The Angry Old Man I've Become

Something has been bothering me recently, and I wonder if anyone else on dialysis has ever had this experience. I've found myself much angrier than usual when I go to dialysis. I'm pissed at the staff, though I try to keep it to myself and I'm pissed at just being there. I know that's probably normal but I don't know why I'm just now experiencing these feelings. I've been on dialysis now for 21 months now. The anger and bitterness should have been something I felt at the outset and then once I accepted things it should have passed. But instead I took everything in stride as I usually try to do with my health and now as soon as I walk into the clinic I'm in a horrible mood. I get angry at those who run the clinic because they are on this rampage of doing things by the book and not ignoring every bit of minutia in their "handbook" about how to administer dialysis, with no thought of the individual needs of the patients. We all don't have the same symptoms/needs as dialysis/ESRD patients. I'm sure my anger is petty and juvenile but it's honest and I really can't do anything about it. I don't want to be angry, I don't want to be bitter about my place but it washes over me like a tidal surge and it just controls me. The second I leave the clinic after my treatment I'm my normal self but for those 4 plus hours I'm in there I'm on the razor's edge and could snap on anyone in there. Anyway, I've had this going on now for a few weeks and I can't do anything about it. I don't like feeling that way, I'm normally a pretty happy guy where my health is concerned. I've dealt with ill health for my entire life and have learned to roll with the punches. The last time I was this angry was after my transplant failed and I was told, as I lay in my hospital bed, that I would need to go back on dialysis as soon as possible which meant guiding a wire into my jugular vein into my heart for emergency dialysis access. That was my 30th birthday, why what did you get for your 30th birthday? Maybe that's it. Maybe I'm just now feeling the cumulative anger I should have felt all these years when I got bad health news. I wish I knew what it was and how to fix it, I know the people at the clinic are just there to do a job and to keep me alive but I really resent them and feel so bitter when I'm in there. Just something I've been thinking about. If any of you reading this have been or are on dialysis currently and have had these feelings I'd love to hear your story and how you dealt with it. It's gotten to the point that I don't even want to go anymore. I said that half jokingly the other day and the nurse practitioner told me that I had to come and that there wasn't an alternative, as if I just got there and didn't know that. I told her, "I don't even care." It's gotten to that point. I'm so angry at dialysis I don't want to go and I don't care what that would mean. I still go, I make myself, but I need to get a grip on these feelings. Sorry for the depressing post y'all. Like I said, the other 20 hours out of the day I'm pretty happy, considering. It's just those 4 that I'm in that building, on that machine. As always, I wish you all good health and much love.

Remember Me?

Hello all. It's been awhile, I know, but I made a promise to myself when I started this blog and that was that I wouldn't just post banality or what was on my mind on a given day every week. I said I'd only post when I had something to say about the subject of this blog and not any other time. So, 2 months since my last post I'm back.

In the two months since I've talked to you all last I've joined a gym and started to get into some semblance of good shape. I really like the gym but not really a fan of the money I have to spend on it but nothing worthwhile in this life is free I suppose. Someone has to make money off our lives, right? What would we do without capitalism. Sorry, that's for another blog. Getting in shape has been great, I'm still not eating great but that's something I still can't do. Anyone who is on dialysis will tell you that one of the hardest parts of the experience is the diet. Low potassium, low phosphorus, low sodium, low taste. It's the worst. I'm already a picky eater, ask anyone who's cooked for me, so I already went ahead and cut half of the food in the world out of my diet just from my preferences and now the dietitians are harping on me to go ahead and eliminate the other half. At least the ones that taste good anyway.

No potatoes. Come on I'm half Irish. Really? No dairy, cheese, beans, peanut butter. You're killing me. No soda. Eh. Half the fruits in the world and probably a quarter of the vegetables. So really I'm left with meat. That's it. Meat and bread, but no whole wheat because that's bad too. Meat and bread, nothing on the meat and nothing to season it with.

So that's the diet they are trying to push on me. No thanks. I know it seems petty and immature but no. I'm not doing it. I'll cut back on some of these things, I have no problem with that, but I'm not eliminating anything on that list. It's bad enough I'm on dialysis. It hampers my ability to get a real job, be out in the sun longer than a half an hour, or just live a normal life and now that my kidney function has basically hit rock bottom it's trying to eat into what I eat. I have to draw a line somewhere. OK, I don't have to. I could just be an adult and comply with the rules, but I'm not going to. I've been on the transplant list for a year and a half now, and I know that doesn't seem like very long compared to others who have been on for years, but that's the point. I've been on for a year and a half and haven't even gotten a sniff of a kidney so chances are I'm gonna be on this list for a few more years and in that case I don't think I can give up the few foods I enjoy eating or just the simple freedom of eating whatever the hell I want to.

The intention of this blog wasn't to do this much complaining but clearly this is an issue that really gets to me. I've gotten to a place while on dialysis that I'm sick of it. I'm increasingly less patient with being on the machine every day and more aware every day that I haven't heard from the transplant people in about a year. I'm just coming out of my myopia and realizing that this is gonna be a very long process and that during the process you don't get better you get worse. My kidney function has decreased significantly since I started dialysis and while the washed out feeling afterwards isn't as frequent, I am starting to develop other problems more often. Tachycardia, Brachycardia, a couple bouts with pneumonia. To sum up I'm sick to death of this process.

Since I'm clearly entering a bitter phase about dialysis I will probably be back to blogging more frequently. I think if I don't I may choose to lash out in a different way; getting angry for no reason or even skipping treatments, and neither of those things help anyone. I know this is just a phase and I really am happy with every other aspect of my life, just not the health part. But I guess that's to be expected. And though I'm a little down these days I still wish you, my readers, good health and great love.

Kidneyversary?

That's right, I've made up a word. I've seen it done elsewhere. It actually got someone an A once in college so back off. :) Anyway, I'm temporarily out of my blog hiding hole to pen this thank you note of sorts.

On May 20, 2004 Jeremy Duncan gave me one of his kidneys so that I could be off dialysis and get on with my life and do so healthy. It's been 6 years and I've yet to figure out a proper way to thank him. That's not to say I haven't thanked him. I've done so ad infinitum. But it's still not enough. So I've taken to mentioning his act of heroism and kindness at least once a year on the anniversary of our respective surgeries. I've already mentioned him on Facebook and told friends of today's significance. All that's left to do is to say a little something here so that the entire world can read it.

So thanks again Jeremy. As I wrote on Facebook I hope, one day, someone does something for you that is at least half as nice as what you did for me and I hope that someone is me. Your gift didn't last as long as anyone would have hoped but that doesn't, for an instant, diminish the thoughtful, kind, loving place inside you where the gesture came from. You are a good person, a good friend and a good soul. My friend you have done much more than put a down payment on your spot in Heaven.

Today I am filled with a grateful feeling but also that of remorse. I feel terrible that on this 6th year since the transplant I'm not celebrating a healthy, working kidney. The doctors couldn't give me a reason the kidney ultimately failed so all I can do is bear the responsibility.

Thank you again brother for the gift of time you gave me. 4 good, healthy years I had because of you. Healthier than I'd ever been in my entire life. All the memories, good and bad, that I accrued in that time are all due to you and I'm forever grateful.

Kidney Paired Donation Program

 A new federally funded pilot program has been created to find out if kidney paired donation, which pairs eligible live donors with patients who have a donor that is not medically compatible, can make more transplants possible. They are also studying the feasibility of starting a nationwide KPD program. Below is the story from the UNOS website.



http://www.unos.org/news/newsDetail.asp?id=1344

Questions?

So it seems I'm running out of ideas for what to write about. Well, not ideas but good ideas. So here's what I'm gonna do, what every writer who wants to cash it in does: I'm asking for questions. If any of you have something you want to ask about dialysis, transplant, or anything else related just email or leave it as a comment on this post and I'll do an entry on it. No question is wrong, no question is too personal so go ahead and fire away. If I actually get any questions I'll start answering them at the beginning of March. Hope to hear from all of you.

Happy New Year?

OK, so it's a little late for a "Happy New Year" but it is my first entry of 2010. It had been a pretty quiet start to the new decade, just the way I wanted it, that is until just recently when I woke up on a Sunday to find that my ability to take a breath had been diminished greatly. Not wanting to miss the Cowboys/Vikings game, I waited a few hours to consult anyone. Needless to say, I ended up in the ER and subsequently, Northeast Methodist, with my very own case of pneumonia.

Pneumonia is an accumulation of fluid in your lungs which in turn get infected because it just kind of sits there stagnant. It's a problem that is forever lurking over our collective shoulders. Pneumonia's epidemiology, or prevalence in hemodialysis patients, hasn't been concretely proven but in a study conducted between 1996 and 2001 Medicare tracked over 200,000 cases of pneumonia in dialysis patients. (http://ndt.oxfordjournals.org/cgi/content/short/23/2/680 )

So after 3 days of breathing treatments, IV antibiotics and far too much swabbing, I was released and I've been feeling much better lately. After a year on dialysis I've kind of entered a glide pattern. Nothing really changes too much from treatment to treatment. You have the occasional fluctuation of your dry weight that needs to be corrected but other than that it's pretty standard stuff day in, day out.

I guess if I want this blog to be somewhat educational on the processes of dialysis and not just an unsolicited look into my life, I should explain what a "dry weight" is. Dry weight is simply your weight with as little excess fluid in your body as possible. Basically, in a person with normal kidney function the dry weight would be their weight after they've gone to the bathroom.

Because a failed kidney cannot filter the blood properly one consequence is that excess fluid will build up in the tissues, including the lungs, of a patient. This is called fluid overload and without treatment it can lead to the patient literally drowning in their body. Personally, it's not a great feeling. So in order to assure that this particularly uncomfortable death does not come to any of us, along with having our levels of potassium, phosphorous, urea and creatinine lowered, they also pull off as much excess fluid from the blood as possible.

So that's what the dry weight is, the lowest weight they can get you to by pulling off the extra fluid from your blood. Maybe you ask yourself, "why does he say 'as much as possible'?" And to you I say, good question but this isn't a classroom, keep that to yourself. I say "as much as possible" because there is something called the "dialysis hangover" or "dialysis washout." It is caused by too much fluid being pulled off in one treatment, or can be caused by the fluid being pulled off too quickly.  "Dialysis hangover" is usually characterized by these symptoms, but not necessarily all at once: headaches, nausea, muscle cramps, a drop in blood pressure and fatigue. These complications can resolve within minutes or they could last for a day or so.

 Maintaining your dry weight, while one of the most essential jobs performed by the dialysis treatment, is also the one that will affect the patient the most. There are ways to avoid the "hangover," mostly they involve proper fluid control on the part of we the patient. Basically, knowing your weight, knowing how much fluid you are taking in between treatments and not going over your allotted amount. This sounds easy enough but the recommended fluid intake between treatments for most patients is 32-50 fluid ounces per day, or 64-100 fluid ounces total. 32 fluid ounces is roughly equivalent to a bottle and a half of soda a day. An average person with normal kidney function has a fluid intake of 100 fluid ounces a day. That 32-50 fluid ounces a day doesn't just include water, juice or whatever you drink, it also includes anything liquid you could have. Soup, ice cream, basically any food that is liquid or can melt will count against your daily allotted fluid intake. Now, that 32 ounces a day rule isn't fast and firm. If a patient has residual kidney function that will allow them some wiggle room with their fluids. That's something I have been blessed with for this first year I've been on. I think this latest bout with pneumonia is the death knell for my willy nilly fluid intake.


It's important to know your weight and to weigh yourself regularly at home to make sure you are not gaining too much between treatments. Ideally they would like patients to gain no more than 5% of their dry weight. For me and my 81.5 kilograms that would be a gain of 4 kg in the day and a half between treatments. Not knowing your dry weight, or keeping up with it at home can lead to the fluid overload but it could also lead to the patient just having a little fluid left in the body which, if not caught, can sit there long enough to turn into the pneumonia that lands someone, let's say me, in the hospital.

Dialysis is a partnership. The dialysis nurses and techs are responsible for as much of the patients' care as the patient is. Most dialysis patients know what temperature their dialysis machine should be set to, or how much Heparin, an anti-coagulant, they should get. Knowing these details will ensure that nothing is inadvertently missed by those taking care of you.

Starting with this blog, I'm setting up a new structure. Because dialysis can be the headquarters for tedium, at least from the standpoint of the patient, I'm going to be writing an entry on the first of every month that will cover everything pertinent that happened the month before. It will just assure that I actually come with something interesting for yall to read. I will still write if something particularly emergent occurs and I am moved to write about it immediately. With that I close the book on January 2010, month 13 on dialysis. Until next month, I wish you all good health and great love.