Monday, March 29, 2010

Monday update


Well this weekend has seen things change rapidly. As you can see I made it home Sat. at 8 pm.


Roy had to stay in Phoenix because they were not happy with his Liver numbers. Then Sunday Roy went and had his blood drawn and they called and said his Billiruben had drooped to the7 range (a 2 point drop). They were happy with that but did not like his other liver enzymes. So they said come back on Tuesday and we will try again.


As Sunday progress Roy got sick Nauseated and started running a fever. Beth called the Transplant team and they said bring him in to the ER at Mayo. So off they went. When they got there, one of the Transplant Team's surgeon was waiting for Roy and they admitted him directly to the Hospital.
They had trouble starting an IV on Roy because he was so dehydrated. They ended up having to call in a specialist with the ultra sound scanner to get it started. It is doubly bad when you realize how much Roy hates needles and had to endure.
They did get the IV established and pumped fluids in to him then started him on Antibiotics Monday morning.
Beth spent the night at the hospital with Roy. They were not prepared to spend the Night and Debbie Horne had driven Beth and Roy to the hospital so they were without anything.
This morning Mark Burn NP order a wide spectrum antibiotic IV for Roy every 6 hours. At 1230 they came and took him down to radiology to do an ultra sound. Then they took him directly to catscan to get a better picture. Then they put a drain in him to drain a large pocket of fluid (abscess) they had located in his abdominal cavity. They sent some of the fluid to the lab to culture. They then brought him back to his room and he is now on antibiotics and Pain medicine. Roy says he is feeling better and breathing better.
Beth is settled in for another long night at the Mayo with Roy. Next to not liking needles he dose not like being left alone.
This morning I got up and started at 0700 I had to go to the lab and set up the process for them to do my weekly draw and get the info to the Mayo Clinic. They are now expecting me every Monday at 0800 for the blood draw.
It was fun to see the people at the lab that have drawn my blood for about three years. They were all excited to see how good I look. While walking through the halls I walked in to Karen Lugo. It was great to see her!!!
My kids then took me out to Perkins for breakfast. That is were the picture was taken. From there we went to the office and spent 3 hours at work I am not sure there was a hole lot of work done on my part, but I was glad to be there and see some good friends.
Well I had a great day. I did over due it some but am excited for how good I feel. I am sorry that I have not keep you all better informed with what is going on. It is tough for me to get everything done. I am sad that Roy is not home healing with me but have faith that all will be well.
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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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