Thanksgiving

Yeah I took a week and a half off. It's not like you all are paying for a subscription. :P

A lot of times, when I'm sitting in the dialysis chair and my calves are cramping or I'm dry heaving, I can't imagine there is a whole lot that I have to be thankful for. But when the season comes around and I really start to think about it, I realize that I have plenty of reasons not to be sullen and "grinch-y." I have a very loving family: my dad George; my mom Jan; my sister Sarah; and the only person I allow to hit me and walk away, my 2-year old niece, Mia. I also have great friends who would do anything for me and they are far too numerous to name but you know who are, and yeah, I'll name you anyway: Justin, Jeremy, Johnny, Kelly, James, Mindy, Laura, and there are more and I'm not just saying that to make myself look popular. I am thankful everyday for yall, I wouldn't be where I am without any of my family or friends.

The newest name on that list has done a lot this year to end up in the esteemed company she finds herself in, honest and true men every one of them. Even Mindy.  My friend Laura from the great Commonwealth of Virginia has done a lot for me in the short time I've known her. One thing I'm very grateful for, she's thrown some work my way that I can do from home since I have transportation constraints. Greater even than the chance to earn some money, she stepped forward to be tested to be an organ donor for me. Sadly, my antibodies are throwing a party that they are letting very few people into. It's like most parties when I was in college. When her blood cells and mine got together it wasn't a pretty sight. When you've already had one transplant, you have the first donor's antibodies as well. So my antibodies and Jeremy's got together and put a hefty beat down on Laura's blood cells. It's one reason it's so hard to match repeat recipients. But, undeterred, she entered into the Paired Organ Donation program with me and her donation of a kidney to someone else will enable me to get a kidney a lot faster than the traditional way would have. I've mentioned the program before and I have links up to the hospital's website. Links, like this one: http://www.texastransplant.org/kidney/kidney_incompatible.html 

That act means so much to me, more so than I'll be able to capture in this blog. First of all, for the second time I'm having someone step up and offer up a part of themselves to me, so that I can live a normal life. Most people don't get to have one living donor, I'm gonna have two. That just doesn't seem fair to me. I don't really feel I'm worthy of that kind of sacrifice. I didn't feel I was the first time with Jeremy and I certainly feel even less worthy my second time in this rodeo. I am amazed any time someone offers to be a donor. Not that it happens to me a lot, I'm just saying that simply the offer floors me and renders me speechless. To actually go through the process the way Laura has, and do it so enthusiastically, makes me want to be a better human being because I'm clearly not living up to the standard that she is setting.

It's important, especially when you are in a situation like I am, to find things to be thankful for--all year, not just the last month or so. Not only because it's not a good idea to go through life ungrateful, it can be unhealthy, but it's also good to appreciate what you have because there are others out there with so little and they are so happy with their lives. That's another gift Laura has given to me. With the promise of a new kidney, she has given me something very special to be thankful for and with that gift comes an opportunity. An opportunity that I squandered before. To not take life for granted like I did last time and to live up to the high standards that she and Jeremy have set for all of us as people. I wish all of you a belated Happy Thanksgiving, and as always wish you good health and great love.

"For Some Reason We Just Always Hung Out"-Jeremy Duncan

I have now delved into my own psyche and soul significantly enough that I've decided to turn the spotlight outward onto someone else. My donor is known to those readers who are related to me or who know me personally, well mostly. But to any readers out there to whom I am a stranger, my donor is one as well. He's been my friend since 1991 but I had no idea 18 years ago what kind of friend he would turn out to be.

 I met Jeremy Duncan in 6th grade after moving to a new school for the first time since 2nd grade. That was actually a good stretch of time for a military family. Jeremy was just another one of the new kids I didn't bother to try to meet because I was pissed I had to leave my previous school. So when junior high rolled around the next year I eased up a bit and started, trying at least, to make friends. Several of the friends I did make that year I have to this day. Jeremy was one of them. We had gym together as I recall and he lived in my neighborhood. Anyway, I'm not gonna recount the history of our friendship in this entry. Nobody cares to hear it, I'm sure. And frankly, some of ya'll lived through it and don't care. Anyway, the story I do want to tell is the one that got me a new kidney. All of you have heard it or were there but I think you will agree it bears repeating. To me it's like the stories that Jewish families tell over Passover seder, or the Irish tell at wakes after a couple of Jameson's.  Stories that recall times past, loss and gain. Triumph and tragedy. Well this is his triumph story, one of many he has, but the one I will tell over dinners for years.

 In 2003, Jeremy was a 1st Lieutenant in the United States Marine Corps as part of the United States invasion and occupation of Iraq. He lived in Southern California and we didn't see much of each other because his parents had moved off to Indiana sometime before this so he didn't really ever come back to San Antonio. We talked on the phone and on the computer quasi-regularly. I talked to him before he was deployed overseas -- that was February 2003 -- and I told him that I would be starting dialysis any time, which he was sad to hear. That was also the phone call when he told me that he and his wife, Tiffany, would be expecting their first child. That was big news. He was the first one of our group of friends to have a baby. It was a weird idea that any of us would be responsible for a human life. But he's turned out to be an outstanding husband and father, which shouldn't have been such a surprise. We talked a bit more because it would be the last chance to talk before he went off to war, a prospect I was more concerned about than my first time on dialysis, which was just over the horizon. Thankfully, he came back no worse for the wear and he gave me a call soon after his arrival back home to let me know he was home and to see how I was feeling. I had told him that I had started dialysis and that I was slowly adjusting to it, but that it sucked worse than anything I'd ever known. Sucked worse than Godfather III. It was that bad. 

Anyway, then he asked how I would get a new kidney. I explained to him the cadaver donor process of being on a list and essentially waiting for someone with very similar biochemistry to die. Otherwise, I told him, I could in theory get a living person to donate a kidney to me, if we matched blood and tissue types. Unfortunately, the best candidates for such a procedure, my family members, were either not blood type matches or not in a position, health-wise, to donate. That's something I never thought twice about. It never bothered me that everyone in my family was ineligible to donate. I never thought about a living donation because it seemed like way too much to ask of someone. It still does. Jeremy is a naturally curious guy. He likes to know the reason behind everything and how everything works, so when he asked what the process of getting tested to be a donor was, I didn't think he’d actually use the information I gave him. 

 Well, I didn't hear from Jeremy again for a couple months, save for the day his beautiful daughter, Zoe, was born. When I did hear back from him at the end of 2003, he gave me news that I had never in a million years expected to hear. He told me that he had been to a doctor on base and asked about getting tested to be a transplant donor. He needed to know which hospital I was listed at so the blood work could be sent. I was floored. I was almost instantly brought to tears over the gesture and to this day I've never again been that surprised.  So I gave him the hospital’s information and again we didn't talk for a few months. 

 The next time I heard from him, he called to tell me he got a phone call from his doctor informing him that he was a suitable match for me and that he could give me a kidney. He asked what I wanted to do. He was more than willing to do it if I felt OK with it. Again, I was speechless. It was like winning the lottery but having the winnings come out of a loved one’s bank account. All at once I wanted to tell him to get out here now and let's do this, but also I wanted to tell him thanks but no thanks, I couldn't do it. 

 I really mulled over this decision more than I thought I would if and when I ever got a call like this. I was scared for him, he'd never had surgery in his life, and I was scared for me because my best friend was giving me a gift that I could never repay in a million lifetimes and I didn't know what to do with that feeling. It's been over 5 years and the kidney no longer works and I still have those feelings. Even more so because it turned out not to last very long.

 Obviously, I called him back and said "yes, let's do this" and 2 months later he was in San Antonio getting his final work up and the rest is history. The news media "somehow got wind" of the story and we were briefly local celebrities. We even did a CNN interview (which is posted on my first entry "Pilot") and one on The Morning Show on CBS with Harry Smith. One tidbit that never ended up on TV or in print was about the moments before we were both wheeled into surgery. If you've ever had any kind of surgery, which he hadn't, you know they usually give you an injection that they call "a margarita." It's a powerful sedative to relax you as they are wheeling you in and putting you on the table, basically doing everything before they put the mask on you and telling you to count back from 100. I, frankly, love the "margarita" and look forward to it every time I have surgery. Well, on this occasion I must have been abnormally nervous because when they injected the sedative I immediately began to dry heave. Just for a second, but it was long enough for Jeremy to see. He was literally right next to me in another gurney. He saw me wretch and he lost it. He was saying, "don't give me that! I don't want what you gave him!" I had recovered and started laughing at his outburst. The nurse calmed him down and they gave him the "margarita" and he instantly became Cheech Marin. We were laughing over the dumbest stuff and he was telling me things like, "man I'm so stoned." It was hilarious. 

 Not nearly as hilarious as when they rolled me into post-op, and a still drugged up Jeremy blurted out, "Hey, that guy has my kidney!" I don't remember it, but I heard about it later. Everyone thought it was hilarious. I would have, too.

 Well, that's the story of my first transplant. To this day, I'm still amazed at Jeremy's sacrifice and even though it didn't last as long as everyone wanted it to, I'm still thankful every day for his gift. I am still awed that he would do this for me, but the God's honest truth is that Jeremy is the kind of person who would have done it for a stranger. Anyway, I don't want this to get overly sappy so I will just say that he is a great friend, a great person and I thank God that we had gym together in 7th grade.

 The point of this story was not only to let the blogosphere know what kind of person Jeremy Duncan is, it's also to point out that any of you reading this can be a donor. It doesn't have to be a kidney necessarily, it can be as simple as blood plasma. Blood and tissue donations are sorely needed all over the country. 45 minutes of your time could save the lives of up to 7 people. I leave you with that thought and, as always, wish you good health and great love. I also wish for all of you at least one Jeremy Duncan in your life.

The Crackpot and These Women

So another installment is in high demand apparently. And by high demand I mean 1 or 2 people are asking me to write a new one soon. I had a great weekend, real laid back and low key and dialysis really didn't give me any problems or ideas on Monday. It was in and out, as it were.

 So, what should I write about? That is the question that is plaguing me. 

Time.

 You know, I don't ever think about getting a new kidney. I don't. But what I do think about is what I'm going to do with it. It's like when you were a kid and you knew, at least I did, that you were gonna get a check from your grandparents for your birthday. So in the weeks or days leading up to your birthday you never thought about the check that you knew was coming, but rather what you were gonna spend grandma’s and grandpa’s money on.

 That's what it's like, at least for me personally, being on the transplant list. It's not if, it's when, and it's not even when as much as it's after that you think about.

 When I got my first kidney I was told it would be 20-25 years until I would start back down the transplant road again. That was probably the worst thing anyone could have told me. I was 26 years old and I had at least 20 years of health in front of me. And if this "health" thing is anything like what I was feeling the first day out of the hospital, I could really enjoy it. I had never, literally never, felt so good in my life.

 However, the knowledge that I had 20 years to feel like this before it was gone was telling me to enjoy life now. "Make these 20 years the most fun of your life." That's what I was hearing in my head. My brain was telling me to go out and spend kidney money I didn't have. Which I did. I should have at least tried to go back to school, I belong in school and it's my goal for the future to get back and NEVER leave. I will get every degree they can offer, then turn around and teach those subjects.

 So in lieu of going to school I...

 Yeah, I'm sitting here racking my brain and I can't think of anything I did with my life, and kidney, in the 4 years of good health that I had. I mean I did some things; I went to Vegas, I got engaged and subsequently unengaged, I worked crappy minimum wage jobs. But I didn't do anything. I assumed, which I do a lot, that I had time. I would have time for school, I'd have time to graduate and get a good job, meet someone and start a family.

I was wrong. I did not have that time. But I did have enough time to do something, if not everything. But I floated on the cloud of good health and just went where it took me. If I had known I only had 4 years before I'd be back in hospitals and 5 years before I was back on dialysis, I would have done things so much differently.

But you can't see into the future and you shouldn't spend too much time on the past. The present is what you must see because it's fading so fast.

 Just remember that time is a fluid thing. It flows past you before you know it, so enjoy what you have now. Enjoy what life has given you and don't waste it. You never know when the river of time will end in a fall. As always, I wish you, my readers, good health and great love. And time.

Sgt. David M. Nessley, Sr. USMC

When I get down on myself, which is a lot, I try to remember those who have it worse than I do. I wish it were harder but there are many out there worse off than I am. I think of the nurse at my clinic who is on chemo, all the people who don't qualify for a transplant and have to be on dialysis the rest of their lives, or the people who need a heart and don't have the possibility of something like dialysis that can keep them going until that life-saving transplant. Most of all, though, I think about my grandpa. I’d rather stay on dialysis the rest of my life than go through what he has to go through. My grandpa has dementia and hardly remembers who any of us are anymore. I saw him last year and I was told that it might be the last time I see him because he was getting bad. For some reason, in my brain, I couldn't accept that. Now I realize that, while I had some good moments with my grandfather last year, I didn't take the appropriate amount of time to tell him how I felt about him. Whether he would have processed it or not, and he likely wouldn't have, I still wish I had told him what he meant to me. My other 2 grandparents died when I was a kid and they both went suddenly so I didn't get the opportunity I probably lost last summer.

I wanted to tell my grandpa, who was a Marine Sergeant in World War II and a Bronze Star winner for bravery, that he was one of my heroes. But I’m not the one who has it worse in this story -- my grandfather does. He is a perfectly healthy human being who eats, sleeps, and lives in a world he increasingly forgets about. That’s a kind of hell that I've never experienced even in all my years of hospitals, surgeries, and organ failures.

I've lost my grandfather and that's sad for me, but what's worse is that I've lost him while he is still alive. Being hooked to a machine 12 hours out of the week is really small potatoes when it's stacked up against things like that. There's no machine that's gonna make him remember his son, daughter, grandkids, or friends.

In the grand scheme of things, I'll get a new kidney and move on with my life. But there will still be 10s of thousands left behind on dialysis and I think about that a lot and remember that things can always be worse. I kind of think of it in prison terms: There will always be someone who has been on dialysis 1 day longer than I have and that person has it worse than I do.

There is good news for today's blog. Mr. Moreno, an older gentlemen who had been treated at my clinic for quite a long time, got his kidney on Wednesday, 11 November. I sincerely hope everything works out for him and that I don't see him return -- at least not as a patient.

I swear life is not normally this dreary on dialysis. It may not seem that way from reading these posts. It's certainly not the end of the world. And that's kind of the point of this entry I suppose. Dialysis isn't the end of the world at all, it's just a bump along the way. I've never met anyone who has let dialysis define who they are. Those who are able (and they are usually the ones who've been on a good deal of time and have adapted to it) go to work as many hours as they can, coach their kids’ Little League games, and even nurse others. These people are mothers, fathers, uncles, grandmothers, etc. What they are not are dialysis patients, at least not to their families and friends.

Remember, when times are bad and you think you have it worse than someone else, take a look around because chances are someone in your vicinity is going through something just as tough, if not tougher than you are. This is one truth that I have learned on dialysis. I've also learned that I was far too self absorbed to see this truth when I was 25 and started dialysis the first time. With age comes wisdom. As always I wish you, my readers, good health and great love.

5 Votes Down

While sitting in the waiting room yesterday waiting to be called back for my treatment, I noticed an older man and his wife, waiting. The social worker,  Beth, came out from the back with her clipboard and called them back. That's when I noticed the man's temporary Hickman catheter in his jugular; this guy was new to dialysis. I overheard him saying as they went back that whatever caused him to be on dialysis had come on suddenly over the weekend. Then the trio's voices trailed off indistinctly and I was left there to wonder:.  "What is taking these people so long to bring me back."

Witnessing this scene made me think back to my very first day of dialysis, not in a hospital, but here in this very clinic. Dialysis in the hospital, to me, was just another room to go to, and another needle; it was just going through the motions of a hospital stay. In an outpatient dialysis clinic, it's a different creature. My first day in the clinic was one of the few times I was actually a little scared -- at least at first. When you walk in there for the first time, you are hit with the sound, first. In a hospital, where I started it my dialysis treatments, you may have had one other patient in the room with you but when you enter the outpatient clinic. you are bombarded with the noise of 20-30 other people on their treatments. There are people moaning, talking, laughing. At my clinic, you can hear an old woman scream when her needles are put in. Those kinds of sounds greeted me my first day as I timidly sat my 120- pound self in the chair and listened as the head nurse was talking to me, making sure I was OK. I was not OK. For one thing, I was cold. They keep dialysis clinics ridiculously cold. I assume it's for the machines but man, it's uncomfortable. Here's another key difference between the hospital and an outpatient clinic: In a hospital setting, if you are cold they will offer you a blanket, usually a heated blanket. In an outpatient clinic you better bring your own gear or you are out of luck. I was not aware of this distinction my first day. It was March and starting to feel very nice outside. South Texas Spring was here and I was in short sleeves and shorts, which led me to freeze my ass off for the entirety of that first treatment. 

Back to the sounds of the clinic: phones ringing, patients chatting, patients moaning and calling for relief, patients crying or exclaiming with every needle stick. All of these invaded my brain and really made me long to be back in the hospital. Eventually, I was able to shake these sounds with the help of the TV, which back then provided basic cable, and with the help of the terrific staff at the facility. Well, before I knew it that first treatment was over and I got in my car and drove off, not sure if I'd be driving back on Wednesday. Of course I did. It took me a week or so to get into the groove of this new world, but now it's very much second nature to me.

When I saw that old man in the waiting room, I wondered if any of those thoughts were going through his head. Of course, he had a wife who seemed very comforting and supportive. That will go a long way toward easing his transition into our world. I think, for the most part, the patients who have someone at home do much better in the long run.

Enough for now. As always, I ask you to remember the 104,900 people on transplant waiting lists. Until next time, I wish all my readers good health and great love.

But for one little girl...

One thing someone with an organ failing them thinks a lot about is what they would/will do once they were healthy. I find myself doing it a lot, especially when I see that little girl in the picture. That's my niece Mia.  She's 2 and when I was in the hospital last year and they told me that my transplant was beyond repair and that I would need to go back on dialysis and be re-listed for a transplant I was never more ready to end it all. That sounds horrible to say but after knowing 5 years of health, the only 5 years of real health I'd ever known, I didn't want to go back to what lay ahead. I had seen too much good stuff to go back. Well, obviously I didn't end it, and the first thing I thought of when the shrink asked why I didn't really want to die was that little girl. I want to get a new kidney, and make something of myself that makes that little girl proud of her uncle. So for a lot of those 3 1/2 hours that I'm watching free cable I'm thinking about the future. I try not to think about exactly HOW FAR into the future it may be, but I look to the future for a time when I'm not tied to a machine to keep me from being poisoned by the food I eat, and from drowning in the liquids I drink. Anyway, I thought I'd share that story of a time at the outset of all this when I was not prepared to go on. I'm sure it happens to more than a fair share of those of us in organ failure. Thanks Mia. Your uncle owes you a lot.

Post Hoc, Ergo Propter Hoc

Monday night, the first treatment of the week. I hope the weekly blood work comes back fine, as it thankfully has been doing so far. My phosphorus has been the only thing showing up a little high from time to time. I am lucky in that I don't have a whole lot of dietary restrictions yet because my blood work is always so good. Unfortunately, I've been through the renal diet in the past and I truly feel for those patients who have to be on it. Diabetics have it twice as bad. Every time I've been hospitalized and put on the "renal diet" I've been stuck with baked, skinless chicken and rice almost every night, and a bagel with cream cheese, with 1 scrambled egg substitute every morning. Num Num! I like to eat so, to me, this is the part of dialysis/kidney disease that I find difficult to deal with. Hopefully, I will get a new kidney before the dietary restrictions have to be thrust upon me again. (For a good idea of what the renal diet is, and isn't, click on the link above.)

 Speaking of getting a new kidney, I had a close call last month. As well as being listed with UNOS, I am in a program at Methodist Transplant and Specialty Hospital here in San Antonio called the Paired Donor Program. Essentially, here's how it breaks down: 1) I have a friend or family member who wants to donate but can't because of tissue or blood type incompatibilities, in this episode being played by Laura Williamson McCafferty. 2) The hospital matches us with another pair that is in the program but are incompatible with each other. 3) If all the tests come back positive, Laura gives her kidney to the other recipient who needs one and that person’s friend/family member gives me theirs. A kind of swap meet for kidneys. http://www.texastransplant.org/kidney/kidney_incompatible.html

Well, I got a call last month saying that a 60 year old couple was an initial match and would I be down if the further testing came out positive. I'm not one to really look a gift horse in the mouth so I said yes, though I did have some reservations about it. Yeah, the nurse said that they were good to go otherwise they wouldn't be in the program, which is true, the program at Methodist has strict parameters and guidelines to ensure the best matches possible. But still, a 60 year old kidney, I would be waiting for it to give out again because it's old. Well, in the end my antibodies went to town on the 60 year old's and the transplant was a no go. I had to wait a weekend to find out and it was pretty tough to find out on Monday that I would have to wait some more. But then I thought about the thousands who were going to dialysis that Monday and were in their fourth or fifth year of going, and I remembered how lucky I am to have never had to have gone that long. Yet.

 Well that's it for Monday, turns out I won't get my blood results this week due to some malfunction that happened tonight with the machines. Oh well, mine haven't changed that much lately. If any of yall have any questions about the Paired Donor Program or the renal diet feel free to ask. Leave a comment and I'll get back. Until next time I wish you all good health and great love.

Pilot

Welcome to my take on the world of renal failure, dialysis and the transplant process. Right up front I'll establish my street cred; I have had a lifetime of kidney problems resulting in hospitalizations and ultimately my being placed on dialysis when I was 25. My first stint on dialysis was relatively very short. A year and 2 months after starting dialysis I received a living donation from my friend Jeremy Duncan (http://www.youtube.com/watch?v=SYiEmzRdpAc). Unfortunately, I was not to know good health for very long. 5 years after the surgery I found myself back on dialysis after the donated kidney ran into some sort of trouble and stopped working. My doctors never gave me a reason for the failure.

So here I am, a second timer on dialysis and I've decided to chronicle my experiences of the thrice weekly trips to the dialysis clinic and the arduous process of renal transplantation. I've already been back on dialysis since February and it's pretty much been just as I remembered it. I guess that shouldn't be surprising since it's only been five years. First, we got my dry weight established which is a process where they have the dialysis machine pull as much fluid out of my body for a weeks worth of treatments which establishes a base line weight I should be at. The testing of the weight can be heady. Having a machine pull out all excess fluid, plus a little more, can leave you with painful cramps and a feeling of being completely used up. It's what I imagine running a marathon would be like without having anyone to hand you a little cup of water along the way. Once I was past a couple weeks of feeling like that, the process got pretty routine. I've had access problems, as I did in my first stint, which was ultimately solved by having another fistula created from the basilic vein in my upper arm. I was really fearful that the 15 gauge needles they use for the dialysis treatments would cause a great deal of pain in that part of your arm seeing as it's pretty sensitive skin but it's been pretty good. I usually don't feel a thing, though I know it's not the same for everyone. Some do not take that part of the treatment very well. Now in my ninth month of dialysis, I've gotten used to the "after treatment" feeling again. It feels like you've had a really hard day at work but instead you've been sitting in a chair watching your blood leave your body, get cleaned, then returned to you for 3-4 hours. At least there is free cable. Of course the pay off is getting to feel close to normal on your off days; for me Tuesday, Thursday and Saturday. Sunday I don't have dialysis either but that's when I usually start to feel the benefits of Friday's treatment wear off. The off days are never long enough.

Today I am writing this blog hoping to do a few things: 1) I'd like to get a sense of what kidney failure is like to deal with out to the general public who probably don't know someone with non-working kidneys, 2) I hope to connect with others who are on dialysis or have been on it in the past who want to share their experiences, and 3) I'd like to use this blog to pass on any news about dialysis or organ donation that might be out there. Mostly it will be the first one, I think dialysis is something that a lot of people find very foreign and I think it would interest them to know what the process is all about, not just technically but personally. How it affects the patient physically, as well as, emotionally. According to a story on azcentral.com,"As of October, 82,385 people were on the waiting list for a kidney in the country." (http://www.azcentral.com/news/articles/2009/11/08/20091108kidney1108.html) Thanks to the rising incidence of obesity and diabetes in the United States that number will grow, meaning more and more people will know someone on dialysis. Hopefully this blog will be a different but equally useful tool for those who want to know a different side of the process kidney failure patients have to go through to stay alive, as well as, a place for patients to comment about their experiences.