Friday, March 19, 2010

Friday afternoon.

Well today has been a little disappointing. Roy went in and had his blood tested and the Doctors were not happy with the results so today at 2pm they scheduled him for an ERCP (basically a scope down the throat and then up in to the bile ducts of the liver). The thought is that where the Bio ducts meet the Stomach there is a muscle similar to the sphincter muscle. It is believed that this muscle is constricted and not allowing the Bio to flow out of Roy's liver due to the trauma of the surgery. They are hoping to go in and stretch this muscle out. If necessary they will put a stint (small straw) in there and they may have to leave it in for up to two weeks. Roy is in the procedure right now (1700 hours). We will let you all know more when we do. Thanks again for all the prayers on our behalf.

Well before I could get this posted the Dr came out and informed us on how things went with Roy. He did very good through the procedure. The Dr. felt like what they suspected was confirmed. He was able to insert a stint in the common bile duct and stretch it out. He said it was like using a faucet that wouldn't open more than 1/4 of the way. The doctor felt that thus will really help Roy recover fast now. They will check his blood on Next Friday but the Dr thinks that he will be ready to go back to Idaho. He will need to come back to Mayo to have the stint removed in about a month but the Dr says that he should be ready to go back to his mission unrestricted at that point.

Roy did well through the procedure but because of the sedation medicine he is quite out of it tonight. He is sleeping on the coach this evening and his mother is staying right by him. We will hope to start seeing big changes in him tomorrow.
Posted by at

3 comments:

ozymum said...

That's good news! I'm glad they figured it out and at least Roy's stent won't be in as LONG as mine!! lol He should start to perk up in a day or two :-) love Sylvie xoxox

March 20, 2010 at 1:51 AM
Merodene said...

We hope you start seeing pretty pink skin and white eyes again! It's amazing how important a little muscle is!! We love you Elder Roy!

March 20, 2010 at 7:15 AM
The Roberts said...

Our prayers are still with you Jeff & Roy. Here is to seeing you all real soon.

March 20, 2010 at 10:27 AM

Post a Comment

Subscribe to: Post Comments (Atom)

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

Background