Saturday, November 13, 2010

A few whys and hows we've come to this

(A summary Randy composed for people who are just catching up with the blog. He put it together sitting at Holly's bedside after the November 11 nephrectomy.)

May 24 -- changed life arc

I had entirely expected that my PKD would proceed much as my father’s had. That is not show symptoms until my fifties, but it was not to be. I'm in my early forties so have a long career of immunosuppression ahead of me.

I'm so glad so much has changed in transplantation over the last 27 years. But who knows? The next 5-10 may bring us the DNA-matched kidney or the marker-washed pig kidney! no more immunosuppression!

August 2009 -- an intermittent struggle but going forward

It was an uphill battle to get the U surgeons to agree to take my native kidneys out. Much push back and such specious logic as "You don't get lower back pain with enlarged kidneys." (Oh really?)
I happened to be having an awful day with pain (it comes and goes for a few days at a time, then a week or 2 off) when I was in for an appointment and a doctor walked in to see me with my leg and knee flexed up on the exam table while I cried in pain. . . that finally made an impression.

We still a second opinion from an orthopedist to make sure I didn't have classic back pain. Bless him, he pulled the MRI up and saw it at the same time I did. In a cross-section at my navel, you could see my spine, and then nothing but kidneys right out to the borders of the frame. "I'm not a kidney doctor, but even I can tell your pain is probably coming from these (he paused to try to phrase it more elegantly, then gave up the fight) gigantic kidneys."

People are interested in what my experience might has been like at various point as the disease progressed -- well, at 40 percent, I was pretty much as active as ever, though perhaps not as energetic as I'd been in my 20s. What really took the toll was the dread of what would eventually, assuredly happen to me. (I fully expected to go downhill on dialysis until a cadaver kidney became available.) At under 30 percent function, I had a huge wakeup call when my blood pressure meds stopped controlling the pressure and it went right through the roof. I couldn't think clearly or concentrate on anything. That's when I found out just how bad off I was -- a day before my 40th birthday.

The plan is to have an "open" nephrectomy in which they open me up from the breastbone down past my navel -- like a big old-fashioned C-section. [Ironic since the size of the Kidneys gives people the impression Holly and other PKD women are pregnant. rss]

The plan also includes taking out a bunch of "while we're in theres" such as my gallbladder, my appendix and perhaps my spleen if the left kidney is too far involved with it. I rather dread the whole thing, but the amount of pain I've had even since the transplant tells me there's no question I need it. [There was no need to remove the spleen. rss]

May 26
I don't think of wanting this nephrectomy as vanity. [Women with PKD often are mistaken for being pregnant and individuals who make this mistake create embarrassment for themselves and annoy the woman they are talking to. rss] I think these two things that are each 12 inches long by 6-7 inches in diameter must weigh QUITE a bit. Having all that on my back, knees, and feet for the rest of my life is more than I'm up for.

Isn't it strange how PKD takes different families and individuals? A family close to us has it but it most often affects when they're elderly. The sister of the family member we know best has it, though, and has far more problems with liver cysts than kidney cysts.

It's funny how -- well, ignorant -- even health professionals are about PKD. A doctor of my acquaintance had a nurse for years who'd worked for a doctor whose daughter had given him a kidney. We'd go over my records every time I came in and establish that I had PKD and I inherited it from my father. And then she'd ask, "Did you ever consider donating a kidney to your father?" I always just said "no" and let her think I was some kind of slacker instead of getting into "Well, my kidney wouldn't have lasted him as long as the one he's got, and losing one would cut my pre-transplant lifetime in half."

I was very relieved when she retired and we didn't have to go through this routine anymore.

July 23

Just came across another new twist:

I was curious about GFR (the measure of the flow rate/function of kidneys) after I got Cheryl's. Judging that my own kidneys were down under 12 percent or so, adding Cheryl's only increased GFR to 48 percent. I wondered at the time if her kidney, though doing a great job, was a little shocked by the experience.

I'm now up to about 54 percent function overall, and so asked my coordinator about this.

She said that a lone kidney left in a healthy person (a living donor) senses it's on its own and simply performs even more to handle the extra. Such a kidney might increase its GFR by as much as 20 percent at a year following the transplant of the other.

In my case, the new kidney will also adapt to handle more work, but likely will not hit the 20 percent extra due to being inhibited by immunosuppressants. (The usual immunosuppressant conundrum.)

So, at some future date, Cheryl and I could be getting 130 percent out of those kidneys!

August 10
You know, I haven't blogged for perhaps 2 months. It seems like I have so much to do -- and most the "exciting" stuff is over -- but people do ask. [It’s not exciting to you but we all think it’s pretty swell. rss]

Oct 12
Yeah-- I HAVE to get into that blog again. As one of my outstate friends noted, "You went back to work and poof! nothing!" Work is my life -- was here 16 hours yesterday -- and I have been concentrating on that and projects at home with all the energy I've got. Amazing what you can get done when you're not sleeping 14 hours a day. . .

Nov 8
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.) [Holly has a post about this event here. rss]

Later on Saturday

-- by Randy

Well we are more than 48 hours from the surgery and Holly looks better and is clearing some of the anesthesia and other drugs from the operation. The team is working to alleviate more of her pain. She still has some issues related to physical interventions like breathing tubes related to the surgery and anesthesia. We also are waiting the "flatus" event that will announce the return of peristalsis. The waiting for this and other indicators is difficult.

What I neglected to say earlier is that we are in the same room as we were for the transplant, only on the window side.

---------Holly, later------

On Saturday, I still felt rotten and was managing to avoid sitting up with various excuses and offers to do it "later." On the physical therapist's visit that afternoon, I figured I couldn't put it off anymore. Plus, she and the nurse tempted me with an offer to change my sheets and bedding while I was up -- that was convincing in itself!

So, with one of them on each side, I levered myself to a sitting position, then shuffled the 4 or 5 steps to a chair.

As they made the bed, the physical therapist -- who'd obviously had some experience with this -- glanced back at me now and then, as I clutched the seat of the chair with white knuckles and gritted my teeth. "She's not getting enough pain medication," she told the nurse.

They quickly figured out I wasn't able to "voluntarily" dose myself enough with the pain pump, and introduced IV pain control. I don't know what went wrong this time, except maybe I was too knocked out to take charge of my situation.

An observant physical therapist was the start of the turnaround.

Day over day

-- by Randy

I got in to the hospital later than I planned because there is 6 inches of snow on the ground. I got enough shoveled so that there is so there it is clear around the door so if someone needs to see the dogs they don't have a whole days worth of snow to get through. It's going to take me a couple days to get the drive way done at this rate. Of course it is a pretty snow and probably wont last the week. I only wish it was next weekend.

When I did get to the hospital Holly's bed was elevate a bit she said they had her sitting The therapist wanted to do it yesterday but she was not up to it. She said it felt a bit "wild." She no longer has the finger tip oxygen/heart rate monitor on her finger so that's one less monitor, which is a small progress she still has the stomach tube so that they can remove stomach fluids because she had some nausea in April and with this incision they wanted to avoid any nausea. Also I don't think there is much in terms of peristalsis restarting so this just one other body function that has to be managed as Holly's body re-establishes its self regulation or homeostasis.

About the time I got there a tray of food, really various clear liquids, showed up. Holly hadn't ordered it and tried to send is back but the order was for her. So she elevated the bed a bit more and tried some broth. She did well negotiating the spoon around the stomach tube. Then she put the bed back and went to sleep.

So just as the snow slowly piles up over the day Holly incrementally makes small improvements back to health.

It is amazing how visible the progress is from day to day. Yesterday she was zonked out consistently . Today she is eating a little and a little less zonked.

Friday, November 12, 2010

Very Little Joke

I can't tell this to Holly as she will laugh but imagine a Character from "Mr. Rogers' Neighborhood" . . . Mr. McFeelwell saying "speedy recovery, Miss Holly Speedy recovery."

Thanks for indulging me.

Its a quiet day

As one would expect. Holly had a tough night so today she claims that she's not real exciting. Since I'm not here to be entertained I don't mind. Today her pain is lessened and she is sleeping pretty consistently.

I look around the room at all the monitors and tubes and it is obviously early days in recovery. Last spring each day brought fewer tubes and fewer readouts on the monitors. So we will just wait and I will observe the changes in the room as Holly grows stronger under care.

A couple interesting changes

Randy:

We have noticed a couple of changes in pre-op procedures even in the six months since the transplant. I noticed the first change right away when I went back to spend time with Holly before the operation. She was on the gurney with a white hose attached to her gown and the other end was attached to a heater that looked sounded like an old "soft bonnet" hair dryer, not the bullet shaped missile tops but the bag-over-the-curler type women used to use before blow dryers.

The device is called "Bair Paws" and they were using because studies indicate that warming patients before surgery reduces the risk of infection. It probably also helps them relax and stay comfortable.

The second change is a bar code on the wrist band. This the square type code that advertisers and the post office are using. There are still a lot of questions about name and birth date which may be about confirmation and assessment. It was interesting that at least at one juncture the code was read by a device to register the presence of the band electronically. This is the second day I have noticed that they are using the bar code when collecting additional information. So it seems to be a part of the routine information control.

Holly introduced her own innovation.We were talking and she said "Give me some of that tape." so I gave her some tape from the cart in the prep room and she taped a note to her gown. Every nurse and anesthesiologist said oh a note and Holly let them know that it is reminder for the pathologist to take pictures of, measure and weigh her formerly native kidneys. The last took particular delight. "You've got a point, and you want to get it across."

------Holly, later------

Randy tells me I looked like I'd been through plenty of trauma when they brought me to my room after surgery. Sweating, pale, breathing hard around that stomach tube.

Coming out of everything, I had probably the most physically miserable 48 hours of my life. This time, I had the urinary catheter, an IV, a stomach-emptying tube going into my nose and down my throat, and oxygen. From there, I also had some trouble with pain control -- my own trouble, not the U's. I again had a little pushbutton "pain pump" in my hand to release the IV painkiller, but was either fast asleep or too woozy to give myself enough. So. Pain, dry mouth, dry throat, occasional choking feeling when not getting enough oxygen.

The "last dawdler in the store" thing played against me a little -- on Thursday night, my nurse really, really wanted me to "sit on the side of the bed and dangle." The op had taken some 3-4 hours, probably getting me out of post-op around 6 p.m. And here I was being asked in some hybrid toddler-medical lingo "Do you want to dangle?"

I made clear, I thought, kindly and firmly that no, I had no intentions of dangling anything that evening.

Then, Randy says, I was told I'd be getting blood-pressure lowering meds.
Prior to the operation, my mother said several times on the phone, "I'm glad you're able to stick up for yourself," which I think was her permission not to be the "nice girl" she had fully intended to raise.Permission or not, a certain amount of spirit did serve me well.
Told the name of the med I'd be getting, I said "Why?"
"It's a blood-pressure drug."
"But why?"
"For your blood pressure."
"I'm not asking what it is, I'm asking why you want to give it to me."
It turned out it was because my upper number was all of 1 digit higher than it should be. (And she was not kidding.)

I refused this help, too, even more firmly. When it's an existential struggle just to stay awake for someone to take your vitals, it shouldn't be too surprising if your BP is up. (We may also have been having a dangling debate while the nurse was taking my blood pressure.)

After two more offers to help me sit on the side of the bed, the nurse grumbled, "Well, it's my job to encourage you to sit up and move, and so I'll keep on doing it."

Still, I didn't hear another thing about "dangling" that day.

Thursday, November 11, 2010

New post

Holly officially is not able to blog today so it's my turn.

Holly had her native kidneys removed today. She went into surgery at 12:50 and she should be in recovery soon. The surgeon was pleased with the "boring" surgery.

Just to start catching everybody up, after her transplant Holly has been enjoying life and having a great summer. She has been gardening, with gloves and a big hat, mostly. (Skin cancer is now one of our threats, as immunosuppression makes you less able to fight that, too.) Grooming dogs, painting a new bedstead and doing other projects as well as work have kept her happily busy. The transplanted kidney issues resolved and she recovered from the surgical restrictions. As the summer progressed she acclimated to her medications and her new routine associated with this new life.

It has been the plan to remove the native kidneys as soon as Holly was recovered enough handle another surgery. Her native kidneys were enlarged by the cysts caused by the PKD. She was experiencing quite a bit of pain from them and they were affecting her appearance and causing other complications. We will have more details about the native kidneys as these posts continue.

My admiration and gratitude to Dr. Dunn and the transplant team at the University of Minnesota Medical center. Thanks to Cheryl for stopping by to pass the time this afternoon. Thanks to Bethel University and the ITS Help Desk team for picking up the slack while I'm gone to take care of Holly. My gratitude is not just for the events around this particular surgery but for the improvement in Holly's life since this spring.

I will have a few days here to go into more details.

Randy

--------Holly, later--------

I actually slept most of the night before the operation, thanks mainly to a double-headed rush to get things done at work and at home to prepare for weeks off. Plus, I think I'd been getting gradually more depressed as the weeks got closer. Delaying the operation due to a bad bladder infection and ER visit in late October didn't help much.

I went into this operation with a dread I've hardly felt since I was afraid to leave home to go to camp. Figuring between a "We'll just hook up this organ with the bladder and a blood supply" operation and "We'll slice you open from breastbone to below your navel, take out half the organs you can name in your abdomen, and juggle the rest for awhile before closing up," I banked on being in at least 60 percent more pain than I'd been during the transplant.

In a rough calculation of incision inches vs. weeks off, I came up with 7" TX and 3 weeks off, and prepared everyone at the newspaper office for a 9-10" incision with the removal and at least a month off.

What did help was taking the Tuesday prior to surgery off. I was able to finish painting the bedstead that would help this recovery -- wouldn't be crawling off a mattress on the floor. I then took the dogs outside -- this was a sunny day in the mid-60s -- and trimmed their coats and claws and played with them barefoot on the front lawn. Something about those perfect afternoon hours reminded me this was why I was going through surgery -- to have more days like this.

Surgery was scheduled for noon Nov. 11. I never knew surgeons, who usually want you to check in at 4 a.m., even worked that late.

My surgeon checked in and said she probably wouldn't have to take my spleen along with all the other organs -- that's a huge relief, as your spleen is something of a last-ditch defense against infection. She also predicted cheerfully "When these are out you'll look so svelte!" The stinker. She knew this was good news all around the whole time.

As Randy waited in the little kiosk with me and people occasionally popped in to hook up IVs, quiz me about anesthesia or confirm what was being removed, I thought of something. "I probably won't feel like going to Cheryl's parents' for Thanksgiving, but I bet you could go on your own," I suggested.

"Oh no. I'm not going to that," he shot back. Randy's the gregarious half of our couple and he really likes the whole Jahnke family, so this instant rejection surprised me. I looked at him in bemusement.

"I need to be home," he told me sternly. "You need a lot of supervision."

The idea that, like a puppy, you can't leave me home unsupervised for a couple hours cracked us both up. And that helped, too, as the pre-op area emptied of both patients and staff.

I was certainly the last customer in the shop and they seemed quite ready to get rid of me! This time, as they wheeled me through the halls (I'd insisted on being awake this time, so as not to miss so much) Randy didn't have any time to get emotional at the "goodbye corner." They whisked me right through it, and I barely had time to grab his hand for a split second.

About all I was able to observe in the OR was that there were, as in an old movie, mint-green glazed tiles on the walls. Also, I thought, the giant light hanging over me had better be well-secured. "The chandelier! The chandelier!" About this time, the group decided they'd had enough of the awake Holly, and I agreed to a push of the "relaxing shot" into my IV. I had time, as my ears began to go tinny, to announce, "It's working!" although I'm sure a few seconds later they could have seen that for themselves.