What A YEAR!!!!!

Well It has been a while since I have updated this and thought I would update it at least one more time. Today I just finished my one year check up at the Mayo Clinic in Phoenix. The news is that there is no signs of rejection. The doctors were more then surprised and very pleased with all the results. I am feeling great and doing very well. Still have problems with swelling and they hope it will get better but other that I am good to go. In fact the doctor said they were surprised that there was no other issues and said they do not need to see me again until next year. They said lab checks once a month and keep taking my meds as directed. Unless there is a change in the labs I will not even need a Biopsy of my (new) liver next year. HURRAY!!!!

Roy is doing so much better. Just a quick catch up with him. His liver seems to have settled down and is functioning good for him. Most all of his liver enzymes have normalized and his health has returned. He still has an elevated Phosphatase reading and they just do not know why but everything else with the liver seems to be in line.

Threw out this he developed some kind of Neuropathy that made him lose the functions of his hands. But since November the Mayo Clinic has been doing "IV IG" treatment on him and this seams to be repairing the damage done to his nerves and he has got most movement in his hands back and now we are just waiting on feeling to come back.
The IV IG treatment has been 4 days of IV therapy ( you know how Roy just loves Needles). This month they are trying to do the same treatment in 2 days time. Roy is hoping that if he can get it down to two days a week he can go back out and finnish his mission. He has been working with the Mission President to see what can be done. He would really love to be back in Seattle, Serving the Lord.

Beth and I have talked a lot this week about what a different one year makes. For those of you still reading this at this point let me thank you for all your support once again.!! I would not have made it this far with out it. There is no way I will ever be able to thank each and every one of you but I am so very thankful for all your thoughts and prayers!!!

May the Lord bless you and keep

Jeff, Beth and Roy Long

What a month

I am again sorry for my delinquency in updates. It has been a real roller coaster ride for the last month and a half every time I got ready to update the status it would change. Things would look good then turn bad, Roy would have a good day then by the end of the day it would change. It is never fun to send out bad updates. Now I will try and catch you up on the last month.
The Big news is that Roy and Beth got to come home from Phoenix on Friday Aug, 6. I was at Scout Camp with my two other boys for the week. We were reunited on Saturday morning. Roy has lost over 70 lbs since his donation. He looked frail and yellow. His bilirubin was finally down below 10 it was at 8.9. He still was very fatigued and was having trouble with nausea but the doctors felt that he was able to make it home. Beth got home to help get things ready for RaeAnn's wedding that was one week away.
On Tuesday we took Roy in to get his blood work done and his bilirubin had gone down to 5.4 (Yes and there was MUCH REJOICING YEA!!!!). Through out the week we continuted to see Roy's color improve and his stamina start to return. He has a long way to go but it is great being able to see the improvement. HE still has an internal-External Drain line in to his liver but it is capped were it exits the body. If he continues to improve in 3-5 weeks he will go back to Phoenix to have it removed. Then he should be very close to being released.
We are hopeing that they will start Physical Therapy this week with him so we can help him build back the strength he has lost.

We made it though to RaeAnn's Wedding and it was a wonderful day. Thanks to all the great people that helped get things ready it was a truly great day! I will try and post some photos of Roy and the wedding. IT was a great day.

I continue to get better by the day. I some times get discouraged that I am not going faster but as I look back I can see steady progress daily. I am hoping to be back in uniform by next week Monday the 22 the 2 weeks of FTO training and I should be back to full duty. I am very excited for that.

Life has yet to slow down for us a bit nor do I think it will we just hold on tighter and try to prepare for what comes next. I want you all to know that I Know that I have a Heavenly Father that truly loves me and knows me personally. He has supported me through this and all my other trials. He is there for me and I am very thankful that He has given me so many blessings. May each of you fell His love for you and continue to enjoy the blessing in your life.
Thanks again for all you have done for us!! With all my Love Jeff & Beth Long

What a Week of ups and downs.

What a week. AS of the last up date we saw Roy's numbers improving and his body was starting to wake up and get back to normal. His Creatitin and INR continued down to normal levels. His liver functions were still elevated. The good news is that the liver function numbers have started down. They are still elevated but have continued to drop.

Friday they released Roy from the Hospital. Beth was able to obtain a room at the Arizona Transplant House (http://www.aztransplanthouse.org/) right next door to the hospital. They got to stay about 8 hours before Roy was running a high fever and was throwing up. He went to the ER there and they readmitted him. They ran several tests and found that he had a infection called Clostridium or C.Diff. They quarantine him and put him on IV medications. The good news was that his liver functions continued to decrease though this.

Sat, and Sun, he endured the hospital and he started to get some of an appetite back . They released him Monday afternoon and he and his mother went and saw a movie. Roy said he did not want to go sit around and get feeling bad and get put back in the hospital.

I am sorry that I have not gotten this update done sooner bit I have been busy. I put in a 60 hour week and it felt really good to work that hard. We had a great 4th of July. But we missed Roy and Beth!!!

We had a family party for Ashlee on Monday Night , We brought Pat over and Betsey,Trent and there kids came down and we all had dinner, Cake and Ice cream, and watched Ashlee open her present.

Thanks for continuing to pray and think of us. We know the lord is continuing to poor out his blessings upon us.

Monday update.

Well the news is continuing to improve. Roy was moved out of the Intermediate care unit to the surgical care floor. They have removed the cath, and IV's from hands. He still has a "pick" line in his arm and two Drains coming out of his body. The external one from the liver is still in place, and there is a new drain coming out from the surgery site to drain excessive body fluids.
Roy's kidney functions and INR are back in the normal range now we are back waiting for the liver functions to drop. Roy is still baffling the doctors with why is liver functions are not coming around. Beth says that Roy has knees again as his kidneys have kicked in and the swelling in his legs have gone down returning them to normal.

I want to thank all of you that have taken the time to drop us supporting emails, texts and comments on the Blog site. They are all appreciated, I am sorry that I am unable to reply to all of them. Please know that each one is treasured and touches us as we read them. We have been so blessed throughout this process by such GREAT friends and family supporting us. I will never be able to thank you all!!!!

Sunday Morning improvment

Well the day dawns brightly here in Idaho as well as in Phoenix. We are very happy with the reports we are getting from the doctors. Roy had a rough night of sleep but lots of improvements. His numbers this morning are Bilirudin is 17.1 Creatinine 1.5 INR 1.45 That brings his MELD down to a 25. This is movement in the right direction. Roy is celebrating that he can have clear liquids. Beth reports he savors his juice like a wine taster savors fine wine. I hope this brightens your morning like i has mine.

Sat enening updat

Well it has been a very busy week. As most of you are aware Roy has had a rough time. His MELD score yesterday morning was 40 and the Liver doctor wanted to list him for a transplant but the surgeon felt like that was premature and that he was just having a hard time getting his body working again.

Today has been much better his MELD this morning was 30 he is seeing his kidney output climb and his creatinine levels fall (a Good thing) His INR also fell (also a good thing) Although there was a climb in his bilirubin.

These evening we saw more drops in the Levels and his bowls are starting to show signs of life and we expect some major movement in the next 24 hours.

So we feel the prayers are helping but he is not out of the woods yet. I will try and Keep you posted.

I major highlight for me is that his nurse today (Jim) was my favorite nurse from when I was in the hospital and I told him that With Jim as his nurse I knew he would be getting better quickly.

Out of Surgery

He made it out of surgery about 930 pm AZ time. Dr Mulligan briefed us and he said that the surgery was very long because of the all the scar tissue. He said that he was able to get all the ducts open and has remove all the stints. Roy still has the external drain in and that will keep it for about 10 days. He will go to the step down unit for the night then moved to three west should be in the hospital for 4-5 days. The doctor said that Roy's liver had regenerated about 130 percent of the original mass.