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
Friday, June 4, 2010
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.
Thursday, May 13, 2010
Tender loving care
These are my home health aides!For the first week to 10 days, the only comfortable spot where I could sleep at night and nap during the day was the futon on our porch. Fortunately, I had plenty of companionship; Birch the English setter (on the ottoman) and Major the Irish setter (on the rug) are always ready for a nap and often precede us up to bed at night. That's the great thing about setters -- if you feel like running around the house or yard like a nut, they're there. (I once read "Ebullient" in a description of the setter personality!) If you want to take a nap, hey! That was their plan too!
Tammie Calvert, Birch's breeder, assured us, "My dogs were very aware when I came home from surgery that I wasn't feeling well, so they didn't jump on me... It was strange how they knew mom wasn't feeling well." And Major's always been a gentle giant -- even when he was a 99.3 pound youngster!
There's nothing like those dog sleepy waves breaking over you from a hand's pet away. . .
Wednesday, May 12, 2010
Another close one
My transplant coordinator called me yesterday to say she didn't like the look of my creatinine level from my Monday labs. Creatinine, a measure of garbage in the blood, normally ranges from .8 to 1.4. (Prior to transplant, mine was 3.5.) My Monday creatinine was up from levels of 1.2 to 1.24 to a sudden spike of 1.5.
So, I went down to the U for testing Tuesday afternoon and was back again this morning at 7.
One of the things I learned was that between the 18th and 22nd day post-transplant people have their highest risk of rejection. Apparently this is when the body has recovered enough from surgery to realize there's something new in the neighborhood.
So, I went down to the U for testing Tuesday afternoon and was back again this morning at 7.
One of the things I learned was that between the 18th and 22nd day post-transplant people have their highest risk of rejection. Apparently this is when the body has recovered enough from surgery to realize there's something new in the neighborhood.
For me, Monday was the 18th day.
So, after a nearly-sleepless night, there I was signing consent forms for a kidney biopsy. We still didn't have any lab results from my Tuesday visit -- "I think they broke the tube, is what happened," the coordinator said. While we waited for the morning labs to come back, they explained kidney biopsy, the only way to determine whether a kidney's being rejected.
Biopsy is a simple-enough procedure; they inject lidocaine in the skin above the kidneys' location and use ultrasound to make sure it's where it's supposed to be. They make a small incision -- so small it doesn't need stitches later. Then a contraption like a small gun shoots a hollow needle into the kidney, something like taking a core sample from a tree. They may need to make several passes to get enough tissue. And there's always a risk -- of launching bleeding, causing a hematoma, introducing infection. Worst, a cascade of events that doom the kidney.
The nephrology fellow who met me at T-1, followed me through the hospital and switched to "outpatient" the same time I did was shocked to see me back, as was the research coordinator who'd just met me 20 days ago.
So, after a nearly-sleepless night, there I was signing consent forms for a kidney biopsy. We still didn't have any lab results from my Tuesday visit -- "I think they broke the tube, is what happened," the coordinator said. While we waited for the morning labs to come back, they explained kidney biopsy, the only way to determine whether a kidney's being rejected.
Biopsy is a simple-enough procedure; they inject lidocaine in the skin above the kidneys' location and use ultrasound to make sure it's where it's supposed to be. They make a small incision -- so small it doesn't need stitches later. Then a contraption like a small gun shoots a hollow needle into the kidney, something like taking a core sample from a tree. They may need to make several passes to get enough tissue. And there's always a risk -- of launching bleeding, causing a hematoma, introducing infection. Worst, a cascade of events that doom the kidney.
The nephrology fellow who met me at T-1, followed me through the hospital and switched to "outpatient" the same time I did was shocked to see me back, as was the research coordinator who'd just met me 20 days ago.
The waiting wasn't helped by hearing the nephrology fellow talking to the woman in the bed next to me about the infusion she'd be getting after what sounded like days of interventions. "We're gonna give your kidney one last chance," she said.
Finally, the results came back -- thank God, 1.3. "You're off the hook," the nephrologist told me.
We may never know what spiked the creatinine -- damage to the kidney? an infection that was headed off? Everyone apologized for scaring me, but I wouldn't want them any less cautious.
After 3 months, your risk of rejection is lessened. After 6 months it goes down further, and after a year, everyone breathes a sigh of relief. By the time you get to where my dad is, you're probably going to take that kidney with you when you go.
At least my answers are nearby. My father has had to drive himself 6 hours to a kidney biopsy. That's way too long to spend thinking about what could happen.
On Tuesday afternoon, I fell apart quite a bit, but Randy was there to dry my tears. The U's pamphlet on transplantation says simply "You will have complications." I have kept telling myself that to be prepared, but knowing it and having it happen are two different things.
After the last day and a half -- and a lot of sleep to catch up -- it feels good to be off the hook.
Finally, the results came back -- thank God, 1.3. "You're off the hook," the nephrologist told me.
We may never know what spiked the creatinine -- damage to the kidney? an infection that was headed off? Everyone apologized for scaring me, but I wouldn't want them any less cautious.
After 3 months, your risk of rejection is lessened. After 6 months it goes down further, and after a year, everyone breathes a sigh of relief. By the time you get to where my dad is, you're probably going to take that kidney with you when you go.
At least my answers are nearby. My father has had to drive himself 6 hours to a kidney biopsy. That's way too long to spend thinking about what could happen.
On Tuesday afternoon, I fell apart quite a bit, but Randy was there to dry my tears. The U's pamphlet on transplantation says simply "You will have complications." I have kept telling myself that to be prepared, but knowing it and having it happen are two different things.
After the last day and a half -- and a lot of sleep to catch up -- it feels good to be off the hook.
Monday, May 10, 2010
The waitress' complaint
One of my parents' favorite U.P. stories comes from taking a couple to Elias Bros' Big Boy (about the only sit-down restaurant within striking distance of their cottage.)
They had a nice dinner and the waitress had stopped by their booth to ask about dessert when they suddenly realized she was looming over them, leaning heavily on their table with both hands. "I'm sorry," she said, "but my feet are killing me."
This is the "real" that often adds a unexpected, charming touch to interactions north of the bridge.
Well, I know how she feels, because my kidneys are killing me. Not Cheryl's; the two I had originally.
They can't kill me by neglect anymore, but they can and do cause pain. About at the point when I could have gone off painkillers to sleep because the pain from the transplant had lessened, they kicked in on a nightly basis. Thus: painkillers again.
That brings us to the second phase of all this -- the double nephrectomy I'll be getting -- if everything continues to go well -- 6 months from now. Just recovering from this, it's hard to contemplate something that will be, judging by incision length and disruption of my insides -- at least twice as traumatic.
But these monsters aren't giving up. I thought some years ago I might feel sorry for them when the end came -- after all, they did the best they could do for a long, long time, with their shrinking islands of healthy tissue unwittingly working against insurmountable odds. Judging by the U's tests, I was down well under 15 percent function -- stage V, the last stage of ESRD -- by the transplant.
So, once again, forward to another challenge.
They had a nice dinner and the waitress had stopped by their booth to ask about dessert when they suddenly realized she was looming over them, leaning heavily on their table with both hands. "I'm sorry," she said, "but my feet are killing me."
This is the "real" that often adds a unexpected, charming touch to interactions north of the bridge.
Well, I know how she feels, because my kidneys are killing me. Not Cheryl's; the two I had originally.
They can't kill me by neglect anymore, but they can and do cause pain. About at the point when I could have gone off painkillers to sleep because the pain from the transplant had lessened, they kicked in on a nightly basis. Thus: painkillers again.
That brings us to the second phase of all this -- the double nephrectomy I'll be getting -- if everything continues to go well -- 6 months from now. Just recovering from this, it's hard to contemplate something that will be, judging by incision length and disruption of my insides -- at least twice as traumatic.
But these monsters aren't giving up. I thought some years ago I might feel sorry for them when the end came -- after all, they did the best they could do for a long, long time, with their shrinking islands of healthy tissue unwittingly working against insurmountable odds. Judging by the U's tests, I was down well under 15 percent function -- stage V, the last stage of ESRD -- by the transplant.
So, once again, forward to another challenge.
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