed trombose in my right leg. I went back several times because of possible rejection. I came across other transplant patients as well during my hospital times. Two of them returned to hospital much more times than me, all because of possible organ rejection. 

    When you have a liver transplant you will go on medication to suppress your immune system because the body does not know your new organ and wants to reject it. Different medication works different in people. Mine is now stabilized and remained the same for about 10 months now. You will need to take this medication in the mornings and evenings. You will also required to go for regular blood tests so that they can monitor all the parameters. This medication have some affects. One of then is trombose. 

    I enjoy now great and excellent health.......even better than before the transplant.

  • First welcome, sobriety is your first hurdle and congrats on 5 months.

    My surgery was 8 hours and I spent 1 1/2 days in the ICU. Those hours and days are dependent on how well your are and if there are not complications after the surgery.

    As for weight I gain weight very rapidly in the beginning 40 lbs in two weeks before i went to the doctor, that's when I found out I was sick. So watching the weight helps them know if something else is going on.
    You can ask but I'm thinking that 1 or 2 lbs they saying is each day continuously. So fluctuations are normal but do watch that.
    I had cirrhosis (non-alcoholic) for a little while nothing going on then the weight gain that's when the found HCC. So there are methods to their madness.
    I hope I wasn't to confusing. Good luck!
  • My liver TX was in 2013.  I'll try to answer some of your questions based on my experience, but realize that everybody's experience is different.

    My MELD at TX was 31.  Had to be 25 to even get on the list at my hospital.

    Surgery lasted 8-hours.

    ICU was 2-days for me, but most are only 1-day.  My BP was horibbly low and they wanted to monitor me closely.

    Up and walking by about day 4.  But that was only about 2 steps from the bed to the wall and back with two nurses holding me to avoid a fall!  Really walking pretty good by day 5 or so around the floor and by day 7 I was walking around the hospital with my wife.  Even got to sit outside for an hour at a time by day 8 or 9.  

    I was out of the hospital and in an apartmeny on day 14.  Thank God for that.  I was going crazy in that hospital room.

    Never had any pain.  Never took anything for pain.  I find that amazing, but that's how it was.

    When the liver is failing, your body will begin to consume mussle.  I lost 30 lbs in the weeks before my TX.  Water gain is from the kidneys not doing well.  Failing liver affects the kidneys.  My ankles and legs swole up before TX.  After TX I was dialysis for 2 days and then over a few weeks the kidneys got much better.  

    DIdn't see any lights.  It was "lights out" and then I woke up to 2 crummy days in the ICU.  

    Blessing and be Well!

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