An Inquiry and My Subsequent Thoughts

Earlier this week I received an inquiry from one of my sisters that I thought I'd share with all of you.

These questions all revolve around how I am doing in my day to day life in my fight with Polycystic Kidney Disease. I believe that I have pretty much talked about all of the questions during the span of my blog, but it's good to get it all into one entry.
I am breaking the questions up into individual sections so I can better address each.
Let's get started...

Knowing that without dialysis you would cease to live..., can you address how dialysis has impacted your life?

Like any dialysis patient would [likely] tell you, I'd rather not be doing this treatment. There are lots of other things I would rather be doing right now. However, that's not the reality of things. 
As my disease progressed, I was feeling worse with every passing week. I had my daily routine at home, making it as productive as it could be, all things considered. Often though, I was nauseated nearly to the point of emesis (vomiting), and could stay like this for hours. I was sleeping 7-9 hours per night, napping 3-5 hours minimum every day, and my appetite was almost non-existent. By the time I started dialysis on 10 July 2012, I was doing very little from day to day, I spent most of my time laying in my recliner, or in bed, and didn't want to do anything. To say I was miserable would be a vast understatement.

In the year since beginning treatment, my body has adjusted to the schedule of the three times per week regimen. My appetite is much better now. I am eating foods that I am now enjoying--and tasting!--and instead of having zero good days every week, I now get between 1-4 good days, depending on how I am feeling on my off-days. And on those off-days, I am generally more productive around the house, I have more energy, and I at least enjoy most things, even if only a little.

I still can't drive (or be driven) much because of meds, but I get to a couple of movies a month, and try to get out to do some photography every few weeks or so. I still can't do much walking, either, as my energy is quickly drained, and I simply lack any physical stamina--due to nearly four years of feeling lousy--to do much outside of the house. 

Overall, I can say unequivocally, that without dialysis, I would still be a miserable heap in my chair or on the bed. No, the treatment isn't ideal by any stretch; but it is far more preferable to the alternative!


Has your quality of life improved, stay the same or worsened? 

My QOL has definitely improved! Just refer to my previous comment. Again, dialysis sucks. But, the time goes by quickly (four hours, for me), and I can usually wake up the next day and be productive around the house. I can also work on my photos, dip into my creative writing, and make plans for my long, successful future.


Were you expecting more benefits from dialysis than what has come to pass?

To be honest, I was quite scared to even start dialysis. I have only ever heard very negative first hand accounts about the treatment--including from my mother. I was incredibly nervous that first day. Luckily, I was given a fantastic dialysis tech that first day who explained everything they were doing. I was put completely at ease about everything. And you know what? My expectations of dialysis turned out to be blown way out of proportion. Again, the treatment sucks; and it makes me feel lousy for an entire day afterwards. But overall, it really is no big deal.

As far as any anticipated benefits, I really had none. Just feeling better was good enough for me.

I have addressed the need for anyone looking at dialysis to educate themselves as to the treatment, what to expect, etc. The more you know, the fewer surprises will happen, and you can have an easier time of things. My doctor often gives me a bad time about how much I research everything I'm going through. At the same time, he praises me for being prepared and taking care of myself mentally. The staff at the dialysis center all have commended me for knowing ahead of time what I should expect with treatments, outcomes, etc.  As a patient, it is within your rights to ask LOTS of questions, to understand everything that is happening no matter where you are in your treatment plan, and to be prepared for any changes along the way.

You are completely in charge of your treatment! All you have to do is follow the prescription regimen that your nephrologist recommends, follow the dietary recommendations from the dialysis dietitian, watch your fluid intake,  and keep your mind in a good place. It's really not hard to do!


Would you ever make the same choice that mom did?

My mom, after batting decades of Multiple Sclerosis, contending against the physical and mental effects of childhood abuse (physical, emotional, sexual), and years of renal failure, decided that with no hope of transplant--she was not a viable candidate due to he numerous health issues--she would remove herself from her dialysis regimen in early 2000, and then endure a slow death as her body shut down completely. She dies on Valentines Day, 2001.
*I didn't get to her funeral because I had had an L5/S1 Spinal Hardware Fusion in late November of 2000, and was forbidden to travel until at least May, or later. My mom understood this, but chose her actions in spite of this.

Anyhow, Would I make the same choice?

Absolutely not! Such a decision is not in my nature. I won't give up. For me, it's not a matter of 'would I,' because I simply don't think that way. It doesn't even enter my mind.
I just won't give up. And honestly, I don't think I would even know how to give up. It's just not me; who I am, or anything else. No. Not a chance.

We all have the inherent ability to rise above any trial that is placed before us. This ability is stronger in some than others, but everyone has it. The body and mind will fight long after we thought we could endure.
In me, this is particularly strong. I just can't give up. It simply won't happen.

And I know what I'm talking about. In my adult life I've had TMD headaches--migraine-like headaches that can last for months at a time--that went uncontrolled for fifteen years, followed by the back injury and subsequent surgery, followed by almost ten years of physical therapy, followed by this kidney disease. In all that time, I have never once thought about giving up. Never considered the alternative to fighting. Never. Again, I just can't give up.


So, there you are. I hope that I have sufficiently answered the questions. That only took me about two hours.  :-S

Good Health to All!

ScottW