Jeff's Liver Transplant update: May 2009

Saturday, May 30, 2009

Short note about WED from Jeff

I thought I would take a few minutes and try and share some of my Wednesday with you and try to fill in the gaps. Wed about 230 PM Beth and I left for the public library to get some books on tape for my brother Pat and get something for me to read. Then Beth was going to take me to Lunch. I had not eaten since 10 am. While looking in the Library I received a phone call from the Transplant team advising that they thought they had a liver that could work for me. They said the surgeon was going to “harvest” the organ and then evaluate it for viability for transplant. They would like us in Salt lake so they could perform the surgery as soon as possible after harvest. We got to the Intermountain Medical Center in Murry, at 730 and checked in through the ER. They took me up to the 10 floor and put me in a bed and gave me the wounder full hospital gown and pants. It was over one hour before I saw my nurse for the night, then about 915 the flood gates opened and I had 2 phlebotomist come in to draw blood. While they were doing that a tech showed up to do an EKG, as soon as they finish a PA from the surgical team came to brief us on the procedure. He told us they had schedule the “harvest” at Midnight. He hoped to start surgery at 4 AM. Beth and I then started the waiting game. My Great Uncle Gordon, came over to the hospital and spent 3 hours talking with us. He finally had to go home at 320 am. Shortly after he left they came in and said they had started the “harvest” late and so we were hoping for 6 AM. Then at 431 am the transplant team called and said that the Surgeon had “harvested” the liver and was not going to be usable. So they were going to send us home. I have nothing but good feelings about this. I already have a bad liver I certainly don't want to go through the pain to get another one.

Beth and I made it to Raeann's Graduation. It was really nice.

We sure learned a lot about the process. We know that we are at the top of the list and that soon there will be a Good Liver for us. Thanks again for all your support and care. Your prayers are working for us “EVERYDAY”.

I thought I might shared some pictures from RaeAnn's festivities with you all.

Thursday, May 28, 2009

Good and Bad news

Good news: Dad will be home for Graduation
Bad News: none of the donors organs were usable so none of the three people who were to receive from him will receive transplants.

Thanks for the love and support,
Annie

Wednesday, May 27, 2009

The Crazy Week

This is Ashlee.
I am going to take a shot at updating the family blog so bare with me. This week has been crazy and going to remain crazy. Monday we spent the whole day preparing for company. Tuesday Grandma and Grandpa got here then Aunt Betsey had a baby the newest addition to the crazy long family. His name is Coleman. Today, they got the call for a transplant and headed off to Salt Lake. Tomorrow RaeAnn is graduating from High School. Friday the rest of the family is showing up for the wedding. On Saturday Jacob and Brandy are getting married at the Life Care Center. On Sunday Zach is supposed to be blessed, and then all the family is going home. Right now life is crazy but we are going to get through it. Thank you for all the prayers.
The Long Family

We Got the Call More info coming!!!!!!

Friday, May 8, 2009

The latest update.

Hey everyone,

Mom and Dad just got back form their latest set of tests and meetings with the transplant team. Dad is "extremely tired and grumpy"-yes Dad admitted to being grumpy. They didn't really come back with any new information or exciting news. Nothing has really changed much and we are still anxiously awaiting the call. Everyone was hoping he would get it while he was up there. Honestly I am grateful he didn't because that just increases his chances of being here for my graduation on the 28th.

Dad said he was very excited to see a lot of his friends at Camp Williams on Monday. He felt bad he couldn't stay very long, "wow," he said, "I work with some really great people."

Thanks again to Stacie, Joe, Paul, Tina, Bishop and Sis Schwieder, and the Rockwoods for letting us crash at your house for the week, You are some amazing people!

Hopefully my next update will be to tell you Dad is on his way to get a transplant. Thank you again for all you prayers and support.

~Annie / RaeAnn

Monday, May 4, 2009


I thought I would take a moment and update you on my status.
I have had several ruff weeks with lots of downs with a few ups.  I have
really noticed a another drop in my energy level. The other day my local
specialist ordered some blood tests and my MELD was up to a 22.
The transplant team says I am right in there for a transplant, but as we
know the stars have to align.  So--- it could happen any time!

Beth and I are on our way to SLC, for the 6 month transplant battery of
test.  We will be down there all week.  (If we are lucky they will go ahead
and throw a liver in while we are there)

Thank you so much for all your support!  It is a true blessing.  Beth and I
don't know what we would do with out it.
Sent from my wireless Blackberry handheld device.

FAQ'S

I have struggled with how to write this so I figured I would start out with the frequently asked questions (FAQ's)

Q1: What is wrong with you?

A: I have a liver disease called Primary-Sclerosing-Cholangitis (a.k.a. PSC). I am currently in end stage liver failure.
.http://www.mayoclinic.org/primary-sclerosing-cholangitis/
http://www.gicare.com/pated/ecdlv35.htm

Q2: Does that mean you are going to die soon?

A: No, I will explain more latter.

Q3: What dose it do to you?

A: The biggest symptom is chronic fatigue. confusion, jaundice, ascides, sever itching, difficulty sleeping, some pain.

Q4: How did you get this?

A: I am not sure, I just know that in 1996 (because of other health issues) the Dr. did blood work and said my liver enzymes are way up and referred me to a Specialist in St. George. They did a Biopsy on the liver and found it be stage II Fibroses. They did not have a name for it at the time and said watch it for about five years then come back and we will see what the progress is.
In 2001 I returned to the GI (Gastroenterologist) specialist and they once again did a Biopsy. Comparing the results, they were quite concerned and wanted to run a few more test. That is when they positively diagnosed it as PSC. At this point they gave me medicines and said go back to work, get plenty of sleep and you should be fine for a while.
In 2005 we moved to Idaho Falls; during part of my physical with the new doctor he noticed the elevated liver enzymes and referred me to a local GI Clinic. I had been noticing a significant lack in stamina and seamed to be sick a lot. They reviewed my case and thought it prudent to send us to Salt Lake City to get to know the Transplant team down there.
Beth and I spent three days of testing at LDS hospital and meeting with the transplant specialist.
At this visit we learned what to expect and all kinds of new terms like MELD
http://www.mayoclinic.org/meld/mayomodel6.html
This number needs to a 15 before you can get a liver. My meld then was 9-10. They told me they were worried that I would develop liver cancer because of how long I had PSC. They ordered CT scans of the liver every 6 month’s and other wonderful tests regularly.
I have continued to go down hill since then. My stamina has dropped. I have swelled and am having to take medication because of fluid retention. I have developed sever itching. I am yellow (Jaundice) sometimes more than others.
After our last visit Friday the Meld Number is 12 and the DR. is going to go a head and put me on the list.

Q5: What’s next?

A: We are still in a waiting game. I need to get worse and then the right circumstances need to be met to have a liver available for me.

Q6: Why make you wait.

A: The longer my own liver will function the better off I am; because there are no guarantees that a liver will come available for me that matches.

Q7: What are you doing about work?

A: Well I am no longer patrolling. I am on light duty and my supervisors have been great. They allow me to do as much as I can administratively so I am still working about 20 hours a week. The other 20 hours a week is being covered by sick leave and annual leave so I still am getting a pay check.

Q8: What happens when all your leave runs out?

A: The Federal government has a leave share program and I have had many people ask about donating leave to me. So when my leave dose run out I am counting on the charity of my fellow workers to help me get through this.

Q9: What is the recovery time for liver transplant?

A: All the people that I have talked with that have had transplant surgery tell me that they wake up from the surgery felling better immediately. I will have to stay in SLC for 6 weeks after the surgery to get the anti-rejection drugs adjusted just right then should be able to go home and return to work. Within 9 weeks I should fell 100%. Then it is a matter of building up my muscles and stamina again. There should be no restrictions placed on me after that.

Q10: How can I help?

A: At this point in the processes there is really nothing you can do but pray. When I receive my transplant we will be depending on family and friends to help take care of the kids and keep life going but other than that there is really nothing that can be done.
Thanks. Jeff