Well here is the latest on me (what a boring subject). After three days of tests in SLC at the transplant center my MELD increased again to 16. Those watching, realize that’s another point raise in just 2 weeks. The DR said that all the blood results looked worse than just two weeks ago. The good news is that I am getting higher on the transplant list. I am tiring out easier but I am still having some good moments.
For those of you asking about leave donations there should be something coming out soon. I hope to have all the paper work submitted to the state office by the end of the week. Thank you so much for your care and concern for me and my family. I am overwhelmed by the generosity of the wonderful people I work with!!
Now an update on my brother Pat, as you may have read about his accident from this blog, 5 weeks after the accident he is still in ICU and pretty much unconscious. They have yet to be able to do the surgery to fuse his neck, because of infections. Thus he is still intubated (breathing tube down throat) and kept sedated. He has responded on occasion to commands to stick out his tongue and move his eyes. He is still very much unstable. His poor wife (Sylvia) is trying to deal with this and keep a positive attitude. I have to confess. She keeps us up and a lot more positive then we would be with out here. She is such a rock!
I do not have to look very far to see so many others worse off than us. We are so blessed. The Lord hears, answers and is answering ours and your prayers. Please keep praying for us.
This month as we get ready to celebrate Thanksgiving I truly give thanks for each and everyone of you that take the time to make a difference in our life and the lives of others. We have so very much to be thankful for.
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, November 12, 2008
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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
6 comments:
Jeff,
You and your family are in our prayers constantly. Thank you for the update. We were sorry to hear about your brothers accident. We pray for him and his family as well. God Bless, and where can we donate to your "liver" fund?
Brenda Klingler
Jeff,
I work with Joe Manley at the FCSO. I am familiar with your disease and unfortunately my father lost his battle with PSC in April 2007. I really wish you and your family the best. Even though we've probably never met in person, remember your in my thoughts and I am pulling for you.
Deputy Bart Quayle
FCSO
Jeff:
I received an email today about your condition. I said Jeff Long...I think I knew one who lived in Kanab. And Alex confirmed it. I see you haven't moved far from your religion roots. I am sorry to hear about your plight. I know one way I can help and I will be shortly. But is there anything else I can do, please let me know.
Jeff,
Trudy and I just found out about your medical condition yestereday from Marilyn. Today she sent me info on how to find your blog. We want you to know that you, your family and your brother are in our thoughts. I want you to know how pleased I am, for you to have become the professional ranger, that you are. With your heart, understanding of people, you are able to deal with people and situations with the appropriate level of law enforcement actions. I think you have proven you were the "right" guy for the job. We wish you well and a speedy recovery. Please give our regards to Beth. Tom and Trudy Hansen
Hi, I just wanted to say good luck from someone else with PSC on the waiting list!
I've got a blog myself as well:
http://daveweston.blogspot.com/
Good to read about other people in the same situation. Sounds like you're getting close now - hopefully me too.
Bext of luck, hope to read of much success in the future.
David
Jeff,
I believed we crossed paths working together when you were in Kanab. I was in Page with the AZ Game and Fish around 1984-2000. I was very sorry to learn about your situation recently. You and your family are in my thoughts and prayers. Stay positive, keep the faith, and get well soon.
Wishing you the best!
Bob Lemons
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