Wednesday, March 17, 2010




A lot of you have already seen this update from Roy. I thought it important to hear from him, how he is feeling. I can tell you that he is doing well. Although the Dr. would like for him to being better they are not extreamly worried. We took some pictures this afternoon out in the yard I think you can see form the pictures that we are doing great. I sure wish Roy could wake up in the morning and be over this issue. I still know beyond a shadow of a doubt that we are blessed and be looked after. Hope to have some great news for all this Friday. My report from the Dr was good yesterday. They removed some of the staples in my abdomen. They thought I was doing as good as as could be. They said that they thought by Thursday they may be able to remove all the staples and the drain they left in after the follow up surgery. I have been able to reduce the pain medications and hope to be able to continue on that path. I hope you all have a great week . Thanks again for all your support and prayers.
Jeff Beth and Roy

(Roy's Email out today)
Hi everyone,
my dad is forcing me to write an email seeing as I haven't written one in a week or two. I'm sorry if my lack of email has been offensive to you. I'm just tired all the time and I don't care for reporting bad news or even just stagnant news. My health right now is not the best. The doctors have been a surprised to find that I'm not healing as quickly as they expect from a Donor especially a young healthy one. Normally donors turn the corner and are really starting to feel better in the beginning of the third week. I am feeling somewhat better and my incision is healing up very nicely I'm able to do a lot of things for my self and I can walk around do stairs, and I've reduced my pain pills to 2 or 3 a day as opposed to the 4 that have given me permission for, however my bloodwork just doesn't want to get better. This means I feel tired a lot my body isn't getting rid of a lot of the toxins it should. That's why I'm still here in Mesa, Arizona. I'm still Yellow. My bellirubin is the number they have been watching closest its supposed to be close to 1 and right now its at 9 they had threatened me with a procedure tomorrow if my numbers didn't improve they did a little so they'll hold off until Friday. Don't worry its not as bad as it may sound, its just tiring frustrating and not the happy kind of news that I would like to be giving, but that is the way things go. Lots of love talk to you later
Elder Long
or maybe
Roy Long
I'm not really sure right now I don't know if I'm a missionary or not. Lots of love talk to you later.
I included some pictures of me and my dad stand in the backyard of the house we are staying in
hope you enjoy
Posted by at

3 comments:

ozymum said...

I love the pics, I have never seen you looking this well Jeff, it's wonderful to see! And we all know that Roy's healing is in the Lord's time and Hands not ours. Love to you all, Sylvie and Aussie family xoxox

March 18, 2010 at 12:42 AM
Merodene said...

You both look great....and so does the weather!!! We are still praying for your recovery!! It's always good to hear from you, and pictures are even better!!! Thanks!

March 18, 2010 at 7:38 AM
Joe said...

Jeff,
You guys look great buddy. I'm so happy for you and your family. Keep pressing on buddy.
Joeman.

March 20, 2010 at 10:00 AM

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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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