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.

Where it all began

As I begin the healing process after yet another visit to the Hospital I find myself motivated to blog more. I found the urge curious, then I realized that, for better or worse, the Hospital is where this blog began.

I was at Tufts Medical Boston in 2017 for severe edema. My transplant had failed suddenly in 2016 and I had been plagued with ailment after ailment for months. One of the symptoms was retaining fluid in my legs. After retaining so much fluid in my legs that I couldn’t get my pants or a shoe on. My blood pressure was out of control and I was on the verge of heart failure. I would find later that they removed 30 pounds of fluid from me in 5 days. You read that right, 30 pounds.

When I had my transplant in 2011 I left the hospital like the Tasmanian Devil. I was back to work in 31 days, which was unheard of. As soon as I was able I hiked, biked, screwed, climbed, walked and hit the gym regularly. I had my health for the first time since I began failing badly in my 30’s. The expectation I was given was at least 15-20 years of health before maybe needing another Kidney. When it failed after 5 I was livid. I was mad at the world, mad at my Dr. for not telling me that my particular disease was known to stay in the body and attack the new organ. I felt betrayed, let down and without hope. I was miserable.

My Dr. came in on my third day and asked me if I had any interest in talking to a team of interns. His concern was that the current batch of students were adept at medications and protocols but lacked good ol’ bedside manner. In short, he felt their people skills sucked. He felt that my story would be a good one to share. I wasn’t going anywhere so I said yes. As he was leaving he turned to me and said, “Don’t just spill it, let them pull it out of you.”

Several hours later 5 interns entered my room. They pulled chairs and gathered around me. They asked me several questions and, while following my Doc’s advice, I let them pull it out of me. Over the course of an hour they heard the tale of Bill. Bankruptcy, foreclosure, lost job, divorce pending, behind on rent and a insidious and debilitating disease. One of them actually wiped tears away from her face. I don’t need to be told how it went, they left changed by the experience.

I sat back in my bed that night and it occurred to me that maybe others may benefit from the shitshow that is my life. I knew that one platform was a blog. I had blogged before to mixed results. I wasn’t consistent in my theme or my frequency and I let it die. But this time I was inspired. I wanted to tell my story anonymously to the world just to get it out and relieve the weight on my shoulders. Ok, I asked myself, what is the name going to be? Immediately I recalled an argument I had once had with my wife in which she was haranguing me to be honest and open with our youngish children about the severity of my disease. She was mad that I sucked it up and faked how badly I felt in front of them. That was what I did, it kept them happy. I also hid it from my employer as long as I could for obvious reasons. As the argument peaked she yelled at me, “OK Superman I guess you’re fucking bulletproof!” and stormed out of the room. It hit me.

“Superman can’t find a Phone Booth” was born.

I knew that it was a dated reference. Many of my readers have never seen a phone booth or the old reruns of Clark Kent running to a phone booth and changing into his suit and saving the day. It was a perfect metaphor for how I felt. In the face of evil, in this case disease, I was running out of ways (phone booths) to find a suit of strength to combat my disease.

I swore that I would pull no punches. It would be what my early readers (some of you are still around and I love you for it) would describe as raw, visceral, inspiring and brutally honest. I told my story. One reader commented that it was the best blog she had ever read and posted about it.

There was a time recently that I thought that I was done telling my story, that it had run its course. But now I know that Superman is back. I managed to remove that Kryptonite necklace hanging around my neck. I found a phone booth and my suit is back from the dry cleaner.

Expect some more raw, some more visceral, some more brutal honesty as I continue to tell the tale of the shitshow that I call my life.

Refreshed

It’s good to be home.

5 days in the hospital and no diagnosis why my BP is out of control and I keep experiencing spontaneous nausea and vomiting. They made a small adjustment to one of my meds for the BP but overall every test on my gut came up Negative. Oh well, it’s not the first time I’ve defied medical science.

Believe it or not I got some rest. Yes, you read that correctly, I got rest in a Hospital.

I’ve been really, uncharacteristically lazy for so long. My illness has really beat me down. While I actually have very little to do, I have been having a hard time doing it. I was almost out of Spoons. (If you are not familiar with the Spoon theory here you go) https://wordpress.com/post/goodtobealivetoday.com/5461 . On top of all of it I’ve been beating the ever-lovin’ shit out of myself mentally for being so lazy. It was a constant, vicious circle and I was exhausted.

Hospitals are not known for letting you sleep. Nurses wake you at all hours of the night for blood and vitals and DR’s traipse in all day long. I’ve ended many visits more tired than when I went in. It’s been anything but quiet and restful. This one was different. Because I told no-one that I was hospitalized and visitors were prohibited due to COVID, this visit was very quiet. Consequently, I had a opportunity to do some extensive mental, emotional, character, are-you-the-person-you-think-youare inventory. Long story short I came home mentally refreshed.

The biggest takeaway is that I need to give myself a break once in a while. I am conflicted by my resolve to act and feel normal and the knowledge that I have increasing physical limitations that simply won’t allow it. I need to listen to my body when it tells me “nope, ain’t happening”. Beating myself up does nothing to help how I feel. I think if I can do that, forgive myself for moments of weakness, I can get back to the old Superman. For now, I need to take it slow.

Baby steps, Superman. Baby steps.

A year has passed…conclusion

October 4, 2018
I woke up to a team of Doctors standing at the foot of my bed. It was early. or at least it seemed like it was. I hadn’t slept much the night before. The head doctor began listening to my lungs, feeling my legs, being a general nuisance as the rest of the white smocks scribbled frantically on their notepads.
“You won’t remember me, sir but I’m the doctor that was on duty the night you came in.” He was looking me dead in the eye. “I’m having a hard time believing that I’m looking at you right now. You were that close.”
“That’s what I keep hearing.”I said. “I must have been in bad shape.”
“Bad shape doesn’t begin to cover it. You were on the edge of death. How do you feel now?”
“Grateful.”
“You’ve been given a second chance . Take advantage of it. You may be going home in a couple of days if you feel up to it. You need to walk for me before I sign your release.”

I rolled out of bed, with difficulty of course, struggled to my feet and began to slowly walk out the door. The team followed me out and watched as I walked to the nurses station and back. I was wobbly but I did it.
The doctor asked me when I had mastered that, to his knowledge I had failed the day before.
“Last night while everyone was sleeping.” It was then that I noticed Olivia had joined the group.
“Bill is a determined one” Olivia offered. I smiled at her. The team left my room.
“I want to go home.” I told her.
“A couple more days I think. Your fever is still erratic.”
“I can’t take being in bed anymore.”
Her concession was to sit me up in a chair where I spent almost the entire next two days. I continued to try to put the pieces together.

It was my ex wife that filled in the holes for me. She painted a vivid picture for me of what it was like to see me like that. She had visited me every day, I was impressed. At one point or another all of the kids had come to visit me. Unfortunately they all came when I was sedated. The sight of me with a breathing tube, unconscious was a bit much for my youngest daughter. My oldest son, who was on his way to visit his girl friend, was told to turn around. He asked why he couldn’t come in the morning. He was told “Because your father might not make the night.” Of course he rushed there.

October 6, 2018
I was released in the morning. Mom came to pick me up. When I got home I sat on the deck, enjoying some natural sunlight for the first time in 11 days, and opened my mail. The first letter I opened was from Medicare. My health Insurance had been cancelled. Effective that day. Turns out my SSDI had gotten approved and I was now fucking rich and wasn’t eligible for state assistance anymore. I tore it up and went inside.

I had just fallen asleep in my recliner only to be woken by my mother’s best friend Arlene.
“I didn’t think I would ever see you again, Billy. Welcome home you tough bastard.”
“Was I really that bad?!” I asked. It seemed I was asking that to a lot of people. Her face said it all.
Many more townsfolk would say that very thing to me in the ensuing days. They all thought I was going to die.

There are lot of takeaways from this whole incident. I was grateful and impressed with the Hospital. I was thankful for the support of family and friends. I awoke one morning in the dialysis room only to find one of my 3AM buddies Jeff next to me patiently waiting for me to wake up. He had been there for 45 minutes watching me sleep. Now that’s a friend. Later that night two more great friends and their wives visited me. They sat for hours with me, they walked the halls with me, supporting my weight when I wavered. Of course I’m haunted by the way they were looking at me. The words “Dead Man Walking” came to mind. They were scared and it was disconcerting. But overall I am moved and eternally grateful to them for the visit. It really meant the world to me.

Another takeaway is that I am proud to have been gifted with toughness and a survival instinct. In order to survive, one must have a reason. I must have had plenty of reasons to defy the odds, as I was told so many times that I did just that.

I’m a fighter. I’m stubborn and I never quit. This incident is just more evidence that it wasn’t my time. I’m not ready for a dirt nap. My life is compromised but it is not over. I have weddings to go to and Daughters to give away. I have grandchildren to meet and motorcycle rides with my boys. I believe that in my lifetime there may be a cure down the road for me. I want to be there if it does.

My last takeaway? Even if I wasn’t awake, my ability to fight death is there and it is stron. Even unconscious, I do not fear dying.

I fear not living. And that is a powerful thing.

I’m also grateful to be here to tell this story, and that is also a powerful thing.

A year has passed…cont’d

September 28, 2018.
I awoke in a trauma center room full of beeping machines, staring and inquisitive medical staff, lots of plastic curtains and my ex-wife, oldest daughter and my mother.

You can catch up here.

“Where are the 2 fat firefighters?” I asked.

“Oh, he’s fine” she said. She then began to laugh, if you could call it that. A nervous laugh of relief if anything. My wife had buried her face in her hands.

Very confused and in a bit of a haze, I asked why they reacted as they did. As it turns out, the Dr. had just cautioned them that when I awoke there was a distinct possibility that I could suffer some type of cognitive loss. My first words after being medically sedated for 2 days being a joke, they were convinced that I was ok.

But of course I wasn’t.

It took me a while to piece together the events of the previous 3 days. I had no recollection of them so I had to rely on accounts from my mother and my medical team. Both were being light on details and, even in my foggy state I knew that it wasn’t good. Initially, all I was able to learn was that I was rushed to a local hospital that was ill-equipped to treat me and sent me away after dousing me in ice to lower my fever. Which, by the way, was measured at 104.9, a fever that a man my age rarely survives. I was then taken 65 miles away to a hospital with a Trauma center and immediately heavily sedated as they worked to control the septic infection ravaging my body. I was sedated for 2 full days. At one point my mother was asked if I had a Medical Proxy and a Advanced Directive, AKA a DNR (Do not resuscitate.

My Dr. confirmed and explained Sepsis to me and the reasons for Sedating me for 2 days. Apparently I was extremely fitful as I was being treated and I kept tearing the breathing tube out (that was the first time I realized I had had a breathing tube). He was very focused on my treatment regimen going forward. My mother was light on details, she was very upset by the ordeal. It wasn’t until I spoke to the Night Nurse, a real good guy that worked every night that I was in ICU. I explained to him my need for info and my confusion about what had happened to me. He took off his glasses and sat down next to me.
“A guy doesn’t get any closer to the other side than you did. We’re all amazed at your recovery. We thought we lost you.”
“Really?” I asked incredulously.
“Yes, if I wasn’t a religious man before I would be now.” He paused. “It was that close.”
I could do nothing but stare at the white ceiling.
“And you’re not out of the woods yet.”

What followed was a full week of restricted bed rest. I was severely limited in how much I could move because I had a temporary dialysis port put in my hip that was in danger of rupturing causing me to bleed out. For 4 long days they ran every antibiotic known to mankind through me until my fever stopped spiking. By Sunday I was able to be moved to a regular room.

I wasn’t out of the woods yet. The infection wasn’t done yet. I had several relapses plagued by sweating spells and rampant chills in no particular order. I wasn’t able to eat much. I was still forced to stay prone in bed, it would be 2 days before I could even sit up. I was in a private room but there was nothing private about it, nurses and teams of doctors were in there constantly monitoring my every function. My only reprieves, as it were, were my dialysis sessions upstairs.

Eventually I did stabilize, much of it was a blur. I did have plenty of time to get to know the nurses as I recovered. In addition to their youth and attractiveness they were very friendly and good at their jobs. I struck a rapport with a few, one in particular couldn’t get enough of my jokes and my story. She came in every time she had a minute and asked me more questions about my Chronic illness journey. Her name was Olivia.

On day 9 Olivia came in with the physical therapy team. They were tasked with getting me to walk. I had been bed-ridden for 8 days and it was amazing how atrophied my muscles were. 3 nurses got me to the hallway with the goal of walking to the end and back. I was only able to support myself for 3 steps and I collapsed. I would try 2 more times that day and I fared only slightly better then. I was returned to bed. Olivia told me that they wouldn’t consider letting me leave, fever vanquished or not, until I could walk.

By the end of that night I was able to walk the hallway end to end twice before collapsing into bed again.

to be continued

A year has passed…

Sunday, September 23, 2018.
I awoke at about 9:30 PM. My chest hurt. I carefully felt the taped area around the plastic port in my chest. It was tender to the touch. I went to the bathroom mirror and pulled down my shirt to look at it. What appeared to be a pimple next to my port caught my eye. I squeezed and popped it. Immediately, I was overcome by the most powerful chills I had ever experienced. I began to shiver to the point of quivering. My teeth were clacking. It was miserable. I went downstairs to my recliner and threw the biggest blanket I could find over myself. The trembling was uncontrollable. Finally, I warmed up enough for the chills to stop. I braved the trip back upstairs and I curled up under the blankets, freezing again. After 10 or 15 minutes I managed to make it stop and remained in that position until morning.

Monday, September 24, 2018.
I spent most of the day under a blanket but I managed to get downstairs and eat something. I felt awful. Mom was concerned but knew that if I needed help I would tell her.

That evening I was worse. I was curled up on the spare bedroom bed in the fetal position under 3 blankets when Mom came in and asked if I felt well enough for her to go out for a few hours.
Take me to the hospital! raced through my brain. Stupidly I instead said,
“Go ahead, I’m fine.”
At some point I made my way upstairs. I was feeling worse. The tremors were nearly uncontrollable. I crawled into bed. I vaguely remember soiling myself but I didn’t get up. The thought of getting out from under the blankets, my only salvation, was unbearable.
Call 911, you’re going to die! my brain screamed at me.
I don’t want to move, I can’t. If I die I die, a voice answered back. It’s over.

Tuesday, September 25, 2018
“Bill, wake up! You’re going to be late for dialysis!” I heard my mothers voice faintly. It took me a moment to realize she was at the base of the stairs. I looked around, I was on the bathroom floor. I forced myself to my feet and then immediately collapsed. At the sound of my crashing to the floor she raced upstairs. Mom assisted me to the bed, all the while asking me if I was ok, if I was able to get up and get ready. I answered her by falling forward and landing again on the floor. The next thing I remember was being hoisted off of the floor of my bedroom by two heavy firefighters. They needed my help to get me onto the stretcher. I had nothing to offer. They picked me up, placed me onto the stretcher. My arms flopped lifelessly from both sides of the stretcher as they struggled to get me down the narrow stairs from my loft.

I was brought to a waiting ambulance. I vaguely remember the chirp of the band radio in the ambulance, being asked a bunch of questions, having my soiled clothes cut off of me, the bumps of the ambulance banging around the bumpy side roads, some commotion as I was treated and begging for a blanket. I was cold. So very, very cold…

To be continued…

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!