Thursday, November 2, 2017

The "An Average of 5 Years", edition.

Good Thursday morning. Today is November 2, 2017. Five years ago today I was told my kidneys had failed. Five years ago today I started dialysis. Five years ago today I was dying. My nephrologist told me I was 2 hours away from dying. I felt like it. I couldn't move. And finally I couldn't breathe. Brian had to call 911 for EMS. The techs gave me oxygen, wrapped me in a blanket, put me on a gurney and carted me out of the front door of my house. My neighbors were outside looking concerned .. Because that's what you do when EMS comes to your neighborhood. 

I arrived at the emergency area of the hospital and was processed pretty quickly. While waiting for the results of test, I had one more episode of not being able to breathe. Pulmonary edema, scary stuff. The best way I can try to describe it is no matter how deep you gasp, no air is getting into your lungs. I imagine it's what a fish feels like out of water. Even now, five years later, it's frightening to think about. I was eventually told that my kidneys had failed and I would be starting dialysis immediately. Well, now I knew why I was feeling so bad. And there will a procedure to make me feel better. 

Of course I remember very little after that. I was taken to the intensive care unit (ICU). The last thing I remember was nurses taking off my clothes. When I wake up, I'm in a room with a zillion monitors. I had a blood pressure cuff on my arm taking my bp at regular intervals. I had an IV on the other arm. I have a Foley catheter (ugh). And I had a new catheter contraption on the right side of my groin. Apparently that was the emergency catheter for emergency dialysis. I had had a dialysis treatment....that I have no memory of. Now that's being very ill. 

I spent Friday, Saturday and Sunday in ICU. I was feeling better after the initial treatments, but I had a long way to go. I recall waking up at night being incredibly thirsty, but i was to weak to reach the button to call the nurse (looking back 5 years later, why was the button so far out of my reach???).  My voice was to weak to yell, plus my throat was parched, so I could barely whisper.  Picture me feebly trying to holler "help nurse".    During the day I had a dedicated nurse, but at night we all shared a nurse, I guess. The dialysis guy brough dialysis to me. And I had a physical therapist come to help me walk again. I had to use a walker. For the record I used the walker for the next 2 months...then I moved to a cane. 

The following Monday I was moved to a regular room. I stayed in the hospital until Friday. A full week. There was a distinct difference on how I felt from when I was admitted to when I was discharged. A world of difference. I felt much better, but I was nowhere near 100%. And I clearly didn't understand how much my life was going to change. 

So here I am, five years later. I never thought kidney failure was a death sentence. I thought it was more like an inconvenience, but something I needed to adjust to. When I was doing dialysis in the centers I experienced death at an astounding scale. The turnover in center due to deaths was startling at first, then it just made me sad. Now that being said, there were others who had been there for years. There was even a mother son team doing dialysis. But why am I still soldiering on when so many have fallen? 

I know attitude has a lot to do with it. Being compliant on diet and lifestyle has a lot to do with it. And how I dialyze has a whole lot to do with it. Dialysis should done like a beef brisket, low and slow. Hahahahaha.  But it's true. In center, because the centers are a dialysis assembly line..move 'em in and get 'em out...we gotta make money..quantity over quality...treatment is high and fast. Do the treatment on the patients as quickly as possible. Well guess how that affects the heart?  Taking off too much fluid. Cramps, dangerous drops in blood pressure, passing out, nausea,....death.  This.  This is what gives the 5 year average life expectancy.  But there is more. 

An informed patient can counter this, even while doing incenter dialysis. The patient needs to know the settings that work for them. Keep track of their dry weight and know how much fluid can safely be removed during treatment. Incenter my upper limit of fluid removal was 2.5 kilograms. And I knew this because a wonderful tech actually tracked when I would crash ( dramatic and quick drop in blood pressure from too much fluid being removed). Patients need to know and question each med that is being injected into them and what meds are being described. And patients need to know that there are alternatives to doing dialysis in a dialysis center. 

You know that I transitioned to home hemodialysis a few years ago and the moved on to even longer slower treatment by doing it while I am asleep. But you know what?  I encounter medical professionals who are surprised I do hemodialysis at home...that I stick my own needles. Some don't believe me. Eh. Dicks. Anyway. 

Five years average. Well I'm passing on that. Still too much going on. I need to make my new house look like I had the Property Brothers over here (lol lol). And I have a new puppy that I need to get to dogdom so we can cuddle on the bed. Hell, he's not allowed in the bedroom yet. I don't see that for a few years, so there's that. And spending time with my fabulous daughter!!  Making it my 50 year anniversary.  Plus a few more trips. And perhaps a kidney transplant. Remember what I use to say when I first started the blog? "I got thangs to do". And that hasn't changed!  

So yeah. I made it to five years. That's nice, but can I do the same thing twice? (Who did I just paraphrase?  Hehe). I'm going for it!  Yeah, I get tired and yeah  bullshit things happen. But I'm good. Stuff always happens. So yeah. I'm here for a while longer. You can't rid rid of me yet!!


Bonus photo of Glen

1 comment:

  1. This is a nice blog. Thank you for the information. Did you ever find a center with heated seats?
    Thank you

    ReplyDelete