Stayin’ alive

A kidney dialysis/transplant diary

Perspective

The mass devastation left in the wake of Sunday’s tornado in Northeast Iowa put things more in perspective for me at the moment.  My pain and frustration is little – I won’t say nothing – compared to that unbelieveable chaos. My pain, frustration and discomfort seem inconsequential compared to the loss of life and lifestyle, disruption and desolation that occurred as Mother Nature raged across the land.

We were lucky here in Cedar Rapids when later that evening the storm struck here.  Winds and rains were incredible, but the storm howled around us doing little damage.

Yes, spring and now summer is almost here, but it has not been a gentle year thus far. The winter snows were hard and unforgiving, the spring storms now ravaging land that has yet to recover from the severity of winter.

I need to find some way to contribute help and I’d like to do it in more than a monetary way. I may contact the Red Cross to see if they need or would accept knitted items for the survivors.  Yeah, I know it may sound dorky to some, but knitting is, for me, a way to give more than just money to  a cause.  I see the stocking caps and slippers I knit for our troops as truly handcrafted warming hugs from home (and no, I do not support the war but I do support our troops). My cap and scarf sets for the local Coats for Kids program is a like effort. I think of kids being warm on the way home and maybe having fun knowing they have a spiffy, one-of-a-kind hat and scraf set. The afghan squares I’ve been making for the Pine Ridge Reservation keep my hands busy with idiot knitting that serves a purpose, again to warm those in cold Dakota counties.

Some how those busy hands help me mitigate my pain and feel productive.

I’ll see if there’s a need for any of those things in Parkersburg, Aplington or New Hartford.

May 28, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

That which does not kill us

Adj. 1. exquisite – intense or sharp; “suffered exquisite pain”; “felt exquisite pleasure”

intense – possessing or displaying a distinctive feature to a heightened degree; “intense heat”; “intense anxiety”; “intense desire”; “intense emotion”; “the skunk’s intense acrid odor”; “intense pain”; “enemy fire was intense”
(Source: Free Online Dictionary)

***

“The pain is exquisite,” Dr. Knutson said. “Finally,” I thought, “someone knows what’s going on and what I’m feeling.”

Once the biopsy on my thigh was ordered, it was accomplished with speed thanks to a cancellation at the dermatologist’s office. I pushed for the biopsy and/or referral to University Hospitals in Iowa City pretty emphatically at the end of Monday’s painful treatment.

I told the nurse the pain was exhausting me, that I was concerned with the change in appearance at the core of the area because it appeared to be the beginnings of an ulcer, that it wasn’t so much that I needed a name for whatever it was, but I needed relief from the pain.  It was, I said in less lady-like terms, time to defecate or get off the pot.

When I arrived for treatment Wednesday afternoon, there was a note saying the biopsy was scheduled for 7:30 a.m. Thursday.  The speed of scheduling was due to a cancellation. The wait otherwise could have been as long as two months.

Wednesday’s treatment went much more smoothly than Monday’s. After I got home, I called work to let them know I wouldn’t be in until the biopsy was completed and depending on the pain, maybe not then.

Thursday morning I arrived at the dermatologist’s office a few minutes after seven.  I filled out the pre- paperwork and was in the consultation room a little before 7:30.  Dr. Knutson – tall, dark, handsome and youngish – looked carefully at the swelling and the irritated area and said he really didn’t need to do a biopsy to diagnose the problem. It is “lipodermatosclerosis with atrophie blanche.”

He hasn’t seen many cases of it on the inner thigh, but said it is a “progression” of the chronic stasis dermatitis on my lower legs, a byproduct of poor circulation and diabetes, I’m sure. Again, something with no cure but there may be hope in managing the pain and thwarting the progression now that someone knows what it is.

Believe me, it’s a relief knowing that someone knows what this is.  I’m not happy thinking that the woody feeling of my lower legs, their dark pigmentation and sometimes weeping blisters can continue up my legs, but for the near future, knowing the enemy is better than guessing at what horrible thing is now occurring in my body.

Even though the diagnosis required no biopsy, Dr. Knutson performed one to make sure there are no other complications involved. Well, you know, no other other than the obvious: diabetes, hypertension, venous stasis, kidney failure, etc.

Dr. Knutson prescribed some extra powerful hydrocortisone-like cream to apply to the left thigh which is much less compromised than the right thigh.  I’m to apply it twice a day for two weeks and then twice weekly.  I’ll need to wait on the application on my right thigh until the stitch closing the biopsy site heals.

Meanwhile the pain — which Dr. Knutson described beautifully as “exquisite” — and sleeping seem to still be controlled only through pain killers (hydorcodone) and sleeping aids (Ambien). I truthfully am not fond of those or their combination, but the pain is disruptive as is not being able to sleep.

 

 

 

 

May 25, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

No rhyme or reason

Dialysis has brought more mystery to my life:

Why did my kidneys bomb?

Why is my blood like sludge?

Why are my thighs swelling and so painful?

Why do the pain pills work sometimes and seem to have no effect other times?

Why do some treatments go relatively easily and others seem nearly intolerable?

Monday’s treatment was a first. The pain from my legs and cramping were so bad that I pleaded to be taken off treatment an hour early. The cramps are usually limited to my feet, calves and occasionally my hands. Monday, in the middle of the pain killer not working and the zinger pains racing through my calves, the cramps (which have not been a problem for the past month or so) began hitting my calves early and started snaking their way up the insides of my thighs.

Those are cramps you do not want to experience, my friends.

The only times my treatments have been ended early, the choice was prompted by something mechanical.  I want those treatments.  I know I have to have them and the more efficient they are, the better I’ll feel.

As much as my butt rebels and my restless legs want to send me flying from the recliner, as boring as it can get, even with the cramps or nausea and falling blood pressure, I’ve managed to grit my teeth and finish a treatment.

 Not Monday.

I suspicion the wrestle in the rhubarb patch the day before had something to do with my muscles cramping  and probably also weakened the pain killer’s killing capabilities.

I think most of the staff at the unit would back me up when I say I’m not a wimp or a wuss and I try not to complain, but I was whimpering and close to tears. Turning my target off and pushing some saline back helped  ease the cramping.

It was a shame to give in, too, because the treatment started so well. Lisa got both needles in the access on the first try. I was thinking, “OK … this treatment is going to go smoooooothly.”

So much for that thought.

May 21, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

And the winner is

 

One of the perks that came with the new apartment is a small patch of rhubarb. Yum. If you – like I am – are a rhubarb lover, you don’t want any of it to go to waste. I pulled a big batch of ruby-beautiful ribs last week and marked in my mind that I needed to pull a batch again this week.

Yesterday afternoon was sunny, cool and breezy. Just right, I thought, to pull a second batch of the tart-sweet treat. When I got home from work, I stopped at the patch before I went into the house and tugged at the stalks – 1,2,3, 4 – until they released from the soil and laid the untrimmed ribs next to the rhubarb patch. Not easy to do with the cane in hand, so I dropped the cane next to the uncleaned stalks. I carefully worked my way around the patch until I’d picked a couple dozen ribs then decided to go inside and get a bag and the kitchen shears.

Armed with a large cloth bag and the kitchen scissors, I returned to the little patch. I toyed with the idea of taking a folding camp stool (my legs tire extremely easily these days) but dismissed the idea because the footstool has no arms and therefore might prove problematic when I was trying to rise to the occasion.

As I approached the rhubarb, I noted several large stalks I’d missed in the initial picking.
The lawn is a little uneven around the patch. For that matter, it’s a little uneven throughout the lawn. I planted my feet to pick the last couple of stalks, bent down and tugged — 1,2,3 — and on 4, the tug required a bit stronger pull. I pulled, and it pulled me over face first. I landed in the soft lawn on my right shoulder.

“Hmmm,” I thought as I gazed at the patch from a whole new angle, “how in the hell am I going to get up from here?” The legs being what they are(‘nt), the arthritis in my knees, my excessive weight and my being out of shape, the answer seemed to be “I’m not getting up from here.”

So, while I was ruminating on the problem, I cleaned the rhubarb. Might as well get that task done, right?

As you can see by the rough layout above, there’s a concrete sidewalk on two sides of the lawn. I was between the sidewalk and the left stand of rhubarb, my feet toward the porch steps.

It didn’t take long for me to clean the rhubarb or to assess my situation: I had nothing but my cane to try to use as a means of leveraging my body to a standing position.

My arms, obviously, are not as strong as they should be and with the relatively new fistula I didn’t think it wise to use my left bicep vigorously.

The house was about 60 to 70 feet away and its accessibility was confounded by the porch steps.

Mom is very hard of hearing and refuses to get a hearing aid.  I was not going to rouse her by yelling and I had nothing with which to make a louder noise.

I tried butt walking, thinking I might be able to pull myself up if I could get to the wrought iron porch railing. There was just enough incline and uneveness in the lawn to make that an impossible task. “Now what,” I thought. “Mom will certainly check on me in a little while, but it’s getting warmer out here and who knows how long it will take her to check, if she doesn’t fall asleep in her chair.” Hours of waiting while she snoozed in her chair danced in my head.

Where’s your cellphone when you need it, idiot? (On the kitchen counter, of course, who needs a cellphone to pull rhubarb?)

I needed to get to the porch.  If I couldn’t pull myself up, I might be able to back up to the stairs and somehow haul my considerable butt up a step to get some leverage. How to get to the porch.

OK, so maybe I can roll my way there, if I can’t butt walk. I immediately thought of the seals at Fisherman’s Wharf in San Francisco. “Oh, what a pretty picture this should make,” I thought, “but to hell with those seals and full speed ahead.”

I rolled. First couple of tries called for some adjustment … the lawn isn’t quite as soft as my mattress, but I got a routine down: roll, grab the cane and toss it ahead 3 or 4 feet; grab the clogs and toss them as close to the cane as possible (might want them when trying to raise from the grave … er, ground.)

I would hope there were no neighbors watching because if there were, they should have come to my aid. But I could visualize them laughing at their windows as they watched the strange ritual: lumbering roll, toss, toss; adjust the body so not rolling on the cement; lumbering roll, toss, toss …

Necessity is a mother.

I finally made it to the porch. Battle half won? I certainly hoped so.

My first attempt was to back up to the bottom step to try a backward push up, hauling my butt up one step to get a better footing to pull myself to standing.

I don thin so, Lucy.

Five or six attempts later, I decided I needed another plan of attack: Twist my body to the side, pull up on the railing with my left hand and push up from the step with my right. OK, that’s working somewhat, now if I can get my left foot in a position to help with the push then get on my right knee (cross fingers and pray to Arthur Itis) …

Almost. So close, but I couldn’t put my body weight on my right knee and my screwed up right thigh was crying out about the stretching on the swollen areas.

Still, I attempted several more times before giving in.

I had my cane, so I started banging on the outside wall of the laundry room hoping that somehow Mom might be passing and hear it.  I tried several times, with long, protracted pounding getting no results.

Finally she heard. She opened the backdoor. The first thing I said was, “Don’t get upset. The only thing that’s hurt is my pride, but I cannot get up. You’re going to have to call 911.”

“Can I help you somehow,” she asked.

“No, and I don’t even want you to try. Just please call 911.”

“Should I bring you my walker?”

“No, I don’t think that would help because I can’t put my weight on my right knee.”

She finally went in and called 911. “They’ll be sending a fireman out to help you,” she said, “but no rescue squad.” It’s was a few minutes later when a firetruck arrived at the front of the house and four well-muscled young men came to the back porch.

“Hi, guys,” I said, “just sitting here catching some rays, but it’s getting a bit old.”

Are you hurt, was the general question asked several times. “Just my pride,” I said, and told them that I’d noticed no extraordinary pain as I rolled like a seal from the rhubarb to the porch.  The only excruciating pain I felt was when I tried to put my weight on my right knee.

Two of the guys put a hand under each armpit and lifted me, almost like a feather, to a standing position. It felt pretty danged good, pardner.  They asked again if anything hurt, I said no and no again when they asked if I needed help up the porch stairs. “Not once I’m on my feet” and I proceeded to grab the rail and make my way up the stairs.

When I checked the kitchen clock, I’d been outside for an hour and a half. 

I may have to bake some rhubarb muffins for that firehouse.

 

May 19, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

‘Tis a puzzlement

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.

May 6, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Take a look

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.

May 4, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment