Eventually This Gets to John Browne

There was a column on my computer, almost ready to go. All I had to do was the final tweaking. I got up this morning, came in to finish the column, turned on the computer, and was greeted by a big red window telling me that my computer files were infected with a Trojan horse.
And that, my friends, was that. My computer was frozen solid. It would not work in my house, it would not work for the mouse. I did not like it.
I shut it down manually and unplugged all the peripherals. It's out in my car now, waiting to be transported to the computer hospital.
One of my first thoughts was, I haven't had this much trouble since I used Macs. I started out on Apple computers because I'd heard they were superior, more user-friendly, didn't get viruses, and didn't crash as often as PCs. Anti-virus sales people always tried to convince me to buy anti-virus programs for my Macs. I did that once. Put an anti-virus program on my Mac. The computer immediately crashed and had to be taken to the Apple computer hospital.
While Macs may be more immune to virus infections, what I found was that they “corrupted.” One little piece of data would mutate, and pretty soon the whole hard drive had a cascade of mutations and the computer would crash and have to be taken...well, you get the picture.
I know that Mac users are devoted to their computers and I'm not trying to argue with anyone. I'm only saying that my Macs crashed a lot more than my PCs. In eight years of using a PC, this is the first time one has contracted a virus. Apparently anti-virus software actually functions on PCs. Except this time. Oh well. Off to the computer hospital.
What am I writing this on? My Netbook, which runs on Linux, which is looking pretty good to me right now. Except all the games seem to involve penguins, for some reason.
Now, an explanatory note for those of you who do not live on the island and don't know what happened to John Browne: on November 22, there was a snow and wind storm that hit the island. A tree fell down across 111th Ave SW, down the hill from the home of John and Vicki Browne. John decided to go down the hill and clear the tree off of the road. He took his chainsaw and went to work. While he was working a driver came along, lost control, and hit the tree. The tree pushed the chainsaw handle into John's mid-section, damaging his small intestine, and bruising his liver, lungs and heart (so I heard - not too sure about injuries to those organs) and shattering his left elbow. He was taken to Tacoma General Hospital because the bridges from West Seattle to Seattle were closed that night with ice, and Coast Guard helicopters could not fly in the storm.
He had surgery to remove some of his small intestine and stitch it back together, and another surgery to put his elbow back together. He was in the ICU about a week then moved to another room, and I last heard that he was going to a recovery facility, or perhaps to one of his children's homes, or even home with Vicki. I don't know the whole straight story but the fact is that he's improving. Now he and Vicki need a little help.
There's a benefit for John Browne at the Red Bicycle on Saturday, December 18. Drop by and support John & Vicki. They have given the island the benefit of their good selves for many years; let's benefit them. Whether you come or not, you can send money to the fund for John Browne at US Bank, P O Box 428, Vashon WA 98070.
Factoid: the first time I met John Browne was when I picked him and another guy up hitch hiking at the intersection of Haight Street and Fillmore in 1966.
Final words for 2010: Merry Christmas, or Solstice, or Kwanzaa (Hannukah's already gone by), and stay warm with your loved ones, Islanders.

How I Write a Blog

Photo: Blogger at work

A young friend who is a graduate student has asked me about the process of writing and posting a blog.
First: I need an idea. Sometimes ideas are handed to me, like “how I write a blog.” Thank you, Amelia.
Sometimes I am interested in something, and I do some research and write about that subject. Case in point: the recent series of columns on the pioneers who developed treatments for renal failure.
Those columns also tapped my personal experience. Personal experience is a rich source of material, and I've now lived long enough and done enough that I can tell stories until everyone in the room is asleep with their mouths open and drool running out.
Occasionally something will happen that catches my attention so vividly I write about it. Latest example: a few months ago President Obama was in town, and some poor guy in a private plane didn't know that the air space over Seattle was restricted during the President's visit. Two military jets scrambled from Portland and flew up here so fast that they caused a couple of sonic booms which (a) shook our whole house, and (b) scared the bewhatsis out of a lot of people in the Puget Sound, thereby causing the 911 system in Tacoma and other areas to crash from the call overload.
So, I get the idea and I start writing. My most used reference is my dictionary. That tells me if I'm using the exact word that conveys my meaning, and how it is spelled. Spell check can be helpful, but it will make suggestions like “collisions” when I really mean Colossians, a book of the Bible. Funny, but not helpful.
Online is my second go-to after the dictionary. I go to several different sites about any given subject because I've found they will say slightly different things and I'm looking for a consensus of information that will be as factual as I can make it.
The writing process is a combination of writing, tweaking what I've written, staring out the window without seeing anything, and looking things up.
I write a first draft that includes everything. Anne Lamott says, “Write a shitty first draft.” (Asterisks were supplied here in the printed version of this column in The Loop, in consideration of Loop readers' tender sensibilities) Anyway, Anne Lamott is right. I write a first draft, then I let that draft sit for an unspecified length of time, anywhere from long enough to eat breakfast to a couple of days. When I come back to it, the serious tweaking and cutting begin.
William F. Buckley said, “Be grateful for every word you cut.” I doubt if Bill and I agreed on much, but that is my number one rule as a writer.
So, I come back to the first draft with refreshed eyes, and cut, re-write, edit and proofread until I'm satisfied. That can take hours, or days.
Sometimes I'll write a whole piece, think about it, and throw it out. Oh well.
It is good to have a photo or illustration with a blog. I prefer to use a photo I have taken, or, if I'm lucky, a drawing my husband has done. Rick's cartoons always have humor, which can range from whimsical to perverse, and I have learned to trust his instincts for what a 'toon should be, even if I'm slightly horrified when he tells me what he's going to draw.
Now I'm going to go eat breakfast.
Okay, I'm back. When I think the piece is as succinct and clear as it is going to get, I post it. I go to my blog page, paste the copy in, upload images, and hit “Publish.” Then I read it and find the typos I couldn't see before. When I'm satisfied with the post, I send out a blog alert to an email list of people who might want to read it. Then I'm free for a while, until the need to write reasserts itself.
That's my process. The blog address is right here, if you're reading this. Thanks for asking.
Post Script: when this was published in The Loop, the caption of the photo said, "Bloger at work." I went back and checked my email from when I sent my column in, and I had typed "Blogger at work." So between my email and publication, the editor had dropped a "g" from the word "blogger." Now, if I had made the typo after writing about how I tried to catch all my typos, that would be ironic. If the editor of the paper, who is supposed to catch and correct mistakes, actually puts a mistake in, that's another kind of ironic, and completely out of my control. So it goes. Sigh.

Kidney Transplants: Not a Cure

Rick Tuel: water worker, cartoonist, end stage renal disease patient, modern medical miracle. Photo by Mary

The first thing the Northwest Kidney Center tells you about having a kidney transplant is that it is not a cure; however, it is the most effective treatment for kidney failure we have at present.
The major obstacle to successful kidney transplants is the recipient's body's rejection of the new kidney as a foreign object. People who have kidney transplants must take anti-rejection drugs for the rest of their lives. That is why a transplant is not a cure.
When transplant surgery was new, it was only done from living donors, and between close matches such as identical twins. The development of anti-rejection protocols made it possible for kidneys to be taken from cadavers for transplantation, so now transplanted kidneys come from both living and deceased donors.
Kidneys from living donors tend to last longer than kidneys from deceased donors, but how long a kidney will last is an unknown. Kidneys from cadavers tend to last 15 to 20 years; kidneys from living donors tend to last longer, and there are people who have been going with a transplanted kidney for thirty and forty-plus years, but some kidneys fail immediately, or within a few years. You never know.
Sometimes living donors donate in a “chain.” Say your best friend Ralph needs a kidney, and you'd like to donate, but your blood and tissue don't match Ralph's. So you donate your kidney to someone who is your match, and a friend or relative of theirs donates a kidney to someone else who is their match, and so on, until some friend or relative of a kidney recipient is a match for Ralph, who finally gets a kidney.
Experience seems to indicate that the majority of kidney donors do fine with only one kidney, and both donors and recipients are required to go through rigorous testing and screening. It costs donors money to donate, by the way. That doesn't seem fair, but there it is.
Potential kidney recipients can be turned down for a variety of reasons. From what we heard at the Kidney Center, you have to be in the pink of health, except of course for your non-functioning kidneys. The committees that decide who will get a transplant do not want to “waste” a kidney when there are so many more people who need kidneys than there are kidneys to transplant. Many people who get on the waiting list for a kidney wait for years. Some don't live long enough to get a kidney.
The immune suppressant drugs recipients must take cause problems of their own: infections because the drugs suppress the immune system; sepsis; a form of post-transplant lymphoma (cancer); and side effects such as unwanted hair growth OR loss; obesity; acne; type 2 diabetes; etc.
A major problem with the immune suppressant drugs is that they are expensive. Not having adequate insurance to pay for immune suppressant drugs is a reason for being turned down for a kidney transplant in the United States. This will not seem important to you until you or someone you love needs a kidney.
My husband was diagnosed with end stage renal disease on October 5, 2009. In the last year he has had multiple surgeries and continual tweaking of drugs to keep him going, and he is now on peritoneal dialysis. Because he had cancer last year, he will not be considered for a kidney transplant until he has been cancer-free for two or more years.
It has been a hard year, friends, but we have been carried through it by you and other people as we adjusted to the new normal. Rick is starting to work again, gradually, just a little bit. If you see him out there spraying paint on the road to mark the location of an underground utility, give him a smile and a wave. He and everyone living with kidney disease is a modern medical miracle.

The Holy Halloween Candle Story

My cousin Charlotte called last night. She said she and Nancy were talking and she remembered the story of the holy Halloween candle, and the two of them decided that she should tell me. So she called, and here is the story, as close as I can make it to Charlotte's telling:
“I don't think you ever went to my house in Tracy. It's an ordinary three-bedroom one-story wood framed house, and it's on a tree-lined street. The whole street is lined with Modesto ash trees.
“Tracy was just a small town when I moved there back in 1977, only about twenty-five thousand people, but now it's grown so much, with condos and shopping malls. There are about 100,000 people there now.
“Around the corner from my house was the Parker Avenue Market, a little mom and pop store. When Nancy and I were kids visiting at Grandma's she'd give us each a nickel and we'd walk to a mom and pop store a couple of blocks from her house for a Popsicle, so we have good memories and we're so fond of mom and pop stores.
“The house had a small front porch, just the tiniest porch, and every Halloween I got the biggest pumpkin I could find and carved it and put it out on that porch where the kids came to trick or treat.
“Well, this one year I went and got this huge pumpkin and I got it all carved and put it out on the porch and then I went to get a candle, and I couldn't find one! So I went to the Parker Avenue Market for a candle.
Parker's Market had every little thing you might need – light bulbs and milk and everything else, but when I got there they only had one candle left, and you know what it was? It was a holy candle. One of the ones in the glass holder.
“Well, here I am, this Christian Baptist Catholic Pentecostal girl looking at this holy candle, and what am I going to do? This is the only candle Parker's has left. So I made the sign of the cross, and I said, “Oh, Lord, please forgive me for this sacrilege.” Then I bought the candle and went back home and put the holy candle inside the pumpkin.
“Pretty soon kids started coming for candy. The little ones came early with their parents, and then as time went on the older kids came. There were a lot of trick or treaters in those days. I think I had close to a hundred and fifty of them.
“It got later, after 8:30, and they weren't coming any more so I decided to turn off the porch light and close up shop. I was getting ready for bed when all of a sudden I remembered the candle.
“Now you know I'm very safety minded, and I was careful with candles because it was a wood frame house with a tree hanging over it, so I didn't want to leave that candle out. So I went out to get the candle to put it away, and it was gone! It had been stolen!
“I never figured out who stole it or why – was it kids being pranksters because it was Halloween? Did someone need a candle? Did they take it because they thought using it in the pumpkin was a sacrilege? Were they just thieves?”
Whatever the reason, that's the only candle that was ever stolen from one of Charlotte's Halloween pumpkins. We'll never know why.
So that, dear hearts, is the story of the holy Halloween candle. Wishing you all a good Halloween however you observe it, and a blessed All Saints' Day on November 1, when we remember all who have passed from us this year and in the years past.

Miracles Have Their Downsides

Photo: Rick at his first dialysis session one year ago. That's Jean, the RN, reading dialysis educational material to him. Jean experienced acute renal failure and was on dialysis herself a few years ago. She recovered. Many of the people who work with dialysis patients have experienced renal disease themselves or in loved ones.

It is miraculous what medical, scientific, and engineering geniuses have been able to do for people with kidney failure. Millions of lives have been saved by dialysis.
But what is it like to be saved? Fact is, the only reason anyone would do dialysis is to stay alive.
Think about it: your kidneys work every minute of your life, waking and sleeping, filtering out toxins, removing excess fluid (urine) from your body, keeping your body in chemical balance. Dialysis tries to do all that in 12 hours a week – three sessions of four hours each. Your blood gets sucked into tubes, run through filters, treated with various additives. You are tested to monitor blood composition and chemical balances so that kidney techs can do by hand what your kidneys used to do without you having to give it a thought. You have endless medical appointments, exams, tests, and surgical procedures. The medical community is constantly tweaking you, trying to keep you in balance and alive. Fistulas develop aneurysms; you get headaches; you pass out from low blood pressure (the Aid Car is called to the Kidney Center almost every day for a crashing patient); infection is a constant threat; your diet consists of chicken and white bread and not much else.
My husband Rick would go in for dialysis three days a week, and spend the other four days of the week exhausted and recovering from dialysis. When he went on Monday, Wednesday, and Friday, his favorite day of the week was Sunday. By then he was somewhat recovered from his Friday dialysis and he didn't have to go anywhere.
Like him, most people who are on dialysis are not able to work. Like him, most have to go on disability, or retire.
Sometimes the techs who hook you up to the dialysis machines don't hit your fistula on the first poke with the size 16 needles. Sometimes they get it wrong and cause an “infiltration” of blood into the tissues of your arm. This happened to Rick early in his dialysis experience, and his entire left forearm turned the color of a ripe plum. We have pictures.



Photo: Rick shows off his fistula

The dialysis techs work hard and have to move fast. They dismantle used tubing and filters after a dialysis session, clean the chair with antiseptic solution, and set up the new, clean, sterile filters, tubing, IV bags, iron and other supplements that are added to the patient's blood. They hook the patient up and monitor the patient – actually, they monitor several patients at a time - during dialysis. They are the foot troops in the battle against kidney failure. I read that they are paid on average $20 to 30 thousand dollars a year.
Have you tried to live on or raise a family on $20 to 30 thousand dollars a year lately? Granted it sounds like a lot of money to me right now, but that's from our perspective here in disability land. I'm saying that it's a shame that people who work so hard and are necessary for the survival of renal patients are paid so poorly. It's part of that inverse economic model we live in where the more important your work is, for example raising children, the less pay and respect you get.
Still, the techs do their jobs as quickly and efficiently as they can, while the patients sit in their individual worlds, reading, watching TV while wearing earphones, or sleeping, while time goes by in an eerie silence broken only by the alarms and beeps of the dialysis machines. Most patients are grateful to be alive. Patients are told that the more you dialyze, the longer you'll live. Dialysis is a miracle.
One day while Rick was waiting for his chair at the Kidney Center a frail lady in a wheel chair who had finished her dialysis was parked next to him. She reached a bony pale hand over and rested it on his arm. “How do you stand it?” she whispered to him. “How do you stand it?”
It's a valid question.
Maybe next time we'll talk about kidney transplants.

Peritoneal Dialysis

Photo: our Ricky enjoys the overnight cycler. I was going to use this picture for the article in the newspaper, had it all cropped, formatted, and ready to go, then changed my mind because I spotted something in the picture that I didn't think we needed to put in the paper. See if you can spot what it is. Much more private posting the picture on the web, right?

Part three of a series on the treatment of renal failure. Why? Because a year ago my husband's kidneys blinked out like a couple of light bulbs, and renal failure has been the center of our lives since. Writers are always told to “write what you know,” so – renal failure. Part 3:
Peritoneal dialysis (PD) is a way of cleansing the renal patient's blood by putting dialysate, a fancy word for dextrose solution (sugar water), into the peritoneum of the renal patient, letting the solution sit there for a few hours (this is called the “dwell”) pulling toxins and extra fluid across the peritoneal membrane, and then draining the dialysate and putting in fresh dialysate and starting over. No bloodletting involved.
The peritoneum is the cavity in your torso where your vital organs and your intestines live. The cavity is lined by the peritoneal membrane, a sac that holds everything together and is rich in blood vessels.
The problem when PD was first used was that the abdomen had to be freshly punctured (this would be bloodletting) for each dialysis procedure, in effect putting the patient through surgery once or twice a week. Attempts to leave catheters in place were not successful because the site of the puncture or the peritoneum became infected.
PD was being used and improved during the same years as hemodialysis, starting before World War II, but was not used commonly until the 1980s. This was because Henry Tenckhoff designed a catheter that would not cause infection.
Dr. Henry Tenckhoff began working with Belding Scribner at the UW, that hotbed of dialysis research, in 1963. When Tenckhoff began working with PD patients, he had to go to their homes twice a week to perform the minor surgery of inserting a catheter into the patient's abdomen.
Dr. Tenckhoff observed that PD worked well and that PD patients did better in many ways than patients on hemodialysis. Eventually he developed what is now known as the Tenckhoff catheter, which could be placed into a patient's abdomen and left there, and with proper care would not become infected.
The Tenckhoff catheter is a piece of tubing which enters the patient's abdomen and has a coil inside the peritoneum. This inner bit has little holes in it, like drain field pipe on a much smaller scale. The holes facilitate the entry and exit of the dialysate. The outer bit of the catheter is a length of tubing with a connection on the end for attaching a tube to drain and fill the peritoneum.
Once patients have a Tenckhoff catheter placed in their abdomens and they have healed from the surgery, they are trained on how to do PD and then they do it at home, with frequent monitoring by a PD nurse. Testing is done frequently to monitor how the patient is doing and whether dialysis is working. Sterile dialysate is delivered to the patient's home about once a month.
There are two kinds of PD: manual, and machine assisted.
In the manual variety, the patient typically does four exchanges a day in which dialysate is drained from the peritoneum, and fresh dialysate is put in and left in – the “dwell” - for four hours or so, and then drained and replaced. An exchange takes 30 to 40 minutes.
In machine assisted PD, the patient hooks up to a cycler machine at night which does exchanges while the patient sleeps. Unfortunately the machines set off alarms if anything isn't quite right – not enough dialysate draining is the most frequent problem. So these patients might not get much sleep at night.
My husband started on manual PD, which turned out to be a full time job, but now he's on the overnight cycler machine. He feels and looks better than he has since he became ill over a year ago. We like PD, alarms and all.
Not everyone can do PD, but it's an excellent way to go if you can.
Next time: Kidney transplants

Hemodialysis Gets Serious

Photos, left to right: Dr. Belding Scribner, inventor of the shunt; Wayne Quinton, who built the first shunt; Dr. James Cimino, Dr.Kenneth Appell, and Dr. Michael Brescia, who pioneered the AV fistula which is used for hemodialysis today.

Dr. Willem Kolff built the first dialysis machines, but they were made practical for treating end stage renal failure by Dr. Belding Scribner at the UW.
Scribner grew up in Chicago, got his medical degree at Stanford and did his post-grad work at the Mayo Clinic. He joined the faculty of the School of Medicine at the UW in 1951. Like Dr. Kolff, he was deeply affected by the deaths of renal patients.
Dr. Kolff's dialysis machines could get acute renal failure patients through a crisis until their kidneys began to function again, but patients with end-stage renal disease could not be saved. Surgery to open up access to veins and arteries damaged blood vessels so that after a few treatments it became impossible for doctors to access a patient's blood.
Scribner said that one night in 1959 he woke up with the idea for a shunt in the patient's arm, using plastic tubes, one inserted into an artery and one into a vein, with the tubes connected by a piece of tubing in between dialysis sessions. He brought his idea for the shunt to Wayne Quinton.
Wayne Quinton was a medical engineer at the UW in charge of building, maintaining, and inventing medical instruments for the Medical School. Quinton figured out how to build the shunt Scribner had envisioned. Suddenly it was possible for people to have long-term dialysis, and end stage renal disease went from fatal to treatable.
Right: the Quinton-Scribner shunt

There were only six dialysis machines in Seattle, though, and there were more renal patients than could be treated. Scribner decided that he would not make the decision of who would get dialysis. A committee was formed to review cases and decide who would receive treatment. The formation of this committee is recognized as the beginning of bioethics. Such committees decide who will and will not receive organ transplants, for example.
Dr. Scribner worked with the King County Medical Society to found the Seattle Artificial Kidney Center, which became the Northwest Kidney Centers, in January, 1962. It was the first out-patient dialysis center, and was the model for how hemodialysis is done today. Currently any patient who needs dialysis gets dialysis.
Scribner and Quentin had revolutionized hemodialysis, but the shunt had problems – clots tended to form in the tubing, for example.
Comes now Dr. Kenneth Appell, who grew up in Queens, New York. After serving in the Navy in the South Pacific during World War II, he returned to New York to complete his medical and surgical training.
Dr. Appell installed many of the Scribner shunts, but was not happy with the problems they had, chiefly clotting in the tubing. He came to believe that it would be possible to create an arteriovenus (AV) fistula in a renal patient's arm. This means that an artery would be stitched together with a vein, with a hole (fistula) in between that would allow arterial blood to flow directly into the vein, thereby avoiding the problems of the shunts. Arterial pressure on the vein causes it to enlarge. It takes weeks to months for a fistula to “mature,” but then two needles can be inserted into the vein regularly to remove blood for dialysis and put the filtered blood back into the patient's body. This is the “gold standard” for hemodialysis today.
Two of Appel's interns, Drs. James Cimino and Michael Brescia, began doing Dr. Appell's AV fistula surgery in 1966.
Right: a drawing showing how an AV fistula is constructed within the arm


Since the 1960s, millions of lives have been saved by hemodialysis and the techniques developed by Drs. Scribner, Appell, Cimino, and Brescia and their teams.
As for Wayne Quinton – in 1959 he quit his job at the UW and started a business called Quinton Instruments to market his inventions which the UW declined to develop. Most famous of these were the Scribner shunt, and a treadmill he invented for cardiac stress tests. Every treadmill you see today can trace its history to the self-winding mind of Wayne Quinton.
Right: A drawing Rick made of his "wristula" in December, 2009, when he was healing from the surgery