The Day After The Latest Surgery

Greetings once more from the Northwest Kidney Center on Delridge Way in West Seattle. Dropped Rick off here around two and went off to have adventures - i.e., got a new battery for my cell phone. Got back around four and discovered him sleeping quietly in the dialysis chair. He had to have shots today, and after he has shots he has to wait for a while before getting hooked up to the machine. I imagine this gives the shots time to soak in before dialysis filters everything out of his blood.
He did have his seventh surgery yesterday - old catheter out, new catheter in. This surgery has turned out to give him more pain than most of the previous ones.
We got home from the hospital last night and both of us dropped into bed. I was fully clothed, and slept straight through until ten this morning, over 12 hours, and I don't think I moved much during that interval. I was tired. Rick was in a world of hurt. He says it's better today than it was last night, so we look for improvement in the pain area as time goes on.
You can see why I did not want to disturb his sleep in the chair just now.
Our thanks and appreciation to all who have inquired how he is doing. The hope of perhaps being able to do PD again has him doing well. We know it might not work, but at least he has a shot at trying.
The Kidney Center is set up for people having dialysis. It is not set up for spouses or other family or friends of people having dialysis. That is why I am sitting in my car, netbook propped on steering wheel, typing away. I am sorry to complain about this; it is my nature to complain I suppose. They do provide free wifi.
That's about it for today.

A Ray of Hope, a Roasting Chicken

Mary here:
We live in interesting times here at Casa Tuel.
Rick is over at dialysis this afternoon. I splurged and bought a roasting chicken, which is in there making the house smell good as I type. Making the house smell good is the reason I decided to roast a chicken. It will be nice for Rick to walk in later tonight to the aroma of roasting chicken.
And it might taste good, also. We'll see.
Here is the progress on Rick's dialysis situation: His nephrologist and his vascular surgeon told him he was at the end of the road for peritoneal dialysis because of his drainage problem. What this means is that he'll be stuck on hemodialysis for the rest of his life. He was extremely bummed out. Hemodialysis keeps him alive, but it's not the kind of life he had for the first 64 years. It's a life of going to hemodialysis and then recovering from hemodialysis. Rick has never been a lie around and do nothing guy. He's been a get up and go to work guy.
We are not sure why, exactly, but the vascular surgeon has decided to try again. On the 15th of June Rick is going in for surgery (his 7th surgery since last October). The old catheter will be removed, and a new catheter will be put in on the other side of his abdomen. The new catheter might drain better than the old one. It might not. We don't know. The surgeon is going to put the new catheter in, though, and after a period of recovery, Rick will try peritoneal dialysis again, and we'll see if the new catheter drains reliably.
The present catheter drained fine, sometimes, but about half the time it didn't drain well, or at all. This one may be no better, but Rick is highly motivated to find out, and perhaps that's why his doctors are going to try again. I don't really know.
He said today as he was getting ready to leave that if this catheter doesn't work he's going to ask for a strong anti-depressant. I've been thinking about that, too. If this catheter doesn't work, if his insides simply are not built for this type of dialysis, he'll be stuck on hemodialysis forever. In which case – well, we'll cross that bridge when we come to it.
Oh – I checked our bank balance today, and some mystery person has put $50 into our account. Thank you, mystery person. Bless you. The good financial news here is that Rick's disability payments have started, so we have an income for the first time in months. The bad news is that it isn't much and we're probably going to declare bankruptcy. The other good news is that I'm retired! The bad news there is that I won't see my retirement check for another two months. Oh well. We've made it this far. We'll make it until August.
And you'll note we still have the internet. Mmmm. I like the internet.

But At Least He Has Time to Draw and Write

It's Wednesday night, which means tomorrow is garbage day. Garbage pick up - there's something I could cancel, but it would cost about the same to haul the garbage to the dump ourselves, and we'd have to do the heavy lifting, so maybe I'll keep that service.
Anyway, we'll put the garbage out tomorrow. Hope we remember first thing in the morning.
Rick goes to see Dr. Oliver tomorrow. Dr. Oliver is his nephrologist. We like her - she's caring, and compassionate, and encouraging, and a good doctor as well. She knows her kidneys.
Things have not been great on the dialysis front these last few weeks. Rick continues to go to hemodialysis, and tomorrow we'll talk about whether he can go back to doing peritoneal dialysis at home.
It turns out that his compact, wiry little body works against him in peritoneal dialysis. His organs are packed so tightly that they tend to flatten the catheter inside of him and prevent him from draining dialysate as well as he is supposed to, or as is optimal for using this method. Consistent draining is a requirement of the over night cycler, which is looking less and less like an option. He tends to drain eventually - but not immediately. The worst part of that is that he develops edema.
Having to stay with hemodialysis would be a bummer, on the one hand. He has to drive into Seattle three days a week and watch his blood get sucked out, filtered through a machine, and then pumped back into him, and he's tired out by the process. On the other hand, there is the big plus: he gets to stay alive.
This is the trade-off of kidney failure in our time and place. You have to have dialysis or a kidney transplant to survive. Those are the choices.
Rick hopes to return to peritoneal dialysis, anyway. Discussing that is going to be a big part of our meeting with Dr. Oliver tomorrow. That, and his persistent cough.
Stay tuned.

The Great Vashon Earthworm 1974

Illustration by Rick Tuel. He did the black and white cartoon first, and then our friend Susan Bardwell sent him some watercolor pencils, so he colored it in. Here you have both versions.
"Scientists unearth fabled Palouse worm" said the headline on the front page of Section B of the Seattle Times on April 29. Rick's interest was immediately caught, as was mine.
A few years ago Rick told me the tale of a giant earthworm he ran into back in 1974 while working for Masahiro Mukai, owner of VIPCO. Mr. Mukai and VIPCO put in many water systems and septic systems on Vashon Island, and laid a lot of pipe in the process, between the end of World War II and 1980, when Mr. Mukai retired. In recent years Rick has dug up and repaired pipes and connections he put in back in the 1970s.
In 1974 Rick was a young man who had mastered the art of using a shovel, and one day he encountered a worm. Not just any worm. A HUGE worm. He told me about it a few years ago, and I went online to look up "giant earthworms," which led me to the Palouse earthworm (Driloleirus americanus).
It is indeed fabled - said to be up to three feet long, pink or albino, and emitting a fragrance like lilies. It was common in the Palouse region of Washington state back in the 1890s, and three-foot-long specimens were reported, but not many had been seen in recent decades, and none were more than half that long.
Now we come to "Jodi Johnson-Maynard, a University of Idaho associate professor and a soil ecologist specializing in macroinvertebrates," (who) "continues her years-long pursuit for just this elusive giant white worm with a fresh project for the summer of 2009."(1) That's what it says about her in the Wikipedia article about the Palouse earthworm. There is a whole lot more information about giant worms on the web than there was the first time I looked them up.
It was Ms. Johnson Maynard's graduate student, Shan Xu, and a research support scientist named Karl Umiker who on March 27 of this year discovered a group of earthworms - an adult, a juvenile, and three egg cocoons - which they believe are Palouse earthworms.(2)
The adult has been dissected in the interests of science, first to identify its DNA and then to provide a comparison for future worm identification.
Rest in peace, adult earthworm.
Grad student Xu said she did not sniff to see if the worms smelled like lilies, and they did not spit. She described them as "very gentle."
Well, so that's the latest on the Palouse earthworm, and you can read all about it at Wikipedia.
In response to the Seattle Times story, Rick wrote this letter to the editor of the Times. Let's let him tell his worm story:
"Editor, the Times:
"I was fascinated by the report in April 29th's Northwest section by Sandi Doughton, 'Scientists unearth fabled Palouse worm.' I've lived on Vashon Island since 1971 and have wanted to know more about these giant worms since 1974.
During the summer of that year I was working for a contractor installing a 4-inch water main on the west side of Asta Lane SW close to the island's north end ferry dock.
"We had opened about 75 feet of trench from the intersection with SW 112 street to a depth of 3-1/2 feet, and I was clearing the bottom in preparation for laying in the pipe. The soil was coarse and sandy so I was watching the trench for signs of collapse when I noticed a dimple about the size of a walnut, about six to eight inches below ground level, begin to appear in the sidewall. The dimple became larger as it bulged outward and sand began to fall out of it an into the trench. Shortly, the business end of a chubby earthworm appeared and tentatively began to feel its way out of its tunnel and down the sidewall.
"It took several minutes for it to reach the bottom, a good three feet down, before releasing its anchored tail from its tunnel and dropping to the bottom of the trench in a heap. Lengthwise it looked more like a snake but in every other respect it appeared to be the most enormous earthworm I had ever seen.
"The Palouse earthworm is said to have an aroma of lilies; this worm smelled like cucumber.
"Now nearing retirement, I can say I have opened many a trench and excavation on Vashon Island since that day without ever encountering another such magnificent specimen again."

Rick did remark that he asked Mr. Mukai if he'd ever seen such a worm in his excavations on Vashon, and Mr. Mukai said, "Oh, yeah, I've seen some of those things."
So - the question is: Have YOU ever seen one of those things? We would love to hear from anyone on Vashon or Maury Island who has encountered a giant earthworm. So would Ms. Maynard-Johnson, who, when I emailed her, said she'd like to hear if anyone else has seen a giant worm here.
Contact us at shipoftuels@hotmail.com, subject line "Giant Worm" so I can find you in the spam filter, and tell us all about your close encounter with giant worms.
And then if you really want to see some big worms, check out the Australian Giant Gippsland earthworm on Wikipedia - yikes.
(1)Wikipedia article, "Giant Palouse Earthworm"
(2) Seattle Times, "Scientists unearth fabled Palouse worm," April 29., 2010

Our Interesting Week

Photos: Rick & clouds from ferry dock Wednesday afternoon; Blake Island and rain squall, also Wednesday afternoon. Photos by Mary
One thing we have learned about the people at the Kidney Center – people who work with people in renal failure – is that they are ruthlessly honest, direct, and decisive about maintaining and improving the health of their patients. This is a good thing, and can be a little breathtaking.
Rick had to go back to hemodialysis a week ago, because his PD catheter was not draining right. He was scheduled for hemo again on Monday; surgery to repair his catheter on Tuesday; and hemo again on Wednesday and Friday. Next week the modified (replaced? Reset? I really am not sure what was done) catheter will be flushed, and soon (we have not been told when) he will be training again to use the overnight dialysis machine. We think that because a truck delivered enough supplies for the overnight machine to fill one-third of our living room. We consider this a sign that overnight dialysis is a-comin'.
So that was Rick's week, and those are the expectations for him. He is still recovering from the surgery – I don't care how small the incision or sharp the instruments, getting a hole cut in your abdomen is an insult the body does not take lightly.
Now, Rick has been saying since last October that he has had to get used to this medical stuff being all about him. He has said frequently, “It really is all about me,” kind of like someone in therapy repeating an affirmation they don't quite believe. What it means is that he understands that his life depends on his being taken care of, and his doing the right things, and his accepting the attentions and procedures that are all aimed at keeping him alive and as healthy as possible for, as he says, a walking dead person.
And that has been what we've worked for all these months.
I have been in charge of the paperwork, and filling out applications, and finding and copying and printing out documentation for these applications. As a result he is going on Medicare as of May 1, and will also be enrolled in a Kidney Disease Program. Also as a result I will have no medical insurance as of May 1.
Knowing that my insurance was ending, I made appointments for various exams and tests. The colonoscopy went beautifully. According to the doctor, my colon is in great shape. This was good news. Then I had a mammogram.
Not so good news. There was something that needed to have an ultrasound. OK, let's get it done before the insurance expires. So I had that done Tuesday morning, coincidentally the day Rick was scheduled to have his catheter surgery. Well, what the heck, we were going to be at Swedish all day anyway.
So I had my ultrasound in the morning, and saw this little black rock in my breast, and was told I needed to have a needle biopsy on it. OK. When? I have three more days of insurance. Well, how about this afternoon? OK.
So I dropped Rick off at surgery intake, walked over to the Breast Center, and had a biopsy, which I watched on the computer screen, and it was fascinating. At the end a little metal clip was fastened to the lump so it would be easily identified in later mammograms.
Then I walked back to the family surgery waiting area and had the usual nap I take while Rick is having surgery. When he was awake, they called me, and I went to the recovery area, which has become all too familiar to us the last six months, and after a couple of hours he was considered awake enough and full enough of painkillers to be released, and I took him home.
I've been telling people that I cannot recommend having surgery on the same day as a first date. No, this is the province of people who have been married for 30 years. Go back and read your wedding vows, and you will realize that they were written with days like this in mind.
So the two of us have been recovering from our various procedures the last couple of days – make no mistake, his was much more serious than mine, but I am still sore and feeling the effects of my little procedure.
Today I got the phone call on the results of the biopsy: not cancer. Yay!
But.
But? Whaddaya mean “but?”
But there are atypical cells, and the lump has to be excised and examined to make sure there is no cancer, or if there is, to treat it. Cancer is unlikely, but they want to make sure.
So I called the breast surgery center and made an appointment to meet with a surgeon next week. When I mentioned that I am losing my medical insurance, the nice lady who made the appointment mentioned charity, and said a Swedish social worker would call me by Monday.
To my friends and family I have not told about this situation, I apologize if you are reading it here for the first time. We've been busy here, and I've been treating the whole breast situation as background noise to doing what we have to do to maintain Rick's health.
The little black rock with the clamp in it will be removed, and we'll find out if there is cancer or not. Chances are good that it is not cancer, but if it is, then finding it and treating it is a good thing. This is one of the things I've learned from hearing “cancer” as a diagnosis twice with Rick. It's stunning, but finding it and treating it is the best thing you can do.
So in this I have to realize that “it's all about me.” Kind of like a therapy patient repeating an affirmation she doesn't quite believe.
I foresee more paperwork. Sigh.
I am grateful: to Swedish, to good doctors and nurses, to friends and family who have loved and supported us all the way, to God, and to the constant reminders of what is real, and true. I hope to have good news in a couple of weeks. Good news, and another incision to recover from. It's good to be alive.

Sometimes You Think Something Is Going to Be Bad, and It's Not. Yay.

Rick writes:
4-24-10 Saturday
Yesterday's return to hemo was not so bad. I kept myself as motionless as a stone for four hours and had no serious cramping until bedtime.
The edema I've been unable to get rid of for a month on PD disappeared during the 4 hours of hemo. They pulled off 2.2 kilos of water weight during the time (one of the causes of cramping is dehydration).
I hope the coming week goes by quickly. It's going to be another hard go-go marathon for which I may need Mary's help by Wednesday, to get me to hemo after Tuesday's mid-afternoon surgery.
On Monday, Mary's going into the court house to see if we're actually having a court trial starting up with the ****** Case (name concealed to protect all involved). The lawyers were supposed to have a meeting last week to see if it was possible to settle out of court but no one contacted us to divulge the results. Likewise we've received no information on whether the trial has been put off due to a lack of available judges.

Mary writes:
You know how sometimes it seems like everything happens at once? This is one of those times for us. I'm filling out all kinds of applications for various programs for Rick and for me; tomorrow I have to go in and see if there is a trial I'm supposed to be attending, and whether I am or not, after that I have to go to various agencies and offices to turn in applications & documentation. Don't know when I'll get home. Rick has dialysis in the evening, so we'll be two ships passing in the night, so to speak.
Thanks and a tip of both our hats to friends Pen & Kathy who fronted us a ferry pass which will enable us to both go to Seattle and make it home this week without having to both spend from early in the morning to late at night in town.
This week is the last week I have medical insurance, so I'm going to have an ultrasound Tuesday morning and then stick around while Rick has his surgery Tuesday afternoon. Wednesday it appears I'll be driving him in to dialysis. Thursday we may just pass out. Unless I have to be in a courtroom.
The court trial: a person fell off one of our porches two and a half years ago and broke an arm, and has refused to settle with our homeowner's insurance company ever since, and is insisting on a court trial. The trial has been scheduled to start tomorrow, Monday the 26th, for months, but now may not go forward and may be continued until who knows when. I wish someone had given me a call on Friday to let me know for sure the trial was off for Monday. Sure would simplify my life. I wish I didn't have to be there, but Rick and I are the ones being sued, so I guess one or both of us needs to show up, and he's busy staying alive, so I'm it.
Hope your week is more tranquil & peaceful than ours will be.

Back to Hemodialysis

Rick writes:

4-21-10 Wednesday
Not much time for writing this month and this week has been consumed with training to use the PD cycler. A crisis developed among the PD staff on Monday just as training commenced, which threw a glitch, which I'll describe technically as a monkey wrench, into the works. Instead of transitioning smoothly into cycler training, I've been instead cycling to different dialysis centers to keep on track.
Nurse Angela has been concentrating on the erratic track record of my PD catheter, which hasn't been performing well. It produces drains which are low and then abnormally high later on, making the daily fills hard to predict and hard to calculate. Today she sent me back to the hospital for an x-ray to see if constipation was the problem. By the time we got that done, the PD clinic was closed so I left the disc at the front desk for Angela to see tomorrow. The x-ray tech showed me the pictures before I left and everything sure looked clear to me but Angela will make the call when she sees them tomorrow morning.
I tried to leave the x-ray at the desk in the PD clinic but it was about 18:00 when I got out of the hospital and the 4th floor wasn't accessible for the elevator by that time.
4-22-10 Thursday
Angela called at 07:30 wondering where the disc with the x-rays was. Apparently I was supposed to leave it at the 4th floor desk after all and she called back a half hour later after picking it up downstairs.
She agreed the film looked clear (no constipation) and said it was pretty plain that the PD catheter was installed too high in the abdomen and had to be surgically repositioned.
Sigh. This is a big setback. I hope I don't have to wait too long for the surgical procedure to get set up.
Not Much Later:
Well, I sure didn't need to worry about waiting. Before the morning was out, virtually the entire medical support group called almost simultaneously. I'm off PD and the cycler and scheduled to go back on hemodialysis at West Seattle NWKC 16:00 to 20:00 tomorrow afternoon until further notice. No word on a surgical date but I'll bet I don't have to wait too long for that to get scheduled. Either.
I called Water District #19 and passed on the bad news. Going back to work soon is out the window. Again. Sigh.
4-23-10 Friday
Very impressive! Dr. Pham's office at the Polyclinic called this morning to arrange a surgery date and I opted for the earliest possible date which is Tuesday, April 27th, at 14:15 at the Swedish First Hill campus. The sooner the better! I also scheduled the follow-up appointment for May 11th at 11:00.
Yesterday at Dr. Oliver's suggestion I dumped the last bellyful of PD dialysate from yesterday morning's 2000 ml refill. The troublesome catheter produced only 1700 ml, even after an hour and a half of concentrated effort to get it all out.
Now I'm halfway mournful that the tunnel catheter is gone, much as I hated it. They'll now be bleeding me out through the fistula for the next two or three weeks. I'm just a mass of contradictory emotions at the moment, none of which have any basis in logic. The most illogical of them all is the feeling of abandonment I have for the PD staff for pitching me back into the cauldron of hemodialysis like a reject in a pinball machine.
Thank God for the antidepressant.

Mary writes:
What Rick does not mention here is edema, which was the great evil produced by the non-draining catheter. Fluid has been accumulating in his body, visibly in his feet, hands, and face, not so visibly in his lungs and heart. This is Not Good.
The advantage of the dialysis center machines is that they can remove fluid from the system, eliminating the edema.
The disadvantage to that is that Rick gets severe cramps when the machine removes fluid from his system.
It's a trade-off.
We are not overjoyed, except that the medical people seem to be moving fast to fix what has gone wrong.
Rick is most disappointed in that this will put off his going back to work, as he noted above. He had his hopes up with his training on the cycler.
"Every bump is a boost, Pinky." That's what his grand dad used to tell him. The boost to this is that apparently he was never going to be able to use the cycler machine successfully with this catheter, so fixing it will get him closer to trying again.
And with the edema cleared out of his system, he won't sound like he's underwater when he coughs anymore. I hope.