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.)

Well, a few things have changed, and where other women may have DD chests, I have DD kidneys.

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.

Starting in summer 2009, I also began having pain. A dull, sick ache most times, a gripping, gasping, freeze-'til-it's-over spasm at -- thankfully -- rarer times. Waking up yelling, sitting at work groaning. . . I was determined to have somebody rescue me by removing these monsters.

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.

So, my surgeon wanted to make sure the kidneys were what was causing the pain. I was about 99.9 percent sure they were, but of course, that's not empirical evidence.

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."

He pulled the MRI up and found an image like the one above, where a kidney should be a smooth, small mass localized against the back of the cavity. Another image, a wider view at around the navel region, showed my vertebra and twin white, cystic masses in every direction, right out to the abdominal walls and skin.If there were any digestive functions in the area, you wouldn't know it.

"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.

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

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

• 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

Evening

• Immunosuppressant 1: 4 tablets
• Immunosuppressant 2: 3 tablets
• Cholesterol control: 1 tablet
• Troche: 1 tablet

Now for the listed side effects of each one:

• 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

See the almost-always-repeated symptom at the end of each list? Like the rimshot that follows each of a Borscht-Belt comedian's lines? You can see why I'm so happy I haven't thrown up at home, though I did in the hospital. No fun even with just an 8-inch incision.

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.

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.