Some of you faithful readers all ready know about the changes that occurred at my house while I was gone to Phoenix. Some of you actually participated in it.
I wanted to take a few minutes and share with all of you what wounderfull friends we have in in Idaho Falls.
While we were in Phoenix some (most) of our wonderful neighbors cleaned our house. but that wasn't enough for them they Totally redid the upstairs. I have attached pictures of the house in a slide shoe to the right. You can see that they redecorated, painted, replaced and updated our house. Those of you familiar with the house can see he difference others you will have take my word for it. It was a true makeover. The walls were painted, carpets cleaned floors and cabinets scrubbed. it goes on and on.
I do not know most of the names of the people involved but please accept our heart felt thanks.
I have waited so long to post this so as not to ruin the surprise for Beth.
They are on the road between Provo and Idaho Falls. We will be so happy to see them hear this evening.
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.
Thursday, April 22, 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
3 comments:
Beautiful just beautiful.
wow the makeover is beautiful just what you needed after your transplant so now it will truly be like starting your lives over again a new house and new liver i wish that could be me but i suppose its just not going to happen sylvie keeps me informed on your progress it helps to keep me spirits up anyways please take care and remeber it is a priveldge to get a new life not a right!
love angie cross xxx
How wonderful for you and your family! If there is anyone that deserves these blessings it is you. Your home is beautiful, but so thankful for how things are moving forward for you and your family. You are still in our thoughts and prayers. May God bless you!
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