My special purpose

On Thursday I entered the dialysis clinic with my bag containing a blanket, books, my laptop, headphones and half of the trepidation I had felt on my first visit. I was greeted by an entirely different Nursing Staff, which gave me the opportunity to drop my “oil change” joke 💀. It was fairly well received. I’m going to ask for a tire rotation next time to test the waters.

I already know the routine. I weighed in and sat down while 2 nurses, 2 potentially new sounding boards for my repertoire of Dad jokes, went through an impressive routine of programming the machine and unwrapping needles and fastening clamps and god knows what else. It really is something to watch, it must have taken a hell of a lot of training. When they were done and I was hooked up, they went on to other patients and I settled in for 3 boring hours.

I wasn’t in the mood for TV and not ready to read so I looked around the room. There are 12 stations in the room and every chair was full. I recognized most of the patients in the room from my first visit. The staff was all new to me. In particular I noticed a thin, older woman with a buzz cut making the rounds of the patients. I figured her to be the Nurse Manager. She was making her way towards me. After spending a few minutes with the gentleman next to me she came over and introduced herself as Kim, the clinic’s Social Worker. She knew who I was, had researched my case and apparently was looking forward to meeting me. Part of me wishes I could say the same. I respect social workers and what they do, but their goal is to get me talking about myself and my condition and how it has affected me and everything else that I don’t want to talk about. I deal well by not talking about “it”. Social workers chew away at my armor.

Kim sat down next to me and asked me a few questions about my overall reaction to the dialysis process, was I feeling better? Did I have any issues or complaints? Standard stuff. I immediately found her east to talk to. I had been anticipating an interview and instead found myself in a conversation. I certainly had time so I decided to drop my guard a bit and see where it goes.

The questions flowed easily from her and although it was standard fare; how long have I been sick; my marital status and my living situation. I answered all of them honestly and in some detail. She was taken back by my story, especially at the saga of my marriage collapsing. She kept asking, in different ways, if there was a chance at reconciliation and I continued to say no. She was surprised at my acceptance of the situation but dropped the subject. She then asked me if I was working, would I be able to or plan to in the future. I explained my situation with SSDI and that seemed to satisfy her. She then asked me what I used to do for work.

I found myself telling her all about my most recent position at the finance company and of all of the things I loved about it. I don’t know how long I spoke of it but when I was done and looked at her she looked captivated.
“If you could see the look in your eyes as you talk about that job” she said.
I had actually teared up as I had told her my tale.
“It meant a lot to me, Kim. You will never hear me utter a word of hubris, but when it came to that job I was damn good at it. I miss it.”
“I can tell.”

The conversation eventually wound down and she moved on to another patient. The emotional reaction to talking of my career lingered on. I explored it deeper and had an epiphany of sorts. Of all of the things I hate about my current situation is that I am no longer needed by people in my life. My family no longer seeks or expects support from me. I no longer go to work each day and try, in some small way. to make a difference in someone’s life. See, I had no throttle control before this happened. I was “all in” on life with family and career. I was active as possible as a parent and a husband, Teaching, mentoring and loving my kids while giving what remained of my ass to my job was what I lived for. I was a doer, a guy that made shit happen. A guy people came to. I was a great father, husband, friend and co-worker. I rode bikes and walked miles in the name of charity. I donated money I didn’t have and didn’t care.

Now I have none of it. Maybe the pace proved too much for my body.

I have beaten to death my family life on this blog and it is well documented that I love my family with all of my earthly strength. But I haven’t discussed work often and it was a big part of who I was. Men have often been accused of strongly tying their self-worth to their profession. I was guilty of this. I vowed never to be the guy who called in sick and no one noticed. My job, to quote Steve Martin in ” The Jerk”, I had found my special purpose.

The days when people came to me for advice; when calls were transferred to me because no one else knew enough or how to talk to an irate customer; having the owner boast that you are the “best in the business”; being given a seemingly impossible situation and finding a way to fix it. I have such fond memories of talking to people where the conversation started as a confrontation and ended with a “thank you.” It wasn’t that I was particularly skilled at everything, I just knew how to talk to people and I really, genuinely cared about them. I was proud to go home many days of the week with the knowledge that I actually may have helped someone through a tough day. I don’t have that anymore.

I have tried to be as useful as possible since the collapse. I volunteer at the food bank, I help some of the older people in town with basic chores. I don’t charge them, they don’t have the money. I am kind to my fellow man and I put out zero negative energy into the universe. I hope to become healthy enough to volunteer at a camp for the families of terminally ill children next summer. I am being the best person I can be.

But I don’t feel needed. I can’t believe how much I miss that feeling.

My week thus far…

Friday I received a call from my new Nephrologist. He had spoken to my Transplant team and it was decided that dialysis was needed immediately, despite the fact that the fistula I had recently had installed was not mature yet. He had made arrangements for me to report to a local hospital on Monday morning at 10 to have a temporary “port” installed. It was also scheduled that I would have my first dialysis treatment the next day. They clearly weren’t playing around.

I spent the weekend in a bit of a funk. Despite knowing that dialysis was inevitable, I still dreaded it. Despite all accounts that it would make me feel better, I had this horrible picture in my head of what it would be like. I was also dreading the surgery.

I reported at 9:45 to registration and was immediately led by the charming and matronly Alicia to the surgical prep area. I dutifully removed my clothes and signed all of the paperwork that I commonly refer to as the “I will not sue your ass if you fuck me up on the table” forms. Alicia was great, very comforting as she explained the process to me. It sounded rather unpleasant but hell, I would be knocked out, right?
“So, who is driving you home?” Alicia asked me.
“Ummmm….I am.”
“Oh dear.” Alicia replied.
“Oh dear, what?” I asked incredulously.
“If you drive yourself home after anesthesia you will be driving under the influence of a narcotic. Your surgery will have to be done with a local only.”
“When I talked to Doc on Friday he gave me the choice of driving myself or getting a ride. Not to be a bother I didn’t ask my mother. The info you just gave me would have been helpful.”
“Sorry, hun.”

I was wheeled into the Surgical room. I was injected with a local and a numbing agent. A tent was put over my face and I was told to lean my head as far to the left as possible. I was then told to relax. Yeah, right. My surgeon then, with the assistance of a radiologist, snaked a tube through my neck, into a major vein stemming from my heart and then pulled it back out my chest. A tube was then attached to my chest. It’s there until my fistula is ready. I felt everything. I can only describe it as having a giant fish hook inserted into my neck and pulled through my chest. My head was screaming, my neck was killing me and the entry point at my neck was excruciating.

Then I was told that it was all over.

“Good job.” I said to the surgeon.
“I should say the same to you.” She replied. “I’ve never done this surgery without full anasthesia. You did great. I’d want to be knocked out until Christmas to do what you just did.”
“Thanks. But remember that there is a fine difference between brave and stupid.”

I was sent home with no painkillers but Tylenol. I was up all night in excruciating pain.

The next morning I arrived at Dialysis. When I pulled into the parking lot part of me wanted to put it in reverse and explore other options. Then I went in anyways.

A sign at the door said ring bell for assistance. As soon as I did a tiny nurse wrapped in scrubs and a mask opened the door and greeted me by name. She was expecting me. To break the ice I said “Hi, I’m here for my oil and filter change.” My tiny nurse laughed.

I went inside. My first reaction was that everyone looked so sick. Yes, I know that I am sick but I really don’t look it. That’s no accident. The patients in this room were fragile, thin, asleep. Not one person was anywhere close to my age. The gentleman next to me looked just like my father…a month before he died.

All in all, it wasn’t too bad. I have painted a terrible picture of dialysis when in fact I did feel a little better when I left. In a 2 1/2 hour session I lost 3 lbs of fluid. That’s a good thing. I’m easily carrying 20 lbs of fluid that is doing nothing but putting a strain on my heart. The only thing I don’t like is I’ve never sat in a chair for 4 hours before. By Saturday I will be up to 4 hour sessions. But I’ll manage. I had a TV, headphones. a blanket and a fucking great book written by a fellow blogger that I am almost done with.

I can do this.

Now if I can only get used to this turkey baster sticking out of my shirt and the constant bleeding at the surgical site I will be just fine.

Everyone has been treating me like I’m going somewhere. Allow me to take this opportunity to tell you that I’m not. I still have a lot of shit to do.

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!