Despite being on dialysis I see myself as a relatively healthy, yet rotund, middle age guy. The training that I started in January has increased my strength and self-esteem. I recently golfed eighteen holes with my longtime bud Joe. I walked the Susan Komen Race for the Cure with my family clocking in ten minute miles despite having to reach for snacks for the kids every ten minutes and adjusting their clothing every fifteen. I canoed across Lake Lansing a couple of times which includes loading and unloading my seventy five pound canoe. And, I've been going to the gym twice a week. All these activities transpired within the last three weeks. Not bad for a guy who has been on dialysis for ten years.
This is the guy that I like to see me as. However, there is a guy living a parallel life. This is the guy with the disease. This guy picked up the phone yesterday and heard Alicia, his transplant coordinator at the University of Michigan, say that his recent EKG was abnormal and that his listing for a new kidney will be on hold until it gets it sorted out. He heard this on his way to a surgeon consult who with an intern watching gave him the old digital one-two, which felt like five, while pointing out that there is active bleeding to his colleague. "See the red stuff there?" Of course this guy responded when asked if I minded the intern's presence with, "anything for the annals of science." Rim shot, please. I was at the transfusion center the other day and as the nurse completed the IV set she said, "that slipped in easily." To which this guy said, "that is what my doctor said." Rim shot, please. I'll be here all week. Tip your waitresses, please.
This other guy has to deal with the lack of stamina. While exercise Erich can't wait for the next workout. Diseased Erich has to wonder why he is exhausted for two days after his workout. The answer is pretty simple. It is because my hemoglobin, or red blood, count dropped down to 10.00, again. It appears that the rear leak needs to be addressed. I assured my wife that I would leave the South Park humor behind me as I addressed this sensitive subject. I tried.
There is a chance that my fatigue is due to my mysthenia gravis coming out of remission. I was diagnosed with MG while completing my undergraduate at Western Michigan University many moons ago (1989). I thought the dressing my wife had made was just too sour and that was why I had trouble moving my mouth and swallowing. Though I couldn't link the double vision to the salad dressing. Now that was challenge driving. MG also causes weakness in the shoulders and arms. Thanks to an attentive physician's assistant at the WMU Health Center I was soon in the care of neurologist. The steroid treatment only succeeded in transforming me into what my friends lovingly referred to as my Stay Puff Marshmallow period. Not really enjoying this we went to Plan B. Plan B consisted of cracking my chest open and removing a little, apparently not so necessary, organ called the thymus gland. That did the trick. Along with a little medicine, I later hiked the back country of the Grand Canyon and basically lived a very active life, well until the kidney went kerplooie. If we successfully improve the anemia and I'm still fatigued I will get a neurology consult. I want to make sure I'm able to paddle for fourteen days.
I am scheduled for a Dobutamine Stress Test later this month and hopefully will be cleared for action and to get off the hold status on the transplant list.
Next Monday I have a meeting with Kidney Transplant Department Head at the University of Michigan. This was scheduled before I found out about the EKG. I hope to find out if there are new procedures for desensitizing my high level of antibodies and addressing my FSGS if a kidney does become available. At nine years on the list I'm at the top, however, because of my past two transplants I have a high level of antibodies which will promote rejection of new tissue. And of course, the FSGS just shuts the kidney down immediately. While a transplant that works would be great, the odds of getting one to work are not high for me. So, long ago I came to terms with being on daily nocturnal hemodialysis as a way to stay alive. That is why I say, dialysis is the true gift of life. I'm proof.
I was scheduled to see my trainer Roxanne today. I was already to work out when Andria reminded me that I should tell her about the EKG. When I told her we agreed it would be best to wait for the results of the stress test before I went back to the gym to push it. Instead of working out, I went to Woody's Oasis, my favorite Lebanese Restaurant, and had an eggplant sandwich. It lifted me spirits a bit. I have been enjoying Woody's food since 1989.
I'm not complaining. But, because I truly want to inspire others with chronic illness or kidney disease to take control of their illness and get outside and be active, I figure I have to keep it real. The reality is I like the exercise me much better than the diseased me. I have to live with both.
As I was leaving Roxanne complimented me on how well I was taking the news about the abnormal EKG. I held back a laugh and told her that after ten years of disappointing health news - twenty if you include the infertility - I have developed a calm wait and see attitude. The miracle of the human body is its resiliency both in mind and body.
Jacob and Antonia will be coming home soon so I need to find my healthy Erich self. It won't be hard. Just being with my children brings joy which is always a stimulant. Time to post and step outside to walk to meet Jacob at school and then Antonia at the bus stop.
Dialyze for the Prize!
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