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

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.

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. . .

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.

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.

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.

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.

Not so much like a "Rock Star"

Rock Stars are mercurial and given to rising and falling moods and output. Holly's new kidney is steady, dependable, performing consistently to standards in a context of change. Maybe more like what you would wish from an excellent accountant.

'Like a rock star'

The head nurse in the procedure room at the U's transplant clinic said, "Holly's going through this like a rock star."

Randy and I made some jokes about trashing hotel rooms and smashing guitars,but the staff insisted: they very rarely let someone go just a week after being released from the hospital to get their labs done at their home clinic. (Usually, they find medication levels and other measures are still rising and falling and people still need to come to the U for at least another week so they can supplement either immunosuppression or other infusions.)

That's something I've heard along the line, from transplant-floor nurses, from physical therapists insisting I slow down while "practice" walking and from nephrologists and surgeons, so I guess it must be true.

It makes me curious: is it my natural bullheadedness and determination to pass whatever "test" is given me? Is it the fact my father's experience has been such a success I simply didn't expect anything less? Is it the prayer pouring in from all over?

My mother laughed when I told her on the phone, "Maybe all those people at Bethel were right -- maybe Cheryl and I are sisters!" "It makes you wonder, doesn't it?" she chuckled.

Whatever the answer, all I know is gratitude -- an abiding peace combined with a fierce joy. Could I close my eyes right now and just send up a fervent prayer of thanksgiving? Yes. Could I go out and wheel and leap and dance on the driveway? Oh yeah!

Well, except for some lingering incision pain, that is. But, just today, that started itching as well as hurting, so. . . more progress!

More great tech

When I woke up from surgery, I was, as you often hear, "hooked up to tubes."

The most annoying of these, of course: the urinary catheter. I heard a few theories on why it's used: "We don't want your bladder distending and undoing the attachment to your new kidney" and "We have to keep track of how much fluid is going through you." Regardless, it's uncomfortable, especially when the exit bag fills up or the tube gets kinked -- starting to fill the bladder despite all intentions. When that thing came out, it was a GOOD day.

I also had oxygen coming in through a tube with double prongs going into my nostrils. The main annoyance with this was that I'd been intubated during surgery, and so had a dry, swollen throat -- to the point it would feel like it was flapping "closed" at times. However, it took a while for me to keep my O2 rates up above 96 percent on my own. After they removed that tube, I could use a tip a nurse gave my dad -- thanks, Pete from Marquette! -- of keeping a wet washcloth over my nose and mouth to help moisten the air and ease the swelling.

Most unexpected: the "pressure pants" they put on my legs prior to surgery and kept on at least 2 days. These inflate every few minutes, first one leg, then the other, to help prevent blood clots. What does it say for my drugged, recovering state that I was basically able to sleep through all this?

But the best intervention ever, diagrammed above, the external jugular catheter. It entered about 2 inches below my ear and 2 above my clavicle, and extended for a good 5-6 inches down my jugular vein. As you can see, the end comes out quite close to the heart. With this, they could not only take blood samples without a needle stick and run multiple lines of IV fluids and drugs into me, they could also measure venous pressure.

If you've ever been hospitalized with the classic hand-located IV, you know how uncomfortable it is. Every movement affects it, whether you're trying to eat, shift positions in bed, get up or just fall asleep and have the misfortune of moving then. When sitting up on the edge of your bed is an existential challenge, the last thing you need is this thing hooked to your hand that you have to make sure doesn't get caught, tangled or kinked.

Though they put it in while I was asleep, they took it out while I was awake. It was stitched in -- the only place I did have stitches, and the nurse carefully snipped and pulled those out. She then told me to take a deep breath, let it out all the way and hold there -- and pulled the catheter out.

This is where I love professionals -- at the intersection between "This is just my highly-trained, demanding job" and the layman's "It's all way cool, isn't it?" Nurse Beth turned to Randy and said, "Do you want to see it? Are you OK with looking?" He rather reluctantly agreed. I, of course was anything but reluctant. Way cool, Beth!

I had what looked like a pretty little bullet hole in my neck for a few days, but that's healing up nicely. Even if I end up scarred, it was well worth it.

The new resident

This is what my kidney transplant looks like. See the light-colored "bagel" on the left side of the screen? It's a transplanted kidney, cradled in the "iliac fossa" of the right hipbone, probably in a safer spot than it had been originally!

This is something that's puzzled lots of people -- "So which kidney do they take out to put Cheryl's in?" I still have both my monsters -- the nephrology fellow was somewhat surprised to encounter them today where no one expects to find a kidney -- and this one has been tucked into my hip and is the third connection to my bladder. This is done mainly because the right iliac blood vessels are easiest to attach to the new kidney. I'm told my "native kidneys" will soon realize there's a new, avid worker in town and will gladly give up their fight. They'll still be alive, attached to their original blood vessels, but they'll probably stop producing urine.

Cheryl, thank goodness, also just had abdominal surgery, with about a 3-inch incision next to her navel. Years ago, removal of a donor's kidney involved an 8-inch incision from your back around your side -- LOTS of muscle involved -- and removal of a back rib! The only thing Cheryl had to worry about was whether she was subject to back pain -- once she was out on the operating table, the surgeons twisted her hip back and chest forward so that the kidney "popped" up as other organs pushed against it.

I found my incision is a little bigger than I expected when the nurse held her thumb and finger about 5 inches apart during one of my "T - 1" (the day before transplant) appointments.When I finally got to a mirror where I could see the whole thing, I found out it's at least 8 inches long. And you know what? There's not a stitch or a staple in it!

That's thanks to the brand-new world of surgical adhesives. Where do you find a glue that works on admittedly wet -- and constantly generating more wet -- surfaces?

I haven't been able to run into a surgeon at my lab appointments, but I suspect it's "BioGlue." It's a biologic (based on purified matter from cows) system where two materials are mixed together as they hit the wound, and knit it together within 2 minutes. Hmm. . . sounds like my father's favorite kinds of epoxy!

Thank heavens for advances in medicine.

image from www.medcyclopedia.com
Components of BioGlue:http://www.cryolife.com/products/bioglue-surgical-adhesive
New fields in surgical adhesives, including slugs (!) and mussels:
http://www.sciencedaily.com/releases/2009/05/090501200853.htm
http://www.sciencedaily.com/releases/2009/03/090318085923.htm

Prayers from all over

This is my smallest prayer warrior, my niece Maggie.

She's Randy's sister Karen's daughter and, her mom reports, has developed a real empathy over the last year.

"I sat down with her and explained what people's kidneys do for them and the fact yours weren't working well anymore," Karen told me. "And I told her that because people can get along with one rather than two, your friend Cheryl volunteered to give you one of her kidneys.

"She looked up at me and said 'I'm so glad Miss Cheryl could help Aunt Holly!'"

Maggie and her older brother Michael have been praying for Cheryl and me with their classrooms at school. Being the recipient of prayers from those direct minds, those pure hearts, is just awe-inspiring.

I'm not good at praying for myself, and am just so grateful to everyone who is keeping us in mind. People I knew as a girl in Crystal Falls, people my in-laws have known since college, people at Bethel and at Cheryl's and our church, people I've never met. The reassurance of knowing all of you out there are lifting us up goes beyond words.

And you know what? Cheryl may have given me a "great little kidney." I may be a pretty determined (or "bullheaded") patient. But my progress is astonishing health professionals across the board.

Your prayers are working!

Knitting up the raveled sleave of care

Thursday, April 29 was the first night I was able to sleep through the night, rather than moving from bed to couch to futon trying to get comfortable -- or wear myself out enough to override the steroids.

It's incredible how even after an hour or two of sleep I have noticeably less pain than when I lay down. Apparently a lot of things are being knit together during these times.

A handful of pills in the morning, a handful of pills in the evening, and things seem to be going OK.

I was back at the U only once for a "booster" IV of steroids to try to get my immunosuppression up to therapeutic levels, thank goodness. Life's a lot easier to deal with without steroids on board!

That 'new kidney smell'

At my "T-1" appointment, the head procedure-room nurse explained what happens in a living-donor transplant:

"Cheryl will go into the operating room first, about 15 minutes before you. They'll start surgery on her to remove her kidney, then carry it in a tray over to the operating room where you are.

"Then they "bench" the kidney -- I don't know why they call it that -- but they take it out of the tray and run saline through it and clean off any excess tissue that might be on the outside.

"That part always makes me think of when you take your car to a really good mechanic and get it back all cleaned and detailed."

Here's to really good "mechanics" !