Some people I have encountered wondered, "Can't a person live forever on dialysis??" I will tell you...the answer is NO.
First of all, I can tell you right here and now, because I had dialysis today, I am cramping, from head to foot, because I had so much extra water weight that had to be removed. The more water weight you remove on dialysis, the more it hurts, and I do mean HURTS!!!
I've been doing this for three years now...have been on both ends of the water spectrum, and I hate both extremes, though I will admit I tend to prefer the dehydrated end, because I look better that way.
However, if only I could remove my own fluid the way I used to do, I would be such a happy camper!!!
There is a catch to getting a transplant, and please don't think I'm complaining. I am merely sharing with you a fact. The house has to be extra spic-n-span clean, and I cannot have even one small molecule of infection in my body, because if I do, there will be no transplant. On my end, things have to be super-duper-perfect, in every possible way!! This has had my nerves in a million knots for the last few months. While this will all be worth it, getting ready for a transplant is no small job.
I hope you understand that I'm just sharing some facts with you. I am NOT complaining about getting a transplant. Lord knows, I will be the happiest woman in the world when that transplant finally happens, next month (Lord willing!!).
Thanks for understanding.
xoxo
Thursday, July 22, 2010
Nov., 1986...Before I had PKD.
I maybe should say, this was before I knew I had PKD...in November, 1986, the day after Thanksgiving. I had just recovered from a brief struggle with anorexia, and I thought I was going to be doing great. I thought all was back to normal.
Little did I know, that less than a year later, I'd receive a diagnosis that would eventually turn my whole world upside-down and backwards.....
Did I screw my own body up by doing all that dieting and exercising??? I wonder to this day.
Sunday, July 18, 2010
Hemodialysis sucks!!!
I'm not diabetic, and I often got dehydrated doing peritoneal dialysis ("PD"), but not being able to drink on hemodialysis, is torture! Thought I'd let you know.
I left dialysis yesterday at 59.8 kg. To maintain anywhere near that weight, would mean drinking less than a glass of water, and including ice in that measurement, so less than a glass of water and ice combined. But I do drink a lot. Not sure why. I'm not diabetic, but I get really thirsty really easily. No, not thirsty enough to maintain myself during "PD," but too much for hemo.
I hate hemo, I truly do. I hope and pray that next month (a month from today) will be my transplant, and that I can keep my new kidney for the rest of my life, so that I can drink like normal again!!!! I pray that earnestly, I do. Because if I should somehow lose my kidney and wind up doing this hemo crap again, I will want much to die. I'd also be starting groups: Waterholics Anonymous, and Iceaholics Anonymous. I truly don't want it to have to come down to that...that I'd have to start such support groups. Far be it from me to have to do that!!
Hemodialysis can go suck a lemon, it truly can.
Thanks for reading.
xoxo
I left dialysis yesterday at 59.8 kg. To maintain anywhere near that weight, would mean drinking less than a glass of water, and including ice in that measurement, so less than a glass of water and ice combined. But I do drink a lot. Not sure why. I'm not diabetic, but I get really thirsty really easily. No, not thirsty enough to maintain myself during "PD," but too much for hemo.
I hate hemo, I truly do. I hope and pray that next month (a month from today) will be my transplant, and that I can keep my new kidney for the rest of my life, so that I can drink like normal again!!!! I pray that earnestly, I do. Because if I should somehow lose my kidney and wind up doing this hemo crap again, I will want much to die. I'd also be starting groups: Waterholics Anonymous, and Iceaholics Anonymous. I truly don't want it to have to come down to that...that I'd have to start such support groups. Far be it from me to have to do that!!
Hemodialysis can go suck a lemon, it truly can.
Thanks for reading.
xoxo
Tuesday, July 13, 2010
23 Years Ago Today....
It was July 13, 1987, when I received the diagnosis that would change my life forever.
I had survived a difficult junior year in high school, and had recovered (essentially) from a brief struggle with anorexia. Believe me when I say, I think my dad may have saved my life when he stopped me from becoming a model...had he done nothing, I might have become perpetually anorexic, and probably would have died from that at an early age.
In June, 1987, Mom and I accompanied Dad on a business trip to Cocoa Beach, FL. Yes, there really is such a place, and I loved being there those two weeks.
During our "vacation," I continued to maintain my diet and exercise routine, which I had modified a little, after I had to recover from being too thin. Fine. I was doing very well with that. Never got under 100 lbs., as I had the year before. Always, about 104-105 lbs., which to this day, I would love to be able to weigh!
When we returned home, again, I was up to my usual diet and exercise routine. I had let up a little on the exercising, but was still spending most of my waking hours with that.
July 12, 1987: I got off the couch to turn the TV off, after enjoying an episode of "The Monkees." When I got up, my low back started hurting terribly. I thought I had merely pulled a muscle during exercising earlier that day. But, overnight, I had to make frequent trips to the bathroom...maybe once or twice an hour. I took Tylenol for the pain, but for the first time in my life, Tylenol just did not cut it.
That was why I figured that something must be terribly wrong.
That day--July 13, 1987--I saw my pediatrician, who ordered a CT scan of my kidneys.
That was how we found out. It was official as of that day. I have Polycystic Kidney Disease.
Questions remain in my mind to this day. Did I screw my own body up with all that dieting and exercising????? The very things that are supposed to be good for you...fitness, and all that...did it screw my body up??? What happened??? How did I get this disease, which is normally hereditary, but no one in my family has it???
To this day, I wonder.
As I am sure you know already, but I'll tell you anyway, the old PKD kidneys had to come out in November of 2007...20 years after the initial diagnosis. I had no idea that my kidneys would fail so early on in my life...then again, I knew nothing about dietary restrictions as a way to slow down the progression of kidney failure. Had I known 10 years ago what I know now, I might not be on dialysis yet.
It does no good to kick myself in the tail for all of this. What's done is done. All I can do is pray that I do indeed get a kidney transplant this August (the 18th, if all goes well...just one more month). I can't change the past, other than to pray for forgiveness, on the outside chance that I did screw my own body up.
Thank you for reading!!
xoxo
I had survived a difficult junior year in high school, and had recovered (essentially) from a brief struggle with anorexia. Believe me when I say, I think my dad may have saved my life when he stopped me from becoming a model...had he done nothing, I might have become perpetually anorexic, and probably would have died from that at an early age.
In June, 1987, Mom and I accompanied Dad on a business trip to Cocoa Beach, FL. Yes, there really is such a place, and I loved being there those two weeks.
During our "vacation," I continued to maintain my diet and exercise routine, which I had modified a little, after I had to recover from being too thin. Fine. I was doing very well with that. Never got under 100 lbs., as I had the year before. Always, about 104-105 lbs., which to this day, I would love to be able to weigh!
When we returned home, again, I was up to my usual diet and exercise routine. I had let up a little on the exercising, but was still spending most of my waking hours with that.
July 12, 1987: I got off the couch to turn the TV off, after enjoying an episode of "The Monkees." When I got up, my low back started hurting terribly. I thought I had merely pulled a muscle during exercising earlier that day. But, overnight, I had to make frequent trips to the bathroom...maybe once or twice an hour. I took Tylenol for the pain, but for the first time in my life, Tylenol just did not cut it.
That was why I figured that something must be terribly wrong.
That day--July 13, 1987--I saw my pediatrician, who ordered a CT scan of my kidneys.
That was how we found out. It was official as of that day. I have Polycystic Kidney Disease.
Questions remain in my mind to this day. Did I screw my own body up with all that dieting and exercising????? The very things that are supposed to be good for you...fitness, and all that...did it screw my body up??? What happened??? How did I get this disease, which is normally hereditary, but no one in my family has it???
To this day, I wonder.
As I am sure you know already, but I'll tell you anyway, the old PKD kidneys had to come out in November of 2007...20 years after the initial diagnosis. I had no idea that my kidneys would fail so early on in my life...then again, I knew nothing about dietary restrictions as a way to slow down the progression of kidney failure. Had I known 10 years ago what I know now, I might not be on dialysis yet.
It does no good to kick myself in the tail for all of this. What's done is done. All I can do is pray that I do indeed get a kidney transplant this August (the 18th, if all goes well...just one more month). I can't change the past, other than to pray for forgiveness, on the outside chance that I did screw my own body up.
Thank you for reading!!
xoxo
Monday, July 5, 2010
No More "PD" Catheter
I meant to post this last week, shortly after telling you about my new hemo. catheter (which has already had to be replaced once).
The "PD" catheter had to come out because of the nature of the infection I was trying to recover from. Because some infections cling to the inside part of the catheter, the patient would be doomed to never get rid of the infection, without getting rid of the catheter.
Here is where my "PD" catheter used to be. Because it had been in the only part of me that wasn't full of scar tissue, there's a very slim chance that "PD" will be in my future again at all.
I will be back, shortly, with some good news.
The "PD" catheter had to come out because of the nature of the infection I was trying to recover from. Because some infections cling to the inside part of the catheter, the patient would be doomed to never get rid of the infection, without getting rid of the catheter.
Here is where my "PD" catheter used to be. Because it had been in the only part of me that wasn't full of scar tissue, there's a very slim chance that "PD" will be in my future again at all.
I will be back, shortly, with some good news.
Children Grow Up So Fast!
Now, when I say that, I have my little fur-child on my mind...my new kitten...little Tabby. She's grown so much...and I've only had her for about two weeks now. Already, she's into her discovery phase...always discovering new things...but she's still very cute, and sweet!! She likes to jump a lot too.
Here's a recent picture of Tabby and me. She may be a little camera-shy now, but soon, she'll be a regular ham, I'm sure. :-)
Here's a recent picture of Tabby and me. She may be a little camera-shy now, but soon, she'll be a regular ham, I'm sure. :-)
Sunday, July 4, 2010
Aug. 18th....
The latest is, that as far as I know, my transplant is scheduled for Aug. 18th. I'll be keeping in touch with everyone, including my donor, to be sure I don't miss a beat. But that's our date, as far as I know.
Coming up shortly.
I am either going to have to get strong enough to clean this pig-sty of a house, or I'm going to have to hire a maid. Whichever...I know that things cannot stay the way they are, because if they do, my body will reject my new kidney while trying to keep from getting sick from all the dust and crap in the house.
I'm fixing to move, even, if that's the only way I can have a clean, and healthy, environment to recover from my transplant in. That is why, though. Because there's no other way.
I'll keep you posted, but I may have to be away from here for awhile....
Thanks for stopping by!
Coming up shortly.
I am either going to have to get strong enough to clean this pig-sty of a house, or I'm going to have to hire a maid. Whichever...I know that things cannot stay the way they are, because if they do, my body will reject my new kidney while trying to keep from getting sick from all the dust and crap in the house.
I'm fixing to move, even, if that's the only way I can have a clean, and healthy, environment to recover from my transplant in. That is why, though. Because there's no other way.
I'll keep you posted, but I may have to be away from here for awhile....
Thanks for stopping by!
Subscribe to:
Posts (Atom)