Thursday, October 22, 2009

What's Happening with Us

I'm sitting here typing in my netbook while Rick has his first dialysis.
First I must thank everyone for all the love, support, prayers, and good wishes sent our way the last few weeks. We have felt upheld and loved, and we appreciate all of that.
Thank you.
It would be difficult to write about anything other than what we're going through now. It's as if someone has slammed us both between the eyes with a two by four. Wham! Life as you knew it is over, and renal failure is what is important to you now. You cannot argue with this.
You may wonder why Rick's kidneys have failed. If you think you know, tell his doctors, because so far they haven't been able to pin down a cause.
We think it's life. Life can cause of kidney failure.
It's a shock to have everything stop suddenly and realize that your life is in danger, or your spouse's life. Really gets your attention. At the same time, you start hanging around people and places that make you realize that you are not special – there are a lot of people fighting for their lives at any given time, which is a humbling realization. It's a part of life that is usually out of the public eye.
Watching medical shows on TV is not going to tell you anything about what it's like to have a medical crisis. Those people are actors, those situations are scripted, and as Rick's nephrologist says, those shows are phony.
A nephrologist, by the way, is a kidney doctor, and nephrology has nothing to do either with Egypt or having sex with dead people. I know how you people think.
I observed the difference between reality and TV the first night Rick went in to the ER. He was given a blood pressure medicine which may have worked a little too well, and every time he made a rash move like, say, raising his head slightly, his blood pressure would plummet down to, oh, 49 over 29.
If you watch “House” you know that at least once in every show, someone cries out, “He's crashing!” and then three or four doctors are running around the bed like a Chinese fire drill, yelling at each other to do this, do that, and then someone delivers a shot of epinephrine, or shocks the person back to life with paddles, and then the show goes on with the temporarily dead person revived to suffer more camera-friendly, viewer-manipulating drama.
That is not how it happens. The spouse (me in this case) notes the patient is looking punky, goes out in the hall and grabs Jeff, the nurse, and says, “He's not looking good,” and then Jeff calls for help and a contingent of nurses, aides, and one (count him, one) doctor come in and they do move swiftly, quietly, intensely, professionally, and efficiently, to take care of the problem, because, guess what, this has happened before and they have a protocol.
So they pulled Rick's blood pressure out of the basement a couple of times, and by the next morning the drug he'd been given had cleared his system, and they went to a less drastic blood pressure medication.
That was the first and only time I'd ever seen a nurse wrap a blood pressure cuff around an IV bag and pump up the cuff so the fluid would flow faster. I wish I'd taken a picture to send to the “There, I fixed it” website, but I didn't. Still, if you want that IV to drip faster, there's your methodology.
Rick made it through a week in the hospital with the doctors and nurses keeping him alive and watching him for signs that his kidneys would kick back in, but alas, his kidneys are done. The renal function has left the building.
So here we are at the Northwest Kidney Center, with Rick starting dialysis. This is what we'll be doing for three days a week for the foreseeable future.
We are walking a well-worn path. Many before us, many with us, and many after us will be dealing with this particular medical crisis. We are hanging in there together, with the support of friends and family, taking one step at a time, one day and sometimes one minute at a time. One of the paradoxes is that there is nothing like having mortality stare you right in the eye and breathe on you with breath more fetid than that of a 12-year-old black Lab to let you know you are fully, completely alive.
Funny, that.
We're still here, still fully, completely alive, still cracking wise and thanking God. Stay tuned for further developments.
Photo: Rick in the dialysis chair, with his nurse Jean nearby. Rick is tired of pictures that show him in hospital or treatment, but that's his life these days. You can send him a get well card at: Rick Tuel, P O Box 238, Vashon WA 98070.
This is the first time I've published the same post to both blogs. This is an indication of how completely this situation rules our lives right now. I'll try to talk about different things as time, energy, and reality allow.

Sunday, October 18, 2009

Waiting for Dialysis

It's a sodden autumn afternoon in the Northwest, with the sun peeking through after hours of rain squalls. I read some years ago that North westerners have this regional psychology going on – we all feel that we don't deserve to have too much good weather, so when it rains we feel relieved and happy. Hmm. Maybe. For me it goes back to childhood. It isn't rain that makes me happy – it's being inside a nice warm house with the rain outside that makes me happy.
Still, autumn is a glorious season, wet and dark though it sometimes be. The foliage has been lovely this week. This rain storm is making everything less lovely, but that's going to happen sooner or later. It is the second half of October.
We are having a quiet weekend here, hanging around the house and watching Rick. Well, I'm watching Rick. He's watching “20 Million Miles from Earth” on TCM.
On Wednesday we went to the nephrologist (kidney doctor, not to be confused with necrophiliac, although one of my friends mentioned the similarity), and she very sincerely, earnestly, sadly but firmly, informed Rick that it is time to start dialysis. His blood work is coming back with Bad Numbers. This doctor, a nice young woman named Cara Oliver, kept saying how “remarkable” it was that Rick was walking around, looking and feeling pretty OK, considering how bad his numbers are, or as he has said previously, considering that he is “functionally dead.”
Well, so, you can't just run down to the dialysis place and get plugged in. You have to have some sort of catheter in your body for the blood to pass in and out while it's being cleansed of toxins. So bright and early Thursday morning – we caught a 5:20 a.m. ferry – we headed over to Swedish so Rick could have a tunneled catheter implanted. The procedure itself was quick, and the Swedish Radiology Department on Four East has a hallway with really nice couches in it that totally exhausted wives can sleep on while their husbands are getting worked over. I'm not sure if that's what the decorators had in mind, but who ever put those couches there: thank you.
We were on the road home by ten. The incision site became painful for Rick, and still is. He moves carefully, trying not to bump, stretch, or otherwise stress it in any way. He got some hydrocodone (pain killer), but says it does not kill the pain. After two days he's doing a little better. Still complaining, which is a sign of life, but looking less squinched up with pain, and enjoying watching cheesy movies on TV.
We still haven't heard when his first dialysis appointment is. This coming week sometime, we're hoping Monday. I am watching him for signs that I need to haul him back to the emergency room. His numbers really are terrible.
I have a call in to his urologist, who is his primary doctor for the bladder cancer, informing him that Rick is starting dialysis and that perhaps the appointment Rick has for a BCG treatment next Friday should be postponed. When you're in renal failure, cancer has to get in line and wait its turn. I hope to hear back on that on Monday.
I cannot tell you what Rick's spirits are like this afternoon, but here's something he wrote for the blog a couple of days ago:

10-15-09 Thursday
13:00 Returned home with the dialysis catheter in place but it's installed on the right side of my chest in the jugular vein instead of the superior vena cava on the left side as it was in 1997.
And it hurts which is something I don't remember from last time although I was hospitalized then and pretty drugged up.
Although today's procedure didn't include provision for pain medication I called Dr. Oliver's office and left a message inquiring into the possibility. Tori Stevens, one of the medical staff, called back and fixed me up about an hour later and Mary took off for the pharmacy to pick up the goods. I'll probably only need enough for today until the incision site “heals and seals.”
The procedure only took about ½ hour and was done by Dr. Robert Feldman.
Now with time on my hands I'm reading the paper and noting articles with sentence structures that can be interpreted in bizarre ways. Here's one on page A-7 titled, “Record 1 Billion Go Hungry As Aid Dips.” It says that unless the trend is reversed, the international goal of “slashing the number of hungry people in half” by 2015 will not be met.

Mary's back:
So make sure you don't go hungry between now and 2015. It could be dangerous.
One of the really cool things that has happened that we have not talked about as much as we would if we didn't have so much on our collective mind is that Jim Hutcheson got in touch. Hutch, as I've always heard Rick call him, was a member of a trio called The Balladeers back in Germany in 1960-61. They played at USO clubs around Germany. The trio consisted of Rick, Hutch, and Terry McNeil, who later became a follower (practitioner? Convert?) of Hinduism and changed his name to Nandi Devam. We heard from Nandi just before Rick's 60th birthday and he actually showed up at the birthday party down in Sonoma. Nandi and I both looked for Jim Hutcheson on the web back then, with no success, but he signed up for in August and we heard from him there the day Rick went into the hospital, October 5. Rick is so happy to be back in touch with Hutch.
“He was always the coolest thing about our group,” Rick says. “I always thought it must have pained him to hang around with these two lame white guys.”
After their families returned to the States, the boys all went their separate ways. Rick played folk music in Marin County and San Francisco. Hutch put himself through college with his music. Nandi got into rock music and was one of the founders of a San Francisco band called Sopwith Camel in the 60s.
I used to dance to that band at the Fillmore back in 1966.
We are very happy to be in touch with Nandi and Hutch – it's a full circle. I've told them they need to do a reunion concert.

So that's about it for now. Rick has lived through another day. That's good. He is up against some very tough health issues, but I am trying to keep confident that dialysis will make a real difference and get him back on his feet and enable him to finish the cancer treatment. It's hard for him. I try to imagine how he feels, but I can't.
I'm trying to learn to cook a renal diet for him, but I have so much to learn and am lost in a sea of ignorance at present. But I'll hit up my friend the internet for recipes and clues.
Thank you again for all prayers and good thoughts and wishes and expressions of caring. You make all the difference. Blessings to all.

Monday, October 12, 2009

Rick writes about his experience

More from the Tabletop Diary
Monday, October 12, '09
Hard to imagine that it's only a week ago today that I went off to Bremerton for a C.E.U. Class and ended the day at Swedish Hospital in the E.R., riding the renal roller coaster. Seems like a long time ago now but one doesn't get much rest in the I.C.U., especially at night, so time seems to drag on and on.
They turned me loose Sat. the 10th with reservations since I haven't really shown much improvement by medical standards, the worst of which is my creatinine levels (high range by their gauge is a benchmark of 2.11; after a week of intervention, I'm down from a high read of 13.5 (functionally dead) at admission to a low of 11.0 (still functionally dead) at discharge.
It's to the doctors' credit that they did not follow their natural inclinations to severely intervene due to my lack of response but rather took a step back and noticed that I seemed to be improving even as my stats continued to indicate that I was still functionally dead.
This provides me with some degree of cautious optimism as I return home and continue (so far) to rest comfortably and, more importantly, awaken in the morning not dead.

Saturday, October 10, 2009

Rick Is Home Again

The medical team turned Rick loose from the hospital today, on the condition that he gets blood tests every other day, starting Monday, so that his blood electrolyte levels can be monitored.
His going home instructions say: “You have been diagnosed with acute or chronic renal failure. This means that you had some baseline kidney disease which recently became severely exacerbated. The reason for this recent exacerbation is still unclear. There are some labs pending which will...hopefully shed some light on the diagnosis.”

So he's home, and we're both tired. More later, as we know more.

Friday, October 9, 2009

Friday Morning Report

Rick is getting better. They don't know why. They don't know why he went into renal failure in the first place – still trying to figure that out. He said one of the docs, Dr. Dave (no last name noted), told him this morning, “Your kidneys have suffered a grave insult. You seem to be pulling yourself around, which is not what we expected.”
For the first time, they did not mention dialysis.
Dr. Oliver (that's her last name), the nephrologist, wants to have a committed relationship with Rick for the near future. She wants to run tests, many many tests, on Rick, to try to get to the bottom of this. The lab results are not back on the tests that were done on Wednesday, and when those are in we might know more, but please forgive us for not getting our hopes up that we'll have a definitive answer.
Dr. Dave says he is “hesitantly optimistic.” Rick's creatinine is down to 11 (normal is 0.5 to 1.7), down from 13.5. Creatinine levels are a measure of kidney function, and 11 is not something to be happy about, unless you are coming down to it from a higher number. Rick's levels have been coming down “reluctantly.” But coming down.
Rick got a shower and a shave this morning, and was feeling great when I spoke to him on the phone, but we were both sleepy.
Rick really appreciates visitors and phone calls – thanks to John, Tom, Susi, Pop-san, Gregg, and anyone I'm forgetting. I do not wish to publish Rick's room and phone numbers here, but if you want to contact me for that information, please do. I'm at home today.
After four days of commuting to the hospital, I am taking the day off to rest. Having difficulty staying awake as I type, so I think the rest is a good idea.
So as of today we are all “hesitantly optimistic,” and tired, and continuing to wait for we are not sure what – answers? A healing? Godot?
Hope you are all well out there.

Wednesday, October 7, 2009

So, What Did You Used to Do? (edited)

OK, it's later in the day and I'm adding this picture. You can see Rick is feeling better, as usual not taking the life-threatening illness that seriously. I think just being admitted into the hospital was admitting enough.
Rick says that the docs took a battery of tests and it'll be 72 hours before those results come back. Which puts him here for the rest of the week, at least. The bed rest will do him good -- he has come down with a cold, also. There is some talk of sending him home for a couple of days, if he's well enough, while waiting for test results.
I'm kinda hoping they keep him here and keep an eye on him. I suspect he'll go to work if he is turned loose and feels better.
So that's the news from here. Stay tuned.

I wish the news was better. Rick is in Swedish hospital in Seattle, because he went into renal failure. This happened to him in 1997, also, so his kidneys are a weak point. The docs have not figured out what caused it this time. They were looking for a blockage, but have not found one. They are treating him for high potassium levels, which is good, because high potassium levels cause heart attacks, but so far no course of treatment for the kidney problem.
Just spoke with him on the phone; he says, “The gloves are off,” and they're going to start treatment today, probably dialysis. They haven't found a specific cause but are not going to wait any longer to treat the kidney failure. This is good news.
They may do a kidney biopsy today, as well. We don't know what that will involve, but sharp instruments come to mind.
Rick got some sleep last night and is feeling better. Said he had breakfast this morning and kept it down. They have put him on the renal diet, so he got to have french toast and apple juice. He is sounding downright perky compared to the last few days.
When we brought him in to the ER the other night, he had high blood pressure and was given a drug to bring that down. Unfortunately, Rick's blood pressure then did some nosedives, and the room filled with medical people trying to get his blood pressure and heart rate back up to normal. I report that it isn't like the medical shows on TV. Nobody got emotional. They just got very intense and serious and moved quickly to do what was needed to stabilize him. Personally, I liked that much better than TV emotionalism.
At one point, an EMT was babysitting Rick, watching the monitors to see how Rick's blood pressure was stabilizing, and I guess the guy decided to make small talk, so he asked Rick, “So, what did you used to do?”
We both laughed, at the assumption that Rick was retired, and the hard truth of how un-retired he is.
We told the nice well-intentioned young man that Rick was a water worker, and not retired.
“Although this might do it,” I said.
I know that many of you are praying, meditating, and otherwise holding Rick & the family up. Thank you, and bless you. It does make a difference. We feel your support, and we do feel confident that Rick will recover from this. Then he can get back to getting over bladder cancer. One life-threatening illness at a time, right?