@johnshaw – My liver disease was originally diagnosed at UPenn, the hepatologist was Karen Krok (now at Penn State Health.) I lived in Central NJ at the time and was very pleased with the treatment. I moved to Tucson in 2011.
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What do I wish I had known ahead of time?
-While I was in the hospital, they weighed me each day and I couldn't believe that I was gaining weight (up 15 lbs from when I was admitted), especially as I was eating very little. I probably spent way too much time worrying about it instead of resting. The nurses tried to reassure me that it was water and would go away, which of course it did.
-I never realized the connection between the liver and kidney – that I could have kidney problems post surgery. When my GFR went to 20 they were talking about the possibility of dialysis but it did start moving back up. It's still low and I am concerned but they are monitoring it.
-We were under the impression that once released from the hospital we would need to be in the area for another 4-6 weeks. Turned out including the hospital stay, we were away from our Tucson home for 1-month. Don't get me wrong, I was thrilled to get back home and I am glad we chose to stay at the Residence Inn on the Mayo campus. If we had done a short-term apartment rental, we would have paid for at least a 2-month stay and paid out more money – the hotel was on a day-by-day basis.
@contentandwell – The family of the donor had already agreed to the donation, but wanted to gather for a final goodbye. Life support was supposed to turned off at Noon AZ time, but I think it was delayed based on the surgery time change. They told me that the donor was male and 40 yrs of age, so I joke that I have a younger man in my life (I'm 57 yrs old)! My glucose went high with the Prednisone I am taking, but my diet was unrestricted. Hate having to use insulin again, but I'm on the Prednisone taper and things are getting better.
My scar is only 18" but the staples were pretty close together. When I was healthy I used to create kiln-formed glass art so I hope to use some glass pieces to surround the staples which I will lay out in a path – symbolizing the journey from health to illness to health. Still not able to focus enough to work with glass,but I'm in no rush.
Today it's 2 months post-transplant – time flies when you are having fun! I'm still on the weekly blood test and monthly liver ultrasound regimen. The liver has shown improvement in function but blood tests have remained mostly the same, continuing the anemia and kidney issues.
I received the call at 5:15 AM on December 28. The offer was a high risk liver – cardiac death donor who was Hep-C and Epstein Barr positive (I was negative on both.) We arrived at Mayo at 9:30 AM to begin prep. They hoped to do the surgery at 3:00 pm but the donor's family had not yet authorized the removal of life support system – I know that had to be an emotional time for all of them. Folks have wondered how you might be in a situation where you got the call and had to go back home. This was a situation where that could have happened but thankfully the dominoes fell into place. Surgery began around 6:00 PM and ended around 11:30 PM. My husband is keeping the text sent from the OR that said "old liver out, new one going in". Until after I saw the surgical report, I never knew that I did not have a gall bladder anymore – I somehow missed that in all my reading. The pathology report was interesting – I had a liver biopsy 11 years ago at UPenn (I was living in NJ at the time) that showed Sarcoidosis in the liver but upon review post-surgery I had nodular regenerative hyperplasia and not cirrhosis with no Sarcoidosis present. They assured me that the liver transplant was needed – my liver was toast. The disease has the same symptoms as cirrhosis – portal hypertension and esophageal varices. Dr. Aqel showed me a picture of my old liver – it looked like bad meat – as well as a picture they took after the new liver went in, which was cool. It is probably the only time you can see what the inside of your body looks like.
I woke up the day after surgery around Noon in ICU – my husband said I struggled a bit earlier when they removed the breathing tube, but thankfully I remember none of it. That afternoon they had me up and walking and I was sent to a step down room early the next morning. I was doing so well that they contemplating sending me home after 4 days, but that morning's blood work showed a sudden decrease in the kidney function that kept me at the hospital for 11 days. I roamed the hallways around the nurse's station a few times each day, which helped me keep sane! Food smells and taste were a problem, so they let my husband bring in food from the outside after one of my surgeons said it was OK – I never ate hospital food after day 2. When I was at the Liver Support Group meeting in Phoenix, I told that story and one of the prior liver recipients commented that they wish they had my doctor! Surgical staples – I had 70 – were removed after 3.5 weeks. I wanted to keep the staples as I plan to include them in an art project when I feel better. After hospital discharge, we stayed at the Residence Inn on the Mayo campus for about 2-3 weeks until I was discharged from the clinic.
Just to make things interesting, my medical coverage changed on January 1 – not my choice as the provider moved everyone to the new plan. When I checked in, I gave them the cards for my then insurance plan as well as the one that would start on the 1st and let them handle it. It caused some confusion with early prescriptions but that resolved eventually. Medicine changes have happened regularly since, keeping hubby on his toes as he prepares my meds. On a positive note, after 1 month of treatment, the HEP-C virus I acquired via the liver transplant is now undetected in my system. I still have 2 more months of treatment followed by 3 more months of testing before they will consider me cured, but I can handle that. I am blessed to have good insurance – the monthly wholesale price of the HEP-C medicine is $13,000 (I only paid $150). We need a better heath care system.
I know I am one of the lucky ones who got a liver transplant – many are not eligible or die while waiting. I am grateful for the care I received from my Tucson GI doctor, Cristiana Bortuzzo, over the past 8 years keeping me healthy and the Mayo team over the last 2 years while on the transplant list. I wish that everyone who has a serious health issue could be cared for at a place like Mayo.
If anyone awaiting liver transplant has any questions, I'll be happy to try and answer them from my perspective.
@gaylea1 I think all of us on here empathize with the waiting.There are definitely days I can't get out of my own way. I had weaned off the low dose Lexapro I was taking last year, but I found I needed it to help get by. I've been dealing with Sarcoidosis and its side effects for 10 years and I try to do what I can do. My passion is kiln-formed glass art – and until about 2 years ago, I would go the local studio 2-3 times a week. Now, with my own kiln at home, I still can't get myself motivated. Knowing that there are others in worse shape than I am is what keeps me feeling grateful.