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.htmQ2: 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.htmlThis 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
7 comments:
WOW Those are the whitest eyes we have ever seen!! Keep the pictures coming!!!
I guess we can't say "Don't shoot until you see the yellow of their eyes".
Roy - we are sending you some "pun"ishment for your service beyond the call of duty.
it is "g" rated so appropriate for missionaries.
If you feel the need to laugh out loud please hold pillow firmly against incision. We hope to keep you in stitches.
This is only from Jamie, Amy, & Sam. Mike thinks they are stupid.
The Roans
Don't know if we have ever seen you look so good. Hope to see you in a few weeks when we are down in PHX.
The other group of Roans
Dave, Connie, Justin, Brandon and Jesse
Jeff So good to see you looking sooooo much better! I will continue to keep you and Roy in my prayers! Oh and guess what? I will be going to the Idaho Falls temple on the 10th of April to be sealed to the love of my life and my 2 wonderful children for time and all eternity! Hope you are back in IF soon! Maybe you will be well enough to join us for the sealing?!
♥♥♥ and prayers headed your way♥♥♥
Karrie (a prior angel from ISP)
Those are some of the most beautiful "whites" I have ever seen!! You are totally in the prayers from all of your old girls at RCCE. We love you!
DeLisa
JEFF! It is great to see you looking like your old self again finally!! What a long trip it has been, your patience and strength is so inspiring as is your wonderful family. I am thinking of you and hope to hear from you soon. Big cheers for you coming from Denver today!! Dorothy
Jeff~
It is so good to see a smile on your face and your eyes wide open! Miss you tons and I know we have a lot of catching up to do! I have been praying for you and your family like crazy and I wish you and Roy a very speedy recovery. I can't wait to see you in that tan and brown uniform again! MISS YA TONS!!!!!
STEPH
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