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

I’m fine, move on

Fine. Not the best word to hear, especially from a woman. In fact, I ran for the nearest bomb shelter whenever my ex (that word has a nice ring to it!) said “I’m fine.” See, Fine is actually an acronym for Fucked-up, Insecure, Neurotic and Emotional. But when I say it, I mean it. If only people would believe me. In particular, the damn social workers that keep asking me how I’m doing.

Today I met with the Maine Transplant Center. It is a second outlet for me to be listed in hopes of a donor. Despite having done every goddamn test imaginable with the exception of an Algebra question at the NH center, it is required that I go through the same orientation with Maine. Not the tests, but the financial, pharmaceutical, insurance, coordinator interview and of course social work.

This is the third time I’ve had to do this. I did it in 2011 before my first transplant. Nothing has changed since the first evaluation. I gave the Social Worker there nothing even then. If anything I’m more closed off now. Life has continued to deal me one setback after another, the biggest of course was losing my new kidney after only 5 years and putting me back at ground zero: broke, alone and in my mother’s fucking basement and I don’t want to discuss my damn feelings about it.

So when I met the Social Worker today, his questions were met with a resounding “I’m fine.”

It’s not his fault. He gave it a heluva effort. He did a good job and I liked him. He asked the right questions and I was happy to tell him all about my situation. I just didn’t display a satisfactory amount of emotion apparently. He pressed me on it and I gave him nothing. Finally he asked me to describe my coping mechanisms to him. I said “first I punch myself in the head and then I kick myself in the ass. Then I move on.” He laughed and asked me to try again. I put my arms on the table, leaned in and said,

“Sunday I got rejected and rolled over by a woman that I swore I was in love with. I was floored, flattened. I cried. I brooded all day, talked to no one, wrote a blog post about it and woke up Monday a new man. I processed it, sucked it up and shit it out. Done.”

I would best describe his expression as a hybrid of amused and annoyed. But he left it at that.

People don’t understand, I am an island. I am happy to have a support system, I just don’t use it. I am hyper self-aware. I know what’s wrong and right with me. No one can tell me anything about myself I don’t already know. This is what life has done to me and I’m actually fine with it. I will tell anyone my story if they want to hear it and I will be honest and open. But I don’t do it for validation and I don’t need help. I got this, I know how to handle it and if I don’t I will figure it out.

Why do people not understand me and my self-coping?

I’m not nearly as brilliant as Robin Williams but like him, I am a Sad Clown. I wear a smile to conceal iron teeth. I’m not ok but I’m not bad either. I’m not happy but I can be and until then I can fake it with the best of them. I’m unsure and anxious about my future but good luck getting me to say it aloud.

What can I say? I’m fine and it works for me. If you don’t get it then that is a “you” problem.

the waiting room

If the sun is out I take the motorcycle to Dialysis. If I have to be there then I’m going to arrive and depart with a smile on my face.

Most days I spring out of my chair, exit to the waiting area, grab my helmet and go. Sometimes there are people in the waiting room, waiting to pick up a patient. I know most of them and who they are waiting for. For the last 2 weeks there has been a new face, a woman, 70ish with a kind face, that I deduced was waiting for the new patient Bob. Bob is a 70ish ‘Nam vet who just started treatments. I’d never spoken to him but he looks like a nice guy, with a new unpleasant development in his life.

Today, as I exited the clinic and grabbed my helmet she spoke to me.
“Can I tell you that you’re amazing?”
“Amazing? Hardly. But thank for you for saying that. And while we’re on the subject, why exactly am I amazing?” I replied.
“You bounce out of here, helmet in hand and ride a motorcycle out of here. After Dialysis. I don’t know how you do it.”
“I have to”, I replied. “It’s the only way I can make it tolerable.” I sat down across from her.
“I see Bob wears a lot of Harley stuff, is he still able to ride?”
“No.” I had touched a nerve. “He can’t support the weight of the bike anymore because of…”she motioned towards the clinic door, “this”.
“I get it.” I replied. “This is tough”.
“Not on you. If it is you don’t act it.”
I explained to her that it is quite to the contrary. That I have a tough time with it sometimes but I put on a strong face and do my best to make the most of when I feel good. She politely nodded as I talked, looking down at the floor.
I asked her how Bob was handling it. She told me he is feeling pretty lousy but getting used to it. I found that to be a good time to tell her that I was the clinic’s Patient Advocate and offered to talk anytime she or Bob may want.

At that moment Bob came through the door. His wife immediately said “This is Bill. He’s the one with the Bike. “
“Hey, Bill. Nice to meet you.” Bob wearily sat down in the chair. “Nice bike.”
“Thanks”, I replied.
“Bob”, his wife spoke up. “Bill is the Patient Advocate for the clinic.”
He looked at me and said “What do you do?”
“I’m here if you need advice, recommendations about the dialysis process or just here to talk if you need it.”
“Talk about what?”
“About Dialysis. About the emotions you will feel and the aches and pains you will experience. We all go through it.”
His facial expression showed total resistance. Then, before my eyes it changed. “Maybe I’ll take you up on it sometime.”

We walked out. He checked out my bike. I was careful not to ask him about riding. He then surprised me. “I’m thinking of getting a trike. I don’t have to worry about supporting the weight.. I can still ride that way.”
“That sounds awesome, Bob. The more you keep doing what you love, the less sick you feel.” I winked at his wife. She smiled.

I watched as they got into their car. She drove. As they pulled out she mouthed the words “Thank you” to me.

I’m not sure I did anything remarkable, I just shared the best kept non-secret I have. Illness only wins when you allow it to. Keep living your life.

Bad things to great people

I woke this morning to an absolutely beautiful, cloudless day. Spring and Summer have largely evaded the Northeast so far this year so I deduced that I really had no choice but to take the iron steed to my Nephrology appointment. I saddled up for the 50 mile ride south.

As my window had suggested, it was nothing short of a glorious hour ride and I’m pretty sure I smiled the whole way. I made excellent time so I rode around a bit before I pulled into the Medical building the suggested ten minutes early. I parked Bella, wiped the dust and pollen off of her and went inside.

After I checked in I went to sit in the waiting room. Seeing the helmet, several people struck up conversation with me about riding, the weather, etc. I’m still amazed at what a conversation starter a helmet is. After several minutes of small talk, I was called in.

My doctor, who handles most of my needs including monitoring my progress on dialysis, glanced at the helmet, surveyed my jeans, boots, tanned arms and face and said “Well, I guess I don’t have to ask how you’re feeling, do I?”

“I could lie to you, Doc but I feel great.”

After a thorough 30 minute evaluation he concluded that indeed, I was feeling great. He ordered some routine tests and sent his Nurse in to do some follow-up exams. Her name was Madison.

Madison was very good at talking to patients and we immediately began talking as she breezed through her routine. It didn’t take long for her to start talking about her fiancĂ©, and how he was critically injured at work. He is a tow driver and he was hit by a car. I suggested that maybe it was the opening for him to maybe get a better, safer job someday. That’s what I do, put a posi spin on things. She agreed. Then she said something that really resonated with me,
“It seems bad things happen to the best people. As a nurse I see it every day.”
“Can I expound on that?” I asked.
“Sure.”
“It’s been my experience that the illnesses and accidents create the best people.”‘
She was visibly intriguedby what I said. I kept it as brief as I could as I told her what Chronic Illness and my experiences in the blogosphere with the many Chronically ill bloggers that I loyally follow and interact with have shown me. That illness and injury bring out the best of us. I have stopped short of calling it a blessing, but it is undeniable that when faced with unpleasantness and uncertainty many people develop a true appreciation and zest for life that “healthy” people may never achieve. We love more, fight less, forgive more easily, breathe more deeply and waste fewer moments because we don’t have the luxury of guaranteed longevity.

Madison is young, I would guess no older than 23. She was enthralled by my thoughts but I suspect she is taking my word for it to a large degree. She is too young to have seen a lot of the ugly in the world. But I know that I gave her something to think about. She is a good nurse and I’m sure she is decent and kind to all of her patients. But I hope that she will learn to treat her more hardscrabble patients not with pity or sympathy, but instead as the warriors that they are.

Every day is a beautiful day if you take the time to find the beauty. It beats waiting for a better day that you may not be around to see.

Living

I have gone on record as being divided on how I feel about Social Media, Facebook in particular. I hate the politics and the pursuant hatred and vitriol from idiots with “keyboard balls”. I hate the vague statuses in which some attention hound posts “ooh I’m so mad!” so all of her friends will reply “What’s the matter honey?”. Then there’s the 50 year old housewives doing duckface selfies. Enough already.

The one thing I have always liked about FB is catching/keeping up with old friends. I have deeply enjoyed this aspect of it. Having graduated HS almost 36 years ago I love that I can see what people who I don’t actually see often (or at all) are up to. One such person is Tim. The last time I saw Tim was after we had a fistfight after school in 9th grade. I don’t know to this day why we fought, but it was over quick and he moved soon after. That was 38 years ago. He and I connected on FB about 8 years ago and have been very friendly but never gotten together.

That changed this week. I posted a pic of my new (to me) motorcycle

and several minutes later a IM popped up. Want to ride?
Hell yea, I replied. We worked out the details for Monday, the weather was looking fine.

We met at a restaurant we both knew. He had come from 50 miles south of me and the plan was to ride into the White Mountains of NH where, I think it is safe to say that God himself designed these roads for Motorcycles and merely allows cars to use them as needed.

He pulled in right on time. I knew what his bike looked like and a fair idea what he did as well. He got off his bike, took off his helmet, lit up his trademark cigarette and just said, “Billy Mac. You haven’t changed a bit.”
“Well, gee Tim. I would think I’ve changed a little since 9th grade.”
We talked for a bit, mostly small talk and we then saddled up. I told him I was a bit of a Rook so I would follow him.
Off we went.
There are certain rules to follow when riding in a group, even if the group is two. I learned them from my dad. Don’t ride side by side, ride staggered. If the leader is occupying the left side of the lane, stay in the right so that another driver doesn’t try to occupy the lane. Don’t get too close. I was nervous at first but I did fine. At the first stop, Tim likes to stop frequently and have a smoke and talk, he asked how long I had been riding.
“Less than a month.”
“Wow”, he said. “You’re doing great.”

At the next stop I asked where we were going. He told me we were going up Cathedral Ledge. I asked more questions and he said to just follow him. Before long we were taking a left into Cathedral Ledge State Park. We then began an upward climb on the windiest road I ever saw. Cars were crawling up and we had to pass a couple because if we didn’t we would have rolled back down the hill. It was that steep. We reached the top and there were hundreds of bikes and cars. We dismounted and I followed Tim to a clearing. Where I saw this…

The view was breathtaking. We talked for a while, got into a little more detail about our lives, elaborated on things we knew about each other from Facebook posts. Finally, he said. “Dialysis, huh?”
“Yup. If you look over there (I pointed to a clearing not visible in this pic), that’s my clinic right there.”
“They’re there. And you’re here, huh?”
“Absolutely. When I’m not there I’m living.”
Tim’s a quiet guy, a man of few words. “You sure as hell don’t look like a dialysis patient to me. Not that I actually know what one looks like, but it ain’t this.”
“Thanks, man. That’s the point.”

We left, descended the hair-raising winding road and set out on the last leg of our journey. We ended up on a very winding stretch of 29 miles that begins with a sign “no gas or services next 29 miles.” The first 3.5 miles were straight up. Then the curves began. I followed Tim’s lead and we began a stretch of snake curves where you need to lean your whole body into the curve or you wouldn’t make it. It was do or die time for me. I summoned my courage and went at it.

Part of me wanted to slow down but I didn’t. I rolled with every turn, mimicking every move Tim made. The wind blew us about, the noise in my helmet was deafening, the adrenaline was pumping. I was exhilarated in the place of fright. At one point I screamed over the din of the engine to no one in particular
LIVING!”

No mortal man heard me, it was for the ears of God alone.

At the next break we talked about the rush of that section of road. I was in heaven. I felt accomplished, I felt like I had performed above my pay grade. I felt alive.

Tim and I later parted ways with a commitment to do it again. We will. I can’t wait. It’s days like yesterday that remind me why you have to deal with the bad stuff to get to the good stuff. The bike, good friends, good conversation, the outdoors on a beautiful Spring day, adrenaline. That’s the good stuff.

I may be stuck in a dialysis chair 3 days a week. But on the other 4, you’ll find me out doing something that someone told me I can’t or shouldn’t do.

I call it LIVING.

What an ass

How was your yesterday? I bet it was more fun than mine. I did a dialysis treatment and a Colon Blow on the same day.

I have spent most of the week dreading my Colonoscopy. It is a necessary evil because A)I’ve never had one and I’m about 3 years past the normal age to get one. B) It is the last test to complete to be approved for another Transplant.

Knowing that I needed it and that it is a necessary step wasn’t the issue, I was just dreading the prep.

Yesterday I woke knowing that this was the day that I had to start preparing. I had my jug of ready-mix diarrhea powder on the counter, just add water, and I had my instructions laid out on the table. I was going to be behind the 8 ball because I was supposed to begin chugging water first thing in the morning but that was a problem because I had dialysis until 4, and the last thing you can do is go to dialysis full of water. You’re heavy and you have to pee, both no-no’s.

My plan was to have water with me for the ride home. So as soon as I left the clinic I managed to slam down 2 water bottles on the way home. Then when I got home I mixed the “Ready-Blech” and chugged a 8 oz glass every ten minutes until I had consumed 3/4 of a gallon. Then the fun began.

All in all it wasn’t so bad, I was relatively dry because I have semi-fasted all week. I was disappointed that I didn’t see the GI Joe that I swallowed when I was 12 but all in all I got through it. I actually slept through the night. Which was a good thing because I had to get up at 5 to drink another quart of Ready-Blech.

I needed a ride home after so Mom joined me. It was an hour drive to the hospital and it was miserable. In hindsight (hind? no pun intended) I should have brought a cork to sit on. The morning dose was wreaking havoc on me and I nearly ran into the hospital in search of a bathroom when we got there.

Once that episode was over, I was immediately ushered into the staging area to undress, put on a very flattering assless “Johnny” and get my vitals and instructions. The nurses, male and female were very friendly and informative and managed to make a couple of Colonoscopy jokes. I cried foul.
“Here I am behaving, and believe me I got jokes, and you’re doing it.? I’m being good because you have probably heard them all.”
It’s true, you know. Everyone thinks they’re the first one to make the Dad jokes, like when meeting a Funeral Director and saying “how’s business…dead?”
Ba doom doom crash.
Their answer was that, occasionally they hear a new one. I laughed inside, I had yet to spring mine on them.

As I was in the process of succumbing to the anasthesia, they rolled me over onto my side. It was then that they noticed the “post it” note I had stuck to my ass that read…

Exit Only

When I came to in the recovery room I was greeted by a slew of nurses and technicians congratulating me on “the one they’ve never heard before.”

All joking aside, they removed a couple of polyps and I’m fine. Still an asshole, but fine.