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.