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.

Mystery

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?

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.

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!”

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.

Success!

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