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
Monday, April 19, 2010
Happy DAY!!!
Just got word Roy is comming home and Beth with him. YEA!!!!!!!!
Did I say YEA!!!!!!!
I will give more details when I know more.
Jeff
Did I say YEA!!!!!!!
I will give more details when I know more.
Jeff
Saturday, April 17, 2010
Some Good News about Roy
Today's Blood work looked so good to the Doctors that they went ahead and pulled the drain. YEA. His numbers were all lower and they were happy with the progress. It looks like if this continues they will release him to come home to I.F. MONDAY so we should have Beth and Roy home by Thursday or Friday. Roy sure sounded positive. Keep praying for a good weekend.
Wednesday, April 14, 2010
Roy's lattest
Well I have been busy and have not gotten to the Blog. There hasn't been much new news so I haven't been very diligent in getting it out. As of Tuesday Roy's Bilirubun has dropped a little and his liver enzymes have both gone down a little but not enough. The doctors said that there still is some fluid in the abscess and until they get it out they do not want to release him. It would be like letting him go with a live petri dish inside him. They replaced his drain again this one is the same as the last but they thought the old one was clogged and needed replaced. While they were at it they "stirred up the Pound" and tried to brake up the abscess to allow for more draining. Beth says that it was successful as the quantity and color of the fluid collected in the drain has changed.
I have attached a recent picture of Roy. He still is my Hero. We love him and are so proud of him for the sacrifice he made and is making for me. What a MAN. He is the MAN!!
I have attached a recent picture of Roy. He still is my Hero. We love him and are so proud of him for the sacrifice he made and is making for me. What a MAN. He is the MAN!!
Wednesday, April 7, 2010
Still Partly "Son" ny report.
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.
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.
Monday, April 5, 2010
Partly "Son ny" report.
Beth reported on Roy's appointment to day. His blood work came back better, but not quite good enough. His billiruben was down in the 5 range but his liver enzymes were elevated but they think it is because of the antibiotic he is on. They want him back for tests again on Wednesday and they will advise us more. We are hopping that they will let him go then and we can all meet in Provo on Friday Night. My Sister Debbie is getting sealed in the Manti Temple on Saturday so we are planning on driving down to Provo Friday night and on to Manti Sat. then after the sealing we will head home to Idaho Falls. Yea!!!
There was some great news for me today. Roy asked Dr. Mulligan, the Transplant team head surgeon, about when he would be able drive. Dr Mulligan said he could drive today. Roy then told him that they had told me that I could not drive until the 4 month check up Dr. Mulligan laughed and said that I could drive now but feel free to hold it over your dads head a few days. My wife had compassion on me and told me the truth. So get of the sidewalks here I come!!!!
It will be nice not to depend on others to get me around to little things.
Yes I know I spelled Son ny not Sunny. I meant to do that.
Thursday, April 1, 2010
4-1-10 1700 hours
Roy update:
The abscess of fluid in Roy's abdomen was at 12cm is now at 7cm they are putting a bigger tube in to suck the rest out. He then will be released to the Hornes tonight on oral antibiotics and pain meds. They want him back on Sunday for blood draw, then Monday reevaluation with Dr Mulligan and possibly release. Dr. Mulligan is insisting on the bigger tube to increase the rate of drainage, in order to get him home(to Idaho) sooner.
The abscess of fluid in Roy's abdomen was at 12cm is now at 7cm they are putting a bigger tube in to suck the rest out. He then will be released to the Hornes tonight on oral antibiotics and pain meds. They want him back on Sunday for blood draw, then Monday reevaluation with Dr Mulligan and possibly release. Dr. Mulligan is insisting on the bigger tube to increase the rate of drainage, in order to get him home(to Idaho) sooner.
not an april fools day joke!
Just talked with Beth and got the update on Roy!
The news seams good this morning
His Bilirubin level is down to 6.9
His White Blood cell count is at 9000 as opposed to 23000 he was at when he was put back in the hospital Sunday.
He has as a CT around 1000 am, He is walking around in good spirits. They are thinking that this was the problem all along causing the high bilirubin count and infection.
Dr Mulligan is making the calls but they could possibly leave the hospital on antibiotics soon.
Beth is hanging in there she is ready to be past this but hanging in there.
I am doing GREAT
The news seams good this morning
His Bilirubin level is down to 6.9
His White Blood cell count is at 9000 as opposed to 23000 he was at when he was put back in the hospital Sunday.
He has as a CT around 1000 am, He is walking around in good spirits. They are thinking that this was the problem all along causing the high bilirubin count and infection.
Dr Mulligan is making the calls but they could possibly leave the hospital on antibiotics soon.
Beth is hanging in there she is ready to be past this but hanging in there.
I am doing GREAT
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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