Once again It is with some disappointment that I wright this update. Roy had a "Good" visit and got a good report from the Mayo Clinic today but not "Good" enough. His blood work is moving in the right direction. His billirubin is down to the 4 range but his liver enzymes are still elevated. The doctors believe this is caused by the antibiotic he is on so they are changing the antibiotic to see if that will help those numbers. They said the abscess of fluid has shrunk significantly but there was still more to get out. So the drain stays in.
Right now the Plan is for Roy to return to the Mayo for blood work on Friday, then back on Tuesday for another cat scan and check with Dr Mulligan.
This means no joyous meeting for our family in Provo this Friday. We will have to do without for another week. Please keep your prayers coming for Roy he still needs them desperately.
I am doing well. Spent from 9 am till 530 pm working and running errands around town made for long day and I am very tired now but it feels great to be able to do so much. Hope I didn't overdue it to much. We will see how I feel tomorrow.
This blog has been set up to help inform family and friends of Jeff's journey through the transplant process. The infromation on this site should be up-to-date and accurate. Please feel free to leave notes and share with others. Thanks for the support and prayers, The Jeff Long Family.
Wednesday, April 7, 2010
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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
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
1 comment:
Hang in there Roy! Do your doc's need a little bribe?? (like another Idaho Spud!)
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