A New Kidney Finally.... But Will It Work?

After years and years of waiting, my friend agreed to receive a "high-risk" kidney from a cadaver. Years of waiting, and hoping, and suffering through dialysis three times a week for four hours each time.  He had an enormous fistula on one arm that failed, and had to have surgery to create a fistula on his other arm. Two different dialysis centers and countless numbers of dialysis technicians, many who were competent and caring, and several who were cold, incompetent and should not have been in the profession. Countless incidents of passing out in the chair after dialysis with scary low blood pressure and having to wait another hour until his BP was sufficient to so home.  Most of the time feeling like shit when he came home and falling asleep without dinner. Constant decline in his energy and health, in survival mode with no joy of life or living.

Another three years of waiting, and finally the call came that a kidney was available. We rushed up to SF and waited throughout the day and night for the kidney to arrive. In the wee hours of the next morning, they came to the room and took him into surgery.

Some four hours later, I was told that the surgery was successful, but he remained in the Recovery room for almost six hours. He had a difficult few days on IV anti-rejection drugs and one incident of "hospital psychosis" from the steroid he was taking, where he "wandered' in the hospital and down several flights of stairs, and fell, breaking his foot and scraping, cutting and scratching up his legs and feet. This complicated his release and he was scheduled to go into a convalescent home, instead of going home as he should have been doing.

Then, the new kidney was a "sleepy" kidney and functioned minimally. He had to continue dialysis in the hospital, which was so disappointing to him and to me.  He had Lasix dripped into his IV to try to stimulate the kidney, to no avail.

It was decided to release him yesterday to the convalescent center, but they also decided to do a kidney biopsy. The wanted him to leave before the biopsy results were available, but I said NO. I felt that he should wait, in case there was a problem and we would have to turn around and bring him right back to the hospital. The agreed that he could stay until that evening and the results were known.

That was a good decision and I am glad that I spoke up, because they came back with the results that, in spite of all the anti-rejection meds, that the kidney was inflamed, which was he beginning of it  being rejected. They said this was completely unexpected and they were really surprised.

So he has to stay another few days with IV of extremely strong anti-rejection drugs. The have assured us that this is not uncommon, and they have very positive expectations that the new meds will work and all will be well. He is on IV for six hours with a series of three treatments right now.   Hoping that this ends well, but... It remains to be seen how this story ends.....

UpDate

Update: My friend is now on dialysis and doing well. He is no longer in touch with the UCSF Kidney staff.  It was just one big disappointment to all of us. His insurance, PacifiCare, cancelled his policy, and he is now on Medicare. I guess everyone with End Stage Renal Disease automatically goes on Medicare. Maybe we can explore other ways for me to donate now, not going thru UCSF.

Time marches on

Wow - a whole year since my last post... The person who I was going to donate a kidney to is still doing pretty darn good, no kidney needed yet - and he is not on dialysis. I still stand ready to donate to him, but UCSF Medical Center has totally disappeared off the radar screen. As soon as their study was completed, he never heard another word from them that they were still trying to find a donor for him. Guess we will wait and see how his health does. If things go bad, I don't think he will turn to them again, and maybe some other facility will OK my perfect-match donation...

Wow - Hard to believe so much time has passed and still nothing. USF seems to have just abandoned the effort . My friend hears nothing from them. To update, during the testing, it was discovered that I have a thickening of my left ventricular wall, so the kidney transplant team decided I could not donate. In spite of my passing all cardio testing, particularly the stress treadmill test with great results.

But, I was told that maybe twenty years down the line I might have a problem and what if it affected the remaining kidney. Hell, I've never had a problem with my kidneys and there is no kidney disease in my family history. Why would they think if I had a problem with my heart that it would affect my kidney? I am as healthy as a horse and have never been sick in my life.

I took the results of my echocardiogram to my family doc, and he said it was ridiculous to deny me as a donor based on what he saw. The thickening is miniscule. He then referred me for a consult with the Head of Nuclear Cardiology at my medical group. This doc looked at the echocardiogram and said he saw nothing that should prevent me from donating a kidney. He recommended that my friend go somewhere else to have the transplant done, 'cause he didn't think any other organization would reject me as a donor.

So, here we are, a year and a half later. My friend has been waiting four years. And here I am, a perfect match in every way for him. What a ridiculous waste. All so somebody can cover their asses for liability purposes... And my friend's insurance won't cover him going anywhere else.

I think I can, I think I can...

I feel kinda like the Little Engine That Could story. Here is the latest chapter in my trying-to-be-a-donor story, or is it my donor ordeal? I was scheduled for testing on the 6th and 7th of June. Had to do another fasting 24-hour urine collection and have labs done first thing in the morning on the 6th, so I reserved two nights in a motel, the Castle Inn, near Broadway and Van Ness. Decided to stay there because it was close to the UCSF Mt. Zion Medical Center, where I would be on Thursday. My recipient drove me up to SF so I wouldn’t have to deal with the impossible parking situation at the UCSF Medical Centers, and all the accompanying hassle that would send my BP soaring. My higher blood pressure readings at UCSF (in spite of my own doctor saying normal) are what all this additional testing is all about...

Castle Inn has free parking, which is almost unheard of in SF, plus free wifi. It’s not luxury, but is clean and well-managed. I grabbed a taxi out of there about 7 on Wednesday morning and it was just a few minutes over to the Parnassus facility and about $13.. Went into the lab at 401 Parnassus and turned in my sample and had blood drawn.

In spite of the written instructions that said the urine specimen would be good for two days without refrigeration, the lab tech got all in a tizzy because I hadn’t refrigerated the sample jugs. (Jugs? Yes, I peed two jugs full. Did I ever drink the water. Yikes!)

I told her if the samples should be in the fridge the whole 24 hours, then the instructions should say so. I asked her what about the samples that people send in via FedEx? They are always at least overnight without refrigeration. She didn’t respond and said, disgustedly, that maybe they will be able to get something out of my samples.

So I leave there and head across the street to #501, where I had my echocardiogram. Very interesting procedure that took about an hour. I was laying on my side and watching the monitor screen, trying to decipher whether all the lup-dups and varying waves were indicative of any problem. I tried to pump the technician for any hints, but she remained quite non-committal, which is exactly what she should have been. But, obviously, any donor has got to be curious about their results, right?

When I walked out of there and down the street to catch the jitney over to Mt. Zion to have the 24-hour blood pressure monitor put on, I checked my cell phone - there was a message from my transplant coordinator. She apologized, but there was a problem with the insurance authorization for my testing and all testing was cancelled. CANCELLED!! By that time I’m already on the jitney and heading for Mt. Zion. I tried to call her back but just got her voice mail. Yee Gods, who is going to pay for the stuff I already had done? (Found out later that the insurance company will cover it).

The checkout time for the motel was 11 am, so I jumped out of the jitney and grabbed a taxi and rushed back to the motel. I went flying in to the lobby and asked (read begged) if I checked out immediately, would I have to pay for that night that I had reserved? Motels always require cancellation ahead of time or you are charged for the night, as we all know. The guy at the desk said he’d have to check with the owner, but he thought I’d have to pay. So I checked out and called my friend, who was expecting to pick me up the next day. He cancelled plans and said he’d be there in an hour.

While I was waiting on the motel steps for my ride, the desk guy came out and told me that the motel owner said that, because I was a kidney donor, she would not charge me for the night, and they credited the amount back on my card. I am very grateful to her and I can highly recommend the Castle Inn at 1565 Broadway, a half block from the intersection of Van Ness and Broadway, as a great place to stay if you are looking for basic lodging in SF. My room was large, spotlessly clean, with a refrigerator and microwave, and free parking.

I am now waiting to hear from the transplant coordinator as to when they will schedule the rest of my testing...

I think I can, I think I can, I think I can... v

The Eyes Have It...

Quick update.... The Kidney Transplant Coordinator at UCSF requested info from my eye doc, Peter Taylor of Family Eyecare Center in Campbell. He responded the same afternoon that I contacted him - How cool is that?

Dr. Taylor confirmed to them in a letter that my most recent eye exam showed no indicators of anything that would indicate kidney disease, or any kind of health problem. When I was at UCSF for my testing in January, one of the docs told me that the eyes are the windows to the kidneys. So this is a bit of very good news in my attempts to be confirmed as a donor for my friend.

My next two-day series of tests are confirmed for June 6th and 7th in SF, mostly at the Mt. Zion facility, I guess. So I have to ante up for a motel again - I found one that is not inexpensive, but it is less than two miles from the Mt. Zion hospital.

I'll write more after my testing.....

Back in the Race!

Oh Yes - I am back in the race again, after stopping out for a mechanical, to use cycling terminology.

Just got called by the UCSF Transplant Center Coordinator, and they are willing to continue my testing to become a donor for my friend. My lab tests showed such improvement that they are willing to continue. I have to schedule two days worth of testing, such as echocardiogram, a twenty-four hour blood pressure monitoring, twenty-four hour urine collection, and bring them the results of my latest eye exam. Specifically, what they want from the eye exam testing is to see that the blood vessels in my eyes showed no damage from blood pressure. As the doc I saw up there last time said, “ The eyes are the windows to the kidneys”.

So, here we go again, and I hope that my body tells them that I am healthy and ready to donate. Keep your fingers crossed for me!

One Small Step...

OK ... Keeping my fingers crossed once again. I spoke with my Transplant Coordinator two days ago. I told her that my lab results are greatly improved and asked if she would be willing to present it to the Transplant Team again. She immediately said she would, so I faxed her the three pages of lab work. It may be a week or two, or longer, before I hear back from UCSF...

So, once again, we are practically holding our collective breath and hanging on to hope. Since my testing, my friend has had one male donor whose blood test ruled him out immediately, one female donor who procrastinated so long on taking the first step of preliminary lab work that we finally realized that she did not want to participate and didn't seem to be able to say that to my friend.

Then another donor stepped forward, who immediately did his labs, and then got in an vehicle accident that perforated his spleen or something, and now he is out as a donor. And initially, my friend's sister went thru all the testing almost to the end when they found a problem with one of her kidneys, so she was ruled out, and that's when I stepped up... Whew ... what a long struggle, full of ups and downs of hope for my friend. Maybe this time we will succeed.

If at First You Don't Succeed...

Well, it has been almost three months since I went through the testing procedures at UCSF to be a kidney donor. At that time, the transplant team was concerned about my cardiovascular risk and uric acid level being high normal. High normal is 6.8 and mine was 6.9

In the past months, I have lost weight, been eating healthy (gave up junk food), continued with my exercise program, and gone on cholesterol-lowering meds. I had a blood panel done through my local doc last week and the news is really good. My cholesterol has dropped 96 points and HDL is good, as well as LDL. Triglicerides are normal, and my uric acid level is 5.8 which is in the normal range. All very good news toward my donor goal. My blood pressure is now in the completely normal range...

In the meantime, my friend has had a third donor who didn't meet the preliminary requirements, and now a fourth donor has just submitted her blood for testing. This is a tedious, and discouraging process for all involved. Now I will have to try to get my transplant team to reconsider me again for donating. My transplant coordinator told me that there is no guarantee that they will even look at my blood testing results again.

It's kinda weird that my transplant team and even my transplant coordintor have never even met me - I haven't seen any of them. I just have the feeling that if they met me and saw how athletic and robust that I am, it would alleviate some of their concerns, especially with my new test results. I am going to try to present my new "self" and test results to them the first week of April... I am really hoping for a face-to-face meet with these folks... not likely, I know. But at least to speak with my coordinator in person.

Everybody send positive thoughts and energy that this time it will be green lights and a go....

A quick update on what's happening. My friend has had another disappointment. The new potential donor's blood did not match and he is out of the picture. Right now, there isn't anyone else who has stepped up. So I am still planning on going back to my transplant team in another two or three months to see if they will reconsider me.

I must admit that I slacked off from the exercise program for a short while - I was out-of-town for two weeks and then back and then gone again for a week. So I am now back on the exercise track, and am trying to get back to the water guzzling. My nutrition has been OK, and I am maintaining the 7-8 pound weight loss.

I go in next week to have a blood panel done, and we'll see if the slightly elevated uric acid level was a result of the heavy exercise that I did, or if it shows up again. I'll let you know when the result comes in to my doc a week or so after the draw...

Well, here’s a long overdue update on what I hope is still progress on being a donor. Sorry that I haven’t posted in a while... I am now on meds to lower blood pressure and cholesterol. After the endoscopy at UCSF, it was found that I have an esophageal problem, so I am now on meds for that, too! I am told that it is inconsequential to donating - hope that is true... OMG - here I thought I was the most healthy (albeit a tad overweight) person. So I’ve lost about eight pounds, and am still on my exercise program, although a nasty case of some unrelenting gastrointestinal virus had sidelined the exercise for a couple of weeks.

My friend has found another donor possibility. This donor guy is just starting the long, and rigorous testing program, so he is still an unknown, and will be for a couple of months. If he is successful, then that is just absolutely great. If something is found within him that is a problem, then that may coincide with the same time that I may be able to ask to be reconsidered. So I am keeping on keepin’ on with my program... One factor that we already know is that this donor guy has some kind of genetic, inherited blood disorder that is supposed to be minor and of no consequence to being a donor, but I know from experience that when it is scrutinized by his transplant team, it may be a different story....

I received a most endearing telephone message from my friend on Valentine’s Day, asking me to be his Valentine, and telling me how much he loves my friendship, and how much he appreciates my long support of him and everything I’ve done to try to stay in the donor program. I was very touched....

He is such a wonderful person and so much deserves a chance at life. I’ve told you before that he is just like a brother to me, and I am so proud that he is part of my extended family. Thanks again to everyone for being so supportive, and keep on thinking positive thoughts for my friend and for my donor goal....

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...

OK - The big Fed Ex Info package arrived yesterday with everything I’ve always wanted to know about my big appointment day on January 3rd. Widgets and labels and instructions - Oh My! And Yes - things that go bump in the night....

First out of the plastic mailer was a bright rust-colored plastic thingy that looked like a huge pooper scooper, with carrying handle, for my cat’s litter box.

Ah Hah - it’s a fold out jug, a sample container, for me to collect urine for 24 hours. It has an opening with a screw-cap on it - just like a water bottle. No funnel included... Hey - I’m a girl. It’s gonna be rather like a game of skill, hitting the hole. How good is my aim? Play the Aim Game... Maybe it a new game for Xmas - Hit the Hole in the Jug Game... Batteries Not Included. Hmmm - I can see that guys have an advantage here, since they have a pointer. One gallon size it says. I drink three liters of water a day.

So what do I do all day long? Carry the damn jug of pee around with me, so everytime I gotta go, I can try to hit the hole in the jug. Can you see me carrying the orange Pee Jug into Home Depot, and into Safeway, and into Barnes and Noble? Maybe into Subway for their $2.49 lunch special. “Did you want something to drink with this?” Shall I carry it to the gym and sit it down beside the treadmill? Good thing I don’t have any air travel scheduled for collection day - TSA just wouldn’t understand.

Next out of the early Xmas package comes an easily identifiable object, but with quite disgusting possibilities - nay realities... It looks like a liner for a kids potty chair without a hole in it - stark white, shiny clean. Yeech - it’s the container for collecting stool samples... Read the directions... OMG - I have to do it three times! OMG - that means I have to wash out the poop in order to re-use it? Holy Crap (‘scuse me)... Gross-out, totally. And I think it’s bad cleaning the litter boxes! Hell, I should make my cats clean this to get even...

Oh No, it gets worse.. Another zip-lock plastic package with two wooden popsicle sticks and these little packets that look kinda like match books. Wait a minute! TWO sticks? But, I have to collect THREE samples! “Using the applicator sticks provided...” the paper says. Oh No - No, no, no - I am not gonna wash the poop off those wooden sticks and re-use them... But wait, on second look, there are only two packets,,,, Whew, I guess I only have to do two samples, in spite of what the directions say

And lastly, sheets and sheets of paper directions and requisitions... Be there by 7:30 in the morning - Nothing to eat or drink after 10:30 the night before. Park in the huge public parking garage that is somewhere in the vicinity. Run to the Lab on the first floor of some building a couple of blocks away for urine and blood testing. Run across the street for the Stress Treadmill test at 8:00 - be there 15 minutes early... Hmmm.. Kinda tight schedule, isn’t it? I have 15 minutes to get the Lab staff into action, pee and give blood, and get outta there for the treadmill test. Still fasting, according to the instructions.

Then I run up to the 4th floor of that building (I guess) and get an EKG. Next I run down to the 3rd floor for a chest X-ray. Then I run over and up to the 3rd floor of the Kidney Transplant Clinic for a 2:30 appointment with the Transplant Physician. Next I run to some other office on the 3rd floor to meet with the Social Worker. The Social Worker and I chat, I guess, and she/he has to decide if I am nutso, or have been coerced, or am being paid for my dear kidney. Since it’s none of the above, I assume our session will be short and sweet.

And then, I hope to Hell that I can get something to eat!!

Happy Holidays!

Can't resist making an elf of myself.... Click on the Happy Holidays above to see me do the donor dance.... Kidney Donors Rock, ya know...

Workouts going well.... Managed to lose five pounds as a side benefit of my time at the gym. Or being totally full of water all the time... Now I'm waiting for the big packet to arrive from UCSF... Will have all my instructions and a schedule for my big T-Day on January 3rd. I may call them this afternoon to make sure they don't forget! Do they "forget" this kind of stuff? Who knows, but it is Holiday Season and people may be taking time off from work. I'd feel like a fool if I just sat around and waited and it never arrived....

I'm dealing with an unexpected area about being a kidney donor... Out of pocket $$$$ cost to me... I was told be UCSF that I had to have a mammogram and a colonoscopy before I would be approved as a donor, and that it was at my expense. Everything else is covered by the recipient's insurance company. Well, it turns out that I have a $1,000 deductible on my new insurance, and of course, being new, it hasn't been met yet.

I was absolutely astounded at the charges for the colonoscopy - I've never had one before. A total of $6068.00 - OMG - Unbelievable! I guess that I will owe $1,000 of it, but honestly, I don't trust that Blue Cross won't find a way to wiggle out of paying some of it... I'll betcha a dollar that I end up paying a bunch more than that...In any event, I don't exactly have $1k floating around in my jean's pocket. As a single woman in the rich Silicon Valley, I am struggling to survive, like all the other women here that I know...

Of course, I would do it anyway.. Absolutely... If I had known about the cost ahead of time, do you think I would not have offered? Nonsense, of course I would. My friend's life is worth more than a piddly $1k in the grand scheme of things... No problem - I'll deal with it.... I'll just keep dancing!

OK, back on track, or should I say treadmill, again. Pain-free workout yesterday, with no after effects on my silly Achilles thingy. Still in the holding pattern for the final testing day.

Thinking about how I will modify my Holiday eating and drinking patterns... Moderation, I guess, is the key word for the Christmas feasting. I'm told to watch the protein and alcohol consumption so I will have acceptable creatanine levels, which impact the GFR levels. I'm told that the GFR levels have to be normal or it's a no-go for the donation. Glomerular Filtration Rate is one test to measure your kidney function, and it can be done from a blood sample. I think that the UCSF Kidney Transplant Center also uses other, more sophisticated tests, too, which I will obviously undergo. However, I still can't figure out why they will want to do an endoscopy... Oh well, da ankle bone connecta to da thigh bone thing, I guess...

In any event, no party-hearty New Years Eve for me this year! Not with final testing day on January 3rd...

Not much action going on the past few days. Literally. Damn me - I just had to crank up the incline on the treadmill and step up the speed last Monday evening. Dumb and dumber... I stressed out my Achilles again (!) and have had to lay off for a few days. Dammit - I was just trying to get my heart rate up. I know it’s a good think that my heart rate stays low when I exert myself, but I am always thinking about the stress treadmill test that I will do at UCSF on Jan 3rd. I want to be able to hang in long enough to pass with flying colors...

The only other stress treadmill test that I’ve done was about 15 years ago in Mountain View, and they were brutal with increases in speed and incline. Even tho I was jogging regularly back then, they ran me practically to falling down, gasping exhaustion. So shall I expect the same at UCSF?

I don’t know. It’s totally an unknown, so I want to prepare for some quick, grueling in intervals on the treadmill. It isn’t called a stress treadmill test for nothin’, right? It’s not gonna be a quick, casual stroll in the park, for sure...

The information that two-thirds of the potential donors don’t pass the physical requirements weighs heavily on me, all the time. I’ve already told you that I am not in “athletic” shape right now. So, what if I screw up and it prevents me from being a donor to my good buddy? What if all this turns out to be for nothing cause my BP, or heart rate, goes too high on the treadmill? What if they find some other crap going on that I know nothing about and have no indicative symptoms?

My friend and his family are so overjoyed at this life-saving offer of mine, to them it is a miracle. But Holy Crap, what if my body lets them (and me) down? They’ve already had a devastating let-down when his other donor was found to have kidney stones. Tiny, little grains, but enough to prevent the donation. Jeeze, I usually have elevated cholesterol - will that be enough to dun me?
Or what if my GFR, a measure of kidney function, is not up to par? I can’t imagine that other donors don’t go thru these same thoughts as I am...

One good thing is that I had an EKG last week and it turned out absolutely normal . Whew - what a relief. However, I had a none-fasting blood draw, and as I reviewed the lab results, I saw that my estimated GFR was low.... Yikes! I was freaking out a little bit, and then realized that when UCSF did the labs on my seven vials of fasting blood draws last month, they must have run the same tests and levels, and found them OK. Otherwise, I wouldn’t even be this far... I would have been ruled out right away, I think. OK. OK. All is well so far.

But I am gonna keep training and watching what I eat and, of course, guzzling, guzzling that nasty, old, life-saving water. My kidneys must think they are somehow in somebody else’s body already, with all the work they are having to do for the first time in their little kidney lives....

Three liters of water a day - try for four. OMG - I do not like water. You know what WC Fields said about water, “ I never touch the stuff, fish f---* in it.” I must say that I agree. However, my trainer, Pete, says at least three liters a day. So how are my days going? Drink, pee, drink, pee, drink, pee, repeat as needed... Oh yes, I exercise, eat, sleep and try to do some normal things in between, ya know, like working...

It seems like I have entered this vacuum in time. Donor Time Warp. Is this real and really going to happen? Absolutely no word about the kidney donation or any communication from anyone. I am in the Donor Black Hole of Time, I guess, waiting for D Day. Or rather waiting for T Day - the final testing on January 3rd. I was told that I would receive an information packet about two weeks before the test date, giving me all the stuff I need to know and do. Ya know, sweet little chores like collecting pee for 24 hours and stool samples.. Yeeech....

So I follow my program every day, and am on the treadmill, or the bike or lifting weights and feeling a bit of fatigue... Muscles still cursing at me, especially my calf muscles. Walked up a freeway overpass yesterday and felt like I was riding up Alpe d’Huez. Oh Yes, I do need a bit of work to get in shape, don’t I?

So I am training on a daily basis - working my fanny off. You’d think I was gonna run the New York Marathon instead of donating a kidney. My buddy, Pete, has offered to be my personal trainer. I’ve known Pete for a long time - he was my first spinning instructor, and he’s run boot camp workouts. He’s also now a manager for Club One - they have great health clubs... So I am reporting in to Pete every night via email about what I’ve had to eat, how much water I drink, and how my workouts are going. Stretch out, he keeps telling me.

I am working out at least five days a week, doing cardio plus weights. Before, I was spinning twice a week and not much else, so this is a killer for me right now. I’ve been on this program a little over a week - my muscles are moaning and groaning, especially my calf muscles. My program is to keep a steady heart rate - later we’ll add intervals, Pete says. So for now, I’m 45 to 60 minutes on the treadmill, and then working out on the weight machines for at least another 20 - 30 minutes. Man, I didn’t realize how time-consuming this would be, by the time I drive to the gym, stretch out, work out, stretch out and drive back home.... This is like a part-time job! I told one of my friends that all I do is exercise, drink water and pee....

But, I can feel my body getting stronger already. My measuring gauge is going to be the stairs up to my office - I’ve been panting like a dog by the time I get to the top of those damn stairs. The day I arrive at the top, breathing easy, is gonna tell me that I’m back in shape, and ready for the stress treadmill testing ... Motivation? It’s not difficult, I just keep telling myself that I’m doing it for Chris.

Somebody asked me about what people say when they find out that I’m donating a kidney. Almost everybody is really supportive, and think it’s terrific. I’ve only had one person say something weird - she said something like, “Well, what if he dies, then you will have just wasted a kidney”. Jeeze, I could hardly believe what I was hearing... Being civil, I just said, “That was not one of the considerations in my decision”. Hell, any kidney recipient could get hit by a truck, or by lightening, after the surgery and not survive. It’s interesting how many people say that they might donate to a relative, but they would have to think a lot before deciding to give a kidney to a friend - they aren’t sure that they would do it for a friend.... Would you? Would that make a difference?

Why and how did I decide to become a potential kidney donor? I have to tell you that it was not a long and nerve-racking decision process. For me, I just knew immediately that it was the right thing for me to do. No hemming and hawing, or vacillating around. When I heard that my friend’s sister had a problem with her kidneys and got rejected as a donor, I immediately said, “You can have one of mine”. And that was the right and true thing for me to do...

The only nerve-racking thing for me is whether I will pass all the rigid and rigorous physical exams that are required by the UCSF Kidney Transplant Center. More about his later...

My friend is a guy who is just like a kid brother to me. Just one of the greatest, sweetest and most genuine people on this earth. One of the good guys, for sure. So his younger sister had gone through the long process of physical testing at UCSF, and in the very last test for kidney function and kidney health, it was discovered that she had a problem and was not eligible to donate. This was devastating news, because his other family members have various problems that prevent them from donating. So there he was, with only a small percentage of kidney function left and no donor.

The sad reality is that the shortage of kidney donors is horrific. I have to tell you that I had no awareness about these kidney donor issues, or of kidney disease in general. My efforts have been with the cancer survivor community, and that’s where I have put all my energy and fund-raising efforts. So I’ve been doing a ton of research on the Net, and the facts are shocking. From what I read, there are way over 62,000 people in the US who are waiting for donors. The wait for a living donor, or a cadaver donor, is about 5 to 7 years!

My God, how do these people sustain hope, or even survive, for that long? Yeah, I know there is dialysis, and it consumes the person’s life. Several hours a day, several days a week on the kidney dialysis machine. How can they work or have any semblance of a life when most of their days are spent hooked up to a machine? But that is survival - that’s all there is until a donor is found. I wonder how the thousand of friends and family can see this and not donate... Maybe they try and get ruled out for health reasons. How devastating for them, too.

The Care Coordinator at UCSF told me that about two-thirds of potential donors cannot pass the physical testing that is required. A donor needs to be in excellent health - really excellent. Yikes!!

Now I am kinda freaking out about this... I am an average, middle-aged gal, who has become more than a little overweight and out-of-shape in the last year or so. I got so busy trying to make a living and survive solo here in Silicon Valley that my three times a week spinning, and my Saturday and Sunday long cycling rides bit the dust. Will I make it through the stress treadmill test? OMG...

So I have embarked on a dedicated training program and I have six weeks to get my butt in shape again. My testing is on January 3, 2007. If you are interested, you can follow my process through to the testing, and hopefully, surgery and recovery.

Welcome... I will be writing about my process to become a kidney donor. My hope is that it may inspire even one of you to make the same decision. I am told that there are over 62,00 people waiting for a donor kidney to become available, and the wait is five to seven years. Many people never live that long with their damaged kidneys. For some, hope is diminishing as their health deteriorates.

My next posting will give you the story behind my decision to donate one of my kidneys to a dear friend. I will tell you about the process so far, since I made my decision in mid-October.
Stay tuned...