Tag: dialysis

Reflections

It is starting to settle in how different my life is now. In just 13 days my life has gone from “can’t” to “let’s do it”. Restrictions on diet, travel (the extension cord is only so long), and countless other things that I had long dismissed as just not possible are now doable.

The big one is no more dialysis. It has finally settled into my mindset that I am done for dialysis. At least for a while. The goal is 15 years and I’m going to fight like a cornered Wombat to reach that goal. I hated dialysis and that is enough reason to prolong going back to it as long as possible.

When I first started dialysis I was the model patient. I walked in with my characteristic “proud peacock” walk, sat down with a book for 4 hours and then strutted out again (sounds cocky but that’s how people see it so I guess I have to go with it). The treatments didn’t kick my ass as it did some other patients. The older and seasoned (to be fair I was one of the younger patients) patients looked at me with jealousy. On a side note the walk or strut that I have become known for is not new. When I was a Cancer patient back in ’97 I overheard another patient remark “what’s he doing here? He looks like a fine specimen”. And I was, I was going to the gym right after radiation treatments and I was in good shape. But I was 31, at 56 I still have that walk. Anyhoo, I made it a goal that I would never get to the point of deterioration that most patients do. There are a few who always looked good, I’m not saying I’m the only one. But eventually I did anyway and I hated myself for succumbing to it.


First came the sepsis/near death infection episode 2 months in. I almost died, no exaggeration. But I bounced back from that. I cruised for about a year until I hid a bad stretch of infections and diet-related complications. On a Renal diet even healthy foods could be taboo. A tomato, a healthy food contains Potassium. Without a functioning kidney to process it it may as well be rat poison. I see-sawed back and forth between too much and too little Potassium, Phosphorous and Magnesium, just to name a few. Sodium and fluid restrictions, if ignored would mess me up for weeks. I never really got those things under control despite uncharacteristic attention to my diet. It got to the point that I was hospitalized several times and the actual treatments became so uncomfortable that I was sometimes unable to complete the treatment. Imagine having a reaction to Phosphorous in which I was itchy all over, the itch would pop up like a whack-a-mole and it was so bad that I was thrashing in my chair. Imagine being held down and being tickled with 2 1 inch needles in your arm. It was miserable. Towards the end I was everything I detested in that room, I was just like the others. I must be an arrogant fuck to think that it wouldn’t. In short it sucks.
I heard yesterday that one of my friends there chose to stop treatments. He was dead in a week. It happens more than you want to know.

One positive is that I really love my dialysis nurses. I think they do God’s work and I appreciate them. They did more than stick needles in my arm, they   my welfare and genuinely cared about me; first in making a very difficult transition for me easier and then keeping me on course when confronted with challenges. Of course, I can only speak for myself, but nurses have a special place in my heart. I plan on visiting them when I am able and thank them for everything they did to make it to where I am today.

One nurse I am particularly fond of is Jesse. Jesse is one of the youngest nurses at the clinic and I have felt a special chemistry with her since the day I met her. We share a devilish sense of humor which is tampered by the strict codes of conduct in the clinic regarding patient interaction. Still, we manage to have flirty and somewhat sexy conversations in sneaky ways, even the exchange of glances or funny faces. I loved it when she was there, it made the time pass a little better. It’s safe to say that if there wasn’t a clinic policy against dating patients I would have asked her out.

Now I can. And of course, now that I can I’m seeing someone else. No regrets, Lisa is awesome and I’m nuts about her. And there are considerations with Jesse that make me reticent even if I was available. She is much younger than me, almost 15 years younger and she has small children. I’m not sure that I have the patience for young children and I also wouldn’t want them to get close to me and then not be there one day because their mother and I didn’t work out. Jesse and I talked about it. We had discussed covertly a few times about the possibility of dating and it was always “get a transplant and we’ll talk”. So we did. I put it all on the table and as it turns out she doesn’t want a relationship at the moment. She works a lot and spends every available free moment with her girls. As it should be. She’s a great mother and her girls are very sweet. She’s doing a great job as a mom. I don’t know what the future holds but I look forward to hanging out with her as a friend over coffee or lunch. As with everything in life, you never know what’s in store for us but it helps to be ready when opportunities arise.

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…

B Positive

I have to remind myself that it is just Network Television. It is not reality TV. It has to capture the viewers attention in a funny way, if you take into consideration that the modern viewer has the attention span of a Gnat. If the subject matter is too serious you also lose them. I personally see the show as a better Drama. But hey, what do I know? It’s just my opinion, but the new sitcom B Positive misses the mark in a big way. Again, just my opinion.

The show is about a therapist who finds out he needs a Kidney Transplant. He is a single Dad working through a recent separation from his wife. As luck would have it, he bumps into an old High School acquaintance at a wedding and somehow the subject of Kidney failure/transplant comes up and the ditzy girl throws it out there, “Hey, I can donate to you!”
By the end of the 2nd episode they have confirmed that she is willing, while showing more of what a mess her lifestyle really is but lo and behold, she is cleared to be a donor. The timetable escalates, as our hero “suddenly” starts dialysis.

I’ve tried to give it a chance. I really have. Multiple friends have asked me my thoughts on the show and I have tried to reserve judgment. I have to be nice knowing that most people really have no idea about the process, timetables and let’s face it, setbacks in the whole process.

To begin with, no-one “suddenly” finds that they need a transplant. Kidney disease is gradual and predictable. Any doctor can tell you after mapping the decrease in function that at a certain point you WILL need a transplant. It is not something that can sneak up on you. Renal failure is painful and it will affect every aspect of your life. The word I choose for it is Insidious. Over a long period of time you will experience an increasing level of complete garbage. You will feel washed out, which I liken to the day you start feeling flu symptoms and you know you are getting sick. But this feeling lasts for years. You can try to explain your symptoms to your friends, family, coworkers and your boss. They won’t understand. Nobody does. When your kids ask you to come play and all you can do is sit on the sofa with swollen legs and no energy it rips your heart out. This, and a million other normal functions in life that are compromised is where the Spectre of depression enters the picture. Approximately 87% of Renal patients suffer mild to serious depression. There is no medication other than hope for relief in the form of a transplant or a miracle. When you have End Stage Renal Disease (ESRD) a transplant and a miracle are one and the same.

The Dialysis segment of the show really, despite my efforts to be fair, annoyed me. In the second episode our hero, as I said earlier, “suddenly” starts dialysis. I’m sorry, you don’t just start dialysis. It is a last resort, akin to the fat lady singing for many people, myself included. By the time I was ready to start it I was as sick as I have ever been and I hated the whole idea of it. I always did, even before my first transplant when I pushed my luck enormously and avoided it. My Dr. scolded me as reckless and dangerous. How could I tell him that the lifestyle of dialysis appealed to me as much as eating a bullet?

So, our hero is sitting in a clinic with the recliners and machines, which they got right. The spacing of the chairs was a bit close but it is, after all, Television. But the room itself could not possibly get it more wrong. The seats are all full. The patients are all sitting up and awake. They look healthy other than having needles stuck in their arms. Ugh, so many misconceptions here. I will take them step by step:

There are always empty chairs in a clinic and you notice them immediately. I’ll be blunt, fellow patients at some point are forced to wonder if the missing patient is sick or dead. You don’t and won’t know, they can’t tell you. All you can do is hope for the best for them.
The chairs are almost always reclined. If you can’t get a nap during your session you are stuck with bad network TV or a book, which you can barely support with your left arm because of the 1 inch (yes, you read that correctly) needles in your arm that may, if you move, puncture your vein and you are done for the day if not the week. The vein is known as a fistula, a surgical vascular process that combines several veins in the arm to form a super port that enable the body to filter the blood in 4 hours. This surgery needs to be done 60 days before it is “mature” enough to use. It is very painful. If you start dialysis before they can do this surgery then you are given a port in your chest.
This is the worst scenario.
You can’t get it dirty so therefore you are not allowed baths or showers. The rest of your days with that port will be sponge bath only. Trust me, it sucks. Especially if it gets infected, despite your best efforts to keep it clean, and you end up with a staph infection. Mine caused Sepsis and I say this without exaggeration that I came millimeters from death 2 years ago because of it.
The patients in a dialysis center, with few exceptions, do not look like the patients on the show. The people in the show look as if they are going to spring out of their chairs once done. Not so in real life. We look sick. We look tired. Because we are. With rare exceptions, people get out of their chairs slowly and walk out slowly. We know that we are going to feel ok for about a day, if we’re lucky, and then we are back in that fucking chair.
The patients are all too cheery. Occasionally a comment gets tossed out that deals with the tribulations associated with a dialysis lifestyle to my satisfaction but not often. In general, people in dialysis centers are not very cheery. At age 55, I have a glimmer of hope of getting a transplant. Many patients do not and at a certain age are ruled out statistically. Their only hope would be a private donor. Many others have enough medical issues to disqualify them. These are the patients that know they will be on it until they die. Some take it into their own hands. Imagine being the nurse that hears a patient say “I can’t take the pain anymore”, to find the next morning that he ended his own life that night?

The donor. Ugh. As if the process was as simple as saying “Hey, you’re a match. It takes SO much longer to get approved as a donor and it is a complex process. While I will give them credit for including the segment about the potential donor being told to clean up her lifestyle. That is true. But there is tissue typing to do. MANY tests. Psychological examinations. They have to ensure that the donor isn’t being paid or coerced. Many do not pass all of them and it is a tremendous letdown as the patient. I say this with certainty, many people offer to be tested and many do NOT follow through. It is false hope at its finest and it is crushing the first time it happens, you begin to expect a letdown eventually.

This is dialysis. This is ESRD. To make a sitcom out of this subject is a grave mistake. This show could be an opportunity to raise awareness, and I hope it does. But I doubt it will. One thing a sitcom will never do is justice to such a depressing subject matter. Laugh tracks won’t make the pain go away and unreasonable depictions do the subject matter irreparable harm.

Sorry, there’s just nothing funny about it.

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.

The new normal



Chair one is empty today.

An empty chair is the car wreck of the room. You don’t want to look at it but as you pass by, you have to. Sick? Vacation? Or did they…get that out of your head, don’t think the worse.

Chair 3 is in the private room, a walled oasis in a open desert. I’ve never been in chair 3, I’m too well-behaved. The “problem” patients seem to go in there, the ones that hassle the nurses and complain a lot. Dan the Veteran is usually in there, he hassles the staff like an old man at the early bird special. I like Dan, mostly I respect him for his military service. You know, the service that gave him the need for a heart and a kidney transplant and then denied him his VA benefits. The last time I saw Dan I asked him how we was, and he told me. After 5 minutes of him complaining, I not-so-politely reminded him that we are all at the clinic for the same reasons, maybe he could try to be a little more pleasant? It’s not that he’s not sick or that I don’t empathize, but he’s preaching to the choir. Did I hurt his feelings?
He’s not here today, and I feel bad.

Chair 4 is also empty, it is usually reserved for a new patient, a transient or someone who missed a session due to illness or weather.

Chair 5 is today’s home for Terry. I don’t know much about Terry. He’s a quiet guy, in his 60’s. He nods his hello’s and goodbyes. His knit Harley-Davidson hat and multiple tattoos suggest that he was a pretty fun guy before he got sick. He seems simple and direct, I earned his respect the first day he made his way by with his walker, when I moved my protruding feet to make room. His nod of thank you told me all I needed to know.

Chair 6 is today’s home for Kim. Kim plays with her phone and sleeps. She doesn’t say much, but she monitors the banter of the room and will occasionally smile warmly. Kim doesn’t have teeth, I think that’s why she doesn’t say much or smile often. She clearly doesn’t feel well, even after dialysis. She walks the same painful, slow walk on the way out as she does on the way in.

Chair 7 is today’s home for Jack. Jack sits upright, vomit bag in lap because of his chronic nausea, staring straight ahead through dark glasses the entire session. He says little and smiles less. It took me a while to realize that he is legally blind because he walks out unattended. He’s a big dude, I wouldn’t want to have messed with him in his prime. I wonder how he is handling his new life.

Chair 8 is empty. Lisa has been missing a lot of appointments. She has not been a patient for long. She is not handling it well, she has experienced almost every complication one of us can. I hope she starts tolerating it soon. She’s quiet, I really don’t know anything about her.

Chair 9 is today’s home for Kurt. I don’t know for how long, but he’s been doing this a long time. A small man with a great head of hair, he makes his way in with his walker and oxygen tank, armed with enough gear to survive an ice age. He always says hi to me, occasionally we sit next to each other and talk, between his frequent naps. He used to be a big man in business, now he lives for his next treatment. I like Kurt.

Chair 10 is home to John. At 81, he is a vibrant guy. Witty, always smiling and messing with the Nurses. He passes the session with a stack of newspapers in his lap, occasionally glancing at the TV. He is quick with a smile and a joke. Not eligible for a transplant, he is fine with his routine for now.

Me, I’m in chair 2. I’m uncomfortable. I’m itchy. My arm hurts from the needles. I don’t much care for this spot, the glare from the window makes it hard to see the TV. The Nurses station partially blocks my view of the room, which dampers my people watching. I read and I watch mind-numbing TV, I try to blog. I talk to the nurses to pass the time. The nurses love me. I never rush or hassle them. I am never rude. I don’t complain. They wish the others were more like me. They hate that I have to be there, but they are glad that I am.

When I’m not wondering what is going through the minds of the others in the room, I evaluate how I’m doing. The doctor’s tell me that I’m doing great. That’s the physical part. I know that. I focus on how I’m handling dialysis emotionally. I think I’m ok. I try to be active on days I feel well. I try not to be discouraged on days that I don’t. I’m getting used to it.

It’s all about the routine, after all.

Arrive and wait in the waiting room to be called in.
Make small talk with the others.
Get called in.
Report to the scale to weigh in.
Any nausea, vomiting, dizziness, change of appetite? Me, I always say no.
Go to your assigned seats and do a standing Blood Pressure.
Sit and wait for the 2 sticks from the one-inch needles that would make Dracula himself wince.
Wait for the pain to subside as the Nurse programs the machine.
We make small talk until it is time to settle in, our feet up, laptops or tablets at the ready, our headphones plugged in.
We try to nap, try to read, try to watch boring daytime TV, anything to kill 4 excruciating hours of sitting perfectly still.
When the welcome sound of the end timer goes off, the blankets come off, the needles come out, we apply pressure to the needle sight to stop the bleeding and we wait for the dizziness to subside.
We then dutifully wait our turn at the scale and announce our new weight, which is hopefully significantly lower now, and trudge out the door.
We’ll be back in a day in a half.

This is my new life, my new normal. I can live with it for now. I really don’t have a choice. Planning, scheduling, hoping to make the most of the good days. I hope to be on a transplant list soon and be in recovery by Summer.

In the interim I will continue to be the guy the Nurses look forward to seeing. The guy that other patients laugh with (or at). The guy that has become part of a community, one that has altered his outlook on what really matters in life in a wonderful, if not a routine way.

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!