Changing my UAMS listing

When I was first listed at UAMS, I agreed to go on the inactive list so long as I had some residual kidney function of my own. The idea was to maximize the use of my own kidney before I got a transplant, but hopefully before I needed dialysis. I had a call today from the the UAMS pretransplant coordinator. She called to say that she had gotten a call from the coordinator at Barnes (St. Louis), and that had jogged her memory about whether I was ready/interested in getting actively listed. We talked about my changed symptoms--low energy level, occasional nausea, bad taste in my mouth that's almost constant, inability to eat much protein--and she said that she thinks I need to go active now. Of course she kept telling me that she could make no promises about how quickly I could get a transplant, but she said that she thought it would be very soon, like maybe around 3 months, and certainly less than 6 months. She said that our goal needed to be to go on the active list before I need dialysis, and that way I may be able to skip dialysis altogether. One of the things she told me is that even though I am in a "holding pattern," (not needing dialysis), that if I get a cold or the flu, the stress on my body will throw me over the line and I'll need to start dialysis. Then the transplant would have to be put off until I could regain my strength and get the dialysis to straighten out my body chemistry. So...I think I'm ready to get actively listed, and get my bag packed. I went by the doctor's office today and left a note for him, saying that I want to go on the active list. That decision is mine to make, and does not require permission or anything else from him, but I don't want him to be blindsided.

The stars must be aligned properly, because today I also had a phone call from Baylor in Ft. Worth. The coordinator there told me that she was writing to UNOS (United Network for Organ Sharing), to find out how much credit I'm entitled to as a prior donor. The credits are used to move people up on the waiting list. She said that she had never had a patient that was a prior donor, and did not know exactly what UNOS would say, but she did say that it would improve my ranking on the list.

Of course, transplants are not without risk. The immunosuppressive drugs are powerful and have serious side effects. But being on dialysis is pretty awful too, and there are lots of side effects from it, especially if you are on it along time. And staying in my present condition is not an option because my function will eventually disappear. I'm thinking that I've had another slip downward because when I got my ProCrit (blood hormone) shot last month, they had to increase my dose because my blood count was down, another sign of decreased kidney activity. Of course I want to be well and feel strong again, and a transplant is the way to get there, although the road to recovery (as with any surgery) is not without some pitfalls.  I'm planning to call UAMS on Monday, after I get back from my weekend with Janet. Hopefully by then I will have heard back from the nephrologist. The UAMS coordinator said that activating my listing will take 15 minutes, so essentially when I call her, it'll be done.

Yesterday I got a call from Heather Garcia, pretransplant coordinator at Barnes, setting up my pre-transplant interview with them on June 4. So I'll be starting that process soon.

It's My Birthday!

This year, more than ever, I'm glad I'm alive to celebrate another birthday. And I'm not on dialysis. My next doctor's appointment isnt until May 20, so I have a 2 month reprieve. We're hoping to take advantage of the reprieve by going to Hilton Head Island for a week in May.

Ramiro gave me the iPad 2 for my birthday! I have an iPad 1, which doesn't have a camera, so this is an upgrade for me. The iPad 3 has come out, but it isn't enough different from the iPad 2 to warrant the extra expense.

I found out yesterday that I've been put on the transplant list for Baylor (Dallas). I've called Barnes Hospital in St. Louis and requested an evaluation packet so I can start the process there. I had hoped to avail myself of the national kidney registry through Barnes as a way of getting my sister-in-law Janie to donate a kidney, but last night she had a TIA (trans ischemic attack), so that rules her out completely. She was the last person that was a possibility for me; everyone else had been ruled out for health reasons of their own.

My friend Debbie Phelan has been in the hospital over a week in Temple, TX, with pretty serious pneumonia. Today we found out her lung biopsy showed no signs of cancer, just serious infection. She will have thoracic surgery tomorrow to scrape out the lung infection. She has had a really serious illness, and it will be quite a while before she is fully recovered. If they can't get her up and walking soon she may have to go to rehab.

I'm reading a book called Still: Notes on a Mid-Faith Crisis, by Lauren Winner. She converted from Judaism to Christianity, then experienced a crisis of faith after her mother died and she divorced her husband. I am finding that it really resonates with me, after I had a period of losing my faith when I first came to grips with my illness. I don't think the book has any answers as to how to find your way back, it simply looks at how she dealt with it, is dealing with it. I find that I am able to pray again, but my concept of what God cares about is very different now than it was before. Before my diagnoses, I believed in the concept that because God cared deeply about what happened to each individual in their earthly lives, you should pray to God for help with whatever troubled you. I don't feel that way anymore. I do believe that God wants us to be saved, and wants our spiritual souls reunited with him after we die. But I feel now, that whatever happens to us while on earth is not so much of a concern to God except as it relates to your spiritual life. So getting very sick is of no concern to Him, unless that sickness turns you away from Him. I don't believe that serious illness, or other earthly problems are God's way of testing our faith. After all, he knows whether we have it or not, and if we don't we don't and if we do, we do, so what's to test? And to what end? I guess what has fallen away for me is the idea of God as a loving father. A good earthly father would not test a child, would not withhold help that a child needs desperately, would not make a child deliberately sick just to see what that does to the child's love for the father. So why would we attribute those traits to God? It makes more sense to see trials and tribulations as mere by products of being human. I thank God every day for my continued good health, I thank him for every day of being alive. I am able to pray in praise and thanksgving, but not so much for petitioning for myself any more.

Potential Live Donor

I had a call this morning from Terry Seyler, one of my quilter friends who now lives in central Texas. She called to ask about being a live donor, saying that she's been praying and thinking about it for weeks. Everyone else that's volunteered has been ruled out, so this gives me hope again. She said she's type O blood, which is great because that matches me. She doesn't have diabetes, nor does it run in her family. Her mother is still alive, although her dad died of cancer about 7 or 8 years ago. I think it was liver cancer, but can't really remember. She said she will call Sue Weeks, UAMS live donor coordinator to start the process. Terry also said that she's on the national bone marrow donor list; that could mean she's passed a lot of the initial tests for being a donor. I hope so. Her call made me teary and grateful, like all these offers have done. The idea of someone offering to give me a second chance at life is so overwhelming that I cannot describe it in words, except to say thank you, thank you, thank you.

I also had a call today from Bruce Furbush, who volunteered to be tested but was told that, at age 65, he's too old to be a donor. Anyway, he called to find out how I was doing, and in that call he told me that he was surprised at the level of detail that the donor questionnaire went into. He said that there were some questions that he was not able to answer, and had no way of knowing the answer to. I asked him to give me an example of such a question. And he said "Well, one of the questions was for me to state how old YOU are. I told them that was a closely guarded national secret and I wasn't sure you would tell me even for a transplant."

Now the Waiting

It's been almost a week since I got my listing letter from UAMS. I have not yet heard from Baylor. I'll see Dr. Moulton on March 12, and I'll talk to him about getting listed at Barnes (St. Louis).

I feel OK most days, other days I feel unwell. That's the best way to describe it. Nothing specific feels wrong or bad, I just don't feel good, don't feel like I used to. Guess it's best described as malaise. Of course there are days when I feel nauseated, or get bad breath, then it goes away and I feel good again. So long as the good days come, I can live through the bad ones.

I had a message from Bruce Furbush, my friend in San Diego, CA. He said that he contacted Sue Turton Weeks, the living donor coordinator at UAMS and that she had sent him a long questionnaire. Then he said that he was told that he was too old. He's 65. But then he added that he "wasn't sure he would have gone through it if he had been accepted, but at least he gave it a shot." I think I would have been really sad if I knew he was a good candidate (I know we have the same blood type) but he simply decided not to go forward with it. Maybe it's just as well he was ruled out. So, that's 7 people who expressed an interest, and all have been ruled out. The waiting continues, until I can get a transplant.

We are meeting Ronnie and Gail Lane for dinner tonight.We're going to the Corner Cafe, which serves prime rib on Friday night), and we loved going there with them before all this happened. We'd have prime rib and a couple of glasses of red wine. Now they've moved away to Colorado (there here just this weekend) and I've gotten too sick to enjoy prime rib. But it will be good to see them again.

I spoke to my brother Felipe last night. He asked me about my dialysis port, and was surprised that it was not like dad's access port (fistula) in his arm. When I described how peritoneal dialysis works, he said it sounded really scary. If it's scary to hear about, think how scary it feels to be facing it!

I'M ON THE UAMS TRANSPLANT LIST!!!!

Today I got my official letter from UAMS stating that I am on their kidney transplant list effective January 17. I am listed as inactive because I still have some residual kidney function. When Dr. Moulton (my nephrologist) determines that my function has again declined, we are to notify UAMS and they will change my status to active, which is when I will be in active consideration for a transplant.  The letter is a great next step for me, and I thank God that they decided to list me.

PD Catheter Surgery

Yesterday, January 18, I had surgery at Washington Regional Hospital to implant the peritoneal dialysis catheter in my belly. Dr. Hudec did the surgery. We were told to be there by 6:30 and my surgery was scheduled for 9:30, but about 8 am. we were told that Dr. Hudec's first surgery had been cancelled, so I was next. The procedure took about 40 minutes, and I went home by noon. My sister came to the hospital while I was in surgery, and then helped get me home. Ramiro drove me home and she shopped for some jello for me to have later. I slept most of the afternoon, and when I did wake up my sister and I played Words with Friends--me on my iPad and she on her new Kindle Fire. Since I have a Kindle app on my iPad, we were able to download all the books she now has on her Fire, onto my iPad. Great way to share. We need to get her a Nook app on her Fire so that she can download my Nook books to her Fire.

I did not sleep well last night after the surgery. I had to get up to urinate once an hour like clockwork, starting at 10 p.m. I think it was all the IV fluids I got during surgery. I took half a hydrocodon pill this afternoon, and slept for about 4 hours. I feel much more rested now. 

I sent out a bunch of emails to friends and family telling them about the surgery, and it's been fun reading their responses today. Poor Wayne Rosing--he sent me an email teasing me that he would refer all maritime questions to me since he considered me a "port authority."  (I had described the catheter as a dialysis port). This was followed by an immediate email apologizing for his joke, and telling me that he was not making light of my medical situation. Of course I had not taken offense; I am very familiar with his brand of humor and told him so.

My friend Bruce Furbush made a passing reference to being curious about being a donor. I referred him to the United Network for Organ Sharing (UNOS) website, and gave him the phone # for Sue Weeks, the living donor coordinator at UAMS. I hope he follows up; that would increase my chances of a living donor, since he said he is a type O blood type. Funny, that all the donor volunteers have been women up to now. Bruce is the first man to even contemplate it.

UAMS Listing Decision

On Friday, January 13, I had a call from Fadell Powell (Pre transplant coordinator at UAMS) to say that the transplant committee had been able to meet, and had voted in favor of putting me on the transplant list!!!!! The official listing will take place Tuesday, Jan. 17 (Monday is MLK holiday at the state). So, my waiting time will begin official from that date. However (and there is a always a however), I will be listed as inactive for 2 reasons:  (1) I still have one potential living donor candidate--Kathleen Butler--in the evaluation process; and (2) I still have some residual native kidney function and Dr.Abul-ezz, the transplant surgeon, believes I ought to get the most out of it that I can before I face all the side effects of the anti-rejection drugs. As soon as my nephrologist notes a downturn in my function, I am to call UAMS to let them know I want to be on the active list. Hopefully, I would be transplanted soon after that. If Kathleen turns out to be a viable candidate, then the decision to go forward will depend on her schedule, mine, my kidney function, etc. It would be nice if I could avoid dialysis altogether and go directly to a transplant.