Start at the Beginning

 Because blogspot assumes you have been following from the start it presents the most recent first.

Here is the link to the first post on Holly's transplant journey.

It's been a long time since we have posted about about Holly's second life. Since I am updating for her Kidney Day poster I thought I'd do a short update. 

Holly has been having a great second life continuing to write and edit for Lillie Suburban News, teaching journalism on an interim basis at Bethel University, surveying beaches on Lake Michigan during an avian botulism outbreak for the Michigan DNR. She also was able to take care of her parents as their health failed and they passed from this life. She would not have lived this second life had she not received Cheryl's gift.  We are grateful how active Holly has been since her transplant.

The reason I am writing this update for Holly is that she is unable to do it herself. In October 2018 she became severely disabled. She was infected by a mosquito with West Nile virus (WNV). Because she is immunosuppressed the infection damaged her nervous system (our experiences with WNV are here). Once she cleared the virus she started to improve but she is still limited in what she can do but none of her current challenges are related to managing her kidney.

We want to celebrate Holly's Kidney Day, the gift of her best friend Cheryl to us. It is also a great time to celebrate all the systems, and especially the people and families that make these miracles possible. 

FAQs

Here are some answers to some frequently-asked questions:

— Are you on a special diet now?

No -- this is the first time in years I'm NOT on a special diet!

During kidney failure, my system had trouble processing things like potassium and phosphorus. I knew the potassium thing meant I couldn't eat bananas. I didn't really try looking up all the other potassium-rich foods; it reads like a random list from every food group you can think of. (Bran. Raisins. Nuts. Sardines. . .)

The phosphorus was something of a problem, as the fizz in pop is provided by phosphoric acid. I actually was on phosphorus binders for a while. It felt like the Diet Pepsi was the only thing keeping me awake for life, so I figured this was at least a compromise.

Now, the only thing I can't eat is grapefruit -- either the fruit or juice. It's been found that a component in grapefruit increases the blood-plasma concentration of immunosuppression drugs by double or more. Because these drugs are beneficial at a certain level and can become toxic at higher levels, a dramatic increase could actually threaten Cheryl's kidney. Ongoing overconcentration of the drug could be deadly.

In looking this up, I came across a case study of a man who was actually a general practitioner who was taken to the hospital with blurred vision, racing heartbeat and tremors several months after a liver transplant. He'd been eating orange marmalade made with grapefruit juice on a daily basis for over a week, and by the time he got to the hospital had 10 times the optimum level of Cellcept in his bloodstream and was accumulating waste in his kidneys.

So -- no grapefruit!

How do you keep track of all those pills?

Thankfully, from the transplant to now, I've been able to go off some of my meds. Most notably, I've been able to drop my last blood-pressure medication since the nephrectomy, since apparently I'm not carrying excess fluids around. So, I'm down from 10+ prescriptions to six!

I still have 7 to 8 pills to take at a time, twice a day. I have four 7-day pill organizers and can stick a day's worth in my purse.

Most practically, I began practicing taking multiple pills at a time when I was first diagnosed, and can pop all 8 at once. This impresses some of the oldsters at SuperAmerica -- they probably wonder what on earth can be so wrong with me at my age that I need pills by the handful!

Why didn't they take your kidneys out through two slits in your back?

I've actually had primary-care doctors try to look for scars on my back even after I've explained the process to them!

Basically, the answer to this is "because they weren't there anymore." At navel level, they had grown to extend from my spine to the sides and front of my abdomen -- literally to the navel. If you push on yourself an inch or two lower than your ribcage, you should only encounter "gushy" stuff -- relaxed muscle and internal organs -- just as I do now.

Prior to removal, if you prodded me there, you'd encounter kidney, which pushed right back at you like a leather sack filled to the bursting point with fluid -- which is pretty much what these were.

A 9-inch incision in front was, I'm told, just enough to get the lefthand monster out. They weren't located in my lower back anymore; they were everywhere.

What 'recovered incredibly fast' means

It's come to my attention that perhaps I haven't been as clear as I could about what "I recovered so fast my transplant coordinator couldn't believe it" means.

One of my correspondents, hearing I'd been at work all last week, was unsurprised at the fact I put nearly 40 hours in and instead wanted to know "You mean she's driving herself there? She can pick up her feet and put them on the pedals?"

Actually, I could pick up my feet and go up and down stairs as often as I liked the day I arrived home -- a far cry from having thought prior to surgery I might have to rent a "commode" for our main floor. (The thought of having to ask Randy to empty that out made me vow that I'd CRAWL upstairs if need be.)

Since then, it's pretty much been all uphill. I went to Target to clearance-clothes shop the Saturday after the Tuesday I got home from the hospital and managed, though trembling toward the end, to put in a good hour and a half of hiking back and forth from the racks to the changing room, carrying clothing around and trying it on.

The day the above query came in was this past Saturday, 3 weeks and a couple days after my surgery. I'd gotten some 11-12 hours of sleep, catching up from the workweek, and early in the afternoon, my "activity supervisor" had gone to bed with a migraine.

This left me a free agent. I took the opportunity to:

1. Shovel the snow off the porch and porch steps with a dustpan (I at least realized I couldn't lift the garage door to get a shovel. It has what our realtor described as "an Armstrong opener.")

2. Remove and wash the furniture covers and the smaller rugs in the living room. All our furniture has removable, washable covers, thanks to the dogs. This took 6 loads.

3. Vacuum rugs on the main floor and 3-season porch about three times in all, before and after after brushing Arm & Hammer "Pet Fresh" into them.

4. Wash the dining-room floor on my hands and knees.

I actually survived better than the vacuum did; on its third or fourth course through the porch, years of fighting setter hair, thread and rug fibers finally took their toll, and it seized up completely. Randy, awakening at this moment, said the beater-bar ends had shifted in their sockets, so we're hoping a new beater bar will keep us in the fur-removal business a while longer.

Hey! Just thought of it -- a vacuum-cleaner organ transplant!

Twins of my twins

They're not mine, but they're pretty close -- just a couple inches bigger in each dimension. The smaller one, like my right one, looks like its cysts have been cut away from something else. The larger, like my left, appears mainly intact.

Not many internal organs are up for beauty awards, but for sheer sci-fi horror, polycystic kidneys are in the finalists, huh?

Although I'd taped a note to my robe demanding photos and measurements going into the operation, I apparently failed by letting some woman in the OR take it from me, because I didn't get any photos.

I should have laundry-markered the message on my body under the robe, I suppose.

Anyway, my surgeon blamed herself for not getting photos of the culprits, but I can't say I dare blame her for anything, since everything turned out so well.

Still having a few echo pains from where the left kidney was apparently pressing on a nerve and pain on my right side where apparently the cysts were cut away. They're not persistent or bad, though, just a reminder now and then that I've been through something.

Think I'll print this out and carry it in my wallet for when I wear my "Ask Me How I Lost 20 Pounds in 3 Hours" t-shirt out.

Catching up

I obviously am no good at keeping up with blogging on a daily basis and couldn't while I was in the hospital, so I've gone back to add in posts describing some of what led up to the nephrectomy and daily looks back at the hospital stay and recovery.

If you care to start at Aug. 28 and skim forward from there, you'll hit new material in nearly every post.

Holly

How to cope

with surgery, recuperation, the accumulation of heavy objects around the house that you can glare at for hours but not pick up?

My suggestion:marry my husband Randy. This, of course, is a path closed to the rest of you (and how) but I think Randy's due for at least a fraction of the gratitude due him. Since I've gotten home, he's:

fed dogs, let dogs out, taken care of dogs at 6 a.m. all day to 11 p.m.
made macaroni and cheese, hamburgers, eggs or whatever else I think my innards can take
shopped for groceries
done laundry
vacuumed
shoveled
done dishes
made beds -- you've never seen a neat bed until you've seen Randy's work
driven me to various appointments at various clinics
as I got better, driven me to department stores to go through clearance clothing.

At the hospital, he was attentive and positive while I was awake and perfectly happy to read while I wasn't. Not having to feel like I'm being entertained, and not having people feel responsible for entertaining me is my ideal for a hospital visitor, I must say.

Of course, Randy is my ideal for just about everything!

My surgeon made me cry

Chrissy, a friend and former co-worker who's had two children, noted on e-mail that since I'd lost 20 pounds since the operation, I'd probably have to get a whole new wardrobe.

I'd hoped that perhaps I could get rid of some of the really big clothes, maybe the ones that made me feel huge, and gradually replace the rest.

But something about that e-mail made me go upstairs and pull out a couple tops and some pants.

It appeared during the 5 days I'd been gone, someone had stocked my closet with clown clothes.

Waking up in the hospital, I noticed immediately that my stomach fell down and away from my rib cage, instead of bulging up and out. By the fourth and fifth day, I was sitting up Indian-style in the bed, which I hadn't done since my early 30s. After that, apparently the kidneys had taken over, shutting down my breathing as they pushed up into my lungs.

I've written elsewhere about my size 10-12 hips and thighs and size-24 waist, but the fact I could now pull every shirt I owned out to 6 inches from my waist really brought the message home. What had disappeared had disappeared from my hips to my rib cage, leaving it concave instead of convex.

I forgot to measure my waist before I went in for surgery, but I'm sure it was over 50 inches.

But I guess I didn't realize how far I'd come until Randy took me to Target to see if there were anything on the clearance racks that came any closer to fitting me. I found a pair of leggings in medium -- an avenue closed to anyone shaped like I was.

With an armful of tops and sweaters -- seriously, who knew what size I might be at this point? -- I went into the fitting room. I was feeling shaky and lightheaded -- this was Saturday and certainly the most exercise I'd had since before surgery.

I pulled on a long, thigh-length sweater that clung too close to purchase. But what it clung to was an obvious waist. How many years had it been since I'd seen that? How long had I been wearing women's elastic-waist knit pants and men's T-shirts and sweatshirts I got at Goodwill? How frantic was I during the months it looked like they were going to leave my kidneys in? And for how many years before that had I blamed myself for being "fat"?

One of the things my surgeon told me right before the operation was "You'll feel so svelte!" Genius, procedure and technical capability put aside, she knew.

I certainly never expected to look svelte again, and it's a shock every time I look in the mirror. People at work say just seeing me walk by in the corners of their vision, they're not registering it's me.

So, apologies to Target shoppers on the afternoon of Saturday, Nov. 20. The woman bawling and clinging to her ever-understanding husband was me.

I know -- I've had my life saved and, on top of that, the quality of my life given back to me. This shouldn't matter so much.

But perhaps to a woman --and certainly to this one, it does.