Ever since I first met my surgeon and informed her blithely "I'd also like to have my native kidneys taken out," we seem to have been on either side of a line in the sand, protocol-wise.
I'd already revealed myself as a nephrectomy advocate, so she had to take on the role of dissuading me from this course. If only 1 out of 20 patients has a nephrectomy -- and my pain hadn't begun yet -- it was unlikely she'd be doing one on me.
Thus, through poking and prodding my abdomen (which, from ribs down to hipbones at any longitude bounces right back like a couple of leather bags full of water) she determined my kidneys are only "moderately large," and has said several times "Your kidneys really aren't that large. I don't know why they'd be causing you all this trouble."
With the onset of pain and the MRI results, she agreed to remove them, but still didn't sound particularly convinced.
However, at my pre-op meeting, Randy and I were briefed by a specialist we'd never met before. My surgeon runs late on a regular basis, between operating, teaching, doing research, meeting with committees that do everything from hiring to reviewing transplant candidates, and last but not least keeping clinical appointments.
The new guy, with a pronouced Georgia accent, was catching up with my history on the computer, when he saw I had PKD. "Hey! Did you have any imaging done? I love looking at polycystic kidneys!"
I admitted I had an MRI somewhere, and he found it. "Wow! These are huge!" he enthused.
Startled by this new viewpoint but still tentative, Randy offered that we referred to them as "the twins."
"Oh, these are bigger than babies," the doc said. "I've sired babies, and these are bigger than that."
Not only was the horsy reference delightful, the confirmation of what I'd always thought was encouraging.
We then delved further into his Southern past. "You know rugby balls?" he asked. (We both nodded, even though we have only a sketchy idea of what a rugby game looks like, much less the ball.) "Well, these are the size of rugby balls," he said.
Looking up "regulation rugby ball" and converting centimeters to inches yields some startling statistics. All I can say is I'm ready for them to bounce on out of here.
Monday, September 20, 2010
Thursday, September 2, 2010
The most unwelcome question
We were on vacation at my parents' cottage -- "heaven," as people who've been there call it -- and were escaping from a noonday June sun on the beach by driving to the nearest town to shop.
The cottage is a place where outside worries just don't penetrate. We have no daily papers and no TV. One summer, we noticed the neighbor's flag was at half-staff one morning, and thought, "Oh, that's too bad -- the World War II veteran who lives there must have died." But when we went into town to post some mail, the Post Office flag was at half-staff, too. When I asked the woman behind the counter why, she looked at me like I'd fallen off Mars and snapped "President Reagan died!"
So, with only trivial issues on the agenda, such as "Will it be sunny again tomorrow?" and "What should we have for dinner tonight?" I was miles away from thinking about my health problems. I was completely unprepared when a woman smiled sympathetically at me and said "I can't imagine what it would be like to be pregnant in this heat."
She seemed kind, and I had been in a sunny mood until then, so I just smiled back and said "I'm not pregnant," and let the shock and the oh-I'm-so-sorrys fall where they might.
Thankfully, back home in Minnesota, I'm generally surrounded by people who, as Garrison Keillor has portrayed them, are almost too cautious to pry into how you take your coffee. That's just as I like it in any case -- I just don't think whether or not I have a passenger on board is a passing stranger's business.
I can certainly appreciate the fact I don't look "normal". Out of curiosity, I recently tried to calculate my pants size on a store's Web site. Thighs: size 10 or 12. Hips: size 10 or 12. Waist: size 24. Even at that, I had to do some extrapolation to arrive at the waist size -- it was literally off the chart.
So, yes, I am bizarrely shaped, suggesting pregnancy, a serious beer addiction or, of course, being one of the roughly 300,000 women in the U.S. with PKD.
I've run into such well-meaning strangers a few times before, as have others. One woman told me she had to start wearing maternity clothes at age 48. And, at that, her primary physician's nurse exclaimed excitedly on seeing her, "Oh! How many months are you pregnant?"
I'm sorry, really? At 48? You're holding her medical chart with "PKD" all over it in your hand?
For me, it's embarrassing, humiliating and maddening in varied proportions. My first thoughts are of snapping back in a way that would prevent this person from asking that question ever again.
But I don't. Counting blessings again, I'm fortunate in not wanting to have children. There are women out there -- apparently in less-introverted regions -- who have PKD, huge kidneys and risk pregnancy reminiscences and belly rubs every time they leave the house. "I started getting an enlarged abdomen about 5 or 6 years ago when I was in the throes of infertility treatments," one wrote on a forum. "Imagine being infertile and desperately trying to have a baby and being asked all the time "when are you due?" I remember replying 'Never! I will never be due because I can't have kids!' and bursting into tears."
Are there many people left out there besides older, nosy relatives who haven't heard "Don't ask a woman if she's pregnant unless you actually see another human being coming out of her"? (May I add: in that rare case, you might as well save your breath for calling 911.)
My husband says it's about people wanting to share the experience by proxy. Whatever the motivation, these thrill-seekers should be warned that there are a few of us ringers out here who, depending on the day, may share more than the experience you expect with you.
The cottage is a place where outside worries just don't penetrate. We have no daily papers and no TV. One summer, we noticed the neighbor's flag was at half-staff one morning, and thought, "Oh, that's too bad -- the World War II veteran who lives there must have died." But when we went into town to post some mail, the Post Office flag was at half-staff, too. When I asked the woman behind the counter why, she looked at me like I'd fallen off Mars and snapped "President Reagan died!"
So, with only trivial issues on the agenda, such as "Will it be sunny again tomorrow?" and "What should we have for dinner tonight?" I was miles away from thinking about my health problems. I was completely unprepared when a woman smiled sympathetically at me and said "I can't imagine what it would be like to be pregnant in this heat."
She seemed kind, and I had been in a sunny mood until then, so I just smiled back and said "I'm not pregnant," and let the shock and the oh-I'm-so-sorrys fall where they might.
Thankfully, back home in Minnesota, I'm generally surrounded by people who, as Garrison Keillor has portrayed them, are almost too cautious to pry into how you take your coffee. That's just as I like it in any case -- I just don't think whether or not I have a passenger on board is a passing stranger's business.
I can certainly appreciate the fact I don't look "normal". Out of curiosity, I recently tried to calculate my pants size on a store's Web site. Thighs: size 10 or 12. Hips: size 10 or 12. Waist: size 24. Even at that, I had to do some extrapolation to arrive at the waist size -- it was literally off the chart.
So, yes, I am bizarrely shaped, suggesting pregnancy, a serious beer addiction or, of course, being one of the roughly 300,000 women in the U.S. with PKD.
I've run into such well-meaning strangers a few times before, as have others. One woman told me she had to start wearing maternity clothes at age 48. And, at that, her primary physician's nurse exclaimed excitedly on seeing her, "Oh! How many months are you pregnant?"
I'm sorry, really? At 48? You're holding her medical chart with "PKD" all over it in your hand?
For me, it's embarrassing, humiliating and maddening in varied proportions. My first thoughts are of snapping back in a way that would prevent this person from asking that question ever again.
But I don't. Counting blessings again, I'm fortunate in not wanting to have children. There are women out there -- apparently in less-introverted regions -- who have PKD, huge kidneys and risk pregnancy reminiscences and belly rubs every time they leave the house. "I started getting an enlarged abdomen about 5 or 6 years ago when I was in the throes of infertility treatments," one wrote on a forum. "Imagine being infertile and desperately trying to have a baby and being asked all the time "when are you due?" I remember replying 'Never! I will never be due because I can't have kids!' and bursting into tears."
Are there many people left out there besides older, nosy relatives who haven't heard "Don't ask a woman if she's pregnant unless you actually see another human being coming out of her"? (May I add: in that rare case, you might as well save your breath for calling 911.)
My husband says it's about people wanting to share the experience by proxy. Whatever the motivation, these thrill-seekers should be warned that there are a few of us ringers out here who, depending on the day, may share more than the experience you expect with you.
Saturday, August 28, 2010
They're real, and they're SPECTACULAR
At right, my MRI just below my waist. The white disc in the center is my spine, where the main cord is splitting into the separate nerves of the equine caudix (In Latin, literally, 'horsetail'.) The dark disc above it is a spinal disc. Below the vertebra is muscle (looks like meat). And all the rest is kidneys, with all those cysts showing. Consider what formed each cyst was meant to be a tiny tubule used to filter fluids. . . it's a truly bizarre genetic deviation. Those who recall me as a 120-pound collegiate will be thinking "Huh?" Back then I boasted the figure of your average 13-year-old Little League (OK, maybe of a 15-year-old ringer from Central America.)
That's what often happens with polycystic kidneys -- they keep growing cysts on top of cysts despite the fact none of it is usable tissue.
So, the average adult's kidney is 4-5 inches long, 2-3 inches wide and an inch and a half thick. (Think an average computer mouse.)
According to CT scans and MRIs, mine are -- each -- nearly a foot long and 5-6 inches across in any dimension. They extend from a point behind my lowest rib way down into my pelvis. They inhibit my breathing when I'm doing anything that involves bending, making everything from landscaping to dog training to just tidying up the house doubly exhausting. They bulge into my stomach, and unless I'm very careful about what I eat when, I end up throwing up doing that aforementioned landscaping. There's just not room in there for, say, a granola bar, half a can of pop and those lousy kidneys.
However, I faced an equally-determined "let's rule out everything else" attitude from my surgeon -- which is perfectly reasonable, since she'd be taking my life in her hands with a huge open incision in my abdomen.
Although some diseased kidneys can be removed by laparoscopy, through tiny holes, mine would have to come out in a procedure something like the longest 1950s C-section you've ever seen. In fact, it would be such a big deal they'd schedule a couple of "While we're in there" removals along with it -- gall bladder and appendix -- just to take advantage of the opening. Oh, and they might have to take out my spleen as well -- the top of the kidney may extend so far up it compromises it.
Basically, my impression is I'd be gutted like a fish, and after removing everything extraneous, they'd put back in the stuff that wasn't slated to go.
Finally, I arrived for a visit on a day when the pain was particularly bad. She walked into the exam room to find me in tears, standing next to the examining table with my left leg up on it, bent at the knee. It always felt like if I could get more "room" in my back I'd have less flank pain, so I spent a certain amount of my waking hours either with a knee pulled up to my chest, or, if I were in a store or talking to someone while standing at work, with one knee held up like a particularly clumsy stork.
Thank heavens Randy was at the consultation that followed; his near-master's degree in communication helped with phrases like "I think what Holly is trying to say is" and "I think what the doctor is concerned about is" which helped us lurch to an agreeable conclusion. I got the first fragment of hope I'd seen in this effort as she left the office and said over her shoulder, "I just have to make sure it's the kidneys that are causing you all the trouble. I love to do surgery; if that were the only consideration I'd have you in tomorrow."
You better believe I'd have showed up "tomorrow" if I could have!
The surgeon set up an appointment for an orthopedic surgeon to look at my spine as a last-ditch effort to make sure that wasn't the problem. I was perfectly frank with him about why I was there and what I thought was the problem.
"Well, let's look at your MRI results," he said. "I haven't seen them yet, so we'll be seeing them for the first time together."
"Well, I'm no kidney doctor, but I can tell there's something really wrong with your kidneys," he said. "As far as I can see you have as healthy a spine as any 42-year-old. I think your problem is these --" he paused, trying to think of a tactful way to phrase it, then gave up "-- these gigantic kidneys."
So there we were, thank goodness. A ticket I could cash in to get away from Vicodinland. Six months after transplant -- say, in October or November -- as long as I'm healing normally, I should be able to have these burdens out.
It took such an emotional struggle to get to this point, during which my pre-transplant coordinator would write me things like "Your kidneys are your friends." Nope; they're unwanted, messy, painful squatters and I'll be glad to kick them out at the soonest opportunity. I feel sorry for them, having tried to do their jobs for so long with such difficulty, but it's an unspeakable relief to have them on the way out.
Friday, June 4, 2010
Pain-free Friday
Today was the first day I didn't have any muscular pain under my incision! Sitting down, standing up -- everything was just fine! Just about the five-week mark exactly.
I'd begun to worry -- after all, I'd done things like lift a 40-pound dog onto a grooming table at about the 2-week mark. And Cheryl had said recently she'd been pain-free for quite some time.
But on Memorial Day, she mowed her lawn and said whoops-- pain! So maybe it has to do with exertion.
Still not going to sit around.
Holly
I'd begun to worry -- after all, I'd done things like lift a 40-pound dog onto a grooming table at about the 2-week mark. And Cheryl had said recently she'd been pain-free for quite some time.
But on Memorial Day, she mowed her lawn and said whoops-- pain! So maybe it has to do with exertion.
Still not going to sit around.
Holly
Thursday, June 3, 2010
It's a med, med, med, med world
I realize I've referred many times to the immunosuppressants and other medications I'm on, but haven't detailed them.
Here's the rundown of what I was sent home with, with quantities in numbers of pills, not milligrams:
Morning
I've since been taken off the antiviral, and was thankful to leave joint pain behind.
The most challenging side effect has been the inability to sleep -- thanks mainly to the immunosuppressants. I'm talking lying awake, tossing and turning, until 5 in the morning. I finally had to ask for a sleeping pill to be prescribed. Recovery just wasn't going to take place otherwise.
I've had several of the other side effects -- such as anything solid I eat going right through me. But the folks at the U don't want to cut down on anything else just yet, and I'm not complaining.
Ten or 20 years ago, I'd have been put on Prednisone, with its attendant, nearly-inescapable weight gain. My father remembers a young guy in his cohort who came in looking like a bodybuilder but after a year with his transplant was well over 300 pounds. Prednisone deposits fat in your face, in your belly, on the back of your neck and shoulders, and as an even more enjoyable side effect, "increases appetite."
My father's experience with it is also that it thins skin -- to the point that his was like tissue paper for years, and the lightest brush of the back of his hand against a branch or table edge would peel back inches of skin, leaving him bleeding profusely and opening another site for infection. It sapped him of his muscle mass, and he's torn both biceps from their moorings during those Prednisone years.
He's since been taken off it -- some combination of being elderly and having his transplant for so long may have made it easier to suppress his immune system without it -- but he still carries long-term effects.
So hearing I wouldn't be put on Prednisone was such a relief to me. The rest of the stuff I can live with.
Here's the rundown of what I was sent home with, with quantities in numbers of pills, not milligrams:
Morning
- Immunosuppressant 1: 4 tablets
- Immunosuppressant 2: 3 tablets
- Anti-bacterial: 1 tablet
- Anti-viral: 1 tablet
- Blood-pressure control: 1 tablet
- Calcium: 1 tablet
- Pro-digestive (to help keep pills from eating up my stomach): 1 tablet
- Troche to keep from getting thrush from antibacterial: 1 tablet
- Immunosuppressant 1: 4 tablets
- Immunosuppressant 2: 3 tablets
- Cholesterol control: 1 tablet
- Troche: 1 tablet
- Immunosuppressant 1: tremor, constipation, diarrhea, headache, anxiety, trouble
- sleeping, nausea
- Immunosuppressant 2: joint pain, constipation, diarrhea, headache, anxiety,
- trouble sleeping, nausea
- Antibacterial: diarrhea, nausea
- Antiviral: constipation, joint pain, diarrhea, headache, trouble sleeping, nausea
- Blood-pressure control: swelling, dizziness, palpitations, headache, nausea
- Cholesterol control: abdominal pain, diarrhea, indigestion, general weakness
- Pro-digestive: constipation, diarrhea, rash, headache, nausea
I've since been taken off the antiviral, and was thankful to leave joint pain behind.
The most challenging side effect has been the inability to sleep -- thanks mainly to the immunosuppressants. I'm talking lying awake, tossing and turning, until 5 in the morning. I finally had to ask for a sleeping pill to be prescribed. Recovery just wasn't going to take place otherwise.
I've had several of the other side effects -- such as anything solid I eat going right through me. But the folks at the U don't want to cut down on anything else just yet, and I'm not complaining.
Ten or 20 years ago, I'd have been put on Prednisone, with its attendant, nearly-inescapable weight gain. My father remembers a young guy in his cohort who came in looking like a bodybuilder but after a year with his transplant was well over 300 pounds. Prednisone deposits fat in your face, in your belly, on the back of your neck and shoulders, and as an even more enjoyable side effect, "increases appetite."
My father's experience with it is also that it thins skin -- to the point that his was like tissue paper for years, and the lightest brush of the back of his hand against a branch or table edge would peel back inches of skin, leaving him bleeding profusely and opening another site for infection. It sapped him of his muscle mass, and he's torn both biceps from their moorings during those Prednisone years.
He's since been taken off it -- some combination of being elderly and having his transplant for so long may have made it easier to suppress his immune system without it -- but he still carries long-term effects.
So hearing I wouldn't be put on Prednisone was such a relief to me. The rest of the stuff I can live with.
Sunday, May 30, 2010
Recent Posts
It looks like there has been little or no activity on the blog of late, that is because Holly has been posting earlier observations. If you've been reading all along you may find that there are new posts that you may now be missing.
Also the new normal is becoming established. As the current drama changes from medical stories to the more mundane stories of dogs and gardening Holly is making sure that she is sharing more of her earlier experience. Going forward we will always have more contact with medical professionals and pharmaceuticals than we have in the past which is part of the new normal. Normal of course is the state of things happening as expected. Normal even a new normal is a good place to be.
---Randy
Also the new normal is becoming established. As the current drama changes from medical stories to the more mundane stories of dogs and gardening Holly is making sure that she is sharing more of her earlier experience. Going forward we will always have more contact with medical professionals and pharmaceuticals than we have in the past which is part of the new normal. Normal of course is the state of things happening as expected. Normal even a new normal is a good place to be.
---Randy
Saturday, May 15, 2010
Back in business
After a quick visit last Thursday, I'm back at work, thank goodness.
This is a place where I've worked with nearly 100 bright, funny, talented people coming in and out of the Editorial department alone.
A place where a receptionist and a typist refer to themselves as my "moms away from Mom."
A place that feels like a second home and a second family.
A place that, oddly enough for a business where you work with the news and constant change, has been an island of permanence and sanity for me during the toughest times.
People there have sent cards, e-mails and prayers -- even the war veteran who ever since returning "doesn't pray much anymore" said he'd make an exception for me.
Is it the slings and arrows of suburban politicians that bind us together? Is it the fact we'll assuredly "never get rich"?
Whatever it is, it feels so good to be back among my friends, pursuing creative work and doing something that matters.
This is a place where I've worked with nearly 100 bright, funny, talented people coming in and out of the Editorial department alone.
A place where a receptionist and a typist refer to themselves as my "moms away from Mom."
A place that feels like a second home and a second family.
A place that, oddly enough for a business where you work with the news and constant change, has been an island of permanence and sanity for me during the toughest times.
People there have sent cards, e-mails and prayers -- even the war veteran who ever since returning "doesn't pray much anymore" said he'd make an exception for me.
Is it the slings and arrows of suburban politicians that bind us together? Is it the fact we'll assuredly "never get rich"?
Whatever it is, it feels so good to be back among my friends, pursuing creative work and doing something that matters.
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