Well I can hardly believe that November and December have passed and I am still waiting for a Liver. I am sorry that I have not updated the blog sooner but I have not known what to say and have not been to keen of mind to put anything in writing.
Let me start with the Living donor questions. The donor we were hoping for was not accepted by the Mayo Clinic. So that has been left in the air.
When I was at the Mayo Clinic they found an issue that they put me on cumadin for. My MELD was running around 19-22. With me on cumadin my INR raised and that raised my MELD to a 26. The Mayo called me and asked about transportation arrangements to get to Phoenix with in 6 hours if a Cadaver Liver becomes available. With a MELD of 26 I was near the top of their A list. I was able to set up arrangements thanks to some great friends to insure a flight to Phoenix with in 4 hours.
Salt Lake called and had a slightly different take. They felt that being on cumadin artificially raised my MELD and they did not seam to want to list me with that MELD number. Ether way it is a mute point now.
Then I had a pretty bad week the second week of December. I was scheduled to have a yearly Colonoscape in December and had a appointment to go in and sign the consent forms on Wed. I was feeling so bad that I begged to see the Dr. and he happily came and saw me. He was quite concerned with how I was doing he took me off the cumadin because my INR was over 6. He gave me 10mg of Vit. K to help thicken the blood and was hoping my INR would drop down to a 1.5 so they could do the procedure. He spent a long time with me. He also gave me some pain medicine to help me feel better. By Sunday I was not doing any better although my INR was down to a 2.6 (still to high). The Dr. called and wanted me to go to the hospital. I resisted and took more pain meds and promised if I felt worse I would go. By Monday morning I was feeling better. But blood test still showed INR to high. They gave me 10 more mg of Vit K and it only brought my INR down to 1.8. In the mean time my other indicators went higher so my meld is now a 27 after being off cumadin for a while ( for what ever it is worth).
We did have a great Christmas and enjoyed being with the family. I did not get out to carol or go visit neighbors but did have quite a few visit me here. WE have the BEST neighbors!!!!!
I know that there are 2 different people (both family members) trying to donate for me they have contacted the Mayo and we are in a wait and see pattern with them. The Mayo will not tell me anything. It is up to the donor if they want me to know and the Mayo wont tell the donors about each other. So we sit and wait. You would think I am good at that now, but I am not.
We continue to be blessed beyond anything I can imagine. I now the Lord is in charge and I just have to have enough faith to leave it in his hands. He knows what he is trying to build here with me and I just need to know that his will is Best.
At this time of year I am so thankful for my savior and what he has done for me. He stands by me and supports me through these trials. I also give thanks for each and everyone of you that take time to think of me and turn your thoughts and prayers to me. I truly fill the love and blessings it sends my way. I will never be able to repay you for all you do for me but I will do my best to support you in your trials as well.
With all my love at this time I hope you all had a Wonderful Christmas and that the new year bless you with all you need and want.
Love Jeff
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.
Sunday, December 27, 2009
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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
2 comments:
Jeff,
I just wanted to let you know that I am thinking of you and praying that you get a liver. The challenge coin you gave me the day I went into labor with my son sits in my jewelry box. Every time I prepare for a special occasion, I open the lid and see that coin along with my small jewelry collection. Immediately I think of you, your most honorable character, and your beautiful outlook on life despite the situation you have found yourself in. I am so grateful to know you (even now, just through the internet) because you give me a standard of person that I strive to be. I hope you get your liver soon! I miss hearing you on the radio, although I won't be there when you come back :)
Love and Hugs,
Heather
Jeff and Family,
We want you to know that we missed your caroling this christmas. We haven't been over to visit in a while, but we want you to know that you are in our family and personal prayers. We love you all lots!
The Klinglers
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