Stayin’ alive

A kidney dialysis/transplant diary

Only a bird in a guilted cage

I have a lot of thoughts running amok at the moment and what strikes me today is the amount of guilt I find associated with life with a chronic disease. So many things that used to be thoughtless, truthfully, require examination now.

Maybe its my protestant upbringing or German background, but examination usually ends up in my feeling guilty. Though I hadn’t thought about it, today I realize I feel guilty far too much of the time.

Take that extra drink of water? yes … no … yes

GUILTY

Eat that unleeched pile of high-potassium garlic mashed potatoes? yes … no … yes

GUILTY

Hurt too much to get on the treadmill for 5 minutes? yes … no … yes

GUILTY

Letting the aches and pains keep me from work? yes … no … yes

GUILTY

Forget — on purpose — to check blood sugar? yes .. no … yes

GUILTY

Unable to keep to the eating plan I know is the only way I’ll qualify for a kidney transplant? yes … no … yes

GUILTY

Feel like all of these medical problems are my fault because of lifestyle choices? yes … no … yes

GUILTY

And that’s only the beginning. I’m feeling a bit overwhelmed lately.

Now if I only had a piece of geld for each guilt, I’d have my retirement assured.

February 27, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

A little catch up

This just in:

Renal Support Network is holding a regional Patient Lifestyle Meeting on Sunday, March 30, 11 a.m. to 5 p.m., at the Highlander Conference Center on Interstate 80 in Iowa City.

  This entirely free seminar will include a kidney friendly lunch and interactive presentations by both kidney professionals and local patients. Anyone with high blood pressure, diabetes, or other risk factors for chronic kidney disease, as well as current dialysis and transplant patients, will benefit from the wide ranging topics. 

Renal Support Network, a patient-run and patient-focused organization provides non medical services to those affected by chronic kidney disease. RSN helps patients manage and take control of their disease by providing knowledge and hope.

 To register, visit www.rsnhope.org  or call 1-866-903-1728 (Toll free).

* # *

Ya know, taking that “time off” during the holiday week probably wasn’t such a good idea since it led directly to the slippery slope which has now escalated to avalanche, I do believe.

I keep trying to get back to that dry weight — I’m now within 2 kilos if (and it’s a pretty big if) I can keep away from the liquids. That is extremely difficult to do.  It’s hard to deny yourself a long icy drink of water when your mouth feels like acres and acres of parched cotton fields. A good deal of that is because of the medications (especially the furosimide); some of it is from sinus drainage; some of it probably from old age.

It’s difficult denying yourself something that seems so elemental and necessary to life. The little tricks (chewing ice, chewing gum, sucking on hard candy, eating grapes) help a bit to moisten your mouth, but sometimes what’s needed – at least for me – is well past moistening. I fantasize about chugging, not beer but Diet Coke or iced tea, both liberally laced with fresh lemon.

Anyway, I’ve got to grab control of this runaway train and get back to the low-cal diet and clamping down further on the liquids.  Dialysis removes fluid from the blood stream, but not from the tissues, which is of course where the body pushes the fluid when there’s leftover after treatment, etc.

I don’t know about the doctors, but I’ve pretty well determined for myself that the  lumps on my thighs are pockets of fluid trapped in the tissues. I’ve said it before, if I could just sleep like a bat hanging from the cave roof, it would probably help the fluid situation greatly.

One reason I’ve come to the conclusion about the fluid: The lump moves and reshapes itself to fit spaces it’s pushed into. I purchased a wrappable heating pad yesterday and spent two hour-plus sessions with the thing wrapped loosely around my right thigh. When I unwrapped the thigh, there were compressed areas that echoed the shape of the heating pad exactly.  The warmth had increased the movement of the fluid greatly. Now if I could just run the leg through a wringer …

I’ve been meaning to recommend a couple of recipes, too. I haven’t had time — or made time, that should be — to create a week’s worth of menus, but I have tried several renal friendly recipes.

First: Easy Crock Pot Beef Stroganoff

The basic recipe is pretty good and the meat comes out especially tender. I ended up adding more light sour cream because the consistency was more dry than I like and I think next time I’ll add mushrooms to the mix. The recipe is suitable for Diabetes, dialysis and non-dialysis CKD

I made a double batch of meat and froze half for the basis of a meal later.

Second: Lime and Cilantro Chicken Dinner

The chicken had a bright taste on this one, even though I managed to overcook it (not the recipe’s fault). Instead of plain rice, I made the rice with pineapple juice from a can of pineapple chunks and tossed the chunks into the finished rice, too.  The squash I ended up adding sweetner (a brown, too). All in all, pretty tasty.

February 25, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Rough going

WARNING: Some material in this post borders on disgusting.  If you have a particularly weak stomach, you may wish to stop reading here.

Tuesday’s treatment was rough. The fistula was cooperating but my body, not so much.  I lost another little portion of my dialysis virginity (not to mention a great deal of human dignity).

I’d managed – until Tuesday evening – to avoid having to eliminate any human waste during dialysis. Wow, the euphemisms will be flying today. I’d protected that virginity mainly because I hate having to use a bedpan.

Add to using a bedpan, you’re using it in the middle of a “ward” setup which means only a couple of flimsy curtains and a metal and cloth screen shield you from seeing or being seen by others and provides no filter for, uh, well, shall we say aromas?

Yes, gentle reader, I was the victim of a sudden – and urgent – episode of loose stool. Since I’ve been dialyzing, loose stools are not unusual nor is the need to find bathroom facilities quickly, and I do mean quickly.

Pinned to a recliner with a needle in your left bicep and a catheter in your right juggular is not an enviable position to find yourself in when that undeniable call of nature hits.

“Oh, please, no,” was my initial thought. “This is never gonna happen without an accident.” I let the nurses and tech know immediately that I needed to go to the bathroom. They were, of course, all busy.

The bedpan was provided almost in time. Note, I said almost.

Now, I don’t know about you (and I sincerely hope you never have to find out), but I’m not adept at rolling on and off a bedpan in the wide expanse (ha!) of a hospital bed and even less so in a recliner. Especially when one arm is not at my disposal because it has a needle precariously poked in its bicep.

Meanwhile the peristalic action is becoming even more pressing and I’m starting to feel slightly sick to my stomach on top of everything else. I had to stand up to get my jeans and (by this time soiled) underwear down.

Obviously this is part of the disgusting bits I mentioned. I’m telling myself as I write this that I promised myself I’d be as honest as possible.  Today, that’s a promise I find hard to keep.

I also need to stand to situate myself on the bedpan. With my arthritis, using my arms extensively to get out of a chair is a necessity. When I did that, all focus on me and my dignity immediately shifted to the needle in my arm and making sure it didn’t dislodge.  That’s to be expected and is undoubtedly where the focus should have been, but to me it felt a bit like “sheesh, even in this immediate urgent situation, the machinery and its operation is more important than the patient.”

I didn’t voice that, but I’m not going to say my “picture of the whole” kept me from feeling that. One of the more denigrating aspects: My motion was so limited I couldn’t clean myself. That’s not so much humiliation from having to have the tech do the cleaning as it was from knowing I was going to have to pull my underwear and jeans back up and sit for another 21/2 hours until the treatment was finished. Or I was. I wasn’t sure which would come first.

Is it crazy of me to think a commode would be much easier to handle in at least some of these cases? A commode would feel a little less unnatural and would also be easier to enter and exit than a bedpan in a recliner. It is, after all, all about me.

So, of course, I felt somewhat drained. Then my blood pressure started dropping. I could tell because the fluorescent lights suddenly took on a bright aura. Then the shakes set in. I’m not sure if it was from the cold (blanket warmers would have been great) or because I was slightly shocky, but they set in pretty strong. I had my fleece blanket and a sheet over me and was still shaking underneath.

“Only 38 minutes to go,” Connie said to me, “I’ll bet it can’t go fast enough for you.”

How true.

Once the treatment was over, I felt pretty weak. Sat down 3 times before I made it out to the car. I sat in the car for several minutes until I was sure my blood pressure and all was in better shape before I drove home.

Once I got home, I stripped out of my soiled clothes right in the laundry room and started them washing. Then streaked (as in bare butt) to the bathroom and the shower. Once out of the shower, I made a beeline to the Immodium to forestall any further episodes, I hoped.

I did eat something because I was quite hungry. Dialysis has a tendency to make me feel hungry and the fact was I hadn’t had anything to eat since a scant peanut butter sandwich about 2 p.m. It was 10:20 by the time I got home.

My stomach roiled and rumbled but did settle somewhat by 1 a.m. I woke at 5 when my alarm went off, sat and assessed how I felt for about a half hour and decided I did not feel well enough to put in 8 hours at work, so I called in and slept until 1:30.  Even after that sleep, I dozed on and off in my recliner during the rest of the afternoon.

I’m still not sure if it was flu or something associated with the whole ESRD thing, but just in case it is flu-associated, I’m full of Immodium.

And this I know to be true: I can no longer convince my dialysis mates that my excrement has no odor.

That which does not kill us only makes us stronger.

February 21, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 6 Comments

A little fun

philposter.jpg

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

Dr. Zhivago where are you?

My world

Uh huh. That was the scene out the windows of my world yesterday (Sunday). We ended up with another 61/2 inches bringing the total snowfall here in Cedar Rapids to a glorious 54 inches. That’s 41/2 feet. That’s up to my armpits. That’s enough, already!

It’s not close to the all-time record during the winter of 1942-43. We need another 30 inches or so to reach that record. When someone told me that, all I could think of was, “Wow, what a bleak winter that must have been, especially for Midwestern families with troops in the war.” Then I thought: “Still not too different than today.”

Roads are really treacherous around here and have been all day. Will probably continue to be all night because under all that heavy, wet snow is a layer of pure ice. 

The guy across the alley clears the alley, sidewalks and stairs for our house in exchange for the use of one of the stalls in the garage. Much to his credit, he’s kept up with the snow this winter better than the city has around our neighborhood.  He cleared the alley, walk, stairs and driveway area near the garage last night.

This morning – garbage day – I knew getting the 2 bags or garbage out would be easier, but when I got to the end of the garage I was faced with what looked like a hockey rink of sheer ice about 20-30 feet in all directions but backward.

Since I use a cane to guard against my right knee giving out, it’s awkward on the best of days to get the garbage out to the alley. This morning, in the subzero air, I stood mentally measuring if I thought I could cross the ice without falling flat on my ask yourself, not a good thing for dialysis patients whose high phosphorus levels (which suck the calcium right out of our bones) leaves us at high risk for broken bones following a fall.

I inched my way out onto the ice, pushing one of the bags in front of me with the cane, feeling none too secure. Once the bag was at the edge of the alley, I turned slowly and shuffled my way back to the relative safety of the cleared walk. 

I did not want to venture onto the ice with the second bag, but there was some serious garbage in it since our disposal has been on the fritz for a couple of weeks. The solution: Garbage bag shuffleboard. I eyed the placement of the bag, saw the ice was glossy slick and I had a pretty clear shot, so I grabbed the ties of the bag, got my feet firmly planted and gave a hefty shove.

 SCORE!

WooHoo! I felt like I was part of a successful curling team and I didn’t even need anyone to sweep the path clean.

I got back to the garage side door and thought for a few moments that the lock in the doorknob might be frozen, but I finally got it to work. Getting out of the garage turned a little hairy when the back wheels hit the ice outside the door. Luckily, I managed to miss the snow-blade on the neighbor-across-the-alley’s pickup and get my car turned so I could slide down the alley and into the street. Jewel lived up to her name.

I’ve been hearing rumblings that another major snow storm is expected here this coming weekend. It’s tempting to start rooting to break the all-time snow fall record, but I don’t think so. Any robins bob, bob bobbing along here are gonna end up at the bottom of the deep freeze. Sheesh.

February 18, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

I’m back

You may have wondered where I was. Been away from work and pretty much everything else for a week. 

I was near exhaustion, I think, physically and mentally and decided I needed to just shut down as much as possible for a week or so.  It’s helped a little, but not as much as I would have liked.

I did keep my feet up most of the week in hopes it would help move some of the fluid from the backs of my legs and legs in general and push it closer to the heart of the matter, so to speak, in eliminating it. Pulling fluid from the toes is just that, like pulling fluid from the toes.

I had ultrasound done on both legs Thursday because the doctor thought I might be experiencing external phlebitis. I’ve Googled external phlebitis and not come up with anything I understand very well. So I’m not sure what she was looking for, but the ultrasound did not show any deep vein clots.  That’s a relief, but doesn’t answer the question of what’s going on with my legs.

The ultrasound, by the way, though a non-invasive technique, hurt like hell even though it normally doesn’t.  I felt like a real wimp, too, because I know it usually doesn’t hurt and here I was tightening up like knotted wire, wincing and occasionally gasping from the pain. The poor tech kept apologizing to me and I kept apologizing to her because I knew she felt badly for causing the pain.

The doctor’s reading was basically, “try to limit your fluid more.”  Her nurse-practitioner suggested continuing the warm packs, too.

Another possibility I need to discuss with the dialysis doc or my own GP is Baker’s Cyst.   If it is, it’s probably due to arthritis and the PRICE principle might help (Protect, Rest, Ice, Compression, Elevation). And restrict my fluid intake even further. See, I did listen, Doc.

Tuesday is the target date for renewing use of my fistula.  I’ve been on reduced coumadin since 3 days before so my treatments are being affected.  The dialyzer is heavily streaked and near the end of the treatment my blood is clotted enough to trip the machine. Hopefully we’ll be able to add some of the coumadin back so treatments run more smoothly.

I slept or dozed a good part of the week and I think toward the end of the week it was getting to Mom a bit. There’s always this unspoken expectations that “things” will get done during time off from work but this time I opted not to do “things” so I didn’t. Nothing like screwing up someone else’s timetable for you.

Guess what? It’s snowing here…been snowing 5 hours or so and on top of rain that wasn’t quite frozen when I left for work this morning. What fun! The word for the day from the county dispatchers (I do a round of cop calls on Sunday mornings) was “crappy.”  How true.

I may or may not try to go to the grocery store after I get off work.

February 17, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Made it

snowblower

It’s Thursday and there are 13 new inches of snow on the ground. Sheesh.

Of course that’s not the total because there was already snow on the ground. To heck with snow boots, hip waders are needed if you’re going to venture into unbroken snow areas.

I got to work all right Wednesday morning. The snow was deep — and slick — in the streets but still navigable and Jewel (my 1993 turquoise Topaz) was tucked into the parking space by about 6:10 a.m.

When it came time to think about going home, my first second and third thoughts were “If the plows haven’t hit the side streets yet, I’ll never make it.” Listening to the scanner traffic all day long, I knew there were 5 snowplows stuck (How in the world do you dislodge a stuck snowplow?); several city buses; a number of police cars and lord knows how many civilian drivers.

I called a local cab company but was told it would likely be a 2-hour wait. I told them I’d try to make other arrangements. I put out an email to the general newsroom asking if someone had 4-wheel drive and could give me a ride home. Jamie responded in the affirmative.

I was glad I’d asked and took that option because when we got to my block, not one snowplow had passed in front of my house and the alley, driveway and sidewalks were still untouched as well.  Jewel would probably never have made it through that deep snow.  Actually, I don’t think there was any probably to it. 

Just wading through the snow and up the front steps was a challenge. Then, of course, my house key was hanging over the calendar in the kitchen. Took some pounding on the door before Mom heard me. (Her hearing is really bad, but she refuses to discuss a hearing aid. That’s another story.)

So we snuggled in for the evening. Finished a little vest sweater for the orphanage in Kosovo, watched a little TV. I think it’s a bit screwy, but the only “reality” show Mom and I watch is Project Runway. Don’t ask me why because I don’t think I could tell you. But the bitchiness — I guess — captures our fancy.

The kids here have yet another snow day today. If this keeps up, they’ll be in school until July 4 this year. Snows like this one were more fun when I was a kid. Especially after I got my 5-foot Flexible Flyer. Now that was a sled! Wood and steel. You had to sand, polish and wax the runners to get the best speed.

This snow also reminds me of the year I spent in Duluth. Snow, snow, snow. Everywhere. From early in the season to early June.  When I got back to campus from Easter break, the snow in the enclave was over my head and above the door frames of the first-floor rooms. There was a tiny path dug through that mass of snow to the front desk. Walking sideways and carrying the suitcase in front, the snow on either side was well above my head.  When my parents picked me up on June 10, there were still 10-foot piles of snow packed around the lamp posts.

The Minnesnowtans at the school used to have a joke: “If summer comes on a weekend this year, let’s have a picnic!”

We’ll see how treatment goes tonight. I’m already tired today, the swelling behind my legs is no less and still painful. There’s still a small lump at the access site.

stthomas

I need a vacation.

February 7, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Here we go again

If it’s a dialysis day, there must be a winter storm watch in effect.

And there is. It starts in about 8 minutes and we can expect 6 to 12+ inches of snow in the next 27 hours. Thundersnow, too, and at times as heavy as 3 inches per hour.

Seems like it snows — and pretty heavily, too — every other day this winter and those every other days coincide with my dialysis treatments. Whine, whine, whine. But it is getting tiresome.

Nothing like feeling drained, literally, and dragged out and finding you’ve 4 or more inches of snow to clean off the car before you can even crawl in and start it.

Why is it I live inIowa???

The infiltration of the needle site is still evident, though not as bad as it was.  I called the dialysis unit yesterday and Kathy suggested I use hot and cold packs on the lump.  I didn’t get the cold packs done, but I did wrap my bicep in an arthritis heat wrap and left it on for 8+ hours.  It seems to have helped the reabsorption.  I wonder if they’ll even try to use it this treatment.

Oh, and the bruise? It’s about the size and shape of a small barlett pear with the needle access directly in the middle of the bottom bulb.

The swelling continues behind my knees, too. I’m trying to cut back on the sodium intake (though I usually do anyway, I’m being even more cognizant of potential hidden sodium) and trying to limit my fluid intake to less than 40 oz. a day.  I’ve done a pretty good job of that, but the way the swelling behind my knees hangs on, it makes me wonder what the end result is going to be.  I’m going to mention it again, I’m not sure if wrapping it would be advisable. Not sure I want to push it up into the thigh.

Maybe I should take a few days off so I can get my feet up for a consistent time.

Just confirmed an early shift of the treatment.  I may still have to battle snow on the way home, but I’d rather battle 6 inches than 9 or more.

February 5, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 2 Comments

Fistula use 1 and 1

I arrived at dialysis Thursday prepared for the first attempt to use my fistula: Skin numbing cream applied and plastic wrap protecting it from being rubbed off by clothing; Dead Woman Walking T-shirt on to make it easier to get to the fistula; St. Fiacre medal around my neck (I’m not Catholic, but when you find a saint who is patron for both fistulas and knitters, you wear it, right?).

I was shown how to wash the fistula area with antibacterial soap, my temp and blood pressure were taken, and I was ready for the sharp end of the needle.

Nurse Sue was soon at my side with her “template” of the path of my fistula. They used a 15 gauge needle and it truthfully hurt very little, only when the needle actually pricked through the skin. Sue couldn’t get it started though, so she told Lori to give it a try. Luckily, the needle didn’t have to be reinserted.

Lori got it started by simply “going a little deeper.” So, with one line to my left arm and one line to the catheter in my right jugular, I sat for 41/2 hours hardly moving. I discontinued my coumadin Tuesday evening, so the machine was turning off more than usual and by the end of my treatment my dialyzer was heavily streaked, but all in all the first use was deemed a success. WooWho!

Jackie, one of the techs, tried to prepare me for the idea that I may not be able to knit with this access. I know she just doesn’t want to see me get my hopes up high to have them dashed, but let’s just try it and see if it works. Maybe not the first week or month, but who knows, maybe 3 months down the path my arm will be settled enough that I can knit small-movement things. I certainly hope so.

I wish I could say I was back to my dry weight, but I’m not. I’m trying hard today to keep my liquid intake well below the 48 ounces because this extra fluid in my legs, though somewhat better, is still annoying and painful, so much so that I finally filled the pain pill prescription I was given about a month ago. It seems to be helping. I’m more aware of that toward the end of the 6-hour dosage course when the pain killer effects are wearing off.

The Dead Woman Walking T-shirt went over well at the dialysis unit, with both patients and many of the staff. I’m sure some may have thought it inappropriate, but like I said when I ordered it, it makes me smile a crooked smile and that’s good enough for me.

Saturday’s cannulation attempt didn’t go as well. The arm was properly numbed — though I just realized that I forgot to wash the access — so the needle going in didn’t hurt. The scab came off easily and Lori thought she got it first time, comma but…

My vessels are tricky. They roll, they hide, they skitter away as if they have some kind of radar telling them when a needle comes close. After a couple of pulls, Lori was able to get the blood flowing into the body of the syringe, but before she even tried to return the blood, the needle site infiltrated, in a nice big lump. It’s still lumpy and sore today and there’s a 50-cent sized bruise surrounding the needle site. The thrill is still there, but it’s more difficult to find in the infiltrated area.

It’s not unusual to be unable to use the fistula during the first few tries, according to the nurses, so I’m not disheartened by the second try being aborted. I have this urge to wrap my upper arm in an Ace bandage, though, to put some gentle pressure on the infiltrated site, but I’m resisting the urge.

The fistual being used has added a few more don’ts to my life like “don’t sleep on your left side and don’t sleep with your left arm under the pillow.” I tend to fall asleep on my side, but usually it’s the right side. I did wake a couple of times in the night and started to roll to my left side when I remembered, “DON’T!”

I’m going over to Davita.com to see if I can get some quick menu ides. Adieu!

February 3, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 5 Comments