Holly had a big day. She is eating soft food mashed potatoes and a bowl of tomato soup which she enjoyed greatly. She got to stand up for a couple minutes with occupational therapist. About 6 O'clock she was moved from the the Intermediate Care Unit which is like a low level ICU. The nurse said she was going to get a wheel chair when I looked up she was sitting on the side of the bed. I said "What are you doing?" She said she was getting ready to go. The nurse brought in to the room and as she was arranging things Holly stood up. So the nurse arranged Holly in the chair and then got her IV tree together and started out of the room. She said it was good that Holly is trying. By the time we got to Holly's new room she was pretty well spent.
Her new kidney is working great and in between her activities like moving rooms and standing Holly is resting and getting stronger. The pain management is still making her foggy at times. It's only the day after and so that's to be expected.
We are grateful for excellent surgical teams and the competent and pleasant care on the 6th floor of the University of Minnesota Medical Center. We have a few more days working with these folk on this procedure.
Holly will be back on the blog soon, but until then I'll keep adding to it.
Randy
Friday, April 23, 2010
Day one after the day
Yesterday was a big waiting day for me. We started waiting at the surgery admissions lounge then after they took Holly away to the operating room I waited with Cheryl's parents Jim and Mary in the big waiting room. I don't know many other people I would rather wait with. They went to be with Cheryl after she got to the recovery room. Then after the surgeon stopped by and let me know Holly was doing well I went and had lunch and then waited almost 3 hours until Holly got to her room. It was listed as a 2 hour wait but I am assured this is an example of "hospital time."
Holly got increasingly lucid as the evening wore on and we wore out too. At that point I went home.
Today she is still improving and waiting to go to her next room. Still hospital time I think. Everybody is very happy with how things are going.
Randy
Holly got increasingly lucid as the evening wore on and we wore out too. At that point I went home.
Today she is still improving and waiting to go to her next room. Still hospital time I think. Everybody is very happy with how things are going.
Randy
Wednesday, April 21, 2010
Gone to get a kidney
That's what I wrote on the calendar at work for April 22. Amazing that something I thought would happen -- let's see, journalist math -- in the 2020s is happening now. At least I'll have an easy time keeping track of how long I've had the transplant -- a nice round number!
I will have to get used to the worry of being immunosuppressed, where a small infection can get to a big one and "simple" viruses can send me to the hospital. I'll have to get used to a new medication regimen that may make me feel sicker before we reach equilibrium. I'll have to start protecting myself from the sun -- apparently without a 100-percent immune system you're more susceptible to skin cancer, and it's the #1 cancer for transplant patients.
But I won't miss the fatigue -- nobody can get much done with 13 hours of sleep a day. I won't miss the dullness between my ears. After 6 months or so, when they take out my grossly enlarged "native" kidneys, I won't miss the pain and the burden of carrying around what specialists tell me is basically "like carrying twins."
And, best of all, I'm not going to have to go on dialysis.
Is life going to be perfect? No. But is anyone's normal life perfect? Nope! And all I ask is a shot at that kind of -- imperfect -- normal life.
Holly
I will have to get used to the worry of being immunosuppressed, where a small infection can get to a big one and "simple" viruses can send me to the hospital. I'll have to get used to a new medication regimen that may make me feel sicker before we reach equilibrium. I'll have to start protecting myself from the sun -- apparently without a 100-percent immune system you're more susceptible to skin cancer, and it's the #1 cancer for transplant patients.
But I won't miss the fatigue -- nobody can get much done with 13 hours of sleep a day. I won't miss the dullness between my ears. After 6 months or so, when they take out my grossly enlarged "native" kidneys, I won't miss the pain and the burden of carrying around what specialists tell me is basically "like carrying twins."
And, best of all, I'm not going to have to go on dialysis.
Is life going to be perfect? No. But is anyone's normal life perfect? Nope! And all I ask is a shot at that kind of -- imperfect -- normal life.
Holly
Tuesday, April 20, 2010
The trouble with Tribbles
OK, they're not Tribbles, but they are small, cute, and appear to be reproducing at a rapid rate on the Swanson half-acre.One of these things is much like another.
When the snow finally melted I discovered I'd been on quite a buying spree at last September's plant clearances. I have a fondness for junipers and for fall color, and these little guys have great feathery fronds and keep their bright gold color all year long.
The dilemma: I have three of them, all in the front yard in various spots. As you can see, these aren't background plants. One is a neat accent; two look like overkill and three make it clear to the neighbors that someone at our house has a serious problem.
I may even have proudly carried them off from the same garden center week after week, but that's been lost in the mists, as well. I don't remember where I got the first, much less the second and third.
It'll be great to get a new kidney, but I also hope I get my brain back.
Garden centers are stocking up again and I don't need to wake up one day with a fourth Tribble.
Friday, April 16, 2010
Who's Cheryl?
and why has it taken me this long to write about her?
Well, how do you do justice in words to someone who's saving your life? All the surgeons, specialists, knowledge and medication involved in kidney-disease treatments -- none of them can do for me what one accountant with a talent for music can.
I first met Cheryl when we both lived on fourth-floor Bodien as freshmen at Bethel College. We both had an 8 a.m. class Tuesdays and Thursdays that first semester and started going to breakfast together. I still remember the first story she ever told me -- about an 80-year-old guy up in Ely, where her family took a winter vacation each year, who skiied back and forth from his cabin to town to get groceries and mail. My family's big on stories, and so this was an attention-getter for me.
Evenings, you could find me in her room; she'd be working on music notation or accounting while I edited my news assignments. By spring, when we were signing up with a group for a townhouse, everybody else was figuring out who they wanted as a roommate. They'd already decided for us, though. "You and Cheryl will be roommates, of course. We just assumed that." And we were -- for the three years at Bethel and 4 1/2 years afterward, until I married Randy.
We have the same sense of humor -- a delight in quirky personalities and telling anecdotes -- a love for dogs, affection and admiration for our parents and a prediliction for evenings at home with our feet up. You'll see we look somewhat alike too. At Bethel, people asked "Are you two sisters?" constantly. One girl was so insistent about it she started theorizing "Well, if your father had met her mother. . ." I assured her she could stop there.
But, thankfully, Cheryl's not too like me. She's patient, gentle, tolerant and somehow put up with me all those years. When I think of all the blessings I've had from being her friend, I wonder what on earth she's gotten from knowing me -- practice in forbearance?
The only people I told when I found I had kidney disease in 1994 were Randy, my parents, and Cheryl and her parents. Little did I know she'd planned -- since then -- to offer me her kidney when the time came I needed intervention. "I figure I'd miss you a lot more than I'd miss a kidney," she said last March.
I said no at first -- I didn't want her to put herself at risk for me. But after reading the studies and recommendations, it looked to me like the vast majority of donors have no setbacks at all after donating. And, as Cheryl put it "I knew you'd say no at first. I figured I'd just wait until things got really ugly."
Well, thanks to her, they didn't. I realized after living with a new life plan for only a few days that I'd been waiting and watching for disintegration for years. It's not a good place to be. My friend Cheryl saved me from that, and I can't say enough about her.
Brave? Keep in mind this is the person I regularly have to help with ailing birds in her yard and dead mice in traps. And blood? We used to watch "Rescue 911" together -- well, I used to watch it. She got brief glimpses of William Shatner and those placid family scenes with the foreboding soundtrack during the times she didn't have her hands over her eyes.
For her to do this for me, I'll say she's brave.
Did you know the Bible mentions kidneys? God is said to know a person by their kidneys.
With one of Cheryl's, I'll consider myself that much further ahead.
Tuesday, March 30, 2010
That was close
What we've gone through in the last 36 hours. . .
Well, a brief of what's been going on for the past month -- my mother had spine surgery March 1 in Michigan, then began battling a series of infections. She was in the hospital a week and has been in a nursing home since then. She seems to get better, then catches something else. I've spent days calling back and forth to my father, to doctors, to social workers, to admissions directors, to nurses and to care coordinators.It seems like my father and I are yanked back and forth between joy and despair on a daily basis.
So, on Monday morning, when I woke up expecting to track down whether my mom had a cold, pneumonia or some other kind of infection, I had a message from my transplant coordinator on the phone. "Your test results show you have donor-reactive antigens, which means your body could react to Cheryl's kidney. . . This happens very rarely, but when it does, we consider it too risky to transplant that person's kidney into you." She said Cheryl and I needed to come in for further blood tests.
I raced down to the U and let the clinic know I was there. Then I went out and stood in the middle of Delaware Street (the only place I can get a cell-phone signal) leaving messages for my mom's nursing home, the care coordinator and pleading with a neighbor to go up and tell my dad to put the phone back on the hook so all these folks could call him. I missed my first call and waited another hour -- a soggy, distracting little island in the waiting room. Nothing inspires more confidence in a clinic than a patient sitting in the waiting room crying, I'm sure.
After a blood draw, I made it back to my car -- despite not having paid any attention to which floor of the ramp I'd parked on -- and got a call from my father as I pulled out. My mother was doing great -- had walked 200 steps in physical therapy that morning -- and, despite a congested-sounding cough, was in good spirits. She was on vapor therapy and antibiotics. What a relief.
However, I was still a wreck and couldn't conceal it from him. I told him what was going on; he knows what that feels like after having been "called" for a cadaver kidney only to find out after further testing it wasn't a match. "That's a real big fall," he said. Next, I had to tell Randy.
And then, of course, I had to start searching medical journals to try to figure out what was going on.. Nobody knows for sure what triggers donor-specific antibodies; one theory is that the number of vaccinations you go through prior to transplant -- a hepatitis B series of 4 shots, pneumococcal vaccine and, in my case, a chickenpox vaccine to try to prevent shingles -- jacks up your immune response. The second leading theory is "We just don't know."
(Unlike what one of Cheryl's friends suggested, Cheryl has NOT been biting me!)
She didn't take the chance to back out, bless her -- she said she'd be willing to do a paired-donation plan, where she'd give her kidney to someone else who needed one, and I'd get a kidney from someone willing to donate one. However, we'd lose the luxury of planning it around our own schedules, especially considering mine also includes having my native kidneys removed 6 months from the TX surgery. The small amount of yard work I've done this spring has proven they're more painful than ever, and I just don't want to wait any longer than I have to to get rid of them.
And then there's Cheryl's wonderful family -- her mom Mary, dad Jim and sister Cindy. Do you know what Mary told me? She's telling her friends to check out "our third daughter's blog about her kidney." She told me, "After all, you're going to have our DNA!" Thinking about letting go of that promise was almost harder than letting go of the transplant.
So, a long night and a hard day on Tuesday, though a lot of support from my co-workers, who knew what was going on since I'd missed the day's work on Monday.
And then -- a miracle. The Monday testing showed though I do have a slight donor-specific antibody response, it's not enough to call off the transplant. It's all in numbers -- mine range from 600 to 900, and under the 500 level, they don't even worry about it. The high end of the range goes up over 10,000, so that gives you an idea of where we are.
My transplant coordinator had texted back and forth with my surgeon, who's in Utah this week, all along the way and got back "It's a go!" from her. I imagine her at the top of a ski run somewhere, thinking "Of COURSE this would have to happen with Holly. . ." Something about our interactions makes me think I'm the "Shopko kid" at the transplant center -- the one everybody knows by first name.
So, thank God, we're still with our plan.
And, as Cheryl predicted, after the last day and a half, we'll probably both sleep REALLY well tonight.
------later -----
Well, mine may not be the face that launched a thousand ships, but I have an immune system that's launched a research study!
My surgeon -- when she got back into town from that ski trip -- called to say that yes, we were a go on the transplant, and besides that, this episode had inspired the team to look into low-level DSA measurements and exactly how much they do count in long-term transplant survival.
"We got to talking about your situation, and it seems like time to look at it further," she said. "We agreed that someone should look at people with mild DSA reactions like yours and see how they did over the long term.
"And that means I get more work!" she said cheerfully. (As much as she loves doing surgery, and she has said just that in so many words, she's also apparently ready to slice into long-term tracking studies to ferret out this information.)
Meanwhile, Cheryl and Cindy will also be a long-term study of their own. Two sisters just two years apart, with similar dietary habits and living in the same house -- it's just too good for the U to pass up.
They'll test both sisters once a year in a daylong workup to see exactly how they both do over the long term. Is Cheryl's sole kidney keeping up? Have there been some kinds of changes that mean she's getting sick more than Cindy? etc.
So, my panic has launched something that may be helpful and prevent panic for hundreds of other patients. And Cheryl will have a lifetime's worth of diligent, no-stone-unturned annual physicals.
I hope that's good for both of us.
Well, a brief of what's been going on for the past month -- my mother had spine surgery March 1 in Michigan, then began battling a series of infections. She was in the hospital a week and has been in a nursing home since then. She seems to get better, then catches something else. I've spent days calling back and forth to my father, to doctors, to social workers, to admissions directors, to nurses and to care coordinators.It seems like my father and I are yanked back and forth between joy and despair on a daily basis.
So, on Monday morning, when I woke up expecting to track down whether my mom had a cold, pneumonia or some other kind of infection, I had a message from my transplant coordinator on the phone. "Your test results show you have donor-reactive antigens, which means your body could react to Cheryl's kidney. . . This happens very rarely, but when it does, we consider it too risky to transplant that person's kidney into you." She said Cheryl and I needed to come in for further blood tests.
I raced down to the U and let the clinic know I was there. Then I went out and stood in the middle of Delaware Street (the only place I can get a cell-phone signal) leaving messages for my mom's nursing home, the care coordinator and pleading with a neighbor to go up and tell my dad to put the phone back on the hook so all these folks could call him. I missed my first call and waited another hour -- a soggy, distracting little island in the waiting room. Nothing inspires more confidence in a clinic than a patient sitting in the waiting room crying, I'm sure.
After a blood draw, I made it back to my car -- despite not having paid any attention to which floor of the ramp I'd parked on -- and got a call from my father as I pulled out. My mother was doing great -- had walked 200 steps in physical therapy that morning -- and, despite a congested-sounding cough, was in good spirits. She was on vapor therapy and antibiotics. What a relief.
However, I was still a wreck and couldn't conceal it from him. I told him what was going on; he knows what that feels like after having been "called" for a cadaver kidney only to find out after further testing it wasn't a match. "That's a real big fall," he said. Next, I had to tell Randy.
And then, of course, I had to start searching medical journals to try to figure out what was going on.. Nobody knows for sure what triggers donor-specific antibodies; one theory is that the number of vaccinations you go through prior to transplant -- a hepatitis B series of 4 shots, pneumococcal vaccine and, in my case, a chickenpox vaccine to try to prevent shingles -- jacks up your immune response. The second leading theory is "We just don't know."
(Unlike what one of Cheryl's friends suggested, Cheryl has NOT been biting me!)
She didn't take the chance to back out, bless her -- she said she'd be willing to do a paired-donation plan, where she'd give her kidney to someone else who needed one, and I'd get a kidney from someone willing to donate one. However, we'd lose the luxury of planning it around our own schedules, especially considering mine also includes having my native kidneys removed 6 months from the TX surgery. The small amount of yard work I've done this spring has proven they're more painful than ever, and I just don't want to wait any longer than I have to to get rid of them.
And then there's Cheryl's wonderful family -- her mom Mary, dad Jim and sister Cindy. Do you know what Mary told me? She's telling her friends to check out "our third daughter's blog about her kidney." She told me, "After all, you're going to have our DNA!" Thinking about letting go of that promise was almost harder than letting go of the transplant.
So, a long night and a hard day on Tuesday, though a lot of support from my co-workers, who knew what was going on since I'd missed the day's work on Monday.
And then -- a miracle. The Monday testing showed though I do have a slight donor-specific antibody response, it's not enough to call off the transplant. It's all in numbers -- mine range from 600 to 900, and under the 500 level, they don't even worry about it. The high end of the range goes up over 10,000, so that gives you an idea of where we are.
My transplant coordinator had texted back and forth with my surgeon, who's in Utah this week, all along the way and got back "It's a go!" from her. I imagine her at the top of a ski run somewhere, thinking "Of COURSE this would have to happen with Holly. . ." Something about our interactions makes me think I'm the "Shopko kid" at the transplant center -- the one everybody knows by first name.
So, thank God, we're still with our plan.
And, as Cheryl predicted, after the last day and a half, we'll probably both sleep REALLY well tonight.
------later -----
Well, mine may not be the face that launched a thousand ships, but I have an immune system that's launched a research study!
My surgeon -- when she got back into town from that ski trip -- called to say that yes, we were a go on the transplant, and besides that, this episode had inspired the team to look into low-level DSA measurements and exactly how much they do count in long-term transplant survival.
"We got to talking about your situation, and it seems like time to look at it further," she said. "We agreed that someone should look at people with mild DSA reactions like yours and see how they did over the long term.
"And that means I get more work!" she said cheerfully. (As much as she loves doing surgery, and she has said just that in so many words, she's also apparently ready to slice into long-term tracking studies to ferret out this information.)
Meanwhile, Cheryl and Cindy will also be a long-term study of their own. Two sisters just two years apart, with similar dietary habits and living in the same house -- it's just too good for the U to pass up.
They'll test both sisters once a year in a daylong workup to see exactly how they both do over the long term. Is Cheryl's sole kidney keeping up? Have there been some kinds of changes that mean she's getting sick more than Cindy? etc.
So, my panic has launched something that may be helpful and prevent panic for hundreds of other patients. And Cheryl will have a lifetime's worth of diligent, no-stone-unturned annual physicals.
I hope that's good for both of us.
Wednesday, March 17, 2010
Divergent views
As we discuss my upcoming transplant, it becomes clear Randy and I have different viewpoints on it.
For a year, I've been looking forward to this as my lifeline, as what will literally get me back to the active, enjoyable life I remember.
For the same year, the realization that the transplant is looming has clouded almost everything he's done. Logically, he knows it's a step forward. But the operation, the meds, the whole process has him frightened.
It's like I've been carrying a lot of this silently -- which is true -- and he's not sure he can handle the next step, as it will involve having to care for me to a certain extent, drive me around and (most likely) argue with me when I want to do too much.
I think at base it's setting a date that makes it all too real.
For a year, I've been looking forward to this as my lifeline, as what will literally get me back to the active, enjoyable life I remember.
For the same year, the realization that the transplant is looming has clouded almost everything he's done. Logically, he knows it's a step forward. But the operation, the meds, the whole process has him frightened.
-edit 5/28/2010-
I'm posting here after the transplant but the insight gleaned was valuable. Holly was moving emotionally from dying to rebirth. Her body was failing her and only extreme effort was going to hold that eventuality at bay. However, things were going on unregulated and because the disease was in control of the rate of failure there was little either of us could do. Holly's nephrologist said as much. I hit the skids emotionally the first time when we went to tell Holly's parents and the direness of her situation came home to me.
As it became time for the transplant it became more and more my concern that we would become responsible to and for this organ. Once the graft was made it would become our responsibility to regulate things that take care of themselves for most people and would no longer take care of themselves. We were moving to a new state of vigilance as trustees of this gift. Also I was (and am) faced with my responsibility in the face of all the communicable illnesses presented to me because I work at a university with many stressed students. Having a working immune system allows for a more carefree life. I also do not like to be in a situation where I do not know my responsibilities or my capability to meet them.
My anxiety was immaterial compared to the potential for a new and challenging life for Holly. At this point after the transplant I'm figuring out my role and helping Holly as she settles in to her second life.
-RSS-
It's like I've been carrying a lot of this silently -- which is true -- and he's not sure he can handle the next step, as it will involve having to care for me to a certain extent, drive me around and (most likely) argue with me when I want to do too much.
I think at base it's setting a date that makes it all too real.
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