Tag: disease

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…

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.

Kicking the can down the road

Six and a half years ago I came out of anesthesia to find myself in a room draped in plastic, many beeping machines, looking up at a Doctor wearing enough protection to make me think that I had been exposed to Miley Cyrus. Through a mask, he asked me when the last time I had worked.

I clumsily and foggily replied, “what day is it?”

“It is Tuesday evening” he informed me.

“Monday.” It was coming back to me. I had worked until noon on Monday, my donor and I received a huge sendoff (we worked together) and we were at Tufts Medical Center at 6:30 AM the next morning. Deb and I had sat with our families, who made nervous small talk until we were called in for prep. Soon we would be counting down from 10 and hoping to open my eyes again in about 6-8 hours.

“Admirable”, he said with an obnoxious sarcasm, “Have you ever been on dialysis?”

“No, thank God.”

“Sir, we have guidelines for dialysis. A number, if you will, that determines how due, or overdue in cases such as yours, a patient is for dialysis. A typical number would be approximately 10. For conversation’s sake would you care to learn what your number was?

“Sure, indulge me.” His snarky attitude was pissing me off.

“110.” He paused for effect. “I’m glad to see you doing so well sir but your behavior was nothing short of reckless. Please be more careful in the future.” He then patted me on the shoulder with his gloved hand and left the room.

Other people may have been concerned, maybe even felt bad. But what I heard was a chorus of soccer hooligans yelling “YEAH, you pulled it off you wanka! Good job mate!” I had avoided dialysis. Reckless or not, I didn’t give a shit. I did it. His dire warning wasn’t even the first for me. Approximately one month before my surgery I received an email from my doctor. Most doctor’s don’t send personal emails.

Your lab work suggests you may be in danger of a heart attack. Please, Bill if you feel chest pain, shortness of breath or light-headed admit yourself immediately.

I read it and dismissed it. I assured myself that I will make it. Repeat after me, I told myself, Death before dialysis. I was kicking the can down the road and I didn’t care.

I have had Kidney disease since I was a teenager. I have met every single challenge with enough denial and/or bravery to move on to the next obstacle. I always knew that a transplant may be in my future and I even prepared myself for the possibility of death. One thing I refused to entertain was dialysis. The snarky doctor, despite his attempts to minimize my accomplishment, had actually validated it. I had vanquished my enemy.

Until now.

After yesterday’s appointment, my Doctor’s best estimate is that I am 3-6 months from dialysis. My transplant has finally reached the unpleasant milestone of failed. The moment that I have fought, nay, railed against since my diagnosis is upon me. I can’t wrap my head around it.

I am an exceedingly logical person. I believe that when you do the work you reap the benefits. I believe that if an expert says A + B = C then I will do my best to add them properly. In this case, A and B were to strictly follow my Doctor’s orders regarding nutrition, sodium intake, alcohol and caffeine and exercise. C would be the result, C would be extending the life of my transplanted kidney another 3 years (we had this conversation 6 months ago. I did it, all of it, and it accomplished fucking nothing and now I have to finally accept that my life is only going to be as long as the extension cord in my dialysis center.

joke break…

A man and his wife are discussing end of life matters. The husband loudly declares
“when it’s my time, I refuse to be glued to some machine living off of a bottle!”
The wife unplugged the TV, threw his beer in the trash and left the room.

I used to love that joke. It’s dark and twisted and completely inappropriate just like me. It also played into, or to be more clear downplayed, my crippling fear of dialysis

I don’t fear a lot. I always look to the bright side. I haven’t dwelt on the number of years and instead have focused on quality of life. Dialysis represents to me the end of quality of life. It is forcing me to (finally) accept my limitations and to admit that I am finally sick and, to touch on a familiar theme, I’m going to look it.
It represents a complete lack of freedom and independence. I may not have plans to spontaneously pack my shit and just go somewhere but in 3 to 6 months the fantasy is just that. I will need to plan everything based on that extension cord.
I can look forward to infections, setbacks and more hospital stays because dialysis patients always get sick from treatments.
I view it as death’s waiting room. Sit, listen to the machine whirring, wonder where you are on the transplant list (if I’m even eligible), read a book about how it’s not so bad and wait for the next shoe to drop.

I’m not ready for that shoe to drop. Despite how wrong I may be wrong about a lot of what I just said, I can’t change my mind about it. I hate it and I’m scared.

I know that I’ll pull through this as I have everything else. But I’m not there yet. Right now, I’m mad and scared. I know myself enough to know that I have to get this out of my system, regardless of whether my blog has read like a Sylvia Plath poem lately. If I don’t get my anger out of my system I will be unable to move on to fucking dealing with it and moving on with my life. See, I know that overly dwelling on the future only cheats me out of the present but at the moment I don’t see the future in a bright light. I need to finish this blog, go outside and scream with clenched fists some FUCK YOU’s to the universe for kicking me in the ball again and then, and only then, move on to what I’m going to do next.

If you have made it this far, this is not a post fishing for sympathy. I don’t need anyone to offer uplifting sentiment. I just need to get this off of me because I want to move on, get back to a position of strength, loosen up and find Superman again. Before the Kryptonite of Dialysis defeats me.

Thanks for listening…