A glimmer of hope, but it all depends on me... I spoke with the care coordinator at UCSF earlier today, and she has agreed to bring my medical record back to my transplant team in four to six months if I can lower the uric acid level, plus bring my blood pressure and cholesterol levels down. However, there is no guarantee that my transplant team will change their minds at all. If no other donor is found for my friend, then six months is just what the wait time will be. It seems like such a long time, but not compared to what the donor wait list is.... It really needs to happen before he has to go on dialysis, but we can only hope...

So now I have to lose weight, and I am not what you would call obese at all. But I need to get about 20 to 25 pounds off and two of their issues should be resolved. It beats the Hell out of me how I will lower the uric acid levels, but I will do some research on the Net.

I want to thank the folks who posted such kind words of encouragement here, and also thanks to those who wrote directly to me. I really, really appreciate the support, and I am now going to have to walk the Nutrition Straight and Narrow Path.

You know how in old-fashioned letters or books somebody would start out by saying, “I write this with heavy heart”? Well, I guess that is exactly how I feel right now, along with a great deal of anger. I got a call late yesterday afternoon from the care coordinator at the UCSF Kidney Transplant Center, telling me that they have decided to not accept me as a donor for my dear friend.

They found three things in my testing that they say rule me out, and to me, these are things that can be solved, and therefore would not be life-threatening to me. These are not major issues!
1. They found that I have an elevated cholesterol level, (230) which can be controlled.
2. They took only two blood pressure readings that day. One in the morning showed 120/68, and the one in the afternoon (immediately after I was weighed and so upset about my weight) was 130/80. I don’t think that this is a life-threatening reading! It seems that this pre-hypertensive reading can easily be controlled with weight loss or meds... Plus, my BP was so totally within the norm on my stress treadmill test, even when it was set at a 16% grade level... That is really, really steep, too!
3. My blood chemistry testing indicated a uric acid level of 6.9. The care coordinator told me that a high normal reading was 6.8. It sure doesn’t seem like I was that far out of the norm on this test.

So I am angry, and pretty devastated, to be ruled out for these reasons, without any choice on my part. I asked if this was negotiable in any way, and she said no. The team has made a decision.

Well, this decision means life or death for my friend, and it seems like I should have a vote here. I am certainly a healthy and active person, and I am quite willing to take whatever meds necessary after I donate my kidney, if I need to. I am willing to do that to give life to my friend. It seems a small price to pay on my part...

How does it feel to be rejected as a donor? It feels like shit... I feel like my body has betrayed both me and my friend, and that I have let down my friend and his family. I gave them joyous hope with my offer to donate, and with each test that I passed, the hope grew... My friend’s family celebrated on Christmas, with, at last, hopes for many more holidays together. Then, on a crisp, sunny Friday afternoon, with one short phone call, the earth opened up and swallowed that hope for life for my friend.

I am now the second donor that has been rejected by UCSF. When I called my friend yesterday, he told me that he now does not have any hope that any future donor would make it through the testing process. He said he doesn’t know if he can take another donor loss....

Hope is a terrible thing to lose...

It seems so unfair that the expectation for a donor is that they have to be a perfect physical specimen - no wonder that the record for UCSF is that they reject two-thirds of the potential donors. I could understand not being accepted if they found I have some major physical problems, but the reasons that they are telling me simply do not fall into that category.

I am going to call the care coordinator on Monday and talk to her again. I was just so stunned when she called me that I wasn’t able to think straight. I am going to ask if I can be re-evaluated in three to six months... I can lose weight and work out even harder to get in better shape and maybe could still donate... But you know what, I don’t really have any hope that they will say yes....

So here’s the scoop on my required endoscopy - Not as bad as everybody said it would be! Actually, I wasn’t at all uncomfortable and the nurses and doc were just great at the UCSF Hospital. My dear friend who will be the recipient drove me up and hung out there while I had the procedure.

I was so totally expecting the worst. But I was put into a bed with cozy, warmed blankets, and a fluid IV was started while I waited. I did have to wait quite a while, but I think that the doc had an emergency that he had to deal with. I kinda dozed while I waited, and then was wheeled into the endo room. The doctor was just great, and when he said they usually used Versed and Demerol, I asked for Phentenol ( I may be spelling this wrong). He was quite agreeable and sent the nurse for a couple of vials of it. He chatted with me about my photography and the kind of cameras I use while we were waiting. Then they started the goodies in the IV and put a plastic thing in my mouth to hold it open.

I went kinda out for just a few minutes while they inserted the camera tube thingy, but came alert while they were still pushing it down. I never felt any pain or discomfort or gagged. I watched the TV monitor and saw the inside of my esophagus and stomach. I felt it moving around in me, but it didn’t hurt. It seemed that very quickly after that they withdrew the camera tube and it was all over.

I had a small amount of excess air so was burping away like a baby. The doc said he found a hiatal hernia, which I guess that many, many people have. He said he saw a couple of irritated places in my stomach and it was obligatory to biopsy them. He said not to worry, he did not see any sign of them being malignant. The doc said that what he saw was nothing to prevent me from continuing with my donor process... So I was wheeled into a sort of recovery area and was on my way to change back into my clothes in about 15 -20 minutes.

The first thing that we did was head over across the street to Palio’s Italian Cafe in the Food Court. It has yummy stuff there, but they told me to eat soft, mild food. I had a bowl of Polenta with bread and butter. My tummy was soo happy! I’d had no food since 7 pm the night before and it was almost 4 pm...

I’ve been home a couple of hours and I can’t even tell I had anything done.... No sore throat like people said would happen - nothing. Don’t let people tell you that an endoscopy has to be horrible - it can be done very humanely and without discomfort. Anyway, one more step in the long journey to become a donor has been accomplished...

A quick update - I spoke briefly with my Care Coordinator on Friday afternoon, and she told me that she would not get the results of my Wednesday the 3rd testing until sometime later in this coming week. In the meantime, I will go up to UCSF for the endoscopy (because I have a history of heartburn) on Tuesday, the 9th.

I forgot to tell you that my Kidney Donors Rock tee shirt was a big hit there at the UCSF Kidney Transplant Center, and especially across the street at the Hospital where I had the exercise treadmill testing done.... You can check it out by clicking the Link at the top of the menu on the right.... I wear it to the gym every day when I do the treadmill. What better place to recruit healthy kidney donors than at the gym?

I did two and a half walking miles at 3.7 to 4 mph at at 2.5 to 3.5 incline last evening....

Well, here’s the update on my testing day at the UCSF Kidney Transplant Center. I have to say that they are so organized and so nice there... The two different locations are right across the street from each other, and the parking garage is right below. Parking, incidentally, is validated by the Transplant Office, so it is no cost to the donor. And parking anywhere in SF is expensive.

I had actually previewed the drive from the motel to the Parnassus location, and I’m glad that I did. I left the motel about 6:30 in the morning and it was dark, with thick fog. It was very difficult to see the street signs - I was glad I knew exactly where I was going.

The lab was opened early, so no pressure to get the work done. They drew another eight tubes of blood. However, I ran into a problem with the 24-hour urine collection. Now, this is dismaying and amusing at the same time. I was sent one sample container. Should be OK, right? Well, my dearies, my trainer has me drinking three liters of water a day. What goes in is what comes out, right? So, I had my Pee Jug filled by 11 pm that night. From 6 am to 11 pm I filled that damn thing up.

For testing, it must be a full 24-hour collection. Otherwise, it screws up the creatine and protein results, making them look low, and therefore, look like kidney disease. So, it must be done over again, and they need to send this water-guzzling mama two containers.

Incidentally, after writing the posting about having to carry the PJ around to Home Depot, etc, guess what? The cosmic joke was on me. I did have to go to two Home Depots and to Orchard Supply to look for a plumbing part. And, no, I did not carry it with me.

The exercise treadmill test went very, very well. I was able to go to a 4.2 miles per hour at a 16% grade. They said it was excellent results with normal range heart rate and blood pressure readings. I was so pleased, and my treadmill training certainly paid off.... They also did the EKG there. Really nice, warm and welcoming bunch of folks there in that unit... Great gals.... Went over on the same floor for the chest x-ray. That involved quite a wait, but was done quickly after my name was called.

Then, Yippie - time to eat. UCSF has a great food plaza right across from the hospital, so I went over and finally ate. My Grandpa used to say, when he was hungry, that his stomach thought his throat was cut. Well, I could relate to that... But the food was very good, so I sat, ate slowly, relaxed and read the paper. I had about three hours to wait before my doctor appointment for my physical. So I wandered around and looked at all the buildings. Went up to the sixth floor of the Ambulatory Care Center and saw a fantastic view of the city, but somewhat foggy. Must be incredible on a sunny day.

The physical went well, except that my blood pressure seemed a bit high to them. Their protocol is that they must investigate anything that is even a tiny bit out of the “norm”. So I have to go back up again for another series of tests to rule out any potential harm in case I have high blood pressure. My resting BP while on the table getting hooked up for my treadmill test was 120/68, which they told me was good. But it had increased by afternoon.. (Hmm - wonder if my Starbucks had anything to do with that). I was actually squiggling around on a high stool and laughing and talking with the folks there while they were taking my BP, so maybe that has something to do with the increase, but who knows.... It has to be checked out for my safety, which is the focus of all the testing. They are total advocates for the donor, and it is a separate medical team from what the kidney recipient has.

I met with the Social Worker, who was a nice gal and did her job very thoroughly. She told me that their protocol for non-family donors is to have a second assessment with a psychiatrist, so another visit has to be scheduled. I was a bit surprised, because it was not on the protocol list that the care coordinator had given me, but then, neither was some of the other testing that I will be required to do...

Overall, a positive experience and another step toward the goal of giving my friend a shot a longer, healthier life... I am going to think positive about the upcoming testing...

Wishing everyone a Happy and Peaceful 2007... I am in the final count-down for my testing date, January 3rd, at UCSF Kidney Transplant Center. I am now in the phase of specimen collecting, which is disgusting, to say the least. And discussed thoroughly in my last posting, so no need to say more. However, I will tell you that I went to a hardware store and bought a funnel....

I am now watching what I eat and all good things are, of course, restricted and a No-No. No champagne or goodies last night - I just watched Anderson Cooper on CNN. The guy has kinda grown on me since I saw him interviewed on Larry King Live. I think he is actually a good guy, not just a plastic news celeb.

Have been on the treadmill daily, overcoming - no - enduring a couple of bothersome things. As I mentioned, I had what I thought was an Achilles strain, and it is actually a medial arch strain or some kind of injury. So I went on the Net and found a site that showed how to tape it. I got the tape, but the second time I was on the treadmill, the tape rubbed two blisters on the top of my foot - the metatarsal area where I am using the tape to anchor the medial arch taping. Rats! Just what I needed... Obviously, the art of sports injury taping can’t be learned from the Internet...

So the next day, I cover the raw blisters with band aids and tape over it. Great - but when I get home, I discover another huge blister on the side of my foot. Crap - I can’t win for losing.... So, since then, I’ve just covered the blisters and haven’t taped my arch. If I don’t put the treadmill level above 5 or so, and don’t go above 4 mph, it seems OK.

Can’t remember if I told you my latest surprise - I get to have an endoscopy test. I’m telling you, they are determined to get me from both ends! This glorious procedure is scheduled for January 9th... Somewhere in between or around, will be the CT Angiogram.... It ain’t over till it’s over, as they say about baseball games and kidney donor testing....

Being a kidney donor involves a lot of time, energy and money, as I am finding out. I got nailed for $1,000 deductible on my private insurance for the required mammogram and colonoscopy, but a friend and great supporter has generously offered to cover that for me. What a wonderful person - I am eternally grateful to him, and it surely restores faith in the kindness and humanity in this world...