95) Questioning Posting

January 27, 2007

El Milagro:
I’m here at 3:30 today and walking in past Herman the Nurse, asking if he will come look at my arm when he gets a moment. Well, he comes over and checks it out: I have noticed a lump in my arm that seems like it is in my vein about an inch above the pin-cushion area where they stick me up and down a stretch that runs about 4 inches up my arm. He feels it carefully and reports that there is a lump (duh!) and that it is not in or part of the vein. He shows me how he moves the vein aside and the lump is still there, so it is maybe in my muscle. He says if it doesn’t hurt or get bigger I shouldn’t worry about it. I replied that I just didn’t want it to turn out to be a clot in there. He explained to me that clots usually feel gushy, not hard. Since Herman is giving me a medical opinion, he sticks around and sticks me. Turns out the dialysis machine is not connected properly (the transducer line isn’t tightly connected) so he has to finagle the machine to extricate the air bubbles from the lines so the machine doesn’t sound it’s alarm every few minutes. These machines are calibrated carefully to sound an alarm when any of about a hundred things go haywire.

Ron the Nurse comes up and I ask him about a form I completed last time I was here. It was a form that documents that I know the rules of the facility. One of them had to do with not cutting my toenails myself; recommending that a podiatrist do it. I asked Ron about this one and he replied that that rule is really for the people here who are diabetics. I replied, “Why don’t they specify that then?” and Ron and Herman both replied, “Because 90% of the patients here are diabetics, so the form is written for diabetics”. That was an interesting detail that led me to ask how many people are here because of PKD and it turns out there are only three of us! Aside from the diabetics, most of the others have kidney failure as a result of hypertension. I had always hoped there would be more PKD folks and had planned to get to know some of them to compare my experience with theirs. Oh well. In this conversation we also briefly touched on the passing of Sandra (Post # 52 in September) who died on Christmas eve after a stroke. Around here we can go for awhile before we realize the absence of something that at first seems to be a nuisance. In this case I remember that it had been awhile since I’d heard a person who is part of the group saying “help”.

I was in Houston yesterday and at some point catching up my colleague and friend, Deborah, on the dialysis adventure; trying to explain that it has become boring now that I’ve been doing it for almost nine months (I could be birthing a kidney right now if it was a pregnancy). Boring is only the best word I could come up with at the time: meaning that nothing in the experience is new and curious at this point… it’s more like a chore that must be done with no chance of making it into a “fun”, or “educative”, or “developmental” activity. Deborah responded that maybe it is now an emotional drain, but that’s not quite it: mostly it is just tiring. I’m tired of it! Oh well.

So, today I’m watching UT basketball; one thing that helps pass the time here where I am tired of the experience. UT and Baylor played a good game in the respect that UT didn’t just beat them to a pulp. UT was lackadaisical and Baylor played pretty good, and at the end UT won… “Whew” We didn’t need to lose another conference game.

So, I write on and wonder at times why I even do this. I do enjoy the writing part, and as all writers, I guess I partly hallucinate that someone will read it and either learn something, or get a laugh, or be reminded of something that is flitting around on the edge of their consciousness. When the experience of dialysis is “boring” I am led to further consideration of the purposes of writing, since the original goal was to document the experience of dialysis. I guess I could go on indefinitely documenting how boring it is but that sounds very adolescent when I say it to myself. “I hate dialysis. It’s so boring.”, he whined pubescently. Another goal is to use this medium to advertise my need for a healthy kidney and a munificent doner person. So, in the service of that goal, I guess I should write, write, right? I worry sometimes that I’m just composing for my own aggrandizement, and then I think that that concern probably keeps some people from writing at all. I have to move beyond that worry and positively hallucinate that there is a good reason to continue this even though the actual experience of dialysis is becoming a bore. For now I conclude, “Oh well

------"The sooner you fall behind,

-------the longer you have to catch up."

-------------------------Garrison Keillor*

Notes: In at 75.7 and out at 72.9 Kgs. (I have gained some weight and Herman adjusted my dry weight to 73. That’s 160 lbs!)

* Keillor, G. (2007) A Prairie Home Companion, available online at http://prairiehome.publicradio.org/


cheryl martin said...

Hey Jack - Well, I for one, laugh, learn, and lament with you as I read your blogs. I read to know you more and, in all honesty, to know more about my brother. If you can imagine, I never really asked him much about his dialysis experience (we weren't very close, but now I don't see that as an excuse). I'm glad that dialysis is available to you, but I am so sorry that you are so bored with the process. It's not something that you have chosen to do. It has been forced on you and,while it has helped your health, it is not how you want to be spending your precious time. There must be many phases to accepting/dealing with this in your life. You know how grief has so many facets? You surely have grief/loss feelings somewhere inside about all of this in your life. Oh okay - so it's NONE of that - you are just bored! I get it (but I am a social worker, too - I have to put my two cents in!):)

I was surprised to hear that most people are diabetics. I didn't realize they suffered from kidney failure. See? I learned something.

And, believe me - I laugh at what you write. You are funny!

I just don't have the one thing you want - a kidney. But, I'll keep my ears open for someone looking to get rid of one! I'll let you know. Love, your cheryl

Jack Nowicki said...

For the other lurkers and interested readers, Cheryl had a brother who died from complications from PKD, aftrer being on dialysis for some time. JN