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

Well I promised to up date this after the trip to the Mayo Clinic. But I have been having a hard time getting to it. So I am sorry I am a few days late.

As of the last update you will notice we had another trial run. I am not disappointed or discouraged. It is just the way things are. It was a hard trip but we got home Monday and had a busy week to get ready for a trip to the Mayo Clinic in Phoenix.

We were delayed leaving Saturday by a 8th Grade Championship football game that Aaron was playing in. It was gorgeous football weather about 68-70 and mostly sunny. The game was great and a tight one. Aaron's team was able to pull of the victory and we now have a champion football player living in our house!

We then drove to Orem, Ut. and spent the night with my sister there. We got there about 1 am and were up and on the road to Phoenix by 10 am. A great friend of ours rode with us and helped Beth with the driving. We stopped in Kanab at my mom and dad's for about 1 hour then were back on the road to Phoenix. This above mentioned friend was able to get us a room at the Transplant House right at the Mayo Clinic. We got there right about 10 pm. Needless to say I was wiped out.

Our days were very full of test we started each day by at least 730 and didn't finish till 430 every day. The people at the Mayo were wonderful and so positive.

We were able to meet a couple that had just received a Living donor transplant from his daughter. They were able to answer so many question and concerns. They also really pushed me to widen my view of accepting donors. The Doctors and nurse spent a lot of time telling us about the affects on the donor. They stressed that the donor goes home in 2 weeks back to work the most medicine there on is maybe a little pain killer for the incision. They are very careful with the donors and will not take any chances with them.

On Tuesday night my wife and I were able to meet up with some Rangers that were in Phoenix for some training and have dinner with them. It was so great to see them and talk with them!!

On Friday as we left the Mayo Clinic we really felt like the week was time well spent. The Doctors all seam positive but we would have to wait to find out till the 28th when they have the next transplant team meeting to see if they would list me or not.

About 4 pm today (Oct. 28) the Mayo Clinic called me and said they would be listing me. They want me to stay on the list for SLC, as I will have a better chance of getting a deceased donor there but they would start the process for a living donor for me and if the donor works out we will schedule a date and get this behind us.

So I am back home trying to recover from the trip to Phoenix and getting on with life.

I want to thank all of you out there for your thoughts and prayers for me. I am so thankful to you all and all you have done for me.

I will make you a deal. (That is for my buddy in Filmore) don't give up on me and I wont give up either. We will get through this and get back the next step in life.

Thank you again

Jeff

Sorry False alarm

They just called and said the liver is no good. Sorry to get your hopes up

We are trying it again.

This morning at 8 am I got a call from Intermountain Medical Center Transplant Team. They asked how long it would take us to get to Salt Lake City. We said 3 and one-half hours. They said the surgeon would like us close by. So Beth and I packed up and headed out. We got to THE 53000 south off ramp just as the nurse called back and said they want me admitted to the hospital. So we took the off ramp and went straight to the hospital.

They were very cautious about committing. So here we go again.

I am in Room 1003 right now until they send me home or take me to surgery.

I thought I would take a minute and send this out for all to know and control some of the rumor mill. Beth is hear by my side. I do not know what I would do with out her. I will be a long day of waiting for us. Please remember us in your thoughts and prayers.

I am sorry that I have not up dated you on the liver lately. I have been pretty much in limbo this summer. Bad days and good days. But we have tried to make the most of it. We got Roy off on a mission, and Raeann in college. My wife reminded me that when my brother had his accident that I had said that if the Lord lets us keep my brother, I would wait another year for a liver. Now I am not saying that I made a bargain with the Lord but as of today it has been one year. In Sept I had a friend come up and he offer to be a living doner for me. He is 52 single never married no family no kids. He has been "pestering" me none stop about it and insisted that I follow through to see if he can bee a donor for me. I called the Dr's in SLC and they said they are not in the position to do living transplants in SLC if we wanted to do that I would have to go to the Mayo Clinic in Phoenix. We contacted them and my wife and I are going to have to go down there to be evaluated by there transplant team. If they accept me as a transplant candidate then they will evaluate the Donor and if he is accepted then they will schedule the surgery. I hope some of this makes sense. I will stay listed with SLC and will also be listed with Mayo in Phoenix until the surgery so there is always a chance a Liver will show up. In the mean time life goes on. I try to make the most of each day. My family and I are so richly blessed by the Lord through our friends and family.

no news is good news???

Well I have been putting this off for a while hoping to be able to tell you all some good news about my condition. Depending on how you look at it depends on weather this is good news or bad.

Since the trip to the hospital at the end of May I have had no significant change. In fact my MELD has gone down to 15 again. and stayed there throughout the summer. I have very little energy and take for ever to recover when I use it.

I am doing less and less at work. I find this very hard.

I have had very busy summer in the family department. If you are interested check out the family blog.

Once again I must thank all of you for support and prayers. I am so blessed by so many friends and family that continue to help us. I am in constant awe at the love my Father in Heaven pours out on me and my family through these special friends and family. May you all be blessed like wise.

Short note about WED from Jeff

I thought I would take a few minutes and try and share some of my Wednesday with you and try to fill in the gaps. Wed about 230 PM Beth and I left for the public library to get some books on tape for my brother Pat and get something for me to read. Then Beth was going to take me to Lunch. I had not eaten since 10 am. While looking in the Library I received a phone call from the Transplant team advising that they thought they had a liver that could work for me. They said the surgeon was going to “harvest” the organ and then evaluate it for viability for transplant. They would like us in Salt lake so they could perform the surgery as soon as possible after harvest. We got to the Intermountain Medical Center in Murry, at 730 and checked in through the ER. They took me up to the 10 floor and put me in a bed and gave me the wounder full hospital gown and pants. It was over one hour before I saw my nurse for the night, then about 915 the flood gates opened and I had 2 phlebotomist come in to draw blood. While they were doing that a tech showed up to do an EKG, as soon as they finish a PA from the surgical team came to brief us on the procedure. He told us they had schedule the “harvest” at Midnight. He hoped to start surgery at 4 AM. Beth and I then started the waiting game. My Great Uncle Gordon, came over to the hospital and spent 3 hours talking with us. He finally had to go home at 320 am. Shortly after he left they came in and said they had started the “harvest” late and so we were hoping for 6 AM. Then at 431 am the transplant team called and said that the Surgeon had “harvested” the liver and was not going to be usable. So they were going to send us home. I have nothing but good feelings about this. I already have a bad liver I certainly don't want to go through the pain to get another one.

Beth and I made it to Raeann's Graduation. It was really nice.

We sure learned a lot about the process. We know that we are at the top of the list and that soon there will be a Good Liver for us. Thanks again for all your support and care. Your prayers are working for us “EVERYDAY”.

I thought I might shared some pictures from RaeAnn's festivities with you all.

Good and Bad news

Good news: Dad will be home for Graduation
Bad News: none of the donors organs were usable so none of the three people who were to receive from him will receive transplants.

Thanks for the love and support,
Annie

The Crazy Week

This is Ashlee.
I am going to take a shot at updating the family blog so bare with me. This week has been crazy and going to remain crazy. Monday we spent the whole day preparing for company. Tuesday Grandma and Grandpa got here then Aunt Betsey had a baby the newest addition to the crazy long family. His name is Coleman. Today, they got the call for a transplant and headed off to Salt Lake. Tomorrow RaeAnn is graduating from High School. Friday the rest of the family is showing up for the wedding. On Saturday Jacob and Brandy are getting married at the Life Care Center. On Sunday Zach is supposed to be blessed, and then all the family is going home. Right now life is crazy but we are going to get through it. Thank you for all the prayers.
The Long Family

We Got the Call More info coming!!!!!!

The latest update.

Hey everyone,

Mom and Dad just got back form their latest set of tests and meetings with the transplant team. Dad is "extremely tired and grumpy"-yes Dad admitted to being grumpy. They didn't really come back with any new information or exciting news. Nothing has really changed much and we are still anxiously awaiting the call. Everyone was hoping he would get it while he was up there. Honestly I am grateful he didn't because that just increases his chances of being here for my graduation on the 28th.

Dad said he was very excited to see a lot of his friends at Camp Williams on Monday. He felt bad he couldn't stay very long, "wow," he said, "I work with some really great people."

Thanks again to Stacie, Joe, Paul, Tina, Bishop and Sis Schwieder, and the Rockwoods for letting us crash at your house for the week, You are some amazing people!

Hopefully my next update will be to tell you Dad is on his way to get a transplant. Thank you again for all you prayers and support.

~Annie / RaeAnn

I thought I would take a moment and update you on my status.
I have had several ruff weeks with lots of downs with a few ups.  I have
really noticed a another drop in my energy level. The other day my local
specialist ordered some blood tests and my MELD was up to a 22.
The transplant team says I am right in there for a transplant, but as we
know the stars have to align.  So--- it could happen any time!

Beth and I are on our way to SLC, for the 6 month transplant battery of
test.  We will be down there all week.  (If we are lucky they will go ahead
and throw a liver in while we are there)

Thank you so much for all your support!  It is a true blessing.  Beth and I
don't know what we would do with out it.
Sent from my wireless Blackberry handheld device.

April update.

Sorry it has been so long for an update but there has been very little news to pass on.
I have had several bad weeks (which I would rather ignore). We just got back the April blood test results and my MELD score is now a 20.
The good part of that is at least there is some outward sign for what I have been feeling. It seams to me to be the hardest to just let myself be sick and not fret about what I can't do. I really can not even imagine what my Brother Pat must be going through.
I was able to go hear both of my daughters play at the Gem state music festival yesterday. They both did really good. We had Roy home for Easter and Betsey, Trent and family joined us for Easter. Roy and Trent hid about 250 eggs all throughout the yard and the kids had a blast trying to find all of them.
Our next appointment in SLC is the first week of May. This is the 6 months testing and all I believe they have got me booked for about 3 days of tests. (I would love to be able to miss this because I am already getting a transplant)
I still feel very blessed to have so many friends looking out for me and praying on my behalf. Thank you for your continued prayers. May you be so richly blessed also.

Feb Report

We had our Feb. Clinic appointment in SLC this week.
The good news is that My Meld score climbed another point! YEA..
The Hospital in SLC has done 8 transplant already this year and is real excited about the progress. The Dr. is very careful to not give us to much hope but he did say that this was my YEAR.
I am doing OK. I just seam to have No energy to do much and when I do anything I seam to pay for it for several days. It is very frustrating.

That being said I can truly say that We are extremely blessed. The blessing continue to poor in. I have nothing to complain about.

My Brother Pat is doing really good and has been transferred back to Idaho to a Long Care and Rehabilitation center. He is working hard at learning how to deal with the many limitations be will have. He seams to be able to keep a positive attitude and is certainly and example for me.

I hope you all are doing well. Thanks again for all your prayers and well wishes.

Yet another update

Well it was a different kind of Christmas this year. With dad so cold and tired all the time we didn't do our annual Christmas light looking or caroling to the neighbors ( I bet they weren't too disappointed). The holidays seemed to have taken their toll on dad. He is completely worn down and has little patience.
His discoloration is obvious now and at times it is hard to look at him or hold his hand because he has become so week. He still isn't as bad off as Pat but he is catching up quick.
Speaking of Pat he is doing remarkably well. Dad and Mom are actually at the Hospital to see him right now. Pat has recovered immensely over the past month and is preparing to go to Salt lake this week to the University of Utah hospital to start his rehabilitation. He received a Treak ( tube stuck in a hole in his throat instead of in his mouth) and so he can now mouth words. Sylvia left to go back to Australia yesterday and Pat has been lonely since she left.
This visit to the hospital will probably wear Dad out and he will spend the rest of the night in his Lazy-Boy. I think one of the hardest things for Mom right now is the fact that she and Dad aren't able to sleep together. Dad doesn't' make it to his bed until early morning , if he makes it at all, and Mom is up at a quarter to four to go to work. I know we all can't wait until things get back to normal around here, What ever that is?
Dad has a cold right now so we are hoping it doesn't get any worse; it would be terrible to miss out on a liver because of a stinking cold. Anyway I think I about have you caught up. If you have any questions don't hesitate to email me or my Dad or leave a comment. With this new year one of my resolutions is to keep the blogs updated. Wish me luck. Thank you to all who have left comments and offered support and thank you for the prayers they are so helpful.
*RaeAnn