A few notes about me

Last month I went to see my nephrologist (kidney doctor). I’ve been seeing a nephrologist all my life because a rare kidney disease runs in my family (and kills people).  So my appointment was not really a big deal to me since they always just say that my kidneys are slowly losing function, but at the rate of deterioration we’d seen over the last 40 years, they would not fail totally until I am about 80. WELL… this time the doctor comes in the room and says “We have a problem.” It seems that something has changed in the couple of years since I was last tested, my calculated function dropped from 48% to 13%.  He said I am now at “End Stage Kidney Disease” and at the rate of deterioration, they will soon fail entirely.   That came as quite a shock.  He went on to say that he would send my information to the kidney donor system, but it generally takes four years to get one.  Though he didn’t say it directly, he seemed to indicate that he didn’t expect me to live that long.  I looked it up, and the mean survival rate on dialysis is only 3 years even though it is possible to live on dialysis for up to 20 years. This past week I got a letter from UN0S (the organization that allocates donated organs in the US), they said that I would not be put on the wait list for a donated kidney until I lose more weight. So, I won't even start the waiting period for now. This is quite ironic since my little “post-career” job is working with my state’s affiliate of UNOS to help match donated organs with recipients.    I had never really considered how little thought I gave to the idea that I would live well into my 80’s like my father and grandfather.  All my planning had just assumed that I had at least twenty more years to get all the things done that I needed to do. Time is simply not something I’d given a great deal of thought to. Over the last month, I have done a lot of reflecting. The truth is that I have nothing to complain about. I’ve had a great life and have had opportunities to make my life count for things bigger than myself.  I spent most of my career working with people (mostly children and teenagers) that need help. I do not regret one bit how I have allocated my time on earth.  On top of that Paula and I have lived a life that most people can only dream about having. No, we do not have a big house and fancy cars, but we have had a life of love and joy. I have two wonderful adult children and one grandson (though I would like my son to get on the stick and give me another grand before I go).  One thing I most definitely want to do is to finish reworking and illustrating “In Search of the Final Freedom.” At the rate I’m going that will take about two more years.  One thing about modern dialysis is that I can now do it at home. While being hooked up to a machine for 9 hours a day every day seems terrible at first, I was told I can sleep or work at my desk for that time.  The question is, what will happen to my great opus once I’m gone. I really don’t know. I know I’ve said it before, but I am quite thankful that I took the time to write down our “adventures” that now make up the 400+ pages of “Our Decades of Open Marriage.” Each time I get another chapter to post, I remind Paula of this or that thing we did in years past.  That project is coming to an end since there are only seven more parts before our social life came to a close with Covid then Paula’s illness. That project too seems like something I want preserved, but I’m not sure how to do that. The one thing that eats at me though is what will become of Paula when I’m gone. She is only 63 and her mother is still alive at 97.  For years,  I never worried about her because I knew full well that if something happened to me she could get a new husband in the blink of an eye. The one downside of my career focus on helping make the world a better place is that we have absolutely no savings or retirement. I went back to get my PhD for the express purpose of getting a college teaching job that I could keep doing into my late 70’s.  But she got sick so she can no longer go out and meet eligible men and even if I’d gotten that plum teaching job, it would not have made my kidneys last longer. I’ve talked to our kids already about it, but the whole subject makes them very uncomfortable. So, for now, I am exercising every day, living on a very strict “renal diet” to preserve what remaining kidney function I still have. I was doing those things even before my recent visit to the nephrologist. I’ve already dropped my BMI to the point I should be able to get on “the list” when I go back to the nephrologist in April.   And of course, Paula is praying for a miracle.   I’m sorry if this is sort of depressing, but I know my productivity on the website has been lower this past month. This is the explanation.