Thursday, August 26, 2010
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
Saturday, August 21, 2010
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.
Tuesday, August 10, 2010
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.