No more postponements; time for the Big D

Twenty-something years after finding out I’ve got Polycystic Kidney Disease, and nineteen or so months after entering end-stage renal disease territory, I’ll be starting dialysis on Friday.

I’ll have a couple of “brief” treatments at the hospital on Friday and Saturday, and then, on the following Tuesday, I’ll start my regular thrice-weekly stint at a local dialysis center. The regular treatments will run somewhere in the neighborhood of three-and-a-half to four hours, starting at 6AM.

As I’ve said before, I have not done a whole lot of reading about others’ experiences on dialysis, because I would prefer to have somewhat of a blank slate concerning the possible outcomes rather than worrying about the seemingly endless possible complication that can result. When ___x____ happens, I’ll Google it to see if it’s common, but I don’t want my mind littered with all the information about all the x’s and y’s. I’ve heard some advice along the lines of “make sure that they…” and “tell them that you want…” and while all of that preparation may seem like a good idea, it is overwhelming for me.

I am dealing with job stress, career dissatisfaction, sick pets, a sick house, financial woes, and a crummy, lonely social life. My thought on dialysis right now is that I simply have to do it. I simply have to deal with it and whatever comes with it. It’s going to be part of my life for the foreseeable future, so there is no use worrying about how lousy of an experience it might be.

I don’t know how much I’ll write about dialysis…likely whatever I feel is helpful for me to write down. I don’t expect it will be a source of amusement or inspiration for anyone. It’ll just be what it is…an all-too public journal of how I deal with dialysis. I thought of starting a new blog in which I’d just write about dialysis, and I’d make it anonymous so it would not be encumbered by other personal details about my life, political beliefs, etc. I probably won’t be doing that.

Advertisements

6 thoughts on “No more postponements; time for the Big D

  1. I’ll be wishing you the very best on Friday. (I’m glad you realize that “brief” is to be in quotes when discussing a hospital visit! Take a book.)

  2. I think blogging it would be great for other folks who google what to expect or whether their experience is ‘normal’.
    Starting dialysis has got to come with mixed emotions, but here’s hoping that it drastically improves the way your body feels. Not to minimize the situation, but it’s like when I had a cavity filled in that tooth that I didn’t even know was bothering me… I had become so accustomed to feeling like crap that I didn’t even realize I felt bad until they fixed it and I felt better.
    Oh, and let us know if you need reading material; there are plenty of books around here that you won’t get fined for losing in a state of ‘post-dialysis bliss’ (unlike library books). 🙂
    My final thought is that appointments for the “Big D” would be greatly improved by the presence of “Heavy D”.

  3. Sorry to hear about your situation. If you go to DaVita in Durham like my wife, you have the option of doing home hemo or peritoneal dialysis. I would strongly recommend you consider home dialysis after you have adjusted (if one ever can) to life on dialysis. I’m guessing you have probably thought about transplants, well get on the waiting list. Get a fistula, catheters aren’t fun and will become infected eventually. You can ask everyone you know to become your living kidney donor, but realize that you may not match to begin with or may reject their kidney after a few years.

    Read Bill Peckham’s blog: http://www.billpeckham.com/from_the_sharp_end_of_the/
    and go to ihatedialysis.com to hear from other CKD5 patients.

  4. Oh…. I see you have a fistula and Bill has you on his blog, well then you are all set. Your fistula is probably going to get bigger as they use it and you may loose weight as they try to establish your “dry weight”. Be prepared for changes.
    My wife has been on dialysis off and on since she was 13. She is 28 now and went to college, has had 3 failed transplants, married me, and we had a baby last year while she was on home hemodialysis. She currently does dialysis for 2 hours at home 6 nights/week. Yes, there is life on dialysis.

  5. @Valerie – Thanks, and I know dialysis is not the worst thing in the world. If your little bean can handle all the pain and prodding, I can handle a little dialysis needle.

    @ACW – Thanks. I’m looking forward to the possibility of maybe feeling a little better.

    @Kevin – Thanks. I will be at the DaVita West clinic starting Tuesday. (There may be more than one DaVita in Durham…this is the one near Hillsborough Road). And, yes, I’ve got a fistula, which is already huge, and my neprologist always comments on what a great job the surgeon did (it take two attempts to get a good one). I don’t have anyone with me at home for home dialysis, but I do plan to try out the overnight in-clinic service in about a month if all is going ok.

  6. Good luck today. Jenn goes to DaVita Durham West too. They had a leak in their water room about a year ago and have just renovated. Hopefully you will have control of your TV and not have to watch the movies they were playing in the temporary clinic. (Most dialysis centers have individual TV’s, but in the temporary center they chose to put up a few big flat screens and play old movies all week.) You’ll get to meet Jan the dietitian soon enough. She is nice, don’t take all of her recommendations the wrong way. Somebody has to have the job of telling you to limit your dairy and bananas, etc.

    I don’t know if they like buttonholes incenter or not, but learn about buttonholes for fistulas and how to stick your own. Buttonholes are using the same holes for every stick. They become like piercings and don’t hurt as much when stuck. They flip flop on them incenter.

    Nocturnal daily hemodialysis is the best dialysis. The mortality rate is the same as with cadaveric kidney transplant. I have a feeling that if it is incenter, you will still only go 3 times a week.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s