Rick, Meet Dr. Kolff

Photo: Dr. Willem Kolff, center, with two colleagues and an early dialysis machine

Last October my husband, Rick, was diagnosed with “end stage renal disease.” That diagnosis is every bit as serious as it sounds.
There are levels of renal (kidney) failure. There is “acute renal failure,” in which your kidneys may recover enough function to carry on. Rick had that in 1997, which left him with partial kidney function for 13 years.
“End stage renal disease” means that your kidneys are done. Period. When Rick was diagnosed, what had been our normal life came to a halt, and we began living a “new normal.”
You learn a lot when the earth moves under your feet in a bad way. One of the first things you learn is how gracious and generous people can be when they see a need, and people have supported us in every way since last October. There has been so much kindness, there have been so many prayers, and people forwarded money that helped us pay the bills. It is a cliché to say that if I tried to thank everybody by name, I would no doubt leave someone out, which would be a pity. Like most cliches this is true, so I will simply say: Thank you. You saved us. Yes, you. Please take our gratitude to heart.
Last October 5, when Rick received this diagnosis, we had no idea what was going to happen to him, and where it was leading. Where it led was to home dialysis. I could do a lecture on dialysis. In fact, I think I will.
There are two kinds of dialysis: hemodialysis, and peritoneal dialysis. Hemodialysis is the cleansing and filtering of blood. The idea was around for centuries, but the process as we know it was pioneered by Dr. Wilhelm Kolff in Holland during World War II.
Kolff was born on February 14, 1911, in Leiden, Netherlands. He became an MD in 1938, and one of his early cases was a 22-year-old man who died of renal failure. Dr. Kolff thought there ought to be a way to save such patients, and he put his considerable mind to the task. In his research he found an article by John Abel, a pharmacologist from John Hopkins University, who wrote in 1913 about experiments with dialysis in animals.
After the Nazis invaded Holland in 1940, Kolff persisted in figuring out hemodialysis despite the Nazi occupation. He and his family, friends, and colleagues risked their lives to invent a dialysis machine using what materials they had at hand, including cellophane sausage casings, a cooling system from an old Ford, parts from a crashed German fighter plane, and washing machine tubs. Kolff's original idea was to give compromised kidneys a break so they could rest and resume functioning, then dialysis would be discontinued.
The first dialysis machine was completed early in the war, but the first successful treatment of a renal patient by hemodialysis was not until 1945. This patient was a woman in a renal coma. She had been a Nazi collaborator, hated by the people in the town where Kolff lived. He believed he was a doctor, not a judge, and treated her. She awoke from her coma, said, “I am going to divorce my husband,” and lived another six years.
After that it was a process of refining and improving hemodialysis machines. He sent five of his hemodialysis machines to countries around the world, including the United States. The machines evolved from helping people in acute renal failure through a crisis into also keeping people with end stage renal disease alive.
In 1950 Dr. Kolff immigrated to the United States, and in 1956 he became an American citizen. In 1957 he went to the University of Utah and started a Division of Artificial Organs and spent the rest of his life researching and developing artificial organs, including the artificial heart. Robert Jarvik, one of Kolff's graduate students, was the project manager for the development of an artificial heart, and the Jarvik 7 heart currently is used in terminal cardiac patients as a bridge to heart transplantation.
Dr. Willem Kolff died last year, February 11, 2009, four days before his 98th birthday. All hemodialysis patients alive today, including my husband Rick, and patients with many other terminal conditions owe their continued existence to Dr. Kolff and his insatiable drive to invent and improve machines that saved lives.
Dialysis machines gradually were refined and improved, but one of the main problems – how do you get a person's blood out, cleansed, and then back into the person's body? - remained a challenge. This brings us to University of Washington professor Dr. Belding Scribner.


Next time: Dr. Belding Scribner, the fistula, and modern hemodialysis

Boom! I say Boom!

Big excitement here last Tuesday - Obama came to town. That had all the news anchors twittering, but the real excitement was that some poor bozo who'd been away for a long weekend at Lake Chelan with his girl friend was flying back to Seattle and crossed temporarily restricted air space. Fighter jets scrambled out of Portland, Oregon, and about quarter to two it sounded like the whole world was exploding here: BOOM BOOM! The house shook, everything rattled - I couldn't imagine what it was - went to the kitchen door and again: BOOM BOOM! and again the house shook and everything rattled.
Very upsetting - we didn't know what was going on, and were looking for any sign of smoke, an explosion? Rick thought a neighbor was removing a stump. JD was in his room and thought a branch had fallen on the house. I didn't know what it was.
I drove up to town to pick up mail and looked for any sign of anything - nothing.
When Drew came home from work he solved the mystery for us: sonic booms, Obama in town, someone violated no fly space. Lordy. The guy in the float plane didn't know what was going on, landed at Lake Union and pulled in to Kenmore Air, the float plane base in Seattle, and he and his girl friend were in their car starting to drive away when someone stopped them and told him, Dude, you are in deep, deep kim chi.
The five o'clock news featured a video taken through a Kenmore office window of the guy (attired in a tank top, shorts, and sandals) having an extremely serious conversation with a Secret Service spook in dark suit & dark glasses. I'm told that Secret Service spooks have absolutely no sense of humor.
The girl friend was babbling to the TV interviewer: "We were clueless. We thought it was a quiet flight. We had no idea. I'm a hairdresser with a salon in Normandy Park!"
Just trying to distance herself from any ties to Al Qaeda, I imagine.
Meanwhile - the sonic booms scared the crap out of people all over Puget Sound, and crashed the 911 system in Tacoma. Among other things.
I guess Obama had a nice lunch at a bakery in Pioneer Square, and appeared at a fund raiser for Patty Murray, by the way. He was in town for four hours, and that was supposed to be the lead story on the five o'clock news, but the sonic booms came first.
I'll bet that pilot never makes that mistake again.

Letting My Freak Flag Fly

My goodness, it has been a long time since I've visited this space.
My friend, Susan, is recovering from her heart attack. She says she "died a little bit" that day. Scared the holy living crap out of everyone, too. But by the grace of God, rapid medical care, and a large dose of clot buster, she came back to the land of the living and I'm so grateful, as is her family, as are her friends. She is celebrating by doing more paintings (see above, "My First Self Portrait," which I really like)and by starting a new novel, which I wish she'd write more of so I could find out what happens to Martha, the protagonist.
So that's good news of a major kind.
The other major news, which you know if you read Rick's blog, is that Rick is now using the overnight cycler machine for dialysis. Yay! But - there's always a "but," isn't there? A qualified yay - the machine is finicky, persnickety, and a fussbudget. Rick has to watch it like a hawk to make sure it primes properly, and then if his first drain isn't large enough to suit the machine it starts giving alarms, and he ends up making phone calls to tech support, and to his PD nurse, Angela, who is a saint, really, at all hours of the night as the machine beeps and boops away. So he's still napping a lot during the day time to make up for the sleep he misses at night, and all is not bliss and happily-ever-after. Actually, when you have end stage renal disease, happily ever after is a pretty slim option, but damn it, you do the best you can, and the machine is both deliverance and pestilence at this point. More deliverance, so Rick is soldiering manfully onward as he and Angela and Baxter, the machine company, try to find the path where this method works best. It all takes time. It still beats going to Seattle three days a week for dialysis.
And it's kind of cool to see Rick walking around looking a little bemused because suddenly he doesn't have to go to Seattle, OR do manual exchanges during the day. Although he did do one today. Like I said, it's a time of tweaking the process.
People keep asking me how I am, how am I doing, what am I doing for ME. Um. Well. I'm somewhere between OK and ready to pop my cork. I could be either of those things, or both, at any given minute. Rick does not need physical care from me; he's fully functional. I hang around the house, do a little laundry, the dishes, sweep a floor occasionally, go out and pull a weed, and occasionally do paperwork like, oh, paying the bills. There are things I do not understand, like why his medical insurance through work paid for everything, and Medicare does not.
Also it seems that even though Swedish Hospital scans his medical insurance cards when he comes in for surgery, the information does not get passed along to the anesthetist or the radiologist, who send bills to his former insurance, which does not pay, and then we get these whopping bills in the mail and Mary starts to hyperventilate until I realize what's going on.
I still do not have medical insurance. I thought maybe I could get some once my Social Security started, but it started this month and I do not have enough money to get medical insurance. I am burning up brain cells, as usual, trying to think of ways to earn money. We'd like to do a Log of the Oatus book, and a Collected Spiritual Smart Aleck book, but these things never get much beyond the idea stage. Still thinking, still burning brain cells. We are going to declare bankruptcy, but, ironically, we haven't been able to afford it. Interesting.
One success: my hair is still growing. A pretty small thing, which requires very little effort on my part, but after two years it's getting long and it feels like an accomplishment. Ask anyone who has let their hair grow out - the accomplishment is getting through the middle stages. Originally I planned to let it get long enough to cut off and donate, but now that it is long, I'm not quite willing to let it go yet. Oh well. The longer I put off cutting it, the more there will be to donate, right?
And how pleasant it is to fuss about something as trivial as the length of my hair when there is so much to think about that is not trivial.
On that trivial note, I think I'll turn in. Blessings to you all. Thank you for all your prayers, good wishes, and material support. You have pulled us through so far, and we love you for it. Pleasant dreams.

My Friend Had a Heart Attack

My friend Susan Bardwell, the painter of the picture in the previous post, had a heart attack today.
I've never met her in person.  She lives down near Houston, Texas, and is a funny writer/journalist as well as a talented artist. David and Jane Shepherd introduced us, via email, and we've had a daily correspondence for the last two (three?) years. Like me, she's a smart aleck; has two adult sons roughly the same age as our sons who live with her and her husband; and has a grandson who lives with them because his father (her older son) has custody, so she ends up being mommy most of the time. Our grand daughter lived with us for almost three years, age almost 2 to almost 5, so I got to be mommy again for a while, also. We relate.
She and her husband produce what she calls a "paperless," The Angleton Journal,an electronic web newspaper they put out every Monday, and she writes a humor column for it. I haven't written a humor column since Rick got sick, but know what it's like and commiserate with her on the misery of deadlines.
My favorite quote on deadlines, and I can't remember who said it, is: "I love deadlines. I love the wooshing sound they make as they go by."
Susan is NOT like me in that she is a pretty good judge of character. I tend to think that everyone's great, unless I take an immediate dislike to someone, and I've often been wrong in my first takes, mostly about that thinking everyone's great. Susan worked for years as a crime reporter for the Houston Chronicle. She certainly got well acquainted with the less attractive side of human character there, and minces no words when she expresses her opinion of same.
She's a fierce mama lion for her family, and loves her whole overextended family in a prodigal fashion.
We came up with the acronym FASTOB, which stands for, "fat, average, sarcastic, tough old broad." Our sisterhood.
Oh, carp, she's just a real great buddy, and I hate it that she had a heart attack. I know she had one, at least, before, in her early 40s, and had some stents put in, so I guess it's not totally out of the blue, but it stinks. It sounds like the EMTs and the local hospital got the clot buster (or whatever) into her before she was airlifted so the obstruction was removed - washed away - I don't know – soon, and by the time the helicopter has taken her to the big hospital in Houston (Herrmann, I think) she was feeling better.
Her husband said she was scared, but by the time they left her at the hospital in Houston this evening she was joking with them. She'll be in the hospital a couple of days at least.
I'm still praying, for her health, and in thanks for EMTs, techs, doctors, nurses, and hospitals. We've spent so much time in the precincts of these people the last year and a half, and have acquired such respect and appreciation for them.
I am hoping she continues recovering well, and after she's home I'm going to try giving her a call. We've never actually spoken to each other. I think it's time.

My Friend Paints; and Watch Out for That Tree

Greetings, Dear Hearts and Gentle People ~
Above you see a painting of a scene down at Tramp Harbor here on Vashon Island. You can see the mainland and a few pale peaks of the Cascades in the distance, off to the east. What's extraordinary about this painting to me is that it was painted by Susan Bardwell, my writer friend down in Texas, who has never been to Vashon Island, as far as I know. A couple of weeks ago when my friend Sonya was here to take care of me (us) when I had surgery, we went down to Tramp Harbor one day to commune with the water and the shore, and Sonya said, "Take some pictures to send to Susan to paint." So I did. I didn't know she'd paint something right away, but she did, and sent me the digital file, which you see here.
I really like it. A lot. Susan has started painting in the last few months, kind of to her own surprise. To hear her tell it she woke up one morning and decided it was time to do something different that was for her and for fun, and painting was it. She's been sharing some of her efforts since then.
In the foreground, the bottom left corner as you look at the painting, you can see the gabion cages, which are hefty wire netting that hold large rocks together to protect the beach and the road from erosion. That's one of the details of this painting that blows my mind. And one of the things you might look at and say, "What IS that?"
It's exciting to me. I am not a visual artist, but I love visual arts. When I try to draw, I can do okay, sorta - my best subjects have been sleeping dogs and cats, and chickens - but I've never been able to bring color into the mix. It is foreign territory. I'm a pencil and ink sketcher, and only every third or fourth year or so.
So watching Susan learn to use space and color and perspective the way she does - Rick says, "I wish I could paint like her. She's fearless!" - is an honor and a great pleasure.
And I'm hoping if I praise this painting highly enough she might send it to me for Christmas.

Watch out for that tree: It's a windy afternoon here on the island. I went out into the yard to whack a few weeds, and then sat in one of the old plastic Adirondack chairs that ornament our yard, and watched the tall trees that surround our house tossing in the gusts as they came and went. I like to sit out in the yard; it's peaceful, and because we are surrounded by trees and there is a circle of sky overhead, I can lay my head back and look at the clouds whizzing by and think about not much of anything.
That's what I was doing until I heard a crack. It was the crack of something in a tree breaking, some part of a large limb or trunk. When a tree goes down, or a big part of a tree, it starts with such a crack and then proceeds to make a lot of cracks which gather and multiply and crescendo until it sounds, I am told, like a barrage of small arms fire, and the noise goes on until the piece that is struggling lets go and falls free, plowing through the undergrowth with a sigh and a whoosh, taking a lot of smaller trees and bushes down with it.
In that undergrowth is exactly where you don't want to be when a tree lets go. Now, I am as foolish as the next person. I sometimes plan what I would do if I heard a tree begin to fall in my vicinity. My plan is to get to my feet and head for the house as fast as possible, on the assumption, perhaps mistaken, that the house would shelter me from the force of the blow. Unfortunately I have lived long enough to know that what I'd probably do is sit there frozen and hope that tree didn't fall on me. A tree went down about twenty feet from our bedroom during a night storm some years ago, and as I heard it go I did not move, just froze there in bed and waited for it to be over. It fell the other way, into the ravine. Lucky.
That is why when I heard that crack I decided to come inside. So I did. And that brings us up to date.

Good News Today

It is Monday, May 24, 2010, and today I went to see the surgeon who did my lumpectomy last week and got the news: NO CANCER.
Then Alice brought me home and we watched "Death at a Funeral" (British version).
It has been a very good day.

I Am No Longer Unemployed

Today was a milestone: I have been unemployed since the summer of 2007, but today that changed. Today I retired.
It wasn't as easy as they'd like to make you think when you go to the Social Security website. They have videos featuring Patty Duke and Chubby Checkers – talkin' about my g-g-generation – telling us how quick and easy it is to retire online. Do it now! It's easy!
It's easy if you aren't as easily confused as I am. I tried to retire last March, because I'd been told to apply a couple of months before I turned 62. Being the good girl I am, I went online and began the easy process.
It was easy right up until they asked, “Are you able to get a job?” I said, “No.”
Big mistake: suddenly I was off the mainline to Retirement City, and shunted onto the sidetrack of the 7% incline of applying for disability.
Why I said I was unable to get a job: first and foremost I have a full time job doing paperwork to make things happen for my husband.
Second, okay, so I can't walk or stand for long because of various accidents that have left me bunged up and arthritic, but I'm not entirely sure that counts because there are plenty of people who can't walk who are employed. In my present condition I admire them quite a lot for making the effort, because I now have an idea of what it takes, but my mind and my fingers still work – sporadically most days, but that's not uncommon at all at any age – and that's enough to work in this society. Except...
Third, I'm over 60. I'm not the employee most places want. It's hard to find a job at any age for most people right now, but more so for what my husband calls the nouveau elderly, and if you doubt me take a random poll of people over 60 looking for work.
So I didn't want to apply for disability, but suddenly I found I had. I screwed up, and I didn't fix it, because I didn't understand how badly I had screwed up. I might be able to get disability because I am kind of disabled, but it would mean more of the kind of paperwork I've been swamped with for the last six months, and I'm tired, and we're broke. I simply wish to retire.
Then, this morning I remembered that I had the number of the man at Social Security who processed my husband's disability claim (my husband qualified easily, and all I can tell you about that is that if you can qualify for disability easily, your life sucks and blows).
I tried calling that number, and the man answered, and I told him what I wanted to do, and he was kind and humorous and helpful and fifteen minutes later, I was retired.
My head's been spinning the rest of the day. My friend Sonya is here visiting and she's heard me say, “I'm not unemployed anymore! I'm retired!” so many times to so many people that I expect her to say, “Enough already!” but she's been a really good sport about it and says she's happy for me.
So if you're thinking of retirement and the Social Security website lures you in with their red, white and blue promises of how easy it is, go ahead and retire online, but be vewy, vewy careful (Elmer Fudd was big for my generation, also).
Be prepared, also: if you watch the cute Patty Duke video telling you how easy it is to retire, you might be walking around the next few months singing in your head, “Because they're cousins, identical cousins just the same...” And if you don't remember that, you might not be part of my g-g-generation.