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.