I'm not closing this blog down. I'm merely not going to add any additional posts.
I can take a hint, I really can.
I'm 40 years old...you'd think that, by now, I'd have learned to just shut the hell up.
So...I'm shutting up.
Please feel free to read all that I have already written.
I'm just not going to show up any more with any new blogs.
If you feel like you want to leave me a comment, please be my guest...and I'll answer you as soon as I'm able.
Thank you so much for reading (if you have).
Thursday, September 30, 2010
Monday, September 13, 2010
Almost two weeks after the big surgery...
Well, I am told that recovery will be slow, but sure.
This, I believe. For one thing, I'm experiencing this firsthand. Secondly, my dad told me he needed a good month or two to recover from his appendectomy...he was 25 at the time (and I'm now 40), so he was young and otherwise in excellent shape. Plus that an appendectomy is nowhere near as big a surgery as an organ transplant...so I can expect to need plenty of time to recover fully.
It has been almost two weeks since my kidney transplant, and I still feel far from "normal." I can see the light at the end of the tunnel, and I know what is meant by a new "normal," that I will be living soon. A lifetime of anti-rejection meds, extra cleanliness, hand sanitizers, face masks, extra caution when around people, or just avoid large crowds. Also, this is the start of a heart-healthy diet...which, although that may sound restrictive, it is nothing like the dialysis diets I had to follow for three years. Heart-healthy is actually a good way to go, for anyone...not just transplant recipients.
Last Thursday, two days after my initial release, I had to go back to the hospital for a few days. Had a killer headache, and couldn't keep anything down, which of course, was a concern for me, because should I not be able to keep my meds down, my new kidney would not survive for long. So, I checked into the ER, and spent the weekend in the hospital under observation. I was almost released yesterday (Sunday), but I asked to stay one more night while the doctor and nurses switched me from IV meds to oral meds, to be sure I was OK...which I was. So today, I'm back home. Good to be back home, but what caused that headache in the first place??? Stress, maybe??? If it was stress, I may wind up going through that often...that's just how I am...headache-prone. A CT-scan done this past weekend confirms...I have a benign arachnoid cyst on the left side of my head. It is only the size of a golfball or so, but nonetheless, it's there. Now, we're going to follow up with yearly MRI's, to be sure that it's not growing or changing for the worst.
Meanwhile, from not being able to drink endless water for three years, to now having to drink the usual 8 glasses or more every day, is quite a switch. My body is going through a lot of switches, so I can expect some instability...physically and emotionally, both. I wish my new kidney and me a lifetime of joy together!!!!!
I also wish my donor only the best of years to come with her one remaining kidney, and I am forever thankful to her for the "gift of life" that I have finally received.
Thanks for reading!! Love ya!!
This, I believe. For one thing, I'm experiencing this firsthand. Secondly, my dad told me he needed a good month or two to recover from his appendectomy...he was 25 at the time (and I'm now 40), so he was young and otherwise in excellent shape. Plus that an appendectomy is nowhere near as big a surgery as an organ transplant...so I can expect to need plenty of time to recover fully.
It has been almost two weeks since my kidney transplant, and I still feel far from "normal." I can see the light at the end of the tunnel, and I know what is meant by a new "normal," that I will be living soon. A lifetime of anti-rejection meds, extra cleanliness, hand sanitizers, face masks, extra caution when around people, or just avoid large crowds. Also, this is the start of a heart-healthy diet...which, although that may sound restrictive, it is nothing like the dialysis diets I had to follow for three years. Heart-healthy is actually a good way to go, for anyone...not just transplant recipients.
Last Thursday, two days after my initial release, I had to go back to the hospital for a few days. Had a killer headache, and couldn't keep anything down, which of course, was a concern for me, because should I not be able to keep my meds down, my new kidney would not survive for long. So, I checked into the ER, and spent the weekend in the hospital under observation. I was almost released yesterday (Sunday), but I asked to stay one more night while the doctor and nurses switched me from IV meds to oral meds, to be sure I was OK...which I was. So today, I'm back home. Good to be back home, but what caused that headache in the first place??? Stress, maybe??? If it was stress, I may wind up going through that often...that's just how I am...headache-prone. A CT-scan done this past weekend confirms...I have a benign arachnoid cyst on the left side of my head. It is only the size of a golfball or so, but nonetheless, it's there. Now, we're going to follow up with yearly MRI's, to be sure that it's not growing or changing for the worst.
Meanwhile, from not being able to drink endless water for three years, to now having to drink the usual 8 glasses or more every day, is quite a switch. My body is going through a lot of switches, so I can expect some instability...physically and emotionally, both. I wish my new kidney and me a lifetime of joy together!!!!!
I also wish my donor only the best of years to come with her one remaining kidney, and I am forever thankful to her for the "gift of life" that I have finally received.
Thanks for reading!! Love ya!!
Wednesday, August 25, 2010
One week left...
So you know, I'll be busy for awhile.
One week from today...Sep. 1st, 2010...is the day I get my life-saving kidney transplant.
I thank my donor, if she should happen to read this...THANK YOU, WITH ALL MY HEART AND SOUL!!!!!!
I'm excited, believe me, I'm excited. I'm just trying not to get toooo excited, after what happened last year. I had a living donor then too, but our surgeries were canceled at the last minute. That donor and I didn't even hear why...just suddenly, we were canceled. We were both VERY upset by that. Knowing that even in this next week, something could happen, I'm just not getting too excited, but I am very happy about my big day being just around the corner.
As the recipient, I get to stay in the hospital for a week or so...Then, when I come home, I'll be pretty much out of commission for about six months or so...except for having to go to a lot of doctors' appointments and lab tests.
Anyway, so that's what I'll be up to for awhile. I'll return to my story here as I am able, but I'm not going to push myself during the recovery period. I'm going to take it easy...please bear with me if I'm not on here much.
Thanks for reading this post, and all the others that you may have read here!! Love ya!! xoxo
One week from today...Sep. 1st, 2010...is the day I get my life-saving kidney transplant.
I thank my donor, if she should happen to read this...THANK YOU, WITH ALL MY HEART AND SOUL!!!!!!
I'm excited, believe me, I'm excited. I'm just trying not to get toooo excited, after what happened last year. I had a living donor then too, but our surgeries were canceled at the last minute. That donor and I didn't even hear why...just suddenly, we were canceled. We were both VERY upset by that. Knowing that even in this next week, something could happen, I'm just not getting too excited, but I am very happy about my big day being just around the corner.
As the recipient, I get to stay in the hospital for a week or so...Then, when I come home, I'll be pretty much out of commission for about six months or so...except for having to go to a lot of doctors' appointments and lab tests.
Anyway, so that's what I'll be up to for awhile. I'll return to my story here as I am able, but I'm not going to push myself during the recovery period. I'm going to take it easy...please bear with me if I'm not on here much.
Thanks for reading this post, and all the others that you may have read here!! Love ya!! xoxo
Thursday, July 22, 2010
To Dispel a Theory...
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
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
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
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