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168732 tn?1311712079

Been away - liver and kidney transplant in Feb.

Just a quick update to any "old" buddies from the past who were so supportive.  I had cleared the virus in '07, had a couple good years, but last fall two bouts with infections and a very bad fall (massive hematoma) set me into end-stage liver disease.  My cirrhosis was too far along to recover. Had liver and kidney transplants in Feb. at Northwestern in Chicago. Last week I elebrated with all the wonderful surgeons, hepatologists and RN's down at Kovler Clinic as we crossed the 6 month survival mark. So, in the end I was blessed to be listed quickly and get the offer in time. And Northwestern is amazing in every way (they have now performed 1,150 liver transplants).

Very long story "short"; my liver failed quickly and I had only begun the process to get on the list, so my doctors had me transferred to NU and put through the screenings in a few days. My MELD went from 16 to 40 in the 3 weeks I waited for an offer.  The day before the transplant (had 2 other offers that did not fit for me) the surgeon said I was one of the sickest people in the hospital - said to my family as I was full HE unaware of anything.  Another day or so may have been de-listed, so God was on my side, but very close.  Being so sick, hepatorenal syndrome shut down the kidneys and so received both the liver and kidney from same donor. It all this was not enough, my heart rhythm went crazy and I developed bradytachycardia and bought a pacemaker!  Having been so sick, I spent 2 months in the hospital, 6 weeks in-patient rehab next door, but now in the second month of day rehab and have been home IN MY GARDEN!

LFTs and kidney function doing well, though had a couple ERCPs to clear bile duct that set me back also, but docs are optimistic and I struggle day to day to get stronger.  I've been walking again with a cane, but still very weak and de-conditioned, but improving steadily now.  Therapists tell you it is 3 times the hospitalization period to get close to normal, so that would be 9 or 10 months.  I read a great interview with Gregg Allman and he relayed how each day you don't feel any progress, but in the few days and weeks begin to measure recovery.  And I was way sicker than Gregg.

Anyway, next month my favorite niece is getting married and I plan to dance (slow dance) with her new husband at the reception! There were many days my family was unsure I would see that day.

Take care and God bless,

Julia


6 Responses
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789911 tn?1368636783
Hi, I have only been on the forum 2 1/2 years  Just want to send a big hug your way!   So happy for you!   Continue to get stronger everyday!  
Helpful - 0
1717054 tn?1316712653
What a remarkable story.  Thanks for sharing and it's nice to meet you.
Now is your time to start living your life again, with joy, one day at a time.  Prayers for your speedy recovery.
~Debbie~
Helpful - 0
Avatar universal
Thank you for your inspiring story. My best for a long and healthy life.
Helpful - 0
Avatar universal
Thanks so much for sharing your story.
I wish you continued progress.

Good luck,
Mike
Helpful - 0
168732 tn?1311712079
Going back to read my post, it was not meant to be shocking - just to let some of the old forum members who were with me during TX  know what happened. Going through all this has been enlightening in many ways. Mostly how caring and supportive even strangers on the internet can be.

I will make it.  My "advice" to any of you with the virus is do all you can to learn about your options.  I was one who did not know for 20 years, but as soon as you find out you should move very quickly to treat and clear.  I did, but was too far along even though type 2 and cleared in 6 months.  Every day your liver is getting sicker, and my docs (some of the best on earth - literally) have said that had I cleared just a few years sooner I most likely would not have ended up with the transplant.  So, get going and don't wait once you learn.

Again, to my old pals (and thanks for the personal notes this week to me) it has been my blessing to have your guys stand with me these past five years.  

Julia
Helpful - 0
223152 tn?1346978371
gazebo
I dont' remember you but what a wonderful outcome.  Since you cleared the virus in 2007 your new liver should be in good shape once all the healing is done -- at least I think so.  Congratulations on your success
frijole
Helpful - 0
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