30 days

Well, today is 30 days since my surgery. The 30 day mark is big with transplants. It is usually known at this point how well the organ is working and if it is not adjustments are made and if it is working well then they give you a little more freedom. I have been going to the hospital twice a week (2 hours each way) and have been required to monitor every drop of fluid going in and out. It isn’t difficult, just tedious. Because I’m doing so well, I am down to once a week effective immediately and today I can stop monitoring my fluid. It really is going as well as can be possibly expected. I feel good about things.

I’ve been giving a lot of thought as to the direction of my blog now. With notable exceptions I have dedicated most of my posts to illness and the obstacles associated with. I think I’ve told my story about illness, now it is time to write about the joys of being healthy. Yes, even at 30 days out I already feel healthy. My head is clear, I have energy to work out, I’m recovering some muscle and putting on a couple of pounds (I need to, dialysis robbed me of all the muscle I had) and I’m remarkable impatient to start doing the rehab work in biking, hiking, lifting and hitting the heavy bag. I’m probably already pushing it but I can’t help it. Shit to do and places to go.

This whole thing has been a blur. Despite being of clear head I still haven’t completely grasped the magnitude of my good fortune and sheer luck (or divine intervention?) and the series of cosmic alignments that allowed it to happen. The realization that I am done with dialysis is the big one. The timing of this was nothing less than amazing, I was really suffering through dialysis and it was making my life miserable. I feel like I have a whole new level of freedom. I am giddy at the thought of riding Sturgis and the Americade next year. Free to ride, free to travel and no need to find a clinic nearby. The extension cord aspect of my life is over, at least for now. The fantasy of Kerouac’ing my way across these United States is now more reality than ever. I can take the RV and just go. This is not just a pipe dream, it is something I am going to do someday. And I’m going to take my time. Dreams have now become reality.

So I was thinking about new directions for the blog. I have always wanted to write about my work history. I feel that my experiences may help someone. I also want to write about marriage and family, raising children and of course divorce. In the process of forgiving both my wife and myself and letting go of a lot of anger I feel that my experiences as a husband and father may also help or at least be of interest to someone. I don’t think I have had a great life, I certainly wouldn’t call myself successful, but I have had some interesting experiences and I have lived some funny stories. The sky really is the limit.

I look forward to sharing the other side of me, the healthy and again optimistic me. Brace yourselves, none of you have ever dealt with me when I felt good. Parental guidance suggested. You’ve been warned.

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.

it’s here

Yesterday I had “the big” appointment. A meeting with the entire transplant team.

It was a huge moment if you consider that at one time I wasn’t guaranteed to be approved for transplant because of the tendency of my disease to come back and infect a new kidney. To be fair, I wasn’t in love with the idea of having another transplant and wasting the most selfless gift a person could give in a mere 5 years. I would rather die on dialysis. My youngest son became furious at me when I told him that, he said he would donate a kidney to me if it only lasted a year. That kind of love is hard to find.

The meeting was a group session to start, there were 6 patients in all, most accompanied by supportive family. I was the only one in the room on the second go-round. My doctor, a brilliant man renowned in transplantation gave a 90 minute lecture on all of the details of dialysis, patient mortality rates for dialysis vs. transplantation, and this particular hospital’s (and his own) reputation and statistics vs the rest of the country. They were very encouraging, Despite the fact that I slept through most of it. The night before I slept for a whopping 1 hour. Insomnia, a lovely side effect of end-stage renal disease, has been kicking my ass.

After the group session we broke off into individual rooms where we were all to meet one-on-one with financial coordinators (they handle insurance and offer financial assistance), social workers, the transplant surgeon himself (they only have one), a pharmacist, the transplant coordinator and then the Dr. that oversees it all.

The pharmacist, once aware that I was on round 2 had little to offer. The social worker tried to pick my brain about my relationship with my mother. I shut her down immediately when she asked me about how my illness has affected my life.
“You mean besides getting divorced, losing my house, my job and access to my family it’s been a piece of cake.”
She was not amused and within minutes she was also convinced that I had a “whatever happens happens” attitude and that I am dealing just fine. Good luck selling me therapy. Next!

I then met with my coordinator who arranges all of the testing I have to go through to make sure I’m healthy enough to undergo a transplant, as well as work with potential donors. She was young, cute and funny so I went easy on her. The transplant surgeon was informative and brief and when he left I had only to meet with my brilliant Doctor and I could then go home. I was exhausted and feeling lousy.

I waited for about 15 minutes for him and when he walked in, he took one look at me and said “you need dialysis. Yesterday.” He asked what the holdup has been with my Nephrologist and I told him that my fistula, a surgically installed dialysis port, has not matured yet. He told me that he was initiating “plan B.” He called my Nephrologist and made arrangements for me to have a temporary port.

Monday, they will insert a catheter through my neck and into my heart. I will start dialysis Tuesday at noon.

Here we go. Wheeeeeeee!