This is probably going to be the hardest, most scrutinized (by me) post I will ever write. This goes against every instinct I have but this post is essentially going to be me telling you why I need your help.
I don't know really how to begin something like this so I guess I'll just come out and say what's up. Last week, in the course of catching up with my doctor at dialysis he basically laid my situation out for me in this way: Find a living donor that is either a match or can go into the paired donor exchange or face the fact that you most likely will never be matched to a cadaver kidney. Meaning basically, find someone to donate a kidney or stay on dialysis for the rest of your life. A life that would be significantly shorter because of the aforementioned decades on dialysis. I have no exact numbers but every study I've read on the subject suggests that long term exposure to regular hemodialysis treatments will result in a higher than average morbidity rate. In plain English, I will have many more years ahead of me (not to mention better years) if I get off dialysis as soon as possible.
This is not easy news to get. Or process. I was given the option, basically, to put it out there and basically ask all of you to consider helping me or just keep this to myself and do God knows what. A lot of options entered my mind. I'm not going to lie, one option was to just stop going and let nature take it's course. This is not uncommon among dialysis patients with no chance of transplant. I've decided to take some very wise advice and not go that route and instead put myself out there in this way. Something I've never been comfortable with. Essentially try to save my own life.
It's been suggested that my attitude towards my dialysis and health in general can be interpreted as flippant or nonchalant. I guess I do that on purpose. I generally go out of my way to seem normal, or to seem less affected by dialysis and kidney failure in an effort to avoid pity, or to avoid the guilt of making people worry about me. By doing this, however, I can see how I could make it seem like my health situation was no more than an irritant and not something much more troubling.
I know that I have also given the impression that things are "normal" with my actions. Namely my smoking and my blatant disregard for certain aspects of my care that would probably make my condition more noticeable if I took better care to follow. I've done these things mostly out of some sense of rebellion. End Stage Renal Disease and dialysis come with so many do's and don'ts (mostly don'ts) that to avoid the feeling of totally losing control over my life I chose to keep smoking and not following my diet as closely as I should have been. While these things caused me trouble with my health more than if I had just quit smoking, took my binders when I ate and ate the right things, I wrote off the consequences as the necessary collateral that comes with retaining even a tiny portion of my autonomy over my own life.
I've come to realize in the past 6 months that disregarding my diet, while freeing, was only hurting me and recently I learned that it gives off an impression of not caring about my health that I never meant to put out there.The smoking I realized was not good for me many, many years ago but that was and has been harder to change though I have. I've quit many times with varying degrees of success and I'm doing it again.
The bottom line is this (and the hardest part for me to actually write): I need a kidney. I'm not going to get one through the UNOS list of cadaver donors and that doesn't bode well for my life expectancy.
I know there are concerns beyond my commitment to my own health. What would donating mean to you? It is a major surgery and should not be entered into lightly. Everyone in your family should have input into your decision to help. If, after all the pertinent parties are consulted, you still feel this is something you want to do and you get through the testing you may wonder what consequences giving up a piece of yourself would have on your own health. What is the surgery like? Will I be limited in any way? One question I've heard more than once, do I have to quit drinking? First off, no, you don't have to quit drinking. It'd be nice if you weren't drunk the day of the surgery but beyond that go nuts. The surgery is almost exclusively done laproscopically meaning they make two or three tiny incisions instead of one long one. There will be post-operative pain from the fact that they will fill your abdomen with gas to make room for the laproscopes to maneuver around and grab the kidney. Getting rid of that gas from your body is not painless but you will be prescribed pain killers to help you deal with it. Donating a kidney has never been found to have any effect on getting pregnant or having a healthy baby.
From the University of Maryland Medical Center website: "The risks of donation are similar to those involved with any major surgery, such as bleeding and infection. Death resulting from kidney donation is extremely rare. Current research indicates that kidney donation does not change life expectancy or increase a person’s risks of developing kidney disease or other health problems"
The following links have every base covered. The answer to any question you can think of is answered on these websites but should a question not covered arise feel free to ask me and if I don't know the answer I will move Heaven and Earth to get it for you.
http://www.livingdonorsonline.org/kidney/kidneyfaq.htm
http://www.umm.edu/transplant/kidney/qanda.htm
If you are interested in helping and want to know what criteria you need to meet, they are fairly straight forward. For an actual you to me transplant you're going to need to be my blood type first off. I'm A positive. After that you will have a lot of blood drawn for matching and to check you out to make sure you are in good health. If you do not match my blood type but still want to give this a go that's great too. We'd do what is called a paired donation. Essentially you would be worked up the same way by the doctors then they'd go out nationwide and find others in the program who have non-matching donors and find one of their donors that I match with. Once found I'd get that kidney then, in as many steps as necessary to complete the chain, your kidney would get donated to someone else in the program, then their donor would donate to someone, and on and on until the person whose donor I matched with would get theirs.
I don't know what else to say except I understand if you don't feel this is the right decision for you, for any reason. But I have to try. I have to put my actual condition out on Front Street so I knew that all of you knew what I was actually facing. I know this isn't an easy decision and it definitely shouldn't be taken lightly. I understand what I'm asking for is a huge sacrifice and an un-repayable debt. I understand that I'm asking you for my life. Any consideration you give this matter, whether known or unknown by me, is immensely appreciated. Again, any and all questions are welcomed and encouraged. This has to be a very educated decision on your part. Please don't hesitate to contact me at all.
Musings on dialysis, not working, life and anything I have the energy for.
Hello there!
Wednesday, May 29, 2013
Saturday, April 20, 2013
Your kidneys: Beans of stability
The old adage that "You don't know what you have until you've lost it" is applicable in so many facets of our lives. In love, friendship, with work or money. But most people never stop to think about how it might apply to their bodies. Sure we all grow older and as we do some of us may find that we have a little less hair, a bit poorer eyesight or the occasional aches and pains that our younger selves never would have dreamed of. But what if a part of you just stopped working altogether? It's not something most would think about. And thankfully, they really don't have to. But I think it would behoove anyone to stop for a minute and think about what any one part of your body does for you and how totally screwed you would be without it. Obviously without a heart you wouldn't be able to live. Same for your lungs. And because of their very obvious necessity those two organs garner all the glory in the game of keeping you alive.
I think you can see where this is going. I'm here to shill for the often overlooked regulators of so much of our bodies consistency: the kidneys. We all learned in school that the kidneys main functions is to filter our blood and produce urine, the means our body has to get rid of all the bad stuff that you might not even know is in you. But do we really know what that entails. What exactly is it getting rid of? Even I, who have had kidney problems since before I was even born, didn't fully appreciate the importance of the kidneys until I found myself quite literally without any.
Let's look at some of the unpleasantness that the kidneys get rid of for us. The excess sodium that we all take in every day is filtered and sent packing by those magic beans. If they didn't we'd all bloat up like a Macy's balloon. Hypernatremia is the technical term for this eventuality and it can lead to anything from the aforementioned swelling to lethargy all the way to coma.
The kidneys are also in charge of regulating the amount of potassium in the body. Do you know what the main ingredient is in that little lethal cocktail they give inmates on death row? Potassium. An overabundance of the stuff will cause every muscle in your body to completely shut down, including your heart. And as I've mentioned the heart is kind of important if you want to keep from shuffling loose your mortal coil.
How about calcium? Think that stuff is important? Yep. Your kidneys regulate the levels of calcium in your body, as well. Without kidneys you are sure to suffer from what's called hypocalcemia. Because your kidneys no longer work your body lacks sufficient amounts of a vitamin D which helps redirect the calcium in your diet to your bones so you can grow big and strong. Without vitamin D to do that your bones don't get the calcium it needs and we've all seen Sally Fields in enough Boniva commercials to know what that does.
So where does that calcium go? It has to go somewhere, right? Well another job of the kidneys is to keep the levels of phosphorus in your body in check. Too much phosphorus and your body starts to take that calcium and deposit it into your blood vessels and harden them eventually leading to good times like heart attacks. High phosphorus also leads to deposits of said calcium on your skin and the most irritating itching you could possibly imagine. Where does all that phosphorus come from you ask? Rare foods such as milk, cheese, anything with protein in it, chocolate, beer, ice cream, beans or anything with whole grains.
Another important and little known function of the kidney is to regulate your blood pressure. By getting rid of the excess water in your body, your kidneys keep your blood pressure at a constant, normal level. When the kidneys shut down you are unable to get rid of that excess fluid you take in in the form of drinks, soups or really anything that melts. 30-50 ounces a day is the recommended intake of fluid for a dialysis patient. That's roughly one Sonic Route 44 drink a day and that's it. Otherwise your body finds places to put anything more than that you may drink. Places such as in between your cells. Or maybe in your lungs. Eventually you will find yourself unable to breathe and your heart unable to beat because of all that fluid crushing it under it's weight and those extra drinks you had are the reason you are on a ventilator in the hospital.
How do you feel about red blood cells? Kind of important, yeah? Well without functioning kidneys your body doesn't produce enough of the hormone erythropoietin which controls red blood cell production in your body. Without sufficient red blood cells you are prone to anemia which most end stage renal disease patients are. Luckily there is a shot you can take to boost the production of those cells. It's called EPO and it just got Lance Armstrong in a lot of trouble. No entering the Tour de France for me.
So while the heart and lungs get all the glory it's your kidneys that are doing a lot of the heavy lifting to keep your veins from calcifying, your bones from weakening, your blood pressure from shooting through the roof causing you to stroke out and they keep all that fluid you drink/eat from sitting on your lungs and heart keeping them from actually doing the jobs they are so recognized for.
Those inconspicuous beans sitting on your sides are what keep everything else in your body in check. So next time you are getting a check up have the doctor give your kidneys a pass and see how they're doing. Thanks to dialysis, losing your kidneys isn't a death sentence like losing other things. At least not immediately, but it can lead to pain, illness and just general unwellness if they aren't looked after. Keeping your kidneys healthy also keeps one off of dialysis which brings with it it's own set of problems and surprises. Just something to think about.
I think you can see where this is going. I'm here to shill for the often overlooked regulators of so much of our bodies consistency: the kidneys. We all learned in school that the kidneys main functions is to filter our blood and produce urine, the means our body has to get rid of all the bad stuff that you might not even know is in you. But do we really know what that entails. What exactly is it getting rid of? Even I, who have had kidney problems since before I was even born, didn't fully appreciate the importance of the kidneys until I found myself quite literally without any.
Let's look at some of the unpleasantness that the kidneys get rid of for us. The excess sodium that we all take in every day is filtered and sent packing by those magic beans. If they didn't we'd all bloat up like a Macy's balloon. Hypernatremia is the technical term for this eventuality and it can lead to anything from the aforementioned swelling to lethargy all the way to coma.
The kidneys are also in charge of regulating the amount of potassium in the body. Do you know what the main ingredient is in that little lethal cocktail they give inmates on death row? Potassium. An overabundance of the stuff will cause every muscle in your body to completely shut down, including your heart. And as I've mentioned the heart is kind of important if you want to keep from shuffling loose your mortal coil.
How about calcium? Think that stuff is important? Yep. Your kidneys regulate the levels of calcium in your body, as well. Without kidneys you are sure to suffer from what's called hypocalcemia. Because your kidneys no longer work your body lacks sufficient amounts of a vitamin D which helps redirect the calcium in your diet to your bones so you can grow big and strong. Without vitamin D to do that your bones don't get the calcium it needs and we've all seen Sally Fields in enough Boniva commercials to know what that does.
So where does that calcium go? It has to go somewhere, right? Well another job of the kidneys is to keep the levels of phosphorus in your body in check. Too much phosphorus and your body starts to take that calcium and deposit it into your blood vessels and harden them eventually leading to good times like heart attacks. High phosphorus also leads to deposits of said calcium on your skin and the most irritating itching you could possibly imagine. Where does all that phosphorus come from you ask? Rare foods such as milk, cheese, anything with protein in it, chocolate, beer, ice cream, beans or anything with whole grains.
Another important and little known function of the kidney is to regulate your blood pressure. By getting rid of the excess water in your body, your kidneys keep your blood pressure at a constant, normal level. When the kidneys shut down you are unable to get rid of that excess fluid you take in in the form of drinks, soups or really anything that melts. 30-50 ounces a day is the recommended intake of fluid for a dialysis patient. That's roughly one Sonic Route 44 drink a day and that's it. Otherwise your body finds places to put anything more than that you may drink. Places such as in between your cells. Or maybe in your lungs. Eventually you will find yourself unable to breathe and your heart unable to beat because of all that fluid crushing it under it's weight and those extra drinks you had are the reason you are on a ventilator in the hospital.
How do you feel about red blood cells? Kind of important, yeah? Well without functioning kidneys your body doesn't produce enough of the hormone erythropoietin which controls red blood cell production in your body. Without sufficient red blood cells you are prone to anemia which most end stage renal disease patients are. Luckily there is a shot you can take to boost the production of those cells. It's called EPO and it just got Lance Armstrong in a lot of trouble. No entering the Tour de France for me.
So while the heart and lungs get all the glory it's your kidneys that are doing a lot of the heavy lifting to keep your veins from calcifying, your bones from weakening, your blood pressure from shooting through the roof causing you to stroke out and they keep all that fluid you drink/eat from sitting on your lungs and heart keeping them from actually doing the jobs they are so recognized for.
Those inconspicuous beans sitting on your sides are what keep everything else in your body in check. So next time you are getting a check up have the doctor give your kidneys a pass and see how they're doing. Thanks to dialysis, losing your kidneys isn't a death sentence like losing other things. At least not immediately, but it can lead to pain, illness and just general unwellness if they aren't looked after. Keeping your kidneys healthy also keeps one off of dialysis which brings with it it's own set of problems and surprises. Just something to think about.
Wednesday, April 17, 2013
6 Degrees of Dialysis
I'm making myself write on a regular basis whether I think I have anything to say or not. This will, hopefully, get me into a rhythm. I'm not one for forcing the artistic process. (I'm not calling this blog artistic, it's just that I tend not to write unless I think there's something very pressing on my mind.) And since there is a tendency for me to judge nothing on my mind as worthy to commit to a blog post, I go weeks then months between writing them. Next thing you know, I haven't written in years and can't remember the password and I just pretend it never happened. So to combat this eventuality I'm gonna pop on here whether I think I have a point to get across or not. Gonna do a stream-of-consciousness thing and see where it leads me.
Maybe that's what this blog will become. Just a place for me to spill my brain out every night before I hit the rack. It wouldn't even have to change the subject of the blog. I'm thinking about dialysis or it's affect on my life about 97% of the time I'm awake. There's actually no part of my life it doesn't touch in some ways. Dialysis is my Kevin Bacon.
To offer another metaphor, dialysis is a dam holding me back from correcting the surprising number of mistakes I made in the first 25 or so years of life. It's not the fault of dialysis that I don't hold any degrees, but it is being on dialysis that prevents me from remedying that by paying back loans currently in default. It's not the fault of dialysis I don't have a career, but being on dialysis prevents me from remedying that by going back to school. You can see where this chain reaction leads. It leads to the day that I hope is coming soon, where I'm in my late 30s, starting over again with a fresh kidney and the mistake of last time to learn from.
When I got the transplant back in 2004 from Jeremy, it was the greatest thing I thought would ever happen to me. And so far it is. But it was also a trap Admiral Akbar wouldn't have seen. For the first time in 25 years I was healthy. Completely healthy. It's hard to describe that to someone who has experienced good health most of their lives, but when I woke up fully from the transplant I felt like a completely new person. Once I walked out of the hospital I was amazed at the difference. I felt like I could do anything. So to that end, I did nothing. Like a jackass I spent the next 5 years doing as little as possible. Enjoying, for the first time, that sweet feeling of good health. Don't get me wrong I worked but at menial jobs. I lived a very fluid life. Worked when I had to, hung out with my friends every other minute of the day. I never saw a day coming where I'd be back on dialysis. Surprisingly and sadly, it was coming much, much sooner than I thought.
25 years was a low end estimate on the expiration date of the new kidney. I had the world in front of me and nothing holding me back. I was gonna enjoy this weird feeling of health for awhile. I enjoyed it for too long it turned out, and after a trip to Las Vegas in January 2008 I went for a routine check up on the old bean and was told that something was wrong and I had to be hospitalized for tests. Those tests gave me the worst news I could imagine. Five years of good health was all I was gonna be given this time. Back to the machine.
Everything I wanted to do, that I thought I had time for down the road was now gonna be that much harder to accomplish. Nobody wants to hire someone who can't be at work 15 hours a week and then might be sick when they are there. And if there's no income then loans that a stupid teenager defaulted on can't be paid back to get back to school. So I cash in on Social Security disability in my 20s and 30s and "live" off that until that elusive second transplant comes around. It's been 5 years now that I've been listed on the UNOS list. I'm Status 1 which I'm pretty sure means I'm in the group best suited for a transplant. The average wait time on the UNOS list is 3-5 years. I can't decide if that's good news or bad. I always tend to lean to bad, but who knows. I have had two false alarms in those five years but beyond that I haven't heard a word from anyone at the hospital. In this case, no news is bad news. It means that nobody anywhere is matching me at all. At least nobody who is dying around here.
I don't write all this for sympathy, empathy or even judgement or anger. I don't care what you think about what really is at fault for my lot. That's not anger just the truth. I've come to terms with the mistakes I've made in the past. If I focus too much anger on dialysis to avoid my part in what's happened, that's your opinion but it's what I live. I think I focus appropriate anger on all parties. But this is what streams through my consciousness most nights. As well as, other things related to dialysis. It's not all-consuming but it tries pretty hard to be. Didn't mean to get this serious just three posts back into our relationship, dear reader, but these things happen when I let my brain be in charge of my fingers for awhile. I hope we can still be friends. :)
Maybe that's what this blog will become. Just a place for me to spill my brain out every night before I hit the rack. It wouldn't even have to change the subject of the blog. I'm thinking about dialysis or it's affect on my life about 97% of the time I'm awake. There's actually no part of my life it doesn't touch in some ways. Dialysis is my Kevin Bacon.
To offer another metaphor, dialysis is a dam holding me back from correcting the surprising number of mistakes I made in the first 25 or so years of life. It's not the fault of dialysis that I don't hold any degrees, but it is being on dialysis that prevents me from remedying that by paying back loans currently in default. It's not the fault of dialysis I don't have a career, but being on dialysis prevents me from remedying that by going back to school. You can see where this chain reaction leads. It leads to the day that I hope is coming soon, where I'm in my late 30s, starting over again with a fresh kidney and the mistake of last time to learn from.
When I got the transplant back in 2004 from Jeremy, it was the greatest thing I thought would ever happen to me. And so far it is. But it was also a trap Admiral Akbar wouldn't have seen. For the first time in 25 years I was healthy. Completely healthy. It's hard to describe that to someone who has experienced good health most of their lives, but when I woke up fully from the transplant I felt like a completely new person. Once I walked out of the hospital I was amazed at the difference. I felt like I could do anything. So to that end, I did nothing. Like a jackass I spent the next 5 years doing as little as possible. Enjoying, for the first time, that sweet feeling of good health. Don't get me wrong I worked but at menial jobs. I lived a very fluid life. Worked when I had to, hung out with my friends every other minute of the day. I never saw a day coming where I'd be back on dialysis. Surprisingly and sadly, it was coming much, much sooner than I thought.
25 years was a low end estimate on the expiration date of the new kidney. I had the world in front of me and nothing holding me back. I was gonna enjoy this weird feeling of health for awhile. I enjoyed it for too long it turned out, and after a trip to Las Vegas in January 2008 I went for a routine check up on the old bean and was told that something was wrong and I had to be hospitalized for tests. Those tests gave me the worst news I could imagine. Five years of good health was all I was gonna be given this time. Back to the machine.
Everything I wanted to do, that I thought I had time for down the road was now gonna be that much harder to accomplish. Nobody wants to hire someone who can't be at work 15 hours a week and then might be sick when they are there. And if there's no income then loans that a stupid teenager defaulted on can't be paid back to get back to school. So I cash in on Social Security disability in my 20s and 30s and "live" off that until that elusive second transplant comes around. It's been 5 years now that I've been listed on the UNOS list. I'm Status 1 which I'm pretty sure means I'm in the group best suited for a transplant. The average wait time on the UNOS list is 3-5 years. I can't decide if that's good news or bad. I always tend to lean to bad, but who knows. I have had two false alarms in those five years but beyond that I haven't heard a word from anyone at the hospital. In this case, no news is bad news. It means that nobody anywhere is matching me at all. At least nobody who is dying around here.
I don't write all this for sympathy, empathy or even judgement or anger. I don't care what you think about what really is at fault for my lot. That's not anger just the truth. I've come to terms with the mistakes I've made in the past. If I focus too much anger on dialysis to avoid my part in what's happened, that's your opinion but it's what I live. I think I focus appropriate anger on all parties. But this is what streams through my consciousness most nights. As well as, other things related to dialysis. It's not all-consuming but it tries pretty hard to be. Didn't mean to get this serious just three posts back into our relationship, dear reader, but these things happen when I let my brain be in charge of my fingers for awhile. I hope we can still be friends. :)
Monday, April 15, 2013
In which the nothing is said to be something and the something is said to be nothing.
Well the first time back went well. And by went well I mean nobody said it sucked and, on the internet, that is literally the best you can hope for. Not a lot to report on today. I guess I should tell the story of the little medical scare I had this week.
Post-treatment on Monday: While waiting for my ride to pick me up, I ran back inside to let the charge nurse know that it was feeling a little uncomfortable when I took in deep breaths. Like when you go running on a really cold morning. Or so I've heard. That particular pain has happened from time to time, but I have a track record with pulmonary ailments getting out of hand since being on dialysis, so I mentioned it. The PA (Physician's Assistant) happened to be there so she walked on over to get in the game. She's nice enough, seems very eager to do a good job. This must be her first dialysis clinic. So they gave me the once over and she ordered, what I call, a 2-shot. Standard chest x-rays, front and side view. I also showed her the rash that had developed on my back. I thought at first it might have just been cystic phosphorus sores, which I'm prone to, because of the fact that I usually completely disregard my renal "diet". But the area started developing differently.
THE AUTHOR WILL NOW DIGRESS FOR SEEMINGLY NO REASON
I put the word diet in quotes because I can't, in good conscience, call red meat and rice only a "diet". Not a diet I recognize anyway. For real, I get why there's a regimen. I really do. Too much of any food, with the possible exceptions of said red meat, steamed white rice, and anything made with a "something" substitute it seems, will kill a dialysis patient. I've had my battles in my days. Strawberries.
Nonetheless, for most of my time on the machine, I've taken the view that just having to be there for the 15 hours a week (It can get that high when you add wait times and make allowances for rides picking you up on either end) is really the most I was willing to do. So I'm gonna have all the Italian food, Mexican food, cheeseburgers and fries that I felt comfortable with.
AND HERE THE AUTHOR WILL MAKE SENSE OF HIS DIGRESSION
Once my back started to look like a topographical battle map of the Battle of the Bulge and I itched worse than the mangiest mutt you've ever come across, I decided I'd be the bigger man and start following my diet a tad closer and, more importantly, taking my phosphorus binders when I ate. You see a build up of phosphorus, which is in everything, (I'm serious. Look it up. It's in everything. AND all the best stuff!) draws calcium out of your bones leaving them weaker, as well as, depositing that calcium in your blood vessels and making your skin feel like you've been hugging a kindergarten full of chicken pox patients. How do you avoid this and not starve to death like a Somali, you ask? Phosphorus binders. Take 3 or 4 when you eat a meal. depending on how phosphorus heavy it is, and it will bind to the devilish phosphates in the food and your body will not absorb them in such dangerous levels.
So to this point all the sores I had, thanks to my reluctance to cut anything from my already sparse diet, had been on my back. Which is why I thought, at first, this disturbance on my back was normal. Normal being relative to me, of course. I had been slipping on my binders a bit lately. But when I saw this new "rash" after a few days wasn't acting the normal way I decided to show the PA. She seemed unconcerned.
The next day I go get the pictures taken and go home thinking nothing of it. It hurt a little less to take those breaths and I have a history of thinking there are things making me feel horrible when there are not. At least nothing out of the normal. Who needs an exotic reason when I could just chalk it up to the fact that I send my blood to the cleaners 4 times a treatment, 3 days a week? What can I say, I like to be more interesting. Keep people locked in, I guess.
Early evening on Wednesday while laying on the couch not feeling at all right, I get a call from one of the charge nurses at my clinic. I answered and noticed right away she seemed upset to have to deliver whatever news she had for me. She then proceeds to tell me that on one of the x-rays, a "mass" was seen on my right lung. I lost my breath. (No pun intended) I asked her to repeat herself, or at least I think I must have because she did, and I nonchalantly acknowledged the news while recording the number for the pulmonologist, which the nurse was apparently reading to me. "Oh. She's changed offices." What a weird to think at a time like that, I thought.
So I hang up and take a minute to collect myself before my next call. Now I had been given bad medical news before, surely, but nothing like this. Being told I had to go on dialysis was certainly hard to hear. Both times. But not once had death immediately popped in my head the way it had just five minutes ago. Especially untimely death. So at that point I just let myself lose it a touch and I called a very good friend of mine, then my parents, to deliver the news. I wanted to call a few more people but I figured that the least the number of people I told was also the least number of people who had to worry about it. I suppose by that logic I should have just kept the news to myself. But, I think, when a man of any age hears that he may have cancer he just wants to talk to the woman closest to him and/or his mom. So I did both. Because when ill, I can be a baby. Ask around. It's true. Talking to these trusted people helped tremendously.
So the call the next morning, the very first thing in the morning as I did not sleep, was supposed to be to schedule an appointment ASAP to get a second opinion. As it turned out, that second opinion wouldn't be available until Tuesday. Yeah, that wasn't going to sit well with me so I called my dialysis clinic, they got in touch with my nephrologist and he told me to go to the ER and tell them what was going on and they'd get me some answers.
So I did. And the climactic ending to all this waiting and taking stock of a life driven way, way, WAY down the path clearly not intended? They run a CT scan on my chest with contrast and find nothing. As in the contraction of the phrase "not a thing". Zilch. Nothing but air. He didn't even ask me if I had smoked. Maybe he could tell that. But that didn't even seem to bother him. The doctor came in and announced to the relief of all, and confusion of me, that there wasn't a spot, a nodule, or a mass of any kind anywhere near my lungs. Must have been a mistake on the part of whoever read the x-rays originally, or took them.
So not only didn't I have cancer, I have a pretty clean bill of health going on in the lung department. That's great news! Hey doc, can you take a look at this "rash" on my back and the one that has recently developed on my chest? Oh that? Looks like shingles.
Fuck. Well that figures. I know I am supposed to think, "Hey the mistake x-ray led me to the ER to have the shingles found in very early stages." And I guess that's one way of looking at it. Another way, the way I usually choose, is that I have something else to deal with on top of the whole dialysis thing. Because that's gotten too easy. I needed a challenge in my life...
So now I'm on very strong ant-viral medicine for a week to try to nip the shingles in the bud hoping they work because my mom just had them and they don't sound awesome. Hopefully they work and I'm just subjected to these two areas of irritation and I can be done with it. I would count myself supremely lucky is that's how it unfolds. I've counted myself "supremely lucky" probably four times in this life and most of those situations have involved meeting a woman. But we'll see. Here's hoping this week goes smoother, yeah?
Post-treatment on Monday: While waiting for my ride to pick me up, I ran back inside to let the charge nurse know that it was feeling a little uncomfortable when I took in deep breaths. Like when you go running on a really cold morning. Or so I've heard. That particular pain has happened from time to time, but I have a track record with pulmonary ailments getting out of hand since being on dialysis, so I mentioned it. The PA (Physician's Assistant) happened to be there so she walked on over to get in the game. She's nice enough, seems very eager to do a good job. This must be her first dialysis clinic. So they gave me the once over and she ordered, what I call, a 2-shot. Standard chest x-rays, front and side view. I also showed her the rash that had developed on my back. I thought at first it might have just been cystic phosphorus sores, which I'm prone to, because of the fact that I usually completely disregard my renal "diet". But the area started developing differently.
THE AUTHOR WILL NOW DIGRESS FOR SEEMINGLY NO REASON
I put the word diet in quotes because I can't, in good conscience, call red meat and rice only a "diet". Not a diet I recognize anyway. For real, I get why there's a regimen. I really do. Too much of any food, with the possible exceptions of said red meat, steamed white rice, and anything made with a "something" substitute it seems, will kill a dialysis patient. I've had my battles in my days. Strawberries.
Nonetheless, for most of my time on the machine, I've taken the view that just having to be there for the 15 hours a week (It can get that high when you add wait times and make allowances for rides picking you up on either end) is really the most I was willing to do. So I'm gonna have all the Italian food, Mexican food, cheeseburgers and fries that I felt comfortable with.
AND HERE THE AUTHOR WILL MAKE SENSE OF HIS DIGRESSION
Once my back started to look like a topographical battle map of the Battle of the Bulge and I itched worse than the mangiest mutt you've ever come across, I decided I'd be the bigger man and start following my diet a tad closer and, more importantly, taking my phosphorus binders when I ate. You see a build up of phosphorus, which is in everything, (I'm serious. Look it up. It's in everything. AND all the best stuff!) draws calcium out of your bones leaving them weaker, as well as, depositing that calcium in your blood vessels and making your skin feel like you've been hugging a kindergarten full of chicken pox patients. How do you avoid this and not starve to death like a Somali, you ask? Phosphorus binders. Take 3 or 4 when you eat a meal. depending on how phosphorus heavy it is, and it will bind to the devilish phosphates in the food and your body will not absorb them in such dangerous levels.
So to this point all the sores I had, thanks to my reluctance to cut anything from my already sparse diet, had been on my back. Which is why I thought, at first, this disturbance on my back was normal. Normal being relative to me, of course. I had been slipping on my binders a bit lately. But when I saw this new "rash" after a few days wasn't acting the normal way I decided to show the PA. She seemed unconcerned.
The next day I go get the pictures taken and go home thinking nothing of it. It hurt a little less to take those breaths and I have a history of thinking there are things making me feel horrible when there are not. At least nothing out of the normal. Who needs an exotic reason when I could just chalk it up to the fact that I send my blood to the cleaners 4 times a treatment, 3 days a week? What can I say, I like to be more interesting. Keep people locked in, I guess.
Early evening on Wednesday while laying on the couch not feeling at all right, I get a call from one of the charge nurses at my clinic. I answered and noticed right away she seemed upset to have to deliver whatever news she had for me. She then proceeds to tell me that on one of the x-rays, a "mass" was seen on my right lung. I lost my breath. (No pun intended) I asked her to repeat herself, or at least I think I must have because she did, and I nonchalantly acknowledged the news while recording the number for the pulmonologist, which the nurse was apparently reading to me. "Oh. She's changed offices." What a weird to think at a time like that, I thought.
So I hang up and take a minute to collect myself before my next call. Now I had been given bad medical news before, surely, but nothing like this. Being told I had to go on dialysis was certainly hard to hear. Both times. But not once had death immediately popped in my head the way it had just five minutes ago. Especially untimely death. So at that point I just let myself lose it a touch and I called a very good friend of mine, then my parents, to deliver the news. I wanted to call a few more people but I figured that the least the number of people I told was also the least number of people who had to worry about it. I suppose by that logic I should have just kept the news to myself. But, I think, when a man of any age hears that he may have cancer he just wants to talk to the woman closest to him and/or his mom. So I did both. Because when ill, I can be a baby. Ask around. It's true. Talking to these trusted people helped tremendously.
So the call the next morning, the very first thing in the morning as I did not sleep, was supposed to be to schedule an appointment ASAP to get a second opinion. As it turned out, that second opinion wouldn't be available until Tuesday. Yeah, that wasn't going to sit well with me so I called my dialysis clinic, they got in touch with my nephrologist and he told me to go to the ER and tell them what was going on and they'd get me some answers.
So I did. And the climactic ending to all this waiting and taking stock of a life driven way, way, WAY down the path clearly not intended? They run a CT scan on my chest with contrast and find nothing. As in the contraction of the phrase "not a thing". Zilch. Nothing but air. He didn't even ask me if I had smoked. Maybe he could tell that. But that didn't even seem to bother him. The doctor came in and announced to the relief of all, and confusion of me, that there wasn't a spot, a nodule, or a mass of any kind anywhere near my lungs. Must have been a mistake on the part of whoever read the x-rays originally, or took them.
So not only didn't I have cancer, I have a pretty clean bill of health going on in the lung department. That's great news! Hey doc, can you take a look at this "rash" on my back and the one that has recently developed on my chest? Oh that? Looks like shingles.
Fuck. Well that figures. I know I am supposed to think, "Hey the mistake x-ray led me to the ER to have the shingles found in very early stages." And I guess that's one way of looking at it. Another way, the way I usually choose, is that I have something else to deal with on top of the whole dialysis thing. Because that's gotten too easy. I needed a challenge in my life...
So now I'm on very strong ant-viral medicine for a week to try to nip the shingles in the bud hoping they work because my mom just had them and they don't sound awesome. Hopefully they work and I'm just subjected to these two areas of irritation and I can be done with it. I would count myself supremely lucky is that's how it unfolds. I've counted myself "supremely lucky" probably four times in this life and most of those situations have involved meeting a woman. But we'll see. Here's hoping this week goes smoother, yeah?
Sunday, April 14, 2013
Don't I know you?
And I'm back! New name, new look, same information nobody asked for! But seriously folks, I am back from my self-imposed blog exile and this time I'm back to do something a tad different that I had been. I will still be blogging on my experiences on dialysis and going through the transplant process but I'm also going to talk about the ancillary and auxiliary parts of my life that dialysis and kidney failure have affected. The reason for the change, honestly, is that just sharing about the experiences of dialysis and the transplant process got very stale and monotonous for me. You go to to dialysis, they hook you up, you sit there for four hours, sometimes you get sick, sometimes you don't. As far as transplant, they see you once, run every test on you and, in my case, never call you again. So, you could see how even a writer as loquacious and rambling as myself could find it hard to summon more than 2 or 3 ways to tell you about those experiences.
"Broaden your scope, my boy!", I thought to myself. Yes, I do refer to myself as "my boy" from time to time. So broaden my scope I've done. I will now be writing on pretty much anything that inspires me to sit in front of this laptop and bore ya'll with a story or two. After all, the only thing I do is go to dialysis. The reason I don't do anything else? Dialysis. Accordingly, I will use the free time kidney failure has "afforded" me by doing something I know (OK, think) I'm good at: write. I hope you guys enjoy the new direction. Any newbies snooping around here for the first time, feel free to go back and check out the old entries please and let me know what you think. Bye now.
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