Reflections

It is starting to settle in how different my life is now. In just 13 days my life has gone from “can’t” to “let’s do it”. Restrictions on diet, travel (the extension cord is only so long), and countless other things that I had long dismissed as just not possible are now doable.

The big one is no more dialysis. It has finally settled into my mindset that I am done for dialysis. At least for a while. The goal is 15 years and I’m going to fight like a cornered Wombat to reach that goal. I hated dialysis and that is enough reason to prolong going back to it as long as possible.

When I first started dialysis I was the model patient. I walked in with my characteristic “proud peacock” walk, sat down with a book for 4 hours and then strutted out again (sounds cocky but that’s how people see it so I guess I have to go with it). The treatments didn’t kick my ass as it did some other patients. The older and seasoned (to be fair I was one of the younger patients) patients looked at me with jealousy. On a side note the walk or strut that I have become known for is not new. When I was a Cancer patient back in ’97 I overheard another patient remark “what’s he doing here? He looks like a fine specimen”. And I was, I was going to the gym right after radiation treatments and I was in good shape. But I was 31, at 56 I still have that walk. Anyhoo, I made it a goal that I would never get to the point of deterioration that most patients do. There are a few who always looked good, I’m not saying I’m the only one. But eventually I did anyway and I hated myself for succumbing to it.


First came the sepsis/near death infection episode 2 months in. I almost died, no exaggeration. But I bounced back from that. I cruised for about a year until I hid a bad stretch of infections and diet-related complications. On a Renal diet even healthy foods could be taboo. A tomato, a healthy food contains Potassium. Without a functioning kidney to process it it may as well be rat poison. I see-sawed back and forth between too much and too little Potassium, Phosphorous and Magnesium, just to name a few. Sodium and fluid restrictions, if ignored would mess me up for weeks. I never really got those things under control despite uncharacteristic attention to my diet. It got to the point that I was hospitalized several times and the actual treatments became so uncomfortable that I was sometimes unable to complete the treatment. Imagine having a reaction to Phosphorous in which I was itchy all over, the itch would pop up like a whack-a-mole and it was so bad that I was thrashing in my chair. Imagine being held down and being tickled with 2 1 inch needles in your arm. It was miserable. Towards the end I was everything I detested in that room, I was just like the others. I must be an arrogant fuck to think that it wouldn’t. In short it sucks.
I heard yesterday that one of my friends there chose to stop treatments. He was dead in a week. It happens more than you want to know.

One positive is that I really love my dialysis nurses. I think they do God’s work and I appreciate them. They did more than stick needles in my arm, they   my welfare and genuinely cared about me; first in making a very difficult transition for me easier and then keeping me on course when confronted with challenges. Of course, I can only speak for myself, but nurses have a special place in my heart. I plan on visiting them when I am able and thank them for everything they did to make it to where I am today.

One nurse I am particularly fond of is Jesse. Jesse is one of the youngest nurses at the clinic and I have felt a special chemistry with her since the day I met her. We share a devilish sense of humor which is tampered by the strict codes of conduct in the clinic regarding patient interaction. Still, we manage to have flirty and somewhat sexy conversations in sneaky ways, even the exchange of glances or funny faces. I loved it when she was there, it made the time pass a little better. It’s safe to say that if there wasn’t a clinic policy against dating patients I would have asked her out.

Now I can. And of course, now that I can I’m seeing someone else. No regrets, Lisa is awesome and I’m nuts about her. And there are considerations with Jesse that make me reticent even if I was available. She is much younger than me, almost 15 years younger and she has small children. I’m not sure that I have the patience for young children and I also wouldn’t want them to get close to me and then not be there one day because their mother and I didn’t work out. Jesse and I talked about it. We had discussed covertly a few times about the possibility of dating and it was always “get a transplant and we’ll talk”. So we did. I put it all on the table and as it turns out she doesn’t want a relationship at the moment. She works a lot and spends every available free moment with her girls. As it should be. She’s a great mother and her girls are very sweet. She’s doing a great job as a mom. I don’t know what the future holds but I look forward to hanging out with her as a friend over coffee or lunch. As with everything in life, you never know what’s in store for us but it helps to be ready when opportunities arise.

Luckiest sonofabitch alive

Day 12 post-transplant. I feel great, no exaggeration. My blood pressure is regulated for the first time in more years than I can remember. A transplant does not guarantee lower blood pressure, there are many causes and I didn’t get much relief the first time. My blood pressure remained chronic. A kidney isn’t the only cause of hypertension but hypertension will destroy a kidney 100% of the time if not handled. So I already have a head start in keeping this one.
The pain is formidable but the Oxy’s are gone and I’m not refilling it. I’m walking around the neighborhood, with some difficulty but just the same. My head is clear and I can already feel the difference in my thinking and cognitive function.
I’m over the moon.

So, regarding the events surrounding that wonderful day let me just say that I was spiritual before that day. Today I am a believer.

In 2018 I was hospitalized with a septic infection related to dialysis. I received a blood transfusion. I would later find that the blood contained antibodies that reduced my compatability with the general population, with regards to donation (cadaver or live donor), to less than 20%. It was quite a blow. My doctors didn’t downplay it, it was going to hurt my chances. So when the brilliant head of the transplant department came in my room the morning after my surgery I asked him about it. So remarkably fucking amazing event #1 was revealed. 30 people had a shot at this kidney but inexplicably turned it down or didn’t answer their phones and other circumstances that I am not aware of. Usually the amount of people offered such a chance would be at the most 4 or 5 people. Kidneys have a short shelf life even when preserved. This kidney was out of the body for 16 hours before they even called me. Good thing I picked up.
I then asked about the antibodies. Dr. Brilliant, the most no-nonsense and honest doctor I have ever dealt with and never uses hyperbole looked me in the eye and said “no-one was more surprised and happy for you than me. Your odds were in the millions.” Winning the lottery type odds in other words.
Wow.

Remarkably fucking amazing event #2 was the timing of the call. My daughter and I were out on the motorcycle most of the morning. I took her all around for a total of 3 hours. My phone was in my pocket. Had the call come in I may have missed it and been passed over. As it turned out I would have had time but I wouldn’t have known it at the time. I received the call when on the boat. If the battery had not been dead and we were not waiting for a repair I would have been out on the water. I turn my phone off on the lake because it roams and kills the battery.

I don’t believe in fate. Only rarely do I entertain the notion of “things happen for a reason.” I am not religious. All I can think of to justify how I was fortunate enough to receive this gift TWICE is that I try to lead my life with a good heart and a clean conscience. I try to help people and I like doing good deeds. While my zest for life diminished a bit as I declined in recent years I still tried to be about others. Selfishly, it does keep your mind off of your own problems. Maybe that time I cleaned the snow off of the roof of a lovely elderly woman in town. I spent 4 painful hours doing a task that I was not in shape for but it felt right to refuse her money. I did it because I care about her. Maybe that was the one. Maybe my work on my Masonic charities, mostly anonymous giving which is the best kind, pushed me over the edge of good fortune. All I do know is that I am, to quote my oldest son, “the luckiest sonofabitch alive.” Is luck a thing?

I do know this with great certainty. Deeds done in exchange for deeds is doing business. It’s not charity. Doing for someone who can do nothing for you in return…it’s just the right thing to do. I want to believe that it was an unexpected award from the universe in exchange for the positive energy I have always tried to put into it.

Or maybe I really am the luckiest sonofabitch alive. I’ll take alive any day.

The call

I can’t believe that after all this time I may have to rename my blog. From day one Superman can’t find a phone booth has primarily been about my struggles with Chronic illness and rebuilding my life after losing everything and moving in with my mother. In the process, I told my story, made some wonderful friends, and learned the stories of others. It was very therapeutic. But now I have to shift gears because
I GOT MY KIDNEY!

A week ago Sunday my daughter came to visit. My little baby has grown up and at 19 she has a job and a decent social life. She has also been under the umbrella of a terrible depression lately. I had been looking forward to her visiting me, I was eager to have one of our heart to hearts and hoped to glean some insight as to how to help her, if possible. She arrived early morning (she likes to squeeze as much out of our visits as possible) and I made her breakfast and we chatted over coffee. She seemed to be in a good mood. That made me happy.

The morning passed without event. With the exception of the excitement of having my daughter for the weekend, I felt like I always did. Like total and complete shit. Life had been hard lately, I had to struggle to even attempt to fake the upbeat and optimistic person I always strived to be. Dialysis was kicking my ass and despite only being on it for 3 years I experienced more than my share of complications. I had been sleepless, devoid of energy and uncharacteristically void of hope. I wasn’t thinking of giving up but I was as low as I’ve ever been.

After lunch the clouds cleared. The lake effect is powerful where I am and the clouds are always there in the morning and you never really know if they are going to burn off. My daughter asked to go out in the boat. We packed and went to the Marina. Once the dog and the cooler were in and we were ready to go. I turned the key.
Nothing. Shit, the battery was dead. I had left the boat uncovered and the hold containing the battery had flooded. The automatic pump had killed the battery. My mom went to flag down a mechanic and my daughter and I stayed in the boat. We sat there waiting, made small talk and played with the dog. My phone rang, the caller ID read my Transplant team’s number.
I knew that I had an appointment coming up and I was expecting it to be a robocall confirming. I picked up and heard a human breathing on the other end. So I said “What are you guys doing working on a Sunday?”
“Well”, the woman said, I was hoping to give you a kidney today”
I almost fell off of my seat.
I repeated the sentence verbatim, not sure if I meant to but that’s what I did. I looked at my daughter and her jaw was wide open. I put it on speaker. There was a bunch of qualifying questions she had to ask. Recent hospitalizations, any open sores, dental issues, distance from hospital etc. I answered all of them satisfactorily and she told me that it was between me and one other person but the odds were enough in my favor that I should get in my car and start driving right away. The hospital is 2 hours away. We bolted for the car.

The 2 hour ride, despite my driving like a complete and total asshole, still took two hours. Traffic was not thick but it was slow. But I got there within the time frame that I told them. Nobody in the ER was expecting me. For a really good hospital, the receptionist in the ER was less than professional. You would think that the sentence “I got a call from the transplant department, they have a kidney for me” would be self-explanatory but her face was similar to mine when faced with a math problem. Blank. I lost my temper. I’m not proud of it but I did. People in the ER waiting room got it but the staff didn’t. I made it clear that if I didn’t get the kidney because they didn’t know I was there that I was going to go apeshit. A triage nurse soon came to the rescue. He knew. Whew, that part is over.

I waited over an hour before someone came out and told me that I had beat the kidney there and it wouldn’t be much longer. Soon, a team of smiling people in scrubs came out and announced that the kidney was indeed mine and that I should come on in for surgical prep. Anesthesiologists, nurses and a team of support staff greeted me at the door. They actually clapped as I was rolled down the hallway. They were great.

Finally, I was wheeled into the operating room, still conscious, where I saw my surgeon. Dr. Dailey is a giant man, six foot seven at least. His eyes smiled through his mask as he prepared the kidney. I asked to see it. He held it up, it looked like a big chicken breast complete with the fatty tissue still on it. Very cool indeed. Ten minutes later I was under.

There is so much more to tell about this. It will be at least an entire post to go over it. As a tease, let me just say that the head of my Transplant team, a highly respected Doctor known internationally for his work in Transplant Science who never indulges in anything but concrete facts told me that my odds of finding this kidney was, and I quote, “in the millions.”

Superman has found his phone booth.

to be continued…