After "sleeping on it" I decided to add a few things to this post.
Warning; this post may be disturbing to some! Dialysis is a life saving treatment for kidney failure.
Life without dialysis (when you need it) is death. I have to do dialysis if I want to live. Many people struggle with this decision, they argue quality over quantity. What kind of "life" would you have being trapped by a disease? What kind of "life" would it be, to have to do something to live? Well, let me tell you. It is AMAZING! I am alive because some dude was smart enough to come up with this little machine, that can clean my blood!
I won't sugar coat it, and say it is all peaches and cream to be doing this all the time. It is hard, it is stressful, and it involves a lot of pain and some days I don't even want to get out of bed. But I do, because I can. I decided a long time ago, I will not let dialysis define me.
Let me rewind a bit, and tell you a little bit about my own person experience with this.
When I was 10, I lost my right kidney due to a tumor being removed. I grew up just fine, not knowing anything else was wrong. I was told I would never have children, unrelated to the kidney issues. Well, they lied. I got pregnant at the age of 20. I was 26 weeks when they decided he needed to join our world. He was a whopping 1 lb, 6 oz when he was born. (He is an amazing little boy now, doing very well!)
The doctors were concerned, and sent me for a kidney biopsy, where the discovered that I have focal segmental glomerulosclerosis (yeah, try to pronounce that..) or FSGS*. So, the nephrologist tells me, "Oh, you probably have about 10 years before it will ever even effect you."
Me, being a procrastinator, was none too worried about it.
Fast forward to 2007, that is 3 years, and I am very unwell. The doctor sends me a letter, that simply states, "Will need fistula* soon"
"What is a fistula????" I thought to myself. I looked it up. At that point, I was scared, unsure, and didn't know what to think. It was also the first time I had even heard of dialysis. I had no idea. I was not prepared for anything.
Over the next few months, I had surgery after surgery trying to get this fistula thing, getting MRSA, hospitalized, ending up with an ash catheter in my neck, and everything else.
Then, in July of 2007, I had my first dialysis session. I started at a Davita clinic. After a few years of... well... I don't want to talk smack about the clinic I used to go to, but let me just say I ended up choosing to stop dialysis, rather than go there. I ended up in the hospital, very sick. That is when I decided to go to this other clinic.
It is an amazing place, the people are great, the way they run is excellent. They gave me life again.
After some time on dialysis, I was fortunate to find a group of people who are amazing, wonderful, and I don't know what I would do without them. I hate dialysis (www.ihatedialysis.com) has been a life saver for me.
Some of you may wonder, what exactly is dialysis? And don't use medical jargon I dont understand!! How would I express what dialysis means to me?
I chose to do in-center Hemo Dialysis. It is a treatment that keeps me alive. I go to a clinic 3 days a week, the treatment takes me 4 hours. Times vary by patient. They take my blood out of my body and put it through a filter (think coffee filters stuffed into a tube) and then put the blood back inside me. It takes out all the toxins that I can't get rid of myself, as well as the fluid. A lot of people on dialysis do not urinate, so we rely on the treatment to take out all that fluid we put in!
It is rather 'magical' to go in, have your treatment and come out 10 lbs lighter!
Some times, after my treatment, I feel better, but typically, I feel drained and weak. Some people feel differently. It is very personal to you. No two patients are alike.
When I first began dialysis, I was told I couldn't have a transplant, due to my weight. I was too fat for a transplant. And my doctor was just sure that I could never lose the weight, so I never really even tried. But, somehow, I managed to lose 100 lbs. Now I am eligible to try, so I did. I was denied from one of the transplant centers I tried to go to, but I was accept as "inactive" on the list at another. Basically, that means I have some work to do while I wait. I had to have a hysterectomy, and some tests done. Now, I wait patiently for my type O kidney to come my way. :) Any one have a spare? :p
Being a single mother, and a dialysis patient, has it's ups and downs. On one hand, I have to be thankful, I am alive and here for him. On another, I feel as though I am selfish, making him put up with me being sick all the time. I do try to push myself to give him the best possible life I can. I even bit down on my pride and moved back home, where I get much needed assistance from my uber wonderful father.
It saddens me that my son has had to deal with my sickness, and that I haven't done all of the fun things I had planned for us before I got sick. We do some things, but I wear out rather easily. He seems to be very understanding, and such a sweet boy.
I think that's about it. Below I will post links for the words used in here, in case you are interested.
*AV Fistula
http://en.wikipedia.org/wiki/Arteriovenous_fistula
*FSGS
http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis
* Hemodialysis
http://en.wikipedia.org/wiki/Hemodialysis
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