Monday, October 4, 2010

Rick's First Day Back at Work

Photo: Working man having lunch.

Today was the day! Rick went in and did locates for the water system for four hours this morning. Then he came home to have lunch and take a nap. He's going back in on Wednesday. They are starting him easy, which is a good thing, because he sure isn't up for difficult.
God bless you, Water District 19, for standing by Rick and holding his job for him. You rock.
Tomorrow will be the one year anniversary of Rick's being diagnosed with end stage renal disease, and the beginning the great adventure of living with and learning about kidney failure and dialysis. Today is the first time he has worked since then. Now we wait and watch and see how it goes.
Meanwhile, having finished lunch he says he's off for a little lie-down.
In other news, I made oatmeal chocolate chip cookies this morning. I replaced half the sugar with Splenda. We are now sampling the cookies to see if they're any good. Cannot make a definitive statement based on one cookie. Must test more.
Splenda may make them less caramelized in taste, but they seem OK to me. While it is good in theory to have less sugar, no one has produced a fat-free Crisco so far as I know. There is no replacement for chocolate chips, either, and there had better not be. Heresy.

Wednesday, August 4, 2010

A Good Time Was Had by All

Kanout Mfg. rides again! Photo by Ariel Howie
Now that I'm starting to catch up a little, I want to tell you all about Chris & Irene, Ariel & Glenn, coming to visit us in July.
Chris Howie is Rick's old buddy and music partner. They first met in high school days down in Marin County, and they came up here in Oatus, the 1946 Dodge flatbed truck Chris found, in 1970. They built a house on the back, and that was their lodging on that wild ride from California to Washington.
When I first came to Washington I met the two of them and played music with them and decided to move up here. It was sort of like that. We performed as Kanout Mfg. Company for a year or two.
Chris and his wife, Irene, moved over to Spangle, a town just south of Spokane, back in the mid-90s. I think the original impetus for moving over there to a farm was to raise ostriches. Once they got over there, though, they decided to get out of the ostrich business. Chris met people with whom he plays music over there.
Chris's adult daughter, Ariel, lives in Seattle, and she and her sweetie Glen came out with Chris & Irene and they made a day of it here on the rock.
We ate a lot of food that they brought, Irene & I got to visit & catch up, and then all three of us played some of the old songs - songs we sang many times years ago when we were young and took the music for granted. Now it's a blessed gift to be able to play it and sing it together again.
I'm going to try to load some more photos here - blogspot is being recalcitrant! Wish you could have been here. It was a lovely day.

Shh...Things Are Going Pretty Well. Keep It Under Your Hat.

Rick getting ready to hook up to the cycler
Mary writes:
Summer finally arrived in the Northwest a few weeks ago, bringing with it a lightening of attitude with the lightening of the skies, at least around here.
Rick has made the successful change over to peritoneal dialysis, and is even using the overnight cycler machine, which for months seemed like the unattainable holy grail of dialysis. We didn't think it was ever going to happen for a while there, and now it is happening.
So far he is not experiencing the edema he had the last time he was on PD, which is good. He's still a "high transporter" - absorbing the dialysate across the peritoneal membrane into his body instead of the dialysate absorbing toxins across the membrane and then carrying them out of his body. That happens, it's working, but there is a problem with his one manual exchange a day not draining enough when he goes to bed at night. he goes in to start training with a new dialysate fluid which is resistant to being absorbed by the body. This may mean he won't have to do any exchanges during the day at all.
And that may mean that he can finally, at last, TA DA, try going back to work!
But we won't know for a while. Making a success of peritoneal dialysis seems to require a process of tinkering and tweaking, to get all the procedures, supplies, and machines working as well as possible. It takes time.
Hooking up to the machine at night is a lengthy process which Rick follows step-by-step each night. I stay out of his way so as not to break his concentration. This machine is keeping him alive, and it must be difficult to plug himself in to it, do the protocol for getting started, and then lie down and go to sleep, trusting that the machine will do its job over night and he will wake up in the morning dialyzed and ready to go.
There are hiccups. A couple of nights he forgot to remove the plug from the end of the drain that empties into the bath tub, causing a blow back spray that ended up on the bathroom floor. Our grand daughter noticed one night, and our younger son noticed the next. I can see how this detail could get lost in the process, and once Rick is hooked up to the machine he ain't going nowhere for nine hours when all its cycles are completed, so if that plug isn't removed by then, someone else will have to do it.
Rick's being attached to the machine has led to a little yelling: "OH MARY! OH MARY! Would you do me a favor? Would you...?" whatever it is. Which I am happy to fetch, fix, add, take away, or whatever is required. One night he called my cell phone from his cell phone, which is one way to get a person's attention from 25 feet away without raising your voice.
Once he's on the machine, he has to stay on for nine hours. This is longer than he is accustomed to being in bed and can be tedious for him, but he's working on it.
PD seems to be working, and once he is free from the mid-day manual exchanges, he's going to try to go back to work in some capacity. We've talked about it. He feels like he has to try it. He's not ready to give up and say he can't do it without even trying. I understand this now. It has taken a while for me to "get it," how important work is to him, to most men. Part of the motivation is that we need MORE money, which is always true, no matter how much we have, so I'm not too worried about that. If it works out and he can do it, work part time for the water system, well, hotcha, that will be lovely for him, but his kidneys will come first at all times. They don't call it "end stage renal disease" for nothing.
So we have come through a rather rough patch of feeling PD wasn't going to work, being sued, and my having surgery, and things are finally starting to calm down a little. Knock wood.

Tuesday, July 13, 2010

A Little Good News for a Change

Picture: Rick is home after the latest surgery
Today, July 13, 2010, was another surgery day for Rick. It was his ninth surgery since last October. Today's procedure was to externalize the catheter that was put into his abdomen last month (surgery number eight).
It wasn't too harsh - we didn't have to be there until 10:30, which is late by surgical standards. I dropped him off at the Swedish surgery intake lobby while I went off to another building nearby to straighten out some billing details - his insurance changed on May 1, and now two offices have billed the wrong insurance, and these things have to be straightened out.
So after that I headed back to Swedish and hung out with Rick for a while before he was taken off to the OR.
I was sitting in the Family Surgery Waiting Room talking with Cousin Nancy on the phone when Dr. Pham, Rick's surgeon, came out and told me that she'd put a liter of fluid in and got a liter of fluid out: "I think it's going to work!" she said with a smile.
This is good news. The PD catheter might work. Woo hoo.
Stay tuned for further developments.

Friday, July 9, 2010

Rick's Log: June 1 to 4, 2010

Picture: Rick prepares to go to dialysis
6-1-10, Tuesday
Dad & Diane sent us birthday money (yay) and I splurged on 5 quarts of oil for the Nissan and a filter which I changed out today, at 208,117 miles on the odometer. Badly needed, too. It's been almost 5,000 miles since the last change. I believe it was the last thing I did before moving to Quartermaster Heights (in October 2007). Never once since I've owned that truck have I treated it so poorly! Shame shame on me.
I stopped off at Jon Knudson's office to give him a retainer and our debt info for bankruptcy proceedings. He wasn't so I stuffed the envelope through his mail slot. I hope we're in time.
As I was leaving I noticed with some surprise that the office right next door now belongs to Height Water! Mary Anne came floating out of the office at the same time and gave me a big hug and a tour of the new office. They've been in there for about a year and Helen has been working about 6 hours a week for WE #19 to help fill in the gaps there. Man, am I out of the loop.
Today the lawsuit was due to come to trial, but got put off until Thursday. We are eager to get this event over with. It has been such a drain on our morale.
6-2-10, Wednesday
I stopped into WD #19 to tell them the latest turn of events involving the PD catheter replacement on June 15 followed by recuperation time. If the new catheter works I can probably get back to work sometime in July. If not, the new catheter will have to come out and another recuperation period will follow. And more delay in getting back to work.
Mary spent the whole day in the courtroom listening to (the people suing us) go on about the loss of quality of life of (the sue-er). Their answers to their lawyer's questions were scripted, so their answers to all questions were identical and pat. When our insurance lawyer cross-examined them, they got a deer-in-the-headlights look, and rambled.
The judge did ask their lawyer how they came up with their figures (what they were asking in damages), a question which stumped their lawyer (Mary's note: I think the judge asked this because he wanted some comic relief, and he certainly got it).
In order to get the trial over today, Mary agreed not to testify, in part because she was so angry she thought she would make the case worse.
Boy oh boy – this is NOT the way I had hoped to face up to my elder years – being plundered while being bled white by dialysis and dying of renal disease. This is the retirement plan from Hell! My tombstone should read, “Dedicated to those who made me what I am today.”
6-4-10, Friday
The big busy day is upon me. Woke up at 0600 and caught the 8:40 boat, wading into the herd of commuters at Fauntleroy. An amazing sight and one not often seen at this hour was the line of cars waiting to catch the boat to Vashon/Southworth. They were lined up almost to the 76 station, maybe ½ a mile from the dock.
It took a half hour to get from West Seattle to the interchange of the Spokane Street Viaduct and Highway 99 (a distance of maybe two miles); then another 25 minutes to get from there to Highway 5 (another mile). Highway 99 and I-5 looked just like the West Seattle Freeway and once I got past the on-ramp to Interstate 5 it was clear sailing all the way to the VA Hospital. The parking lot had volunteer vets everywhere, helping the arriving vets to find available spaces. Wow! I felt I had come home at last! I got there at 0946, 15 minutes early. Vets everywhere! The place was packed and everyone there was guided by the spirit of helpfulness. Everyone there was moved through the lines with speed and efficiency. People helped guide me through the huge buildings the considerable paperwork to be filled out. I got my picture taken for a VA ID card and met Rita W., my case worker. Gone are the days when you had to prove by virtue of witnesses hat you had actually set foot on the soil of Vietnam to prove eligibility for Agent Orange exposure. Now, eligibility is determined by whether you carry the Vietnam service medal or not. Period.
Same thing for PTSD qualification. Turns out everybody in the Navy is presumed to have some symptoms of post-traumatic stress simply due to the fact that ships are dangerous duty stations.
I finished up for now a little before 1300 and headed for west Seattle NWKC. Earlier, while still being processed through the VA, Debbie called from Di-alysis Restaurant to find out if I could come in early today which made a formerly long day become a less long day. I was in the chair bleeding by 1330 and home by 1930.

Tuesday, July 6, 2010

Rick's log, May 25 to May 30

5-25-10, Tuesday
A surprising front-page headline article in yesterday's paper on, of all things, the art of cursive writing! Formerly known to us geezer types as “penmanship,” it occupied a half-hour of elementary school time every day and comprised a part of the evening's homework assignments as well. Practice, practice, practice was the name of the game. Some got the skill eventually and some didn't and one of the reasons for learning it was to develop a signature as a unique and personal stamp of identity.
Many kids today (Allysan is one) can't read or write cursive and our own adult kids have signatures that imitate it. I had thought the schools had abandoned it long ago and the article says that Seattle Public Schools “encourage” the use of cursive but don't require it.

At last! Dr. Pham called. She has a surgery date set up for me to replace my PD catheter at (gasp) 0530 on Tuesday, June 15.
I have a date at Dr. Oliver's the same day.
Mary called CenturyLink to have our ground line shut off and after all this time and wrangling, the line was dead and gone within minutes. I found this out when I called Dr. Oliver's office to reset the 1100 appointment and couldn't get through. Using my cell phone, I left a message on her office's voice mail to call me back.
Kinda historical. Good-bye forever to 206-463-3327 and 463-1230.

5-26-2010, Wednesday (Art Linkletter passed today at age 97)
Next, we went through the house and boxed up all the cable TV control boxes and remote controls to return them to Comcast, instantly eliminating about $50 from our monthly house operation expenses. This is our first big step in learning to live in senior citizen poverty. Our next step seems to be learning how to wait for my meager disability check from the government which we have waited to receive since last October. It was supposed to come today. It failed to arrive. Although the benefits technically started last month, it's understandable that it would take the government a month to sign it and mail it to us. Anyway, its failure to arrive started a clock ticking for us. Back on Feb. 9 we discovered how Chase bank deals with its customers by making us track our funds down and make requests for them while they collect interest on them...while we wait in frustration for the funds to arrive.
Happy 62nd birthday to Mary. She got funny birthday greetings from Nancy who, along with Charlotte, sang her the happy birthday song while still groggy from her 2nd chemotherapy session.
Boy, did I bleed today! The techie who hooked me up (Cyrus) had trouble placing the needles and one blew out while he was trying to reset the other. Finally he had to remove both of them and start all over which left me in pain for the entire four hour run.
Meanwhile Angela called to tell me she couldn't make it to West Seattle to go over my latest care plan with me. She had several emergencies at Sea-Tac NWKC and while driving north to meet me at West Seattle NWKC had to turn around and go back to help deal with more emergencies that happened after she left.
That's okay. I was busy with an emergency of my own when she called, holding back the tide of my life's blood with a thick gauze pad while Cyrus and several other techies had to swarm a patient who passed out from low blood pressure.
We returned home late to find a worried note on the door from Gregg who had been unable to reach us because our phone had been disconnected. We gave him our cell phone numbers but were too bushed to provide dinner or conversation tonight.
So far we're not missing the phone line or the cable TV. The next thing to go will be the post office boxes. Both of 'em. Another radical move with historical overtones. I've had PO box 238 since the 70s.

5-27-10, Thursday
This is the one day of the year when Mary and I are only 2 years apart in age. She turned 62 yesterday and I'm still 64 until tomorrow.
The ticking clock that started yesterday stopped today when my first meager disability check arrived.
Mary picked up the check at the PO after we went to town to consult with our lawyer on how to declare bankruptcy.
For the moment this will help us quite a bit since the credit card companies have been in harassment mode for a while now. Everyone else in the long line of creditors we've acquired since I became a member of the Living Dead Club has been understanding and helpful but not the credit card companies, of which Discover is the most egregious.
About a month ago Jim Hutcheson (“Saint Hutch” to us) sent us a download from The Washington Post announcing “America's next Great Cartoonist” contest. The web site is about 12 pages long and when I finally got around to reading it today I found the contest closes on June 4th – right around the corner. Mary looked up their website, which contained an online registration form which required an attachment to containing six cartoons for their judges to consider. Unfortunately it's in Word format and Mary's computer doesn't have Word. She scanned six Offshore cartoons and sized them at 6.375” by 2.125” but when she printed them out, each strip's size was about the width of a coffee bean, i.e., nearly invisible. So, if we used their online electronic registration form, the Washington Post would not be able to open the attachment.
Mary printed up their registration form plus the six scanned cartoons so I can fill it out and snail-mail it to the Post. Only trouble is, they didn't include their mailing address but they did include a manager's name, Sarah M., and phone number.
Mary took a break to make dinner and as we sat down, Gregg walked in. Fortunately there was enough food left over for him.
I managed to get a brief bio put together for the Post while Mary experimented with various other ways to try to overcome the formatting problem but the snail mail option may be the only one available.

5-28-10, Friday
Made it to 65! Woo hoo!
First thing today I called Sarah M. at the Washington Post and left a message on her voice mail. Then I realized it's the beginning of Memorial Day Weekend.
Mary took off for the Honda dealership. Yesterday she got a call from Honda that her Civic has a problem in the driver's side airbag that may cause it to spew explosive shrapnel if it goes off. Bad feature so she's off to get it fixed.
Time to go for a birthday bleed.
I got off early enough to catch the 8:05 pm boat home and was knocked out when I walked into the house and found Allysan was there! Big birthday present! She did some special Allysan birthday cards for me. My favorite (a keeper) was a picture of me hooked up to a hemodialysis machine and her looking at me through a door and both of us thinking, “Dialysis sucks!”
I thought I hadn't gotten a call back from Sarah M. but Mary suggested I check my cell phone's voice mail because she (Mary) couldn't reach me today. Sure enough. The phone had turned itself off and there was indeed a voice mail from Sarah M. She said unfortunately all entries for the cartoonist contest had to be done electronically and wished me luck.
Mary went in, hooked up to the website and filled in all the particulars on the application form and within an hour an answer came back welcoming me to the contest.
5-29-10, Saturday
Allysan stayed the night and part of the day. Who knows how long this gets to go on? We'll just enjoy it while it lasts I guess.
The well-preserved but expensive-to-operate B-17 Flying Fortress that's been hanging out at Boeing Field for the last three weeks made two runs south and then north down Colvos Passage this afternoon. They've been selling half-hour flights to the public for $450 a pop so I grabbed the video camera and went out to see if I could expose some footage late in the afternoon. No luck but it was nice to break away from my usual dialysis patient mode for a change.
5-30-10, Sunday
Another week in the chair starting up tomorrow. Friday will be a tough day to end of the week but only because it'll be so long. I'll have my entrance interview and doctor's exam at the Veteran's Hospital at 10 am, and probably some time to kill before my 1600 to 2000 stretch in the dialysis chair that evening.
Mary notes: had a Skype call from John & Julie tonight. They sent their love and good wishes. Let's see now...if it's 10 pm this evening here, it's about 4 pm tomorrow there.

Monday, July 5, 2010

Rick's Log – the Tabletop Diary, May13-24

Mary writes: it has come to our attention that we have not been keeping this blog up to date. Sorry. Today will begin a series of entries going back to mid-May, from Rick's writings in the tabletop diary, which we hope will bring you up to date. Oh, and the picture is of most of Rick and our dog, Jive, "sitting pretty."
5-13-10, Thursday
Before we went to our monthly meeting with Dr. Oliver today we put together a list of questions about what the future holds for me, treatment-wise, and it tentatively came to this:
Peritoneal dialysis (manual exchanges) with over-night cycler treatments are not possible. Dr. Oliver wants to make one last call to the PD folks to discuss a possibility for continuation but for the most part it no longer appears to be an option. As it stands, it seems like the only route left is to keep on with hemodialysis 3 days a week in West Seattle. Forever.
She wrote us a letter to give to Jeff Lakin (manager at District 19) approving a return to work on the non-dialysis days (Tuesday, Thursday, Saturday, and/or Sunday), whatever that may be. If those days changes, work days will have to change also.
I'm going to give it until next week to bring up with WD #19. By then we should have results back from PD's decision, yea or nay. Then it will be up to WD #19 to decide if they want to keep me on under those conditions.
If PD's decision is final not to continue that form of treatment, there will be one last surgery to remove the PD catheter and one last recovery period.
We thanked Dr. Oliver for all her help and for saving my life when I needed it most. It appears the PD people hold all the cards and they appear to be inflexible. Living or dying of renal failure is my problem now. Their choice and their decision is to live by their rules.
I sure don't want to play on that team any more. Meanwhile, we're going to stick with Dr. Oliver.
5-18-10, Tuesday\
So much happening. Too much in the last five days to even find the time to document it. Where to start, or re-start? It may as well be today.
Mary: on 4/27 she had a needle biopsy of her breast to check out a tumor which was not malignant (probably) but was “atypical,” requiring closer inspection as well as excision. This is “the bulge in Mt. St. Litchfield” she is having done today which, coincidentally enough is the 30th anniversary of the eruption of Mt. St. Helens.
To assist us, Sonya Norton drove up last week for a visit and to provide a friendly, stabilizing presence to help offset the mounting chaotic series of events that seems to be endlessly buffeting us hither and yon through the pinball machine of what has become our lives lately.
Today I'm recovering from yesterday's hemodialysis which began with a painful needle infiltration of my fistula, causing another hemotoma. The last time this happened was January 27th and it's no more fun this time than it was last time. Yesterday I went straight away into low blood pressure and nearly passed out; then spent the remaining four hours in a state of semi-conscious pain.
Before this happened, I got a call from long-lost Angela from Sea-Tac PD. Haven't heard from her since 4/22 when I flunked out of cycler training due to unreliable PD catheter performance. Angela was horrified that in her absence no one from the PD program had made contact with me during the whole catheter repositioning until Angie (not Angela) called me on 5/6 to have me come in on 5/11 to have the repositioned catheter flushed.
We all remember how that turned out. PD staff disappeared once again and everyone from Dr. Pham to Dr. Oliver sadly concluded that peritoneal dialysis was no longer an option for me. The next and last thing for me to do was have another goddam surgery to remove my PD catheter and I'm bumped back to hemodialysis for the rest of my life!
That was last week.
Hemo is very debilitating. Dr. Oliver said in her letter to Jeff Lakin that I could do hemodialysis on Monday, Wednesday, and Friday; then, instead of recuperating, I could work Tuesday, Thursday, Saturday, and Sunday.
To me, this sounded like a recipe to kill me off as quickly and painfully as possible but of course that wasn't true. It just wasn't what I had hoped for. Throughout this whole process of learning to live with an incurable disease, my imagination has been my own worst enemy. It's only good for rehab; not at all for planning the future.
So – yesterday morning at 0905 a nice lady at the Polyclinic calls (Dr. Pham's office) to tell me that Dr. Pham is out of the office until Wednesday but she would like me to consider an option to what appeared to be her unconditional surrender last week on 5/11. Not surprisingly, the option turned out to be more surgery! Not a mere repositioning of the PD catheter this time. She's talking about tearing the whole works out and completely replacing it. It was just the kind of bold, radical solution I was ready to consider, especially after the miserable, painful experience I had later that day at hemodialysis with the infiltrated needle.
So – on my way to the ferry, I took Dr. Oliver's now superseded letter of approval to return to work and dropped it off with WD #19 so they could have it in their records. It will change of course after my next surgical procedure which, if it succeeds, will put me back on track for continued PD treatment as well as a return to eligibility for use of the cycler.
Mary's home from her surgery, in bed stoned out on painkillers and doing well.
I spent Saturday recovering from Friday's hemodialysis and on Sunday we all went to Allysan's 8th birthday party at Dockton Park. It was fun and Nycol did a great job putting it together. It was also the only opportunity we had to see Allysan this weekend.
5-21-10, Friday
The hemotoma I got last monday is not as visually dramatic as the one I had last winter but it sure makes hemodialysis more difficult. The techs have a hard time finding the fistula beneath the swelling and so have to use a stab and hope technique which, coupled with two more hepatitis shots today, is making me feel like a voodoo doll.
Yesterday about 4 pm the dog went off and when I went to check I found none other than Rick Cote at the door. He and his wife Ellen and two boys, Aaron and Zach, lived here in the Park when the kids were growing up, during the 80s. They packed up, sold the house back when real estate was still real, and moved to Spokane. Now Aaron is about to get a post-grad degree down in LA and Zach is living up in Bellingham. Like all of us these days, Rick is just a little older and grayer, and we had a nice visit.
5-24-10, Monday
Bad dream last night. I was hired as a utility locator without notification and sent straight into the field without any training since their records showed I had received training in 1997. I had 5 locates to do and screwed up all of them because I knew nothing of the new formats, causing me to get into immediate hot water with a supervisor. He said I was the worst locator he had ever seen and was like something out of his worst nightmare. This triggered a sense of recognition in me and I realized immediately what the solution to the problem was. We were both having the same nightmare but I was the only one who could solve it. I thanked him for his managerial insight and said good-bye. As he began to erupt into a raging temper tantrum, I woke up.
(Mary's note: Rick is a lucid dreamer, which means he can be conscious of having a dream while he's having it and direct the action in the dream)
Alice Orr came over at 1000 to take Mary to Swedish for a check-up to see how her surgery site was doing.
Meanwhile, I called Dr. Pham's office to find out what's been going on since I received the call from her office on 5/17/10 asking if I would consider surgery to replace the PD catheter. Dr. Pham is considering moving the catheter from its present location on the left side of my abdomen to the right side. Radical! (note: this is left and right as Dr. Pham looks at Rick, so to him it will be a move from right to left. Don't think about it too much)
I called Angela over at Sea-Tac PD to fill her in on the latest details, just to include her in the loop.
It's been busy so far today. The VA called with a recorded message which was kind of a surprise.
5-24-10: Mary gets pathology report on removed lump. NO CANCER. Woo hoo! Big woo hoo! An early birthday present! Yaay

Wednesday, June 16, 2010

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.

Wednesday, June 2, 2010

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.

Wednesday, May 12, 2010

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.

Saturday, May 1, 2010

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, 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

Friday, April 30, 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? 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.

Sunday, April 25, 2010

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.

Thursday, April 22, 2010

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.

Friday, March 26, 2010

Fluid Overload

Rick writes:

3-20-10 Sat. 6 days to heal
Today is the vernal equinox – night and day are the same length.
Reviewing the recent past I found that I carried the tunnel catheter for five months plus a day (10-15-09 to 3-16-10). No wonder it was so hard to extract.

3-22-10 Monday 4
We had a nice weekend with Allysan but her dad had to take her home early yesterday afternoon due to his work schedule.
Today was a trip downtown to Seattle NWKC to meet w/Angela due to a change in her work schedule. Ordinarily she is at SeaTac from Monday to Thursday. Preparing for this visit involved saving up four bags of used dialysate, three yesterday and one this morning, numbering each one in order #1 through #4 and collecting a total of 1100 cc's of urine to deliver to Angela for testing in order to see how effective my home treatment is. Angela emitted a squeak of delight when I delivered this gross offering to her. She's probably the only woman in the world who would welcome such a “gift” with enthusiasm.
Afterward, Mary and I took our usual route home through Alki and picked up our usual lunch of fish and chips along the way.

3-23-10 Tuesday 3
I got a call this morning from Rochelle at the Veteran's Administration. My application for veteran's benefits was received and reviewed and I'm assigned a Group 6 veteran's rating. Official notification of acceptance will arrive in the mail soon and I'll then set up an appointment for an interview.
As a Vietnam vet I'm eligible to apply for compensation for agent orange exposure whether I spent any time ashore or not. To my recollection, the closest I personally ever came was when the ship spent part of a day in Da Nang harbor and I was the utility boat signalman sent out to tow the captain's gig back to the ship when it went dead in the water (Dec. 16, 1967)
After all these months of steady sprinting for doctor's appointments and various surgeries it has been a welcome relief, both physically and financially, to finally adapt to the more relaxed schedule that home dialysis offers. This is the right opportunity to start up with the VA now that things have slowed down a bit.

3-24-10 Wednesday 2 days to heal
Actor Robert Culp passed away today at 79, after taking a fall at his home in the Hollywood Hills.
Bernie Madoff, a financier who made off with billions of dollars from investors and was imprisoned for 150 years, reportedly was beaten up by fellow inmates today or maybe yesterday. Anyway, it's long overdue.

3-25-10 Thursday 1
Life has certainly become simpler since hemodialysis went away. PD comes equipped with its own quirky set of peculiarities though: 1. Dehydration, and 2.fluid overload. I would hope to achieve a happy balance between the two but it turns out to be quite a challenge. I would delighted to experience some dehydration right now but fluid overload (edema) appears to be in the driver's seat. Even though I avoid water as much as I do salt, it accumulates in my tissues every day doing what water does best, i.e, heading for the low spots. By the end of the day my feet and ankles are ballooned out and painful. Going to bed is a sort of relief but the water redistributes itself horizontally and I wake up with swollen hands and wrists. Life has become a repetition of this sequence for this month.

3-26-10 Friday 0 – Tunnel catheter came out 10 days ago. I am now officially healed.
Twenty years ago while I was the sole operator for Heights Water, a new Vashon resident got himself voted in as one of the four trustees of the association. It used to be a joke that the only qualification for eligibility was that they had to have once been a Boeing engineer so it was a strange departure from this unwritten policy that this volunteer had been a marine Engineer all his working life. As such he was endowed with the ME's personal attitude that he knew everything that was to be known in the physical world and was therefore never wrong about anything.
He had an answer for everything in the working world including how long it took to heal up from any given injury in the working world. This was necessary information if you were in charge of the efficient distribution of labor and his assessment of a reasonable length of time for any injury to heal was 10 days. No more; no less. And no exceptions.
He applied this rule to himself when he came down with prostate cancer and this delayed his recovery when I caught him digging up a leak in one of Height's pipes exactly 11 days after his treatment started. This led to a small heart attack which set him back another 10 days but failed to impress upon him the need to allow recuperation to take its course, however long that may be. He went to work on his house with a vengeance after putting it on the market, where it failed to sell. The effort caused a stroke and sure enough, after 10 days he was back to work on the house, which finally sold and he was able to then move off the island into an apartment. With his wife safely housed ashore he put all his affairs in order and died. What a guy! An inspiration to us all.
I am now the keeper of the “10 days to heal” rule. I stripped the pressure dressing off the site where the tunnel catheter used to be. It's not quite healed yet. I'm going to give it more time.

Monday, March 22, 2010


We have had something of a mystery here the last few days. The mystery arrived as a white envelope, addressed to me in handwriting I did not recognize. Inside was quite a lot of money in cash wrapped in a white piece of paper. No names, no return address, no nothing - just money.
The one clue: the envelope was postmarked Medford, Oregon.
Rick and I know a few people in Oregon, and a couple of people specifically in the Medford area, so we have, let me say, a strong hunch about who the mystery philanthropist might be. But we don't know.
We figure that anyone who went to that much trouble to remain anonymous should be allowed to do so in peace. So whoever you are, anonymous, we received your gift and we thank you and appreciate what you did. Bless you.
Enough said, know what I mean?

Thursday, March 18, 2010

St. Patrick's Day, 2010 & Our Thanks to You Again

On Monday we went to see Rick's nephrologist, Dr. Oliver. She was pleased with Rick's progress, and said it was time to remove the tunneled catheter.
Ta Da!!!
The tunneled catheter was put in last October so Rick could go on to hemodialysis. It is exactly what it sounds like – a catheter which is tunneled into the chest and in Rick's case, into his jugular vein. It had two ends that hung out of his chest, a red one and a blue one. I told him they looked quite festive. One was for blood coming out of his body and one was for blood going into his body when he had dialysis. Don't ask me which was which.
In December he was given a fistula in his left arm, and if he has hemodialysis now needles will be inserted into his fistula. Rick is not wild about the idea; the last time he had dialysis through his fistula he had severe leg cramps, and jumped up to try to ease the pain, and pulled the needle loose, and ended up with a hematoma that covered his entire left forearm. While an entirely purple forearm is a rare sight to see, it's not something you want to have. Took weeks for it to clear up. So from then on he was given dialysis through the tunneled catheter.
Now, though, he has made the transition to peritoneal dialysis, yay, and his fistula is there if he needs it, and it was time to take the tunneled catheter out before it developed an infection.
So, Tuesday morning we headed in to Swedish Hospital, our home away from home, to have the catheter removed.
The procedure was done at Radiology on Four East. I don't know why Radiology is the name of a department that does minor surgeries. I thought radiology was x-rays and sonograms and cat scans and such. Well, this part of radiology is minor surgeries. We shrug our shoulders and go where we're told.
This is the same place where the catheter was put in, and I learned then that Four East Radiology has the best couches for sleeping on in the hospital, at least that I've found so far.
The couches are located in a curving walkway between the waiting room and the surgery area. The exterior wall is windows, so you have a lovely view of the Central District and the Cascades and Mt. Rainier in the distance. But right next to those windows are these lovely couches, with nice thick cushions, and rolled bolsters on each end. I find that I sleep beautifully on these couches. When Rick walked in to have his catheter removed, I tucked myself in to a couch, covered up with my coat, and dozed off until an hour later Rick shook me awake and said it was time to go.
He said that it took two guys to pull the catheter out. One tried to pull it out and failed, so he called in a BIG guy, and the two of them tugged and pulled and wrestled the catheter out. He said it made a “POP!” as it came out. And yes, they had locally anesthetized Rick for this.
Afterward we cruised by The Spud down on Alki and picked up some fish and chips. There was a high wind blowing, causing actual little white foamed rollers on Puget Sound. This is pretty rare. Rick couldn't wait to get on the ferry and feel those swells beneath his feet, but by the time we got on the ferry the wind had died down quite a bit – there were still whitecaps, but not the wind-driven waves we'd seen earlier.
But the inside of my car smells like garlic-infused malt vinegar now, which is nice.
Today we both slept all day.
That's not entirely true, but close. I can blame the sleeping pill I took last night for part of it; but I think we were both a little tuckered out from the two days in Seattle and the catheter removal. So we slept through St. Patrick's Day this year. We've become used to being home again the last couple of weeks while Rick has been using peritoneal dialysis, and have not missed the constant traveling to Seattle at all, and it wears us out when we go. Perhaps tomorrow I will get around to calling all the people I was supposed to call today.
The next step in dialysis will be a cycler, a machine which will perform dialysis for Rick overnight while he sleeps. This is so darned exciting, I can't tell you.
Now, the Thank yous: many years ago, when I was young, I was privileged to know songwriter Malvina Reynolds. Malvina was a socialist living in America, and she once told me that in this country, money equaled respect, so she had no qualms about charging for her records or the use of her songs.
Well, a couple of weeks ago in this blog I asked you, if you could and felt you were called to do so, to send Rick some money, because we have used up our savings and have no income at present. Your response to that request tells me that you love and respect Rick quite a lot.
So we thank you, for your love and respect and generosity. We will now be able to keep Rick insured until May, when he will transfer to Medicare. Whew. We will also be able to pay a few medical bills, non-covered deductibles and such. Thank you, thank you, thank you. You are very, very good to us.

Thursday, March 11, 2010

Rick Dreams

Mary writes: Rick has always had the most amazing dreams. They have complex plots, and they're funny. Rick is a lucid dreamer, i.e., he is able to consciously direct what happens in his dreams. If he is not enjoying the dream and thinks, "Wait a minute, this is a dream. All I have to do is wake up," he does - wake up, that is. I've always envied him that capacity.
The last few days he has been entertaining himself by drawing an illustration from a dream he had in February. I've been telling some people about this drawing because I think it is so cool, and tonight I scanned it so I could show it to people. It's not really completely done, but close, so I may replace this drawing in a few days when he's polished it to his satisfaction. Looking at it tonight he remarked that he needed to put one more sock in, for example.
Note: The "Mom" he mentions in the dream is his mom, Dawn, not me - he calls me Mom to the boys, so I had to ask.
Rick wrote:
From February 7, 2010:
I spent the night dreaming I was visiting an apparently uninhabited town with no name although for some reason it had been preserved in its original state somewhat as a museum. I parked my truck on the untended, grassy outskirts and Mom and I got out to see the sights together. As we walked the deserted streets I met a fair number of my old friends who also happened to be there. Mom went off by herself and I found an art store to explore. There was nothing for sale there but it was set up with innumerable displays of various artworks by former residents.
My Navy buddy Warren Bek was in there, inspecting an incredible sketchbook which he was marveling over and passed to me.
“See if you can figure this out for me,” he said. “Stare carefully at the drawings for awhile and you'll get a big surprise.”
The first sketch depicted a small rocky mountain with a path spiraling around it from the base to its peak. Primitive humans were walking up the path and seemed to evolve into modern humans by the time they reached the top. Miraculously, as I stared at the scene intently, it would briefly animate itself long enough for the evolved creatures at the top to fall off the pinnacle and roll back to the bottom to become primitives once again. The scene then de-animated itself back to its former frozen image! That was the surprise and I yelped with disbelief.
“So what d'ya think?” asked Warren.
“I think the message is that those who don't learn from history are doomed to repeat it forever,” I answered.
“I got that,” said Warren. “I want to know how the hell the artist did that!”
“You figured it out yourself, Warren,” I said. “The artist just drew the picture. You stared at it long enough to bring it to life.”
“Hmm,” he said. “I guess that explains the next picture then.”
Another surprise. It was a drawing of the ship we served on, the U.S.S. King, steaming along at flank speed with black clouds of smoke pouring out of its stacks. Staring intently at the image, it came to life, steaming suddenly in reverse with the smoke pouring backwards down the stacks until it imploded and sank like a stone.
“Wow!” I said, “There's no mistaking the message there.”
“Nope,” said Warren.
And we chorused in unison: “The King sucks!”

Wednesday, March 10, 2010

Progress Report, and a Plea

It has been a typical spring week: rain, sun, snow, sun, snow, rain, sun...and that was just the last half hour. OK, not really. That was Monday. Today has been more sun alternating with clouds.
Rick has made the transition to peritoneal dialysis at home. It was not easy, and it still isn't, but he's getting more into the routine and it seems to be going a little faster and working a little better, as if his peritoneum is saying, “OK, you're really serious about this, aren't you?” and is starting to work with him.
He puts 2000 ml (2 liters – think a large plastic bottle of soda) of dialysate inside his peritoneum, after draining off 2000 ml, every four or five hours. This is the ideal. In fact, sometimes he can only drain 1200 or 1600 ml of dialysate; but last night he got 2600 ml out on his last drain of the day, and this afternoon he got 2400 ml out, so reality definitely does not conform to the ideal.
It's pretty much a full time job at this point, but at least we're not having to go to Seattle every day, which saves energy & money, not to mention time, and he doesn't have hemodialysis hangover. When he has hemodialysis he spends the next day recovering. It's hard on your blood to get pumped out of your body, run through tubing and filters, and then pumped back into your body. PD is definitely more gentle.
However, because Rick is doing it at home, he is not being monitored constantly for every level of every component in his blood, so PD is in that sense a walk on the wild side. The plan is to go in once a week, on Mondays, to check in with the Kidney Center and make sure he's OK.
We are now close to hitting financial bottom. We will have no income until Rick's disability kicks in at the end of May/beginning of June. He was hoping to get back to work once he was on PD, but that has not happened yet. Rick still has to go into Water District 19 to talk to Jeff, the manager. Rick says that tomorrow morning he will take out the trash, and then keep going, so watch out, Jeff. Rick's a-comin'.
Rick says that he is used to being poor, but he has decided he doesn't like having no money at all.
I will not passively hint around here, I'll come out and say it: if you've been thinking you'd like to send Rick some money, now would be a good time:
Rick Tuel, P O Box 238, Vashon WA 98070. “No amount too large, no amount too small.” Any amount would make me less afraid of losing the house.
We are most thankful to those of you who have already contributed to keeping our miserable butts alive. And on that strangled plea for dough I close for today.

Tuesday, March 2, 2010


Or something like it. Rick has graduated from PD school! He is doing dialysis at home! We are happy! Yay!

Sunday, February 28, 2010

The Deja Vu Blues...Again

Short version: peritoneal dialysis is not working, again, and Rick has had to go back to hemodialysis. It's enough to make a good man go bad, or at least go in the living room and watch TV.
He goes back to PD class tomorrow to see if it's working now. Twice now he has had the experience of having it work for a couple of days, and then stop draining on the third day. He sees a pattern in this and wants to know what is going on, and why. As do we all. Everyone wants the PD to be a success - the doctors, the nurses, the kidney center techs, Rick, me, the dog. We're all for it. It just hasn't happened yet and we're not sure why it's not working. So he goes back to hemodialysis.
Of course it's nice to go back and see all the techs & nurses at the NW Kidney Center - it does become a little family over the months you spend there - but with all due respect and the greatest affection in the world for the staff, he wants to come home.
So we begin another week of trying to figure it out and make it work.
And that's the news from here on Sunday night.

Thursday, February 25, 2010

Maybe This Time

Hello, Boys and Girls - Rick is in his second round of peritoneal dialysis classes, and we are tentatively beginning to hope that he might be able to make the transition to home dialysis this time. This would be a good thing.
Meanwhile he's commuting to Seattle for training.
Our son JD pitched in today and moved boxes and furniture around so that Rick can have a private little dialysis space. It's not that private - I'll be here a lot of the time - but at least it's not public, as we felt the living room was.
We're both kind flattened by the last few weeks of relentless trips to Seattle and back, and all the activities, procedures, surgeries, dialysis, etc., we've had to do. So even though the news is good, that he will be coming home, we may be too exhausted and overwhelmed to get too chirpy about it. I am, anyway.
Stay tuned for further news flashes.

Tuesday, February 23, 2010

Living with Chronic Illness

One of the upsides of Rick's illness is that we are spending more time together than we have in years - driving in to town for his appointments, surgeries, procedures, dialysis, and training in peritoneal dialysis. We talk about his illness, our hopes and disappointments, and so forth.
For a long time, I was the sick one, with my angina and obesity and fatigue and my ruined back and knees and shoulder. For about a year now, Rick has been the sick one - cancer and kidney failure really do ace everything else.
He's not happy being the center of attention in this way, believe me. And I've had to change gears in my head: now I, such as I am, have to be the caregiver instead of the poor sick one.
We are gradually learning to live with chronic illness. As I've been thinking about it and trying to make sense of things in my mind I've come up with this: when you face a crisis, you rise to the occasion, assuming it doesn't kill you outright. You do whatever you can and whatever you must to meet the challenge.
Usually such a crisis passes, and you get back to "normal," whatever that is, and go on. Kidney failure doesn't pass, at least not usually. I've heard of people regaining some kidney function and going off of dialysis for a time, but that is not the case with Rick.
So this is how it is with chronic illness. You rise to the occasion, but the illness does not go away. Then you rise to the next occasion, and the next. There is never a time when you can say, "That's over." Unless of course someone dies, but so far we've avoided that.
This is tiring and can become depressing. Depressing because the impossibility of the situation, the loss of control over your life, makes you angry, and there's not a damn thing you can do about it but follow instructions and do the best you can to stay alive.
So you have to adjust, adapt, change. The life you knew before is gone. One friend (thanks, Julie) advised me to deal with my grief. I hadn't thought of it that way before, but once she named it, I thought, oh yeah - life as I knew it is over. This is loss, and loss means grief. Duh.
Oh well. You get it when you get it, not one moment before.
Rick has been talking lately about how hard it is to believe he's an invalid, after being so physically active for all his life. This is a hard adjustment for him. A couple of weeks ago both of us had high hopes that he'd make the transition to peritoneal dialysis at home, but his pd catheter got blocked, and that was that. Now it is unblocked, so he starts pd class again tomorrow, and we hope that we don't run into another crisis which lands him back in hemodialysis again. We are both sure that doing pd at home will be calmer and less traumatic for him, not to mention the money we won't be spending on ferry fare, gas, and meals.
So all you of Rick's friends and family: I ask for prayers, meditations, white light, whatever you can send to him this week to lift his sagging spirits and usher him through the transition he so wishes to make, to peritoneal dialysis at home.
We will continue adjusting and adapting as we go along. Chronic illness is not an easy path. We know that now.
We thank you for walking with us. Your generosity and kindness have kept us going.

Friday, February 19, 2010

Friday afternoon

It's a beautiful day in the neighborhood here - sunny and warm. I actually went out and dug up some mega-dandelions, and a few buttercups, and some of those little plants that produce tiny white flowers that become long thin seed pods that explode and blow seed all over when you touch them. It's easy to see why this little plant is so successful.
Also looked at the dead rose I need to dig out. This one was put there by someone while we were living at the other house, and while the rose is dead as a doornail, the quack grass that came with it is flourishing, so I need to get on that.
Rick went into hemodialysis this morning. It was a rough day for him. His blood pressure plummeted (86 over 67 at one point)and he passed out, only to be awakened by leg cramps. He came home looking ragged.
So not a great hemo day, and once more we are reminded why he wants to change over to peritoneal dialysis.
I am experiencing that bone-deep tiredness that tells me to lie down before I push myself into being carried out on a stretcher, so I'm going to go lie down for a while. Rick says he may join me. A session like that is exhausting, and hemodialysis is tiring even if it goes splendidly.
And so it goes.

Thursday, February 18, 2010

Hello Again

Well, dear hearts, I've been slacking on the blogs. Rick and I have spent the last ten days driving to Seattle and back every day. Well, I was driving the first nine days; Rick drove himself in to dialysis yesterday.
Things have not gone as planned. The peritoneal dialysis did not work out because Rick's abdomen stopped draining. It is draining again now, or at least it was on Tuesday, but he has to go to PD school all over again, next week, and is back on hemodialysis for the time being.
We have hopes that it will work this time, and he will be able to start doing pd at home. The area under our stairs is packed right to the top with boxes of pd supplies, so he's ready whenever he gets the go-ahead.
We are both exhausted at this point, but carrying on. The other day we both yawned at the same time and made noises. We sounded like a couple of wookies: "Aaaaaaahhhhhhrrr..."
You got to take your laughs where you can get them.
Having said that, I'm going to go carry on.

Wednesday, February 10, 2010

Mary Checks In

Photo: Rick takes a picture (on his phone) of Mary taking a picture (on the netbook) of Rick taking a picture...and so on.

Greetings from the Northwest Kidney Center, where we are spending this week so Rick can learn to do peritoneal dialysis (hereinafter referred to as “pd”) by himself, at home. We are about half way through the program, which ends on Friday.
He'll do his first exchange at home tonight.
Here is how it works:
Rick now has a catheter in his abdomen. The dialysate (dialysis liquid) is instilled into his peritoneum through the catheter, where it remains for four hours. Then he does an exchange, emptying the liquid out of his abdomen, and putting in new dialysate for another four hours. Sounds simple. It requires 33 separate and absolutely necessary steps, each of which must be performed as if his life depends on it, which it does. He is supposed to do the exchange four times a day.
The beauty of this type of dialysis is that he will be able to do it at home, which means no more three-days-a-week commuting to the city for hemodialysis (blood cleansing). Rick is happy to be leaving hemodialysis behind. The tunneled catheter they've been using since last October hurts, and the fistula he was given to replace the tunneled catheter worked okay the few times it was used, except the last time when Rick experienced leg cramps and when he stood up to work them out, the needles in his arm came loose and he had an infiltration, meaning his blood leaked into his arm instead of staying in his artery, vein, and tubing. His entire left forearm swelled up and turned purple, and was one big hematoma for the last couple of weeks. And it hurts. So not pleasant on any level.
I wonder how many of these terms and how much of this process I should be explaining more fully to you civilians. Our life, as I recently moaned to a friend, has become so renal. Kidney failure and its treatments have become our language, our night and day, our rhythm, words, and melody.
Perhaps once we are home our family life will be a little less frantic, and there will be more writing. Hard to say at this point.
We wish to express our gratitude once again for the generosity and grace you have all shown to us. We literally could not have made it without your help. Thank you. I have been meaning to write thank you letters to everyone – unfortunately I have been bowled over by the demands of the moment, and a large dose of depression. It is no mystery why I've been depressed, and why I'm still fighting it. These are hard times, ladies and gents, no kidding.
Having some kind of income again will make a huge difference. I have found money to be a very effective anti-depressant, and much faster acting than the popular SSRIs. But not as long-lasting.
OK, that's about all I have to say today – wishing you all the best.

Monday, January 18, 2010

Kidney Failure Humor

In Seattle with my friend Becky last week, we hit the Barnes and Noble in West Seattle, where I found the complete New Yorker cartoons book on the sale table: $9.99 for the book and accompanying DVD with ALL 73,000 plus cartoons that ever ran in the New Yorker. Of course I snatched it up.
Rick was reading it this morning and came across this George Booth cartoon, which, Rick said, he could really relate to.
He then made a copy of the cartoon and added himself to the picture – and you see the result here.

Monday, January 11, 2010

The Next Steps

Rick writes:
1/11/20, Monday
The long-awaited meeting with Dr. Oliver and Dr. Pham went well, with Doc Oliver in her usual cheerleader style. “You look fine! You're doing just great, you guys!” Then she upped my heart meds to two in the morning and one at night because my B.P. Was 170/90. Since she took us in early we had an hour & 45 minutes before our/my appointment w/Dr. Pham so we grabbed an early lunch at IHOP.
I've been having some annoying discomfort from the Hickman catheter – sharp stinging pains punctuated by dull oppressive aches – for about a week and a half now. Dr. Oliver removed two sutures around the exit point. They weren't necessary any more so maybe that will help. She had to dig kind of deep to get one of them loose. She also built a small fire under the Polyclinic folks to get cracking on externalizing the peritoneal catheter and starting up the classes for using it. We made a tentative date for our next visit to her office on Feb. 10th.
Once we got to Dr. Pham's, the ultrasound technician took me in and got some pretty good readings on the progress of the maturation process currently taking place upon the vein they connected to the artery on my fistula. At its widest point (which is at the arterial connection itself) the blood flow is moving at the astounding rate of 4 meters per second! By the time it reaches the narrowest point, up by the biceps, it's down to .53 meters meters per second (blood pressure at Dr. Pham's was 150/83).
Dr. Pham set the date for externalizing the peritoneal cath on Feb. 8th or thereabouts and turned me over to Trish, her surgery scheduler. Trish was apparently the recipient of Dr. Oliver's small fire earlier today and wanted me to appear for surgery at 05:30 a.m. On the 8th, same being scheduled for 07:30 since I am to start P.D. School on the 9th and will need 24 hours to purge myself of the effects of the anesthetic before starting class!
One thing I'm not clear on is whether they'll remove the Hickman catheter at the same time; also looks like we get to re-schedule the 2/10 appointment w/Dr. Oliver.
Today's most delightful coincidence: as we passed the Bethlehem Steel foundry on the West Seattle freeway, one of the “cloud factory” smokestacks blew a perfect smoke ring into the sky, a good eight feet in diameter and at great velocity!

Favorite anonymous quote of the week:
“He has the strength of character to refuse to learn from past mistakes.”