After reading several stories recently about individuals on dialysis and their different methods of seeking a kidney transplant, I have decided to join the growing crowd. So I am modifying my blog, which I started as a series of stories about my kids when they were little. Then, over the last three years, my blog has drifted to focus entirely on me. And my kidneys.
I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney. Eventually, I had both kidneys removed because they were so large (18 pounds total).
I have been on dialysis for three and a half years, starting in September of 2009. I lost my job as a result two months later. Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications. It's a rollercoaster. I will have a couple weeks, where everything is just right. And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash. Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session. And finally, again, I'll reach a point where I think, this is just right. But Murphy's Law prevails. And none of us (my seatmates) is exempt.
So - this blog is slightly revamped now. We'll see how this goes.
Showing posts with label Kidney Disease. Show all posts
Showing posts with label Kidney Disease. Show all posts
3.22.2013
5.31.2012
O Fun!
I think I have enough on my plate. You know - a little dialysis here, a little dialysis there, blood pressure crashing, blood pressure over the top, blood won't clot, blood runs amok, weight rises, weight falls better than any weight loss program I've ever seen.
Now there's a spot on one of my kidneys. This was discovered during one of the gazillion (seriously) tests I've taken over the last three years to get on the transplant list. And that's another story. (I'm on the list, but since my COBRA ran out, now I'm on hold until I get Part D insurance under Medicare.)
Anyway - there is a spot in the top center of my left kidney that might be renal cell carcinoma. And then it might be just a cyst filled with blood vessels. But they can't do a biopsy because they don't want to risk the chance of spreading cancer cells. This is all in preparation for that coveted day that I get "The Call" for a new kidney. After the transplant I will have no immune system and any cancer cell - I mean ANY single cancer cell - will explode into a rampant, full-blown, fatal cancer.
So - I saw a surgeon a couple weeks ago and he is "certain" it is cancer and I need to have my left kidney removed. There is an upside to this - my kidneys are so huge that it is amazing I don't look pregnant. They are overtaken by cysts, and the cysts have cysts, and the mutilated, deformed kidneys are each about nine inches long, probably 8 to 10 pounds a piece, and are taking up valuable space for a new kidney.
I got a second opinion yesterday and this new surgeon suggested that I have BOTH kidneys removed because they are not functioning. They don't filter any of the toxins that kidneys normally filter. They don't help produce oxygen in my red blood cells. What little urine I produce is only a psychological benefit - my mind thinks I'm doing just hunky dory because I still pee - dialysis is just a thing I do every other day. I'm perfectly fine, thank you very much. Only, I'm really not fine - my insides are squashed by my bully-bad kidneys that are doing nothing but continually growing and forming more cysts.
Surgery is scheduled in three weeks. And I'm kind of scurrying around tying up loose ends because this is a pretty damned serious surgery.
Also - if this little questionable cyst turns out to be cancerous, I am on hold on the transplant list for two years. So - the clock is ticking.
9.10.2009
My Kidneys and Me
Big Bully Kidneys
or
Kidneys R Us
or
Kidneys Rule
You didn’t ask but after talking with friends, I thought it would be a good idea to give you a basic easy-to-understand synopsis of kidney dialysis. First, though, you should probably prop your head up on something in case you fall asleep or go unconscious or into a coma or something. Prepare to snooze.
I am having to research my plight and decide which is the lessor of several evils.
Did you know that people whose kidneys are failing are experiencing the medical term: End Stage Renal Disease (ESRD). Sounds innocuous enough, doesn’t it. But wait! It says “End Stage” as in - death is knocking at your door, big guy. When your kidneys fail, you need to find some alternative to just sitting back and letting nature take its course – because nature is done with you. Those two little organs (well, in my case not so little) have powers you wouldn’t imagine. Like creating red blood cells. Boosting your energy. Filtering waste. I’m very close to having no kidney function at all. I lay awake wondering what will be the tell tale sign that THIS is it; this is the big one; this is all she wrote, kid. Will I gradually just stop peeing??? Will my guts suddenly clench like a thirsty man in the middle of a desert with absolutely not a drop of water anywhere? Will I just not wake up? What??
So – I am researching the different methods of dialysis. First – you should know that there are two types of dialysis – hemodialysis and peritoneal dialysis. One is through your blood – one is in your peritoneal cavity between the membrane surrounding all your organs and your skin.
There are pluses and minuses on both. So, here’s my take. With hemodialysis, you have to have a fistula prepared, which is a surgically constructed vein utilizing your own vein and it is permanent – usually in your arm. In my Dad’s case, his fistula always needed “roto rootering” or it was relocated entirely to a new site – and there are limited sites. Dad ran out of sites. Also, with hemodialysis, you get two needle sticks every time you have dialysis, three days a week. Plus, getting a shot of epogyn for your anemia (which requires a monthly blood draw). It’s just poke, poke, poke, poke.
Ummmm, that looked like a whole lot of negatives. The plus, if there is one, is that you don’t do a thing. You just go to the dialysis center and nurses and techs will be happy to poke you two or three times; ignore you if the alarms go off until your neighboring dialysis victims start really complaining; stick you AGAIN with something to deaden the pain, but not quite, and then stick you for the start of dialysis, and then for good measure repeat the whole process when you end dialysis.
With peritoneal dialysis – you have to have a tube surgically inserted in your belly, with two little bumps that act as stops so the tube will stay in place – and eventually scar tissue will form around the little bumps and seal the deal. Viola! Your newest body appendage. Yippee. The plus with peritoneal dialysis is that you can do it at home. You can take it with you and do it on trips. At work. Anywhere your little heart desires. The drawback is that you feel pregnant. You have all this dialycate (the solution used to filter your blood) and your peritoneal cavity stores it until you replace it. You feel “stretched.” The documentation also warns that you will have to deal with your “feelings about your body image.” You will look FAT. I’m short enough that I will look very round. Just give me a shove in the general direction, and I’ll just roll there. I already have issues with my body image. Sheesh. And while I’m filling up with dialycate, my kidneys are casually increasing in size all on their own. It’s like girl friends pointed out to me – wouldn’t it be nice if your kidneys were located in your boobs? Mechanic Man would probably think he died and went to Heaven.
So – either of these is a difficult choice to make. One, hemo, offers me every other day off. But at the cost of hours every other day on dialysis, plus working a full time job (because kidney patients are not considered disabled), so I go to work at 8:00, get off at 5:00, go to dialysis at 5:30, leave at 9:00 and somewhere in there I will have a normal life with Mechanic Man. Right?
Or – I can do peritoneal and have my very own recycler machine humming away at night, connected to me through my new little belly button appendage, and when I need to get up at 3:00 in the morning because I can’t sleep, I go through the 30 minute process of closing off my tube, shutting down the machine – all while sleeping romantically cuddled next to Mechanic Man.
Ugh. And all the while I am thinking – ok, now, this should be like brushing your teeth – just a mundane, routine, dull ritual. But – this is the kicker – this will be my way of life for the rest of my life or until I get a transplant.
I’m leaning toward the peritoneal dialysis. Less burden on Mechanic Man, more ME time. So, what do you think?
By the way – I have A negative blood type. Just saying.
.
or
Kidneys R Us
or
Kidneys Rule
You didn’t ask but after talking with friends, I thought it would be a good idea to give you a basic easy-to-understand synopsis of kidney dialysis. First, though, you should probably prop your head up on something in case you fall asleep or go unconscious or into a coma or something. Prepare to snooze.
I am having to research my plight and decide which is the lessor of several evils.
Did you know that people whose kidneys are failing are experiencing the medical term: End Stage Renal Disease (ESRD). Sounds innocuous enough, doesn’t it. But wait! It says “End Stage” as in - death is knocking at your door, big guy. When your kidneys fail, you need to find some alternative to just sitting back and letting nature take its course – because nature is done with you. Those two little organs (well, in my case not so little) have powers you wouldn’t imagine. Like creating red blood cells. Boosting your energy. Filtering waste. I’m very close to having no kidney function at all. I lay awake wondering what will be the tell tale sign that THIS is it; this is the big one; this is all she wrote, kid. Will I gradually just stop peeing??? Will my guts suddenly clench like a thirsty man in the middle of a desert with absolutely not a drop of water anywhere? Will I just not wake up? What??
So – I am researching the different methods of dialysis. First – you should know that there are two types of dialysis – hemodialysis and peritoneal dialysis. One is through your blood – one is in your peritoneal cavity between the membrane surrounding all your organs and your skin.
There are pluses and minuses on both. So, here’s my take. With hemodialysis, you have to have a fistula prepared, which is a surgically constructed vein utilizing your own vein and it is permanent – usually in your arm. In my Dad’s case, his fistula always needed “roto rootering” or it was relocated entirely to a new site – and there are limited sites. Dad ran out of sites. Also, with hemodialysis, you get two needle sticks every time you have dialysis, three days a week. Plus, getting a shot of epogyn for your anemia (which requires a monthly blood draw). It’s just poke, poke, poke, poke.
Ummmm, that looked like a whole lot of negatives. The plus, if there is one, is that you don’t do a thing. You just go to the dialysis center and nurses and techs will be happy to poke you two or three times; ignore you if the alarms go off until your neighboring dialysis victims start really complaining; stick you AGAIN with something to deaden the pain, but not quite, and then stick you for the start of dialysis, and then for good measure repeat the whole process when you end dialysis.
With peritoneal dialysis – you have to have a tube surgically inserted in your belly, with two little bumps that act as stops so the tube will stay in place – and eventually scar tissue will form around the little bumps and seal the deal. Viola! Your newest body appendage. Yippee. The plus with peritoneal dialysis is that you can do it at home. You can take it with you and do it on trips. At work. Anywhere your little heart desires. The drawback is that you feel pregnant. You have all this dialycate (the solution used to filter your blood) and your peritoneal cavity stores it until you replace it. You feel “stretched.” The documentation also warns that you will have to deal with your “feelings about your body image.” You will look FAT. I’m short enough that I will look very round. Just give me a shove in the general direction, and I’ll just roll there. I already have issues with my body image. Sheesh. And while I’m filling up with dialycate, my kidneys are casually increasing in size all on their own. It’s like girl friends pointed out to me – wouldn’t it be nice if your kidneys were located in your boobs? Mechanic Man would probably think he died and went to Heaven.
So – either of these is a difficult choice to make. One, hemo, offers me every other day off. But at the cost of hours every other day on dialysis, plus working a full time job (because kidney patients are not considered disabled), so I go to work at 8:00, get off at 5:00, go to dialysis at 5:30, leave at 9:00 and somewhere in there I will have a normal life with Mechanic Man. Right?
Or – I can do peritoneal and have my very own recycler machine humming away at night, connected to me through my new little belly button appendage, and when I need to get up at 3:00 in the morning because I can’t sleep, I go through the 30 minute process of closing off my tube, shutting down the machine – all while sleeping romantically cuddled next to Mechanic Man.
Ugh. And all the while I am thinking – ok, now, this should be like brushing your teeth – just a mundane, routine, dull ritual. But – this is the kicker – this will be my way of life for the rest of my life or until I get a transplant.
I’m leaning toward the peritoneal dialysis. Less burden on Mechanic Man, more ME time. So, what do you think?
By the way – I have A negative blood type. Just saying.
.
6.03.2009
Kidney Update #2
Here's my sad soppy saga. I am starting to go through tests to get on a transplant list. (no cancer wanted - if I have cancer, they'll just throw me away). Anyway - went to see the kidney doctor today (saw the dentist last Thursday and this last Monday for what can only be described as roto rooter of the gums, with anesthesia and nitrous). So I'm already kind of whacked out of shape.
Then the doc tells me that my kidneys are functioning at ten percent of normal. Ten Percent. yeesh. I feel ok, really. The kidneys are shutting down but not telling the rest of my body - so my brain thinks I'm doing just fine thank you very much. But one of the things the kidneys do is "talk" to the bone marrow who talks to the blood who toils and turns out red blood cells - and the kidneys aren't talking, so I'm really low on blood. I'm getting what's called an EPO shot, once a week for three weeks and then once a month - if that doesn't work - it's a blood transfusion.
Are your eyes falling out of your head yet?
So - he said to watch for these symptoms: fatigue, feeling out of breath crossing the street, going up the stairs; itching skin; nausea; dry heaves; and anorexia (I wish). Well, as he starts clicking these things off, I'm still insisting I "feel FINE" but it's flashing through my mind - last night's itchy leg episode that about drove me insane; yesterday morning I didn't even want to brush my teeth because my gums still hurt and just the thought was making me feel like throwing up - and lately I don't just throw up - I do it repeatedly several times and then go into the dry heaves for several bouts; and I've started taking the elevator to get from the 15th floor to the 16th floor; and last night I gave Mechanic Man half of my hamburger - and no fries. I'm thinking, Jeanie you are so out of shape and need to diet and exercise. But Doc said that wasn't my problem. I have kidney disease related anemia. It's my uncommunicative kidneys again. Those silent buggers.
I went to Riverfront Square and then to Rite Aid over lunch. I was panting the entire way and just pooped by the time I got back. And I've noticed this before when I've gone to the Riverfront to get my hair cut - I'd start back and think, o boy, if someone would just carry me, it would be sheer bliss.
I'm beginning to think I'm SICK.
I’m still insisting I feel fine. I’m still trying to think positive thoughts and not dwell on this. I’m still trying to tell myself I’m not in denial. It’s a quandary. If I think about it, I’ll get worse. I’ll get worse if I don’t think about it. If I think positive thoughts, my kidneys just might go completely gonzo on me and turn out their lights because I’ve got my head in the sand. If I think negative thoughts, like, you’re-going-to-be-on-dialysis-for-the-REST-of-your-life (this is a litany I heard my mother sing to Dad for seven years until he finally pulled the plug on himself), then I’ll be on dialysis that much sooner. They’ll never find a donor kidney for me. I’ll have a permanent tube in my stomach or my arm, depending on what type of dialysis. What about sex? Bikini’s? (well, I wouldn’t be caught dead in a bikini – but what IF?) Slinky dresses? The too-sexy-for-my-jeans look?
.
Then the doc tells me that my kidneys are functioning at ten percent of normal. Ten Percent. yeesh. I feel ok, really. The kidneys are shutting down but not telling the rest of my body - so my brain thinks I'm doing just fine thank you very much. But one of the things the kidneys do is "talk" to the bone marrow who talks to the blood who toils and turns out red blood cells - and the kidneys aren't talking, so I'm really low on blood. I'm getting what's called an EPO shot, once a week for three weeks and then once a month - if that doesn't work - it's a blood transfusion.
Are your eyes falling out of your head yet?
So - he said to watch for these symptoms: fatigue, feeling out of breath crossing the street, going up the stairs; itching skin; nausea; dry heaves; and anorexia (I wish). Well, as he starts clicking these things off, I'm still insisting I "feel FINE" but it's flashing through my mind - last night's itchy leg episode that about drove me insane; yesterday morning I didn't even want to brush my teeth because my gums still hurt and just the thought was making me feel like throwing up - and lately I don't just throw up - I do it repeatedly several times and then go into the dry heaves for several bouts; and I've started taking the elevator to get from the 15th floor to the 16th floor; and last night I gave Mechanic Man half of my hamburger - and no fries. I'm thinking, Jeanie you are so out of shape and need to diet and exercise. But Doc said that wasn't my problem. I have kidney disease related anemia. It's my uncommunicative kidneys again. Those silent buggers.
I went to Riverfront Square and then to Rite Aid over lunch. I was panting the entire way and just pooped by the time I got back. And I've noticed this before when I've gone to the Riverfront to get my hair cut - I'd start back and think, o boy, if someone would just carry me, it would be sheer bliss.
I'm beginning to think I'm SICK.
I’m still insisting I feel fine. I’m still trying to think positive thoughts and not dwell on this. I’m still trying to tell myself I’m not in denial. It’s a quandary. If I think about it, I’ll get worse. I’ll get worse if I don’t think about it. If I think positive thoughts, my kidneys just might go completely gonzo on me and turn out their lights because I’ve got my head in the sand. If I think negative thoughts, like, you’re-going-to-be-on-dialysis-for-the-REST-of-your-life (this is a litany I heard my mother sing to Dad for seven years until he finally pulled the plug on himself), then I’ll be on dialysis that much sooner. They’ll never find a donor kidney for me. I’ll have a permanent tube in my stomach or my arm, depending on what type of dialysis. What about sex? Bikini’s? (well, I wouldn’t be caught dead in a bikini – but what IF?) Slinky dresses? The too-sexy-for-my-jeans look?
.
4.17.2009
Health Report #1
Just wanted all of you to know that I am "good" for a while. I am having tests done to start the process of going on a transplant list but my overall health is very good and that will keep me riding the fence for a while – and I pray for a long, long while. As I told a good friend, I am really good at sitting on fences. I should be a politician.
I feel the good vibes and the prayers. Thank you so much! I'll just keep on keeping on, as they say. Our minds are so powerful and our attitude is magic.
.
4.07.2009
101 Things You Never Wanted to Know
Wow! I mentioned my kidney disease on my blog and people came out of the woodwork to comment and to offer support and prayers. I was shocked at the sincere concern of my friends. These are people that I blog with, commiserate with, drink with, and laugh and cry with. I had no idea that my personal ailment would impact other people.
Here are the boring details: Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. For even more boring reading, you can look at http://www.kidney.niddk.nih.gov/kudiseases/pubs/pdf/PKD.pdf. That will put you to sleep in a couple of minutes.
When I was 23, I called my parents to tell them I was pregnant with my first son. I lived in Indiana at the time while my husband was in the Air Force, stationed in Peru, Indiana. Mom informed me that Dad had Polycystic Kidney Disease, otherwise called PKD. I immediately offered one of my kidneys to him. And that's when I found out that PKD is one of the highest hereditary diseases, even above Diabetes, and that I more than likely had it too. I was officially diagnosed when I was 28.
There is no cure. But science has been making great strides over the years since I first found out about myself. Dialysis has gotten better. It used to be so abrasive to your system that you would run out of veins to use, or, like in my Dad's case, the solution can cause peritonitis and aneurisms. It's kind of scary.
Of my three siblings, one brother does not have PKD. My sister had a transplant, where her brother-in-law was the kidney donor. My brother had a transplant with a cadaver kidney. Both are perfect matches and both have been very healthy.
OK, that's the boring stuff. My brother and I have banded together to have a positive attitude on this and not dwell on the negatives. This was difficult to manage with our mother – who, for some reason, went through life with a cloud over her head. Every time we talked to her, it didn't matter about what, she would go into a tirade that I called "101 things you never wanted to know about polycystic kidney disease and wouldn't ask your mother so she's going to tell you anyway."
And I still don't want to know about those 101 things. Al and I decided 30 years ago that we would not dwell in the negative. We have both watched our health; we have both kept a sense of humor about our bodies and life. You just can't bog yourself down with heavy, negative thoughts. I remember calling Mom and in the conversation I wanted to speak to Dad but he was lying down, not feeling well, and Mom started on the kidney doom tale: "Your Dad is on dialysis six hours a day, three days a week, for the REST of his life and . . . ." I had heard this so many times that I got to the point I could instantly shut it off and all I heard was "bla bla bla bla bla bla bla." If I told her I didn't want to talk about it, she'd accuse me of sticking my head in the sand. My point of being positive was never taken. So, I shrugged my shoulders and turned on the bla bla tape and did something creative – like watered my plants – until she was done and then we could talk about something else entirely, like the Oregon beach. All is good!
Mom passed away three years ago this May. Her attitude finally did her in. One day, April 22, she was diagnosed with lung cancer. Two weeks later she was in a coma and one week later, May 11, she was dead. I strongly believe her negativity finally got her.
So – back to me. I'm not discouraged. This is just a little snafu on my way through this life. I have an "attitude of gratitude" and my cup is always half full and getting fuller.
Many people asked me what they could do for me. Now here comes the real kerfunkle. One of the most difficult things for me to do is ask for help. Argghhh. I'd rather pull one of my own teeth. What can I ask for, anyway? I could hardly go around to all my friends asking for one of their kidneys. Eeeek. Hey, I love ya man, give me one of your kidneys. [hangs head in shame]
What I can say unequivocally is that friendship with you, all of you, is my ultimate grace. You are what keeps me going and keeps my humor up and my spirits up. I figure I have about 20 Very Best Friends Forever. Many I have never met in person. I have my dinner group friends, my Red Hat friends, my legal secretary/paralegal friends around the United States, and I have you, my blog friends. I figure I am just about one of the luckiest people on the planet. I have blogging friends who are intelligent, intellectual, and sharp; who are funny, witty, and gifted; who are professionals – attorneys, writers, medical, and who home school their children.
I blurked for quite a while and got to know people on Huckleberries. Then one of the first people to interact with me was Marmitoastie. I think we're twins! I'm fairly certain we are related in some way. And then I met Cindy and I tell you what – I think we're triplets! Way too much in common. Maybe it's because we all have boys. Maybe it's because we all love firemen. I don't know. But it's been a kick in the pants. Cindy and I met face to face early on and "knew" each other without introduction. We have bonded.
How blessed can I get? I have it all! See – attitude is EVERYTHING! Now it's not all so bad, is it?
.
Here are the boring details: Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. For even more boring reading, you can look at http://www.kidney.niddk.nih.gov/kudiseases/pubs/pdf/PKD.pdf. That will put you to sleep in a couple of minutes.
When I was 23, I called my parents to tell them I was pregnant with my first son. I lived in Indiana at the time while my husband was in the Air Force, stationed in Peru, Indiana. Mom informed me that Dad had Polycystic Kidney Disease, otherwise called PKD. I immediately offered one of my kidneys to him. And that's when I found out that PKD is one of the highest hereditary diseases, even above Diabetes, and that I more than likely had it too. I was officially diagnosed when I was 28.
There is no cure. But science has been making great strides over the years since I first found out about myself. Dialysis has gotten better. It used to be so abrasive to your system that you would run out of veins to use, or, like in my Dad's case, the solution can cause peritonitis and aneurisms. It's kind of scary.
Of my three siblings, one brother does not have PKD. My sister had a transplant, where her brother-in-law was the kidney donor. My brother had a transplant with a cadaver kidney. Both are perfect matches and both have been very healthy.
OK, that's the boring stuff. My brother and I have banded together to have a positive attitude on this and not dwell on the negatives. This was difficult to manage with our mother – who, for some reason, went through life with a cloud over her head. Every time we talked to her, it didn't matter about what, she would go into a tirade that I called "101 things you never wanted to know about polycystic kidney disease and wouldn't ask your mother so she's going to tell you anyway."
And I still don't want to know about those 101 things. Al and I decided 30 years ago that we would not dwell in the negative. We have both watched our health; we have both kept a sense of humor about our bodies and life. You just can't bog yourself down with heavy, negative thoughts. I remember calling Mom and in the conversation I wanted to speak to Dad but he was lying down, not feeling well, and Mom started on the kidney doom tale: "Your Dad is on dialysis six hours a day, three days a week, for the REST of his life and . . . ." I had heard this so many times that I got to the point I could instantly shut it off and all I heard was "bla bla bla bla bla bla bla." If I told her I didn't want to talk about it, she'd accuse me of sticking my head in the sand. My point of being positive was never taken. So, I shrugged my shoulders and turned on the bla bla tape and did something creative – like watered my plants – until she was done and then we could talk about something else entirely, like the Oregon beach. All is good!
Mom passed away three years ago this May. Her attitude finally did her in. One day, April 22, she was diagnosed with lung cancer. Two weeks later she was in a coma and one week later, May 11, she was dead. I strongly believe her negativity finally got her.
So – back to me. I'm not discouraged. This is just a little snafu on my way through this life. I have an "attitude of gratitude" and my cup is always half full and getting fuller.
Many people asked me what they could do for me. Now here comes the real kerfunkle. One of the most difficult things for me to do is ask for help. Argghhh. I'd rather pull one of my own teeth. What can I ask for, anyway? I could hardly go around to all my friends asking for one of their kidneys. Eeeek. Hey, I love ya man, give me one of your kidneys. [hangs head in shame]
What I can say unequivocally is that friendship with you, all of you, is my ultimate grace. You are what keeps me going and keeps my humor up and my spirits up. I figure I have about 20 Very Best Friends Forever. Many I have never met in person. I have my dinner group friends, my Red Hat friends, my legal secretary/paralegal friends around the United States, and I have you, my blog friends. I figure I am just about one of the luckiest people on the planet. I have blogging friends who are intelligent, intellectual, and sharp; who are funny, witty, and gifted; who are professionals – attorneys, writers, medical, and who home school their children.
I blurked for quite a while and got to know people on Huckleberries. Then one of the first people to interact with me was Marmitoastie. I think we're twins! I'm fairly certain we are related in some way. And then I met Cindy and I tell you what – I think we're triplets! Way too much in common. Maybe it's because we all have boys. Maybe it's because we all love firemen. I don't know. But it's been a kick in the pants. Cindy and I met face to face early on and "knew" each other without introduction. We have bonded.
How blessed can I get? I have it all! See – attitude is EVERYTHING! Now it's not all so bad, is it?
.
9.02.2008
Attack of the Killer Kidney
I've been KO'd by a little kidney. Well, not so little – probably huge. Just what you wanted to read about over lunch: my bulging, growing, cyst-filling kidney(s).
I have Polycystic Kidney Disease, which is the most common inherited disease in the world (beating out diabetes!) and the least known about.
So Friday I woke up feeling like one of those commercials for Nyquil – tired, achy all over, sneezing, fever, backache, whopping headache, and nausea. I know you empathize with me.
I went to work anyway and then had to turn right back around and head for urgent care. Three hours waiting, I kid you not, and I headed to the pharmacy for antibiotics, pain killers, packs of Jell-O, and home and straight to bed. I mean, my significant other had wind burns as I passed him in his comfy easy chair, NOT working. (I'm the breadwinner in this family.) Seriously, I was hoping the doc would say, "You have a really bad and very contagious cold – go home, go to bed, stay off your feet." But, nooooooo.
The last time I had a kidney infection, May 22, 2002 (you don't forget these things), I had a CAT scan. The assistant fussed around with me to get me just right and then started this thing that can only be described as a metal cylinder that looks like the back end of a jet – and it will confirm this vision once the engine starts and I mean – you think you are going to take off into space. It's a huge rumbling spinning sound like a whole bunch of loose ball bearings are charging around and around inside that tube.
I was laying there thinking "be an appendix attack. be an appendix attack. be an appendix attack." But when the assistant came out, her eyes were huge, huge pools in saucers; "Wow, you have really HUGE kidneys." They are NOT supposed to tell the patient that. The radiologist himself is supposed to tell you that. Not the 19-year-old, gum chewing, zit-faced KID.
Now here I am again, waiting for the diagnosis of (cross your fingers), a COLD.
Nope. I had a kidney infection.
See, I hate the word kidney infection because it means that my kidneys are getting attacked again and they just don't need any more pressure from the outside world. They are deteriorating just fine all by themselves. This just adds salt to the wound – oh, but I can't have salt. Just in time for the three-day Labor Day weekend. . . . . . . . . . woohoo.
Now, I'd rather give birth than have a kidney infection. (I've heard the same about kidney stones, too.)
The thing is, you see, I pride myself on my happy attitude. I'm up! I'm positive! I'm cheerful! I'm always going forward! And here I am flat on my back with not even enough energy to flick the power button on the computer, let alone SIT there and try to think of something to write and my fingers and my brain are NOT communicating with each other at all. I'd just as easily hit the delete key as the save key and not know the difference. Maybe I'll have an already-made cup of Jell-O.
It's not that I like to dwell on my disease. We all have some cross to bear. I just don't like to go on and on about it. I like to think that my attitude, my positive thinking, my happy thoughts will slow the decline. Most people with PKD end up on dialysis or have a transplant. I should be very fortunate (and lucky) to just go along as I am now with the occasional kidney infection and sometimes the [very painful] explosion of small blood-filled cysts bursting inside my kidney. I tell myself that as long as I am keeping a good look on things, keeping a positive attitude, then these nasty little interruptions too shall pass into oblivion and I can go along like everyone else.
Still, when it knocks you out, you lie there in bed thinking, gee, could it happen to me? Will I have to go on dialysis? Will I have to have a transplant?
Well, I'm back at work – still climbing up the wall of feeling good. And back to my positive attitude. I will not be ruled by my body today.
.
I have Polycystic Kidney Disease, which is the most common inherited disease in the world (beating out diabetes!) and the least known about.
So Friday I woke up feeling like one of those commercials for Nyquil – tired, achy all over, sneezing, fever, backache, whopping headache, and nausea. I know you empathize with me.
I went to work anyway and then had to turn right back around and head for urgent care. Three hours waiting, I kid you not, and I headed to the pharmacy for antibiotics, pain killers, packs of Jell-O, and home and straight to bed. I mean, my significant other had wind burns as I passed him in his comfy easy chair, NOT working. (I'm the breadwinner in this family.) Seriously, I was hoping the doc would say, "You have a really bad and very contagious cold – go home, go to bed, stay off your feet." But, nooooooo.
The last time I had a kidney infection, May 22, 2002 (you don't forget these things), I had a CAT scan. The assistant fussed around with me to get me just right and then started this thing that can only be described as a metal cylinder that looks like the back end of a jet – and it will confirm this vision once the engine starts and I mean – you think you are going to take off into space. It's a huge rumbling spinning sound like a whole bunch of loose ball bearings are charging around and around inside that tube.
I was laying there thinking "be an appendix attack. be an appendix attack. be an appendix attack." But when the assistant came out, her eyes were huge, huge pools in saucers; "Wow, you have really HUGE kidneys." They are NOT supposed to tell the patient that. The radiologist himself is supposed to tell you that. Not the 19-year-old, gum chewing, zit-faced KID.
Now here I am again, waiting for the diagnosis of (cross your fingers), a COLD.
Nope. I had a kidney infection.
See, I hate the word kidney infection because it means that my kidneys are getting attacked again and they just don't need any more pressure from the outside world. They are deteriorating just fine all by themselves. This just adds salt to the wound – oh, but I can't have salt. Just in time for the three-day Labor Day weekend. . . . . . . . . . woohoo.
Now, I'd rather give birth than have a kidney infection. (I've heard the same about kidney stones, too.)
The thing is, you see, I pride myself on my happy attitude. I'm up! I'm positive! I'm cheerful! I'm always going forward! And here I am flat on my back with not even enough energy to flick the power button on the computer, let alone SIT there and try to think of something to write and my fingers and my brain are NOT communicating with each other at all. I'd just as easily hit the delete key as the save key and not know the difference. Maybe I'll have an already-made cup of Jell-O.
It's not that I like to dwell on my disease. We all have some cross to bear. I just don't like to go on and on about it. I like to think that my attitude, my positive thinking, my happy thoughts will slow the decline. Most people with PKD end up on dialysis or have a transplant. I should be very fortunate (and lucky) to just go along as I am now with the occasional kidney infection and sometimes the [very painful] explosion of small blood-filled cysts bursting inside my kidney. I tell myself that as long as I am keeping a good look on things, keeping a positive attitude, then these nasty little interruptions too shall pass into oblivion and I can go along like everyone else.
Still, when it knocks you out, you lie there in bed thinking, gee, could it happen to me? Will I have to go on dialysis? Will I have to have a transplant?
Well, I'm back at work – still climbing up the wall of feeling good. And back to my positive attitude. I will not be ruled by my body today.
.
3.05.2008
Polycystic Kidney Disease
Polycystic Kidney Disease (PKD) is actually very common but hardly anyone knows about it. It is more common than diabetes. It affects 500,000 people in the United States and is a genetic disease that will affect whole families for generations. My Dad and his brother and sister all died from it. Their mother died from it. I have a brother and sister, as well as me, diagnosed with PKD. Both my siblings have had transplants, my sister from a live donor, my brother from a cadaver. Both have been very successful, particularly for my brother.
I urge you to consider being an organ donor. Having a transplant is a life saver!
I urge you to consider being an organ donor. Having a transplant is a life saver!
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