Ken's home!

[Guest guest]

SATURDAY, SEPTEMBER 22, 2007 05:06 PM, CDT

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Ken went home today! Is this the end of the story – No. We know because of the

blood clot, he’ll eventually need another liver, but to really appreciate what

going home means to us, you have to understand where we’ve been.

A brief look back:

6/20 - The long awaited “we have a liver for you†call.

6/21 – Transplant surgery

6/22 – Infection & wash out surgery

6/26 - Coma, liver & kidney failure, on life support

6/28 – Re-listed Status 1A

6/30 – 8 a.m. 2nd transplant surgery

7/3 – Pancreatitis & TTP (requiring plasmapheresis & kidney dialysis)

7/17 – Wash out surgery – open wound with vacuum

7/19 – Placement of chest drain tube

8/1 – Leaves hospital for Twice Blessed House after 42 days (3+ weeks in ICU)

8/13 – CT reveals portal vein clotted off, no treatment possible, will require

new liver

9/1 – CMV discovered & treatment started

9/20 – Home to parents house

9/22 – Home Sweet Home with Roxy & Dollar tails wagging.

Hospital Bill - $915,751.05

Doctor Bills – Haven’t arrived yet

Medicine bills – Just starting

Ken’s life - Priceless

Thank you so much for your support. Your prayers & good wishes lifted us when we

were down, made us smile when nothing else could and gave us faith & hope when

it felt like all was lost. We will be forever grateful to you, to Ken’s

doctors and to both of Ken’s organ donors, the real hero’s of this story.

I’ll stop giving updates now, all is well. Sign up for the Journal Update

Notification on this site and you will receive an e-mail, if I ever update

again. If you have any questions about PSC or a liver transplant just e-mail me

at: barbhenshaw at peoplescom dot net

And now – the rest of the story…………….

According to the National Institute of Health, PSC (Primary Sclerosing

Cholangitis) is an orphan disease, because “it’s considered to have fewer

than 200,000 affected individuals in the U.S.†Being so rare, many people

suffer in silence, feeling totally alone, and helpless in their fight against

this formidable foe. PSC Partners Seeking a Cure Foundation was established to

foster education & support, promote PSC awareness & organ donation, advance

research of the disease, and to find effective treatments that may one day lead

to a cure. The Foundation hopes, and in fact is, changing the way patients react

to the challenges that face them. If Ken’s life changing experience with PSC &

organ transplantation touched you, please consider making a donation to PSC

Partners. Wouldn’t it be something if we could: stop another mother’s tears;

another father’s fears; and another sister’s heart break. You can help us do

that by donating; whatever you can afford will help.

Your tax-deductible donation can be sent to:

PSC Partners Seeking a Cure

5237 So. Kenton Way

Englewood, CO 80111

As of today (9/22/07) there are 97,278 people waiting for an organ donor. Have

you signed an organ donor card & told your family about your decision? If not,

please do so today.

With love, Barb, TJ, Kim & Ken

P.S. Check out the photo section!

[Guest guest]

I am heartbroken for what you have been thru. I am so glad you are home !!!! Keep us posted, we are praying for you.. Gedgaudas-Ostosmother to Tyler (age 9) PSC and UCand McKenna (age 5) Sent by: 09/22/2007 05:52 PMPlease respond to Topsc-support < >ccSubject Ken's home!SATURDAY, SEPTEMBER 22, 2007 05:06 PM, CDT Subscribe to journal update notification http://www.caringbridge.org/cb/jrnlEmailNotif.doKen went home today! Is this the end of the story – No. We know because of the blood clot, he’ll eventually need another liver, but to really appreciate what going home means to us, you have to understand where we’ve been. A brief look back:6/20 - The long awaited “we have a liver for you†call.6/21 – Transplant surgery 6/22 – Infection & wash out surgery6/26 - Coma, liver & kidney failure, on life support 6/28 – Re-listed Status 1A6/30 – 8 a.m. 2nd transplant surgery 7/3 – Pancreatitis & TTP (requiring plasmapheresis & kidney dialysis)7/17 – Wash out surgery – open wound with vacuum7/19 – Placement of chest drain tube 8/1 – Leaves hospital for Twice Blessed House after 42 days (3+ weeks in ICU)8/13 – CT reveals portal vein clotted off, no treatment possible, will require new liver9/1 – CMV discovered & treatment started9/20 – Home to parents house9/22 – Home Sweet Home with Roxy & Dollar tails wagging.Hospital Bill - $915,751.05Doctor Bills – Haven’t arrived yet Medicine bills – Just starting Ken’s life - PricelessThank you so much for your support. Your prayers & good wishes lifted us when we were down, made us smile when nothing else could and gave us faith & hope when it felt like all was lost. We will be forever grateful to you, to Ken’s doctors and to both of Ken’s organ donors, the real hero’s of this story. I’ll stop giving updates now, all is well. Sign up for the Journal Update Notification on this site and you will receive an e-mail, if I ever update again. If you have any questions about PSC or a liver transplant just e-mail me at: barbhenshaw at peoplescom dot net And now – the rest of the story…………….According to the National Institute of Health, PSC (Primary Sclerosing Cholangitis) is an orphan disease, because “it’s considered to have fewer than 200,000 affected individuals in the U.S.†Being so rare, many people suffer in silence, feeling totally alone, and helpless in their fight against this formidable foe. PSC Partners Seeking a Cure Foundation was established to foster education & support, promote PSC awareness & organ donation, advance research of the disease, and to find effective treatments that may one day lead to a cure. The Foundation hopes, and in fact is, changing the way patients react to the challenges that face them. If Ken’s life changing experience with PSC & organ transplantation touched you, please consider making a donation to PSC Partners. Wouldn’t it be something if we could: stop another mother’s tears; another father’s fears; and another sister’s heart break. You can help us do that by donating; whatever you can afford will help. Your tax-deductible donation can be sent to:PSC Partners Seeking a Cure 5237 So. Kenton WayEnglewood, CO 80111As of today (9/22/07) there are 97,278 people waiting for an organ donor. Have you signed an organ donor card & told your family about your decision? If not, please do so today. With love, Barb, TJ, Kim & Ken P.S. Check out the photo section!