A few weeks back had an new transplant workout done at the Cleveland Clinic. At that time we needed to update some basic medical clearances in order that if and when a kidney becomes available I will be "ready" to go. The tests included a CT scan of my abdomen to see where everything is after a lifetime of surgeries, both kidney replacements and removals. A dental exam making sure no periodontal disease or other dental impairments are present. Also done was a test to see if my bladder, which has not been used in over six years, is functional and physically operational. I had this test done today. A bit unpleasant, catheter and filling a muscle that has shrunk from non-use over the past years, but at least it was short. It only took an hour to have the procedure done, and I got to watch the screen to see just what the Radiologist was viewing, in real time. I have always found it fun to participate in the tests I have been subjected to in my life. I even remember watching a fistula being put in when I was 12 years old. It was wild to see in the mirror above my head on the operating table my arm cut open and the veins and arteries tied together while I, properly numbed and sedated, but not asleep, everything going on while a radio with music played in the operating room. Funny memory. Dr. Fire something at the Clinic. He was cool.
I guess I have taken my participation and ownership in my own health for what it is worth.
Anyways with all the required tests done now I can now check off that list and go back to just dialysis and waiting.
It has been a weekend of warm weather, my son's basketball games, and some running. Even though the runs are still a bit difficult with my hemoglobin low, it has been getting easier. Since my little infection in late January I have dealt with some "readjustments" in my overall body balances. Everything is interconnected. Infection leads to low hemoglobin, low hemoglobin, leads to changes in the delicate balance with my meds that keep my blood pressure in line, and both of those lead to overall difficulty in my energy and workout regimens. Oh I forgot the treatment for any infection (bacteria) is to receive weeks worth of antibiotics. Antibiotics can also effect your overall hemoglobin and in some cases your GI tract.
Bottom line is that the last few days have found some getting back to normal for my entire system. While I have run six days a week since February, even with the compromises, It really has not been fun. Running with these issues makes it feel like I'm trying to run underwater, as I gasp and shuffle through three to four miles. I can still do it. But the work is greater. This week has found me receiving a bump in my epo amounts during dialysis, and an adjustments in my blood pressure meds, which also makes things better too.
The runs the past few weeks have found me remembering that it is the effort in the run is the only real measurement that matters, not the speed of the pace, or the time, or the distance. Work effort is work effort. Do what I can, and just keep moving and breathing. The success is in not quitting. Maybe just showing up ( and on time) in life can be the victory. I learned this from the example of my now passed away Grandfather Klapp, who always just showed up and did what he had to do, whatever that chore may be; taking care of my Grandmother, serving in World War II, and many many other life works.
It has been a jam packed week. Made it to the Cleveland Clinic on Tuesday for a visit with my transplant team. The last time I was there for this transplant work up was over 7 and 1/2 years ago. They felt at this juncture, with my history, and the recent almost kidney, that it was time for us to sit down and hit the refresh button to review where things stand. This is from the obvious things like, my current health, my living circumstances, and goals, to the not so obvious about my thinking, the new procedures that are available an so on.
I have been (apparently) on the "top" of the transplant list for the past several years. But being on top really has no meaning because of the fact that matching me with the right kidney is not easy. It is out there somewhere, and it does exist, but when you consider those factors with the low number of organs coming through, it means I have a wait.
Of course I have already had, and by all medical standards for dialysis patients waiting for organs, an extremely long wait. Many other patients by this point of over seven years are either in one of three categories; transplanted, given up and are just doing dialysis, or more likely deceased.
Many things were discussed, and due to my extreme fitness and health levels, considering my state of affairs as only a dialysis patient, that I, and they (my transplant team in Cleveland), have no problem waiting for the right organ to come along, even if, and very likely, is still years away. While they may be more, as they say, hail mary options out there, it would statistically leave me in a less quality of life position that I enjoy now. It does not make sense. As I said to my doctors, I did not come in suffering to the appointment with worry and fear about my future, and I leave Cleveland feeling just the same. My status quo, while inconvenient at times, is good. The right kidney will come. I'll probably get the call someday while I'm out running in the park, or watching one of the kids playing some sport.
As a bit of a post script to this story. If you have never been to the Cleveland Clinic recently. I believe it is worth the trip to see one of the world's great medical campuses.
My wife and I on our way out from the day long appointment enjoyed sushi, fresh gourmet tea, and a beautiful view, right there in the Clinic. All in all it was a very good day.