Friday, August 13, 2010

What a month

I am again sorry for my delinquency in updates. It has been a real roller coaster ride for the last month and a half every time I got ready to update the status it would change. Things would look good then turn bad, Roy would have a good day then by the end of the day it would change. It is never fun to send out bad updates. Now I will try and catch you up on the last month.
The Big news is that Roy and Beth got to come home from Phoenix on Friday Aug, 6. I was at Scout Camp with my two other boys for the week. We were reunited on Saturday morning. Roy has lost over 70 lbs since his donation. He looked frail and yellow. His bilirubin was finally down below 10 it was at 8.9. He still was very fatigued and was having trouble with nausea but the doctors felt that he was able to make it home. Beth got home to help get things ready for RaeAnn's wedding that was one week away.
On Tuesday we took Roy in to get his blood work done and his bilirubin had gone down to 5.4 (Yes and there was MUCH REJOICING YEA!!!!). Through out the week we continuted to see Roy's color improve and his stamina start to return. He has a long way to go but it is great being able to see the improvement. HE still has an internal-External Drain line in to his liver but it is capped were it exits the body. If he continues to improve in 3-5 weeks he will go back to Phoenix to have it removed. Then he should be very close to being released.
We are hopeing that they will start Physical Therapy this week with him so we can help him build back the strength he has lost.

We made it though to RaeAnn's Wedding and it was a wonderful day. Thanks to all the great people that helped get things ready it was a truly great day! I will try and post some photos of Roy and the wedding. IT was a great day.

I continue to get better by the day. I some times get discouraged that I am not going faster but as I look back I can see steady progress daily. I am hoping to be back in uniform by next week Monday the 22 the 2 weeks of FTO training and I should be back to full duty. I am very excited for that.

Life has yet to slow down for us a bit nor do I think it will we just hold on tighter and try to prepare for what comes next. I want you all to know that I Know that I have a Heavenly Father that truly loves me and knows me personally. He has supported me through this and all my other trials. He is there for me and I am very thankful that He has given me so many blessings. May each of you fell His love for you and continue to enjoy the blessing in your life.
Thanks again for all you have done for us!! With all my Love Jeff & Beth Long
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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

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