Thursday, August 01, 2013

Getting by

Many of you who come across my blog do so because they know me (whether thru Facebook or genuine old friends). But over the course of the 9 years I've had this blog many have wandered across my small slice of the Internet by accident. Perhaps they were looking for a politically conservative viewpoint by someone who really does try to be even handed. Or perhaps they came here looking for information about organ transplantation. I do know that many came to my blog through my transplant story.

It isn't often I talk about my own personal life because I figure it isn't why you are here. Yeah, I do remind folks about the fact I've had a heart transplant and occasionally I have written updates about my health. But for the most part, I leave that to Facebook and my closer inner circle. But to be honest, I get tired of hearing about it also. 

Without question, I have cause and reason to be angry and frustrated. Yes, I realize there are those who have it far worse than I. But I also know there are far more who couldn't function if they had just one of the ailments I seem to attract. Sure, people around 40 years old have heart attacks - and many die from it. Sure, many people have bypass surgery - and again, many do not survive. How about a stroke to go along with that? Ok, so I had a bit of bad luck by having both a heart attack (massive, mind you) and a stroke, which left me in a coma for a month, with torturous dreams I still relive.

I have no doubt that many people have suffered from Post Traumatic Stress Disorder, as well. I consider myself very fortunate to have been able to mostly overcome my PTSD, although it took 2 years and cost me my marriage. And you know what? I stayed stable for a few years. Oh sure, I was warned my kidneys would eventually be a problem. But I suffered the worst, right? I mean, how bad could it be going forward?

Sadly, I found out the answer this past year. It started last May, when my back suddenly gave out on me and I fell down the stairs. I had lower back surgery in 2000 and figured I was done with that issue. But it seems my back had other ideas. Ironically, this was the same time that I needed to have my knee replaced. After years of abuse, with a number of minor, arthroscopic surgeries under my belt, there was no longer anything the surgeon could do that would allow me to walk (other than total knee replacement). So I had that done. But since my back was a major issue, my rehab from the knee surgery was less than successful - and now, more than a year later, I still walk with a bad limp and swelling in my knee. It's just my luck that my back would give right when I was healing my knee.

But I got past that and seemed to stabilize. Of course, that was until October, which is when my kidneys went kaput. Immediately, my life was turned upside down with having to face a lifetime of dialysis. And then one thing led to another and I found myself back in the hospital with clots in my lungs. At the same time, since I was already in the hospital, my doctor recommended I have a peritoneal catheter put in my abdomen so I can do dialysis at night (on my own). Although I wasn't yet certain I wanted to go that route, the surgeon implanted the catheter anyway - forcing me to decide to go that route.

What I wasn't told in advance was how involved peritoneal dialysis was and how even the slightest mistake can cause a heap of trouble. But I was stuck with it, so I went through the training, which scared the daylights out of me. I finally decided, after 2 weeks of training, that this was not the type of dialysis I wanted to do. The amount of time and care necessary to keep every sterile was overwhelming - especially to someone like me - someone who is now mostly bedridden due to my back and blood clots (the blood thinners causing tremendous bruising and pain).

But before I had a chance to do anything about it, I got really sick with Diverticulitis. It isn't uncommon for someone my age. But again, it just adds to the health issues I've had over and over again. This time I ended up in a bad hospital. This place was awful and one thing I noticed was that they had no clue how to take care of a peritoneal catheter. My problem was that the diverticulitis was causing me significant discomfort and I really was in no position to take care of myself.

But still, even though I was feeling sick and unable to eat anything, they transferred me to a nursing home, which had even less knowledge about taking care of me. Before the end of the next week, I was back in the hospital (a better one) with a colon dissection and abscess that, by all accounts (considering that I take immunosuppressents) should have killed me. How I survived, with the toxins spilling out of my colon and bowels, is still a mystery.

I fell into another coma and eventually healed enough to go to a nursing home. As it turned out, besides the abscess, I ended up with Peritonitis, which is an infection of the peritoneal cavity - exactly what I was warn against. Thankfully, the surgeon this time removed the catheter. So now I'm on regular hemodialysis.

I came home in May to recover and slowly get my life back in order. Because of the colon dissection, I am forced still to use a colostomy bag. At least until my colon reattached to my bowels, I refrain from going out socially. Perhaps it's an emotional response. But I just don't feel very social while pooping into a bag. So when will this surgery take place? It was supposed to be already. But I once again developed blood clots in my lungs. So that is causing a delay until I'm no longer on blood thinners. 

So now I spend my days either at dialysis (3 days a week), which by its nature wipes me out. Or I'm home resting. My back is still a major stress, as is gout (which can not be treated due to my kidney disease). I'm in constant pain and am actually wearing a Fentanyl patch, along with a regular prescription for Dilauded and Norco. The medications tire me out, as well as hamper my moods. I'm often depressed, or just apathetic - and those who know me know I'm usually a positive guy.

I hate feeling like this and sadly I don't know what else I can do but go on day to day and hope for a good one. I'm often very low on money, which is why I have a GoFundMe link in the links section above.

Perhaps writing this out is therapy and it does help to verbalize what I'm feeling. Again, it isn't that I'm so special, or that others don't have their own problems. I just often feel like a bad news buffet lately where I get knocked down at every turn and simply haven't the strength to get up any longer.

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