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Primary Sclerosing Cholangitis (PSC) - Online Support Group

New transplant

Hi,.all. I wanted to share that I received a new liver 11/29-30/2018 My MELD had spiked to 38 and I got lucky. Things are going great so far.

Not sure if it’s appropriate, but thought that some might be interested in an incision picture.

:peace_symbol::muscle: Doug

Doug,
Congratulations!!! You look great. So glad all went well. I’m sure by now they have you up and on your feet. What a wonderful gift of life you have received. It’s amazing the different types of incisions they can make to remove a liver. Each have a character of their own.
Speedy recovery to you!

Mark

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God bless you

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Your incision looks wonderful! Fingers crossed for continued good healing. You look great.

azurelle

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Thank you! Just step by step now.

The surgeons did a great job with the incision. The vertical cut was done over a existing scar from operation done 40 years ago.

:peace_symbol: Doug

Hey there, Doug. Welcome to the club (and we all have photos of our incisions). :grin::grin::grin: Be patient with yourself. You will get better each day, week, month. Just celebrate being alive and give someone you love a hug.

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Thank you, Paul! Great advice. So far, lots of hugs.

I wish you continued health.
Doug

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Congratulations! I’m glad you have this behind you. Now. Onward and upward!

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Wow Doug. Congratulations. Thank you for sharing your progress and photo. That is quite a zipper! Keep us posted on how you are feeling. Blessings to you.
Mark in St. Louis…

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Thank you so much. Yes, onwards and upwards. :rocket:

Yes. It is quite a zipper! Looks pretty good all in all. Both drains have been out for a couple of days. We’re focused on learning how to move correctly so that can heal properly without any setbacks from hurting the incisions.

Thanks for the support, Mark!

Doug

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Hi Paul,
Jennifer here - I hadn’t see you here in a while and wanted to catch you.
You wrote a lot to me when I was diagnosed in Jan 2018 and going through some very very very hard times. I want to Thank You as I lean hard on your written words when in need.

That said, now Salmon River Doug and I kinda fight it together and work through the hard days … a true blessing to be one of his main advocates and caregivers.

So thank you again, I’ve not forgotten :slight_smile:

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Oh yea!!! We got this in Spades!
xxoo
Jennifer :smiley:

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So very happy to see that all went well and you received your gift of life​:heart::heart::heart:

Blessings to you and Jen

Thank you so much, Mommymoses. It has been an intense ride. I’m so grateful for the liver and also the love and support of so many.

And making a friend like Jennifer…worth the price of admission. :wink:

Have a great night.

:peace_symbol: Doug

Hi Jennifer,

It’s so good to hear from you again. It’s amazing how life unfolds what we need when we need it. You weren’t meant to face PSC alone. Nobody should. Then along came Doug. How great is that! I write back to new people on the support group blog. I view it as a responsibility I take willingly to help my fellow man/woman deal with PSC. You were very devastated when we first connected. It’s like a gut punch. You stagger, struggle for breath and clarity of mind while a whole range of thoughts of treatment, suffering, mortality and fear take hold. I wanted to give you a glimmer of hope, to make your survival instinct kick in. Eventually, meeting Doug and your own processing has made that happen. Good for you, girl!

The hepatologists that diagnosed me in 2007 said that I had very advanced PSC, but I appeared in real good health. The doctor said I could live the rest of my life like that. . . but, maybe not. I’m sure by now you know that uncertainty is mostly their best prognosis for PSC. Even though I was not symptomatic, I prepared myself for that day. Two years later all the symptoms appeared very quickly. Repeated hospitalizations for liver failure followed by quick recovery led my doctors to strategize that one of the episodes would result in a rapid rise in my MELD like happened to Doug. But, that did not happen. The liver failure episodes stopped. My MELD was steady at 16.

Other symptoms, like itching and jaundice were getting worse, so they sent me to Madison, WI to get listed in an additional transplant region. The transplant surgeon at UW Medical Center said I did not have time to wait because of my condition. That I should find someone who was willing to donate part of their liver to me instead of waiting for a cadaver liver. He also said they did several living donor transplants a year, but that I should consider a transplant center that does them often. I transferred to Northwestern Memorial Hospital in Chicago. My daughter wrote about my PSC situation on Facebook. She was 33 at the time. A high school girlfriend whom she hadn’t seen in years, responded and wanted to be my donor. She had lost her job working for an insurance company due to her husband’s transfer. This seemed to be what she was supposed to do. Her husband supported her. She was tested and was a perfect match! Simultaneous surgeries were performed. She fully recovered as did I. It will be 7 years in February.

I tell you this to give you more hope. I need to pay if forward for my gift. Someday, you may need to find a living donor. Or, maybe, PSC won’t get worse for you (I know, wishful thinking). I am very happy that you and Doug have each other to lean upon. My hepatologist said PSC occurs in 0.05% of the population. Think how rare that is and what are the chances that the two of you would wind up living in the same city and like each other’s company? It was just meant to be!

Peace and good health,

Paul

Congratulations! I’m so happy for you! I wish you a speedy recovery :grinning:

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Thanks so much, Tala!

:peace_symbol:

Doug

Congratulations! Welcome to the club. The first month is a little tough, but the hard part is already behind you.

Mark my words…in six months you will feel like a new man!

Thank you for the encouragement, Frank. I believe you. I’m feeling a little new already.

It is shocking. I’ve never been particularly interested in my appearance but it is strange to see the yellow leaving and just generally looking healthier.

Take good care. Doug :peace_symbol::muscle:

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