98) In Which We Learn About Nathan’s PKD and Shayna’s Defense

February 2, 2007

Blog Watch:
Spent some time checking out other dialysis and kidney-related blogs, after getting the comment from Jenna (See Comments on Post #97). Found a blog for a guy named Nathan who got a new kidney after losing his kidneys to PKD. It seems that Nathan has had much more trouble with his PKD than I have, and as I read about his adventure I feel very fortunate again that my situation is livable. He just got a transplant in January and is doing well according to his writings. You can read a letter he wrote to the donor’s family at his blog, Nathan’s PKD*.

February 3, 2007

Shayna’s basketball team won their game against another all-girl team this morning. It is amazing how much she has improved in just the four games she has played this season. She is covering her person like glue, with her hands up, watching the ball, and going to the basket for rebounds! This coach (Ken Osborn) is the best coach I’ve seen for these younger kids. He is taking a very proactive and individualized approach to working with Shayna. He gives her pointers throughout the game and looks for exactly what she needs to work on and then talks to her about it after the game and during practice. Since she is the tallest kid on the team, he is concentrating on her rebounding and playing defense. Today she got three rebounds and dribbled one all the way down court to shoot. Her shooting still needs some work (two for 0 today), but she is getting much more assertive in taking the ball away from opponents and in moving inside to take a shot. Liz and I laughed this morning because the coach and I were yelling the same things at Shayna as she played, he from mid-court and me from under their basket. She pretty much ignored me but listened and nodded when coach directed her from the sidelines. My thoughts are that this kid, if she continues to like b-ball, and sticks with this coach for a couple years, could be the high school b-ball player in the family! She’ll be tall enough and a bit heavier than Katie so she'll be more of a presence on the court. I’m gonna video-tape one of her games for posterity.

El Milagro: I called in and talked to Matt the Tech at 2 and he said “come in at 3”. I arrived and Matt stuck me smoothly while I am already focused on the UT – KSU basketball game. This was a good pastime until the end of the game, when UT LOST! I don’t even want to discuss it. Their choice to use a zone defense opened up KSU's outside shots and they hit twice their normal amount of 3-pointers. ARGGGHHHHHHHHHHHH!

Herman came by and at some point he mentioned that “everyone” is reading the blog, to which I answered, “Oh great. And I just put a personal email from Connie up there… I hope she’s okay with that”; to which he wondered why it would matter. I thought out loud that I can always change things later, to which Herman responded with something like, “Keep with the truth”. I replied, “There is NO Truth with a capitol T… there are only truths with little 't's in this day and age.” Actually, there are as many truths as there are brains to conceptualize them (see definition of radical constructivism**) in the viewpoint of constructivists, which are a subgrouping of post-modernists.

Later Matt comes up and says nonchalantly, “I overheard you and Herman talking and I’ve been reading your blog but didn’t want to tell you.” He continued that in his reading of the blog, he liked my honesty, he thought that I was very perceptive, and that it is a good thing for him to read about dialysis from the viewpoint of the patient. Somewhere in the back of my brain I’m curious about why he is telling me that he didn’t want to tell me.

I agreed with Matt’s analysis and added that it is okay for he and anyone else to read the blog, and as a matter of fact I want as many readers as possible. My objective continues to be to educate people about PKD, the Transplant Crisis, my own desire for a Living Donor, and to give people a smile or laugh while I’m turning them on to these serious issues. Onward through the Fog!

Notes: In at 77.0 and out at 72.6 Kgs.

BTW: I've been chewing the Fosrenol tablets (my new binder for de-phosphorizing myself) in the middle of each meal (wondering every time what counts as "a meal") and then trying to get the taste out of my mouth with any liquid I can find and getting back to focusing on enjoying my meal. This process is rather easy to remember but not so enjoyable in that it takes me out of the savory and devine experience of eating for a mouthful of chewing a roughly mintlike horse tablet that dissolves into the chalky taste of a mouth of gloppy cotton. I remind myself of a dog eaating peanut butter.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* Nathan’s PKD available online at
** von Glasersfeld, E. (2007) Definition of radical constructivism. Retrieved online February 2007 from the Radical Constructivism homepage at


Anonymous said...

I watched a program last night called “Surgery Saved My Life” and thought of you. It was about a Triple Kidney Transplant. Here is a synopsis from the Discovery Channel Website:
Three pairs of complete strangers try to save each other's lives. Six Americans from across the country take part in a high-risk and high-stakes "triple kidney exchange" that could save — or end — the lives of three of them. Three are stuck on dialysis, and on a long waiting list for a kidney. All three have unusual cocktails of antibodies in their bloodstreams, and they will probably die before they can get off the list. But, in a unique donor-matching program at Johns Hopkins Hospital, in Baltimore, they get a chance to receive a life-saving kidney from a live donor. The operation could extend their lives by 15 years or more. But there's a catch: they must supply the donor themselves and that person must be willing to give up their kidney ... to a perfect stranger.

It was interesting in that a man posted his need for a kidney on a Website and a perfect stranger was willing to donate her kidney but it did not match, so at JH Hospital this program allows a “trade” with someone else who may match as long as your donor is willing to donate to someone else. A man (recipient) and a woman (donor, perfect stranger), a husband (recipient) and wife (donor) and a father (recipient) and daughter (donor) ended up in the program and “switched” partners. I hope you will be able to catch the episode.

Herman the Nurse

Jack Nowicki said...

Thanks Herman ~ I'll try to catch it sometime at the dialysis center cause I don't have the cable at home. JN

drphunk said...

Hi Jack,

Thanks for reading my page and leaving a comment. I've had a read of your site and I'm impressed. I think that there are a few differences between dialysis in Scotland and in America from the sounds of things. I'm a junior doctor doing my general medical training and I finished my 4 months working on the renal unit in December. I'm now working in a cardiology department.

Working as a doctor on the renal unit was difficult. I was the most inexperienced member of the medical team at the time and the learning curve was steep. I spent two months working on the inpatient renal unit with acutely unwell patients followed by two months working at an outpatient dialysis unit in another hospital. The outpatient unit had 120 patients split between four shifts on HD 3 times a week. It was just me and a consultant (senior doctor) looking after these patients although the consultant was often not there. I also had to work at 3 busy outpatient pre-dialysis clinics a week as well as doing a 24-hour on-call covering the acute hospital and new referrals every 8 days. It was busy. What are medical staffing numbers like a at your unit?

I enjoyed renal but I don't think I could do it for the rest of my life. I found that you get more attatched to your patients than you do in other specialities and that it can be difficult if something goes wrong for someone. I have a lot of respect for anyone who chooses to work as a nephrologists and for patients who cope with a difficult condition.

I was interested by your comments on Bin Laden and dialysis. I think he has probably had a transplant. I would imagine that both PD and HD would be difficult to survive if you were the most wanted man in the world.

There was an interesting article on dialysis patients in the american prison system in a recent issue of the new england journal of medicine. I don't have the reference to hand but it was a good read. You should check it out.

Good luck for the future. I hope everything continues to go well.


Jack Nowicki said...

Naill ~ thanks for the feedback. To answer your question about staffing at the center: they have a 1 (patient) to 3 (staff) staffing level on all shifts. So, at any given time there are 8 staff on duty (usually 4 nurses and 4 techs) which will cover 24 chairs. This staffing ratio is either a state or federal regulation... I'm not sure which. JN