Stayin’ alive

Monday’s baptism into the M/W/F treatment schedule was full of rough waters.

My new time is 2 p.m. I arrived at about 1:40. Put on, I thought, should be a snap because I was not going to let them use my arm access.  Saturday’s treatment had left both access spots swollen, bruised and hurting. The excess blood had settled near the crook of my elbow, far too close to the fistula site for me. Techs and nurses all agreed.

So, we used my Dracula keg tapper for both arterial and venous connections. The machine started popping off almost immediately. They adjusted; it beeped. They adjusted; it beeped. They adjusted; it beeped. You get the picture.

They reversed the lines. It beeped; they adjusted. Deja vu all over again. “Did you get the right amount of heparin,” I asked. I wondered because 2 or 3 people had been involved in putting me on. Things were a bit hectic. The tech I asked just brushed the question aside, sure that the right amount of heparin (now a bolus of 15,000 units) had been administered.

The machine kept beeping. They rinsed me back or flushed me. Still running rough when, guess what, they discovered I’d only received a portion of the heparin. They administered the rest, but even that didn’t clear up the problems.

Gabe finally said he thought we were going to have to unhook me all together, put some med in the catheter ports and let it work for a half hour then hook me back up for treatment. That did finally do the trick but it meant my treatment was 61/2 hours instead of 5. Meanwhile my pain killers were wearing off and my legs decided to give me a couple hours of burning zingers, mostly in my ankles and shins.

I kept wincing, the techs and nurses kept flinching because they thought they were hurting me, they kept apologizing, I kept explaining they hadn’t done anything to hurt me …

It was a long, weary treatment.

Dr. V upped my coumadin to 7.5 mg 3 days a week and 5 the other days because my protime was out of whack. “I assume I should take the 7.5 the night before a treatment,” I asked. “She didn’t really say,” Lisa said, “but that would seem like the logical thing to do.” 

No word on the biopsy, though. Dr. V wants to see the results of this Wednesday’s labs before we do anything more. The new antibiotic may be helping some, but I’ve done half the course now and still having pain, swelling and trouble sleeping. So now, of course, I’m having trouble sleeping then feeling drowsy the next day from the sleeping pill.

There is a positive today: I ordered groceries online yesterday and they will be delivered this afternoon. That’s a relief.

Bill Peckham, author of Dialysis from the sharp end of the needle and vocal renal patient advocate, pointed his readers to the following video recently. It broaches the uncertainty dialysis patients face about the government’s future involvement in our care.

It does leave you in an unsettled state of mind knowing that dialysis treatment is absolutely necessary to keep you alive and absolutely out of your range to pay for individually.

I can barely afford the prescriptions I take using a prescription plan. My costs are over $3,600 a year with the insurance plan and that doesn’t include the necessary meds administered to me at the dialysis center.

It can all be overwhelming in and of itself, add to that not feeling well in general, not wanting to give up working but feeling guilty at the time off that’s necessary to deal with these problems, some particular to me things such as the unknown problems causing constant swelling and pain in my legs, the clotting factors that seem to mess with my dialysis nearly every treatment, the low blood pressure swings I seem to sustain and it’s enough to make you have a pity party at the drop of a hat.

People depend on me. And I’m finding out how rotten I feel when I can’t fulfill their expectations.

This week my legs took a turn for the worse and I found myself monday night up on the side of the bed rocking back and forth in pain and unable to find a comfortable position to sleep. Pain was shooting through my thighs and the area was warmer to the touch and felt raw, almost as if someone had taken sandpaper to my thighs. It’s not excruciating but it is nagging, enough so to keep me from sleep.

So, I’m home Tuesday because of the pain and the fact that wearing jeans rubs against the suddenly tender skin and makes it almost unbearable. Just about any position is the same: Pain wherever the legs touch anything or anything touches the legs.

Tuesday evening at treatment I talk with the nurses about the situation. They call Dr. Yacoub because Dr. Voights is out of town on a family emergency. Dr. Yacoub prescribes an antibiotic, one different than the last two.

Wednesday, the legs are no better and sleep is still elusive except for 3 or 4 fitful hours during the morning. The swelling makes it feel as if my right thigh is going to split open at the back of my knee. I stay home because sitting upright as in an office chair is particularly painful to the area.

Thursday. Same old same old. I’m physically worn out and starting to get that way mentally and emotionally. We need to find out what this is or at least find some form of relief for it. During Thursday treatment, I talk to Dr. Voigt’s nurse practitioner, Jodi. She says Dr. V is on top of it and is discussing the value of a biopsy with a dermatologist. Personally, I don’t think it’s a dermatological problem but I do think a biopsy might give us some answers. Jodi says it’s also the only way to determine if the problem is nephrogenic systemic fibrosis. I’m hoping Dr. V is back in town Monday (when I start my new dialysis rotation) so we can get this search under way.

Jodi prescribes a sleeping pill in the hopes of giving me some solid sleep. I need it.

The treatments themselves are going about 50-50; half good, half problematic.
The venous access doesn’t seem to want to cooperate. It keeps clotting off just as the needle is sinking into the vein.

Last Saturday, Sean said we should start using wet needles to lessen the tendency to clot. That worked Tuesday, after they used a second venous needle because the first clotted even with it being primed with saline solution.

This Saturday, we tried 3 venous needles before it gave a satisfactory “push-pull.” Once it was in there, I got a whole minute’s worth of treatment before the machine beeped “no go” and we switched to my chest catheter. Treatment went pretty well until the last half hour when my blood pressure crashed to 66 over ??. 200 ml of saline pushed back and a 6 oz. cup of ice water later, the pressure came up enough so I could go home.

During Thursday’s treatment, Jodi asked about the clotting problems I was having. The nurse and I both told her they’re not new. I’ve had problems with clotting since I first started dialysis. I’m back up to 15,000 bolus of heperin during each treatment and at 5 mg. of coumidin because they’ve been trying to establish the arm access. My personal opinion is that that needs to increase to at least 7.5 again.

These, Mr. Peckham, (cough, cough) are a few of the reasons I don’t yet feel comfortable with the idea of home dialysis. If and when things even out for me a bit, I just may consider it.

When I got my paperwork from the Mayo transplant assessment several of the doctors commended me for continuing to work while on dialysis and encouraged me to keep doing so  for as long as possible.

I’m willing, but fiscal responsibility has reared its ugly head in the dialysis world to put obstacles in my path and the other Tuesday/Thursday/Saturday dialyzers who are still working.

Before Tuesday’s treatment, the nurse manager of the unit asked to speak with me privately. “Are you taking me to the woodshed for my T-shirt,” I asked.  I was wearing a cheeky T from ihatedialysis.comthat features a big black skull and crossbones with green dollar signs in the eye sockets and above that the pseudo word die-aly$i$.

No, it wasn’t about the T-shirt, she said rolling her eyes a bit.  When we got into the conference room, she said it was no longer economically feasible for the center to keep the late run on Tuesday/Thursday/Saturday open because there weren’t enough patients to justify the number of staff needed and the other costs associated with keeping the shift open.

I can understand that, but once again it puts me in the position of adjusting my life to suit the disease.  Yes, they can take my treatments to Monday/Wednesday/Friday and give me and earlier treatment time (2 p.m.) but that means I’ll have to adjust my work schedule to 5:30 a.m. to 1:30 p.m. and hope I can make it across town to actually be on the machine by 2. I am lucky that I probably can adjust my work schedule to accommodate that, though I told her I’d like to dialyze as early as possible on Fridays because they’re my “Runaround Sue” days when I take Mom to doc appointments, shop the discount stores, etc. 

It also disrupts my Wednesday night knitting. Harumph. Tonya said that with a 2 p.m. hook up, there should be no problem getting to my 6 p.m. knitting group. 

 I don thin so, Lucy.  My treatments are 41/2 hours.  It takes about 20 minutes to take me off the machine, if everything is going well. 41/2 plus another 1/2 hour comes to 5, on my calculator. And 2 p.m. plus 5 hours comes to 7 p.m. Add the 15 minutes across town to get to the knitting group and I might as well forget it. The coffee shop closes at 8.

On the other hand, as Tevya would say, I won’t have to fly from the Saturday knitting group to make it to an early dialysis hook up.

My plight isn’t as aggravating as a couple of the other patients on the Tuesday/Thursday/Saturday rotation. Both have jobs that are less flexible as far as time is concerned. Both were justifiably upset at the change in an already difficult routine.

Those Tuesdays and Thursdays are very long for me now.  I’m at work by 6, get off at 2, run home to change clothes, put the emla cream on my arm access, and put my feet up for 1/2 an hour before it’s off to dialysis and at least 5 hours of pre-treatment, treatment and post- treatment machinations so it’s at least 8:30 before I’m off treatment. By then, I’m usually so hungry I need to stop on the way home to eat.  That takes it to 10 p.m. usually. Go home and put my feet up for about 1/2 an hour before it’s imperative that I go to bed so I can get at least 6 hours of sleep.

On another note: Why don’t I have any savings? Hmmmmm, could part of it be that I picked up a portion (granted, it’s the largest portion) of my monthly prescriptions yesterday and even with a prescription plan the total was $223.  From now on if someone asks me why I haven’t built a lovely little nest egg I’m going to say that I don’t have issues with saving but I do have illnesses that keep me from saving.

Is that enough whining for one day?

I don’t know about where you are, but where I am we’re in need of some bright spring color. The daffodil above isn’t a shot from this year. It’s a Jim Slosiarek shot from last year … about 2 weeks earlier in April. 

I haven’t seen a daffodil or tulip yet this year or forsythia for that matter.  We do finally have a few smallish (3 inches high or so) leaves on the rhubarb clumps in the backyard.  We’ve also had a couple of days of sunshine. Thank you, Mother Nature, more would be appreciated.

On the dialysis front:

The blood tests Dr. J ordered came up showing no Lupus.  That’s a good thing. But since that takes us back to scratching heads and furrowed eyebrows, it’s not very satisfying.  The thighs seem a little better though it’s kind of like trading one pain for another.  The swelling seems to have lessened but the pain at the sites of the nodules seems to be more intense and I’m noticing increased size in some of the vessels near those sites.  The skin over the swellings is still reddened despite the hydrocortisone lotion I’ve been applying and I’m still getting the sharp pains that seem to come from nowhere. Hmmmm, wonder if anyone I know practices voodoo.

It’s 9:48 Monday morning and I’m already tired. Maybe, if it’s still nice when I get off work, I’ll take my knitting down by the river and soak up some sun.  I

Thursday’s treatment was going pretty well. I’d dozed through most of it, three hours, but woke to a nurse saying they were taking all patients off the machines and into interior hallways because of the tornado warnings.

Tornado? I hadn’t noticed.

Once I was off the machine, Trish loaded my stuff onto the recliner with me and began rolling me through the hallways to the safe area. Curtis was rolled ahead of me, Trista, Arlene and Cathy behind me. Luckily, it was an abbreviated number dialyzing that evening.

Trish halted my recliner and turned it sideways. Oh, good.  She parked me right in front of the doorway to the biohazard room. Hope the door doesn’t blow open.

Techs and nurses took vitals once we were relocated and told us we would be weathering the storm here until an “all clear” was issued. Then it would be decided whether to return us to treatment or end the sessions with the possibility of making up the lost time Saturday. 

Sounded like a plan, but I had a little over an hour left and was not relishing the idea of a 51/2 hour treatment on Saturday. Gabe suggested I bring in a couple of my favorite movies to pass the time more quickly.

It was just over an hour before the all clear came. The decision was to send patients home.

We here in Iowa are a bit cavalier when it comes to tornado warnings but even as we’re poo pooing the need to seek shelter, we know we do so at our own risk.  They are violent storms, truly destructive killers, that seem to come hell bent for leather from nowhere without any warning.

Well, using the hell bent term just sent me searching the Net to find its origins. You have to admit, it’s a strange juxtaposition of words but they do seem to get the urgency across.  It seems to be attributable, at least in part, to Rudyard Kipling.

So, of course, that made me think of the pioneer days.  What do you suppose they thought about that natural fury? It’s something to contemplate. Even less warning there with no weather forecasters or emergency sirens.

It also makes you contemplate the idea that for all the modern machinery, computers, etc., to save life, we can still be at the mercy of Mother Nature.

I took  my leg swelling problems to Dr. J, my general practitioner, yesterday.  Not only is he an osteopath but he was a pharmacist before he became a DO.  I have a high regard for osteopaths in general and an especially high regard for Dr. J. He’s good people and a good doctor.

I wanted to run the problems and symptoms past him before I decide whether to make an appointment at Mayo, my nephrologist’s suggestion. Dr. J has a fine way of looking at the whole person, at least in my way of thinking, and that’s what I want right now.

He ordered lab work for some specialized blood tests that help identify rheumatological diseases such as lupus or scleroderma (I think many of my symptoms fit scleroderma or nephrogenic systemic fibrosis).

It’s not that I have to put a name to this - I don’t know if it’s a disease or what - but there are some drugs associated with each that might mitigate my pain.  If it is either disease, there’s no cure so finding a way to live with it is extremely important.

I’ve learned in poking around on the Net that calcium deposits are definitely something to be avoided, if at all possible.  So I have redoubled my efforts to take my phosphate binders with each meal and cutting back on my already abbreviated cheese consumption.  I can do without milk and ice cream, but cheese…oh, please.  I’ve always been like the little girl in the Christmastime commercial who attributes her huge hall of goodies from Santa to the fact that “I didn’t leave him cookies. I left him cheese!”

Sylvia passed away Tuesday.

I asked about her at Tuesday’s treatment, but the dialysis unit had not yet been informed of her death. “Every single patient I’ve had today has asked the same thing,” Gabe said. He said he expected her to “withdraw” from treatment.

It was not unexpected of course. She was 94 (according to her obituary. Sorry for adding 3 years, Sylvia.) and dialysis can be a strain on even young pups like me (61). But I’ll miss her spirit.

I think that’s the third death in less than a month and that’s enough for me, thank you.  Each one is pause for reflection, at least for me and I think that’s probably true of many of the patients on the unit.

Lately my thoughts have been running along the lines of “so, you’ve been on dialysis for a little over a year.  That’s a year’s worth of ‘extra’ living. What have you done with it? Have you enjoyed it? Appreciated the fact that you’re still here? Noticed something that made you stop to think you were lucky to be here to notice it?

I don’t obsess over the situation, but I do think about it - and life in general - much more than I did a couple of years ago.   

One of the downsides of having dialysis patients in a separate unit is there is so little opportunity to see a progression to wellness. Just hanging on to the status quo can be an accomplishment for dialysis patients.  Many are in and out of the hospital and when they do “withdraw” it seems to sneak up on us other patients: See someone at treatment on Tuesday and they may look a little tired, a bit pale, not be feeling well and by Saturday - or Thursday, for that matter - they’re dead.

Kidney failure and dialysis puts different strains with different side effects on your body.  It’s also hard on your immune system so you become more susceptible to the viruses and germs floating in the air.  You’re already sick on dialysis and the dialysis itself sets you up for more illnesses.

The result seems - in my vast year’s experience, she said with tongue firmly planted in cheek - that you watch people struggling, instead of to get well, to not get any sicker. No wonder transplant shines like the sole beacon of hope.

Not for myself but for Sylvia.

When I first started dialysis a little over a year ago, Sylvia was one of the first patients I noticed. She usually is in the waiting room waiting for a bus ride back to her nursing home when I first get to the dialysis center.  She’s not talkative, in fact, she’s profoundly hard of hearing. But she’s got spunk, you can tell.

She’s not always quite with it, probably a side effect of her age, 97, and when she does speak it’s usually in cryptic single word answers to questions.  She’s wheelchair-bound and, frankly, not very patient when it comes to small things. Of course a life requiring huge patience — waiting for the bus to take her from her nursing home to dialysis, waiting in the dialysis waiting area to be put on treatement, waiting through the 4-hour treatment, waiting for the bus to pick her up afterward — may be the cause of her quick-tempered responses to small inconveniences.

But, as I said before, she’s got spunk so her shortness comes across not as mean but as self-protective, self-actualizing. She’s done nothing to do so, but she’s wormed her way into my heart and earned my respect by her own assertiveness.

Some time several months ago, she was off her machine late and was in the waiting room by herself when she scooted her wheelchair back on the dialysis unit.  When one of the staff asked, raising his voice so she could hear him, where she was going, she replied a hearty “destination unknown!”  I think that’s what did it for me. 

Often when I arrived at dialysis, I would try to help Sylvia by opening her juice for her or getting her a cup of coffee.  You have to be very careful with the temperature of coffee because whether it’s scalding or not, Sylvia drinks it in big gulps that could burn her mouth and esophogus. Though no thanks are forthcoming when she receives the cup, you can tell she’s grateful just by the way she drinks it.  I can understand. Dialysis gives me a powerful thirst, too.

Earlier this winter, when the temperatures were freezing and the winds high, she was in the waiting room when I arrived but had just a coverlet wrapped around her shoulders, definitely not enough for even the short exposure from building to bus. I had a cap on that I had knit, kind of a crazy little hat that seemed a distinct throwback to Cindy Lou Who or a little Dutch girl with it’s top peak and string ties on the ear flaps. It was a bit goofy, but warm because it was 100% wool.  I took it off and told Sylvia I was sending it with her to help keep her warm. I pulled it onto her head and over her ears. She didn’t really acknowlege it, though she certainly didn’t say “no” to it either. 

Several treatments later, Sylvia was again in the waiting room when I arrived. This time she at least had a light-weight jacket on. A nurse came out of the unit and over to Sylvia. “You forgot your hat,” she said as she pulled it onto Sylvia’s head. “It’s cute,” she said. Sylvia, at her cryptic best, just croaked, “silly.” Made me grin.

I wasn’t grinning Saturday, though, as I watched the staff try to get Sylvia to respond to her name.  She was on the same “team” as I, across the row and a few chairs up the line.  She was turned on her side and curled up in the recliner. She looked more like a frail child than an elderly woman. During the first 3 hours of my treatment, they tried to bring her to conciousness but were unable to rouse her. Finally, an ambulance crew came to transport her. I assume to the hospital.

I would have liked to have known Sylvia at a younger age, at least I think I would (smile). And I know 97 is a long life. I hope it was a good one, too. So if she would die, there is little to mourn of a life cut short, but much to mourn in losing an indomitable spirit.

I hope you’re doing well, wherever you are, Sylvia, and I hope I was able to warm your ears if not the cockles of your heart. Keep tellin’ it like it is!

I walked into the knitting group last night when what to my wondering eyes should appear but a lovely pink gift bag and a flock of duckies, so dear.

Just when it seems kind of lonely on this road, up pop friends with support and encouragement. The duckies - definitely of the species rubber - were floating on a turquoise textile pond of polar fleece bound to a second layer of bright yellow.  The artist of the warm wooly, Mary, knitting friend and vocal patient advocate who’s been riled on my behalf since she learned there are no blanket warmers on the unit.

The double layer of polar fleece, hand tied by Mary, is her way to keep me warm during treatments while she tries her best to remedy the situation.

The pink bag contained not one, but two surprises from another knitter friend, Devry.  The first suprise came upon openning the hot pink gift bag. Once the flap was opened a hip-grinding electronic version of “Wild Thing” blasted out through the coffeehouse. I was ginning and dancing in my chair and Devry, grinning back at me, said when she opened the bag, it reminded her of me. (big smile) I take that as a compliment.

Inside was a pedometer which left me a bit baffled until Devry explained she was doing a walk 10,000 steps a day challenge and she thought a pedometer might be a fun way for me to ease into more exercise. “You can just try adding 25 steps a day, you know?”  Hmmm, I wonder if dancing to “Wild Thing”, one of my favorite thumping rock songs to dance to, will count too.  I’d love to get into shape where I could do that again.

Such a surprise, and so special to me.

Thanks, Mary and Devry, you certainly made my day.

Remember when I encouraged you to vote for Jenna, an Iowa City dialysis patient, in the Davita.com Kidney Idol contest? She won, as I told you awhile back, and I just found a great photo and and article about Jenna.  Read it here