Friday, March 26, 2010

Travel Plans revisited??

This Picture is the doctors diagram. The upper left lobe of the liver is illustrated (this is what is left in Roy). The tubes are the bio ducks draining the liver. As you see the main bio duct drains from the Liver to the intestine. The dotted line represents where the liver was cut and split.

The circle at the bottom of the Tube represents where the sphincter muscle was stretched to allow for more bio to drain in the liver. The stint was placed in the duct from the sphincter to the just below were the duct branches. This stint was removed and the Doctors felt like they did not need to replace it.

I hope this picture may answer questions for all of you.

Well happy Friday. We are starting to get use to spending Friday's at the Mayo. We started out at the Mayo this morning at 0730 having blood draws. The good news is I was cleared to go home.

Roy however was a diffrent story. His blood work showed that his numbers had not gone down. So the surgeons decide that they needed to go in and remove his stint. They took him in to have the ERCP at 1700, we just got done talking with the Surgeon and they informed us that Roy was doing well. That things looked good and that they had removed the stint and things appeared to be draining well. He did not know why the stint did not allow the bio to drain but every thing looked good. They were able to insert die and watch it drain and it was draining good. He drew us a picture and I will paste it above with some explanations.

We are not sure now when Beth and Roy could get to come home they are hoping Monday morning.

Our plan now is to fly me home tomorrow. Then Beth and Roy will stay around here till they release Roy then they will drive on home.

I will post this now I am sure there are lots of questions out there fire them off to me and I will try to answer them.

Jeff
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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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