Stayin’ alive

A kidney dialysis/transplant diary

Is it winter already?

Yesterday morning I looked out the dining room window and it was snowing. October 10 is a bit early to be donning your lacy white dress, Mother Nature.

It’s 9:22 a.m. and the temp is 28. Chilly start to Sunday indeed.

But all is well in Hawkeye land with their win over Michigan last night.

Pirate’s blues

So how have you been? I’ve been doing pretty well for the shape I’m in: an overweight one-legged pirate who can’t pee standing up not because of the missing leg but because of the kidney failure.

Find myself getting frustrated with being in a wheelchair but obviously not enough to work with the prosthesis.  Right now, it seems like an awful lot of trouble to try to get it clicked on and, with the recommendation to check for blisters after every short walk, it also seems like a lot of trouble to wear.

I’ve got to get the motivation back though because the prosthesis is the key to more freedom. Driving, for example. Getting in and out of cars, for example. Seeing things from an adult height, for example. Being able to close the door on a public handicapped toilet stall, for example. Getting more exercise, for example.

I keep telling myself all these things while I’m sitting in the wheelchair grousing  to myself about how awkward it is. Some days it feels like the witch who lives in the chair just wants to do nothing but place an obstacle in the path of every action I want to take.

It’s a joke

I wore my “Dead Woman Walking” tee shirt the other day. It does seem to carry a doubly ironic message these days. It seems to have upset a couple of the little old ladies here who are in denial for me. They can’t quite grasp the reality of the shirt and see none of the intended humor in it at all.

One, a 95-year-old, stopped at my breakfast table and said, “you’re such a pretty woman, why would you want to wear a shirt like that?” Ummm, because it’s the truth and it makes me smile, wry though the smile may be. She didn’t understand.

Internal (as in medical) update 

Not much to update here.  I have occasional gastric discomfort accompanied by excessive (and embarrassing) flatulence. I’ve managed to control the loose stools with a daily dose of Immodium. I visit a gastroenterologist November 10 and I’m sure he’s going to tell me that’s a bad thing. Hope he’ll have some suggestions on how to control both the flatulence and the stools.

Aren’t you happy you read that paragraph?

It’s still a daily battle trying to control the sugars, the potassium, the phosphorus, etc.

Internal (as in mental) update

I’ve been keeping busy preparing items for a bazaar we’re having here at Brook View Dec. 5. I’ve been knitting neck cosies, hats, mittens, dish cloths and, believe it or not, a nativity scene including the wise men, shepherds, sheep and a donkey.

I’ve also been crafting some beaded ornaments — angels, Christmas spiders, Christmas trees — with more to come and painting bisque and plasterware ornaments. I hope to have some pictures to share soon.

The bazaar will benefit our activity  fund and perhaps a charity or two.

In the spiritual realm, I’ve kind of settled on a comfortable relationship. Every night before sleep I have a little discussion with Great Spirit ( my mind balks at a gender-specific creator).

 I thank spirit for another day that I wouldn’t have had if it weren’t for dialysis. Some days it’s difficult to do, but I try to remember whether the day was good or bad, it was another day. I ask Spirit to cup my friends and other loved ones to heart and to help them deal with troubles. I ask the same for me and that the next day will be productive and have some laughter and happiness in it.

And what did you do on your summer vacation?

October 11, 2009 Posted by | kidney | 1 Comment

To post or not to post

I’ve pondered over whether or not to write this post for a couple of months and finally decided it was an unappreciated sense of loyalty that’s kept me from so doing.  So I’m posting.

Once again I feel myself let down by an organization I’ve defended stoutly for years and from a profession I obviously hold to a much higher standard than most.

I’m speaking of The Gazette.

And of journalism.

I guess I am and always will be too idealistic about what I expect from particular newspapers in specific and journalism in general.

A few basics: I was not “educated” for a journalism career but learned my profession from on-the-job training and working first for a rabble-rousing Irish editor/publisher, John McCormally, who one Saturday morning backed one of the Hawk Eye’s  biggest advertisers out of his office while he bellowed loudlyand forcibly that no damn advertiser was going to tell him what he could and couldn’t print. The advertiser, in his reverse haste, tripped over an electrical recepticle and continued his frenetic retreat in a crab crawl across the floor with Mac looming over him and in so many words telling him to haul his sorry ass out the door.

Mac, by the way, won a Pulitzer for reporting on the Kansas murders that were the basis of Truman Capote’s “In Cold blood.” He was highly political, liked to rub elbows with nationally-known Democrats and fired his reporters to take on a challenge and to not be afraid but to take pride in wrestling with difficult issues.

He was an intense and colorful role model and it was great fun to cut my journalist’s teeth under his leadership.

I started out as a proofreader there, worked my way up to a feature reporter position and from there did practically every beat from lifestyle to political. No sports or business, though. Anyone out there remember proofreaders?

I eventually became City Editor.

The second editor/publisher I worked for at The Hawk Eye  was Stuart Awbrey, winner of the prestigious E.B. White award and a champion of local journalism. He was wont to tell his reporters that covering the big stories was fine and wanted but to never forget the local stories ( garbage pickup will be delayed two days this week) were  just as important and maybe more so to readers than revealing the identity of “Deep Throat.”  He was right.

Stu once told me he believed my ethics were actually too high because I refused free membership and the food needed for a weight-loss program because I said the only way I would write the stories about my weight loss would be after I’d successfully maintained the loss for three years. They decided that would be too long to wait for the hype they were after.

Loyalty was important at that newspaper and it was pretty much a two-way street. I did eventually burn out from the long, long hours and the daily deadline stress.

I also had become disillusioned with what seemed to be a wide gap between what newspapers espoused to believe – workers’ rights and fair pay for work done, for example – and the reality reporters and editors lived under.

Took me five or six years before I could actually contemplate working in a newsroom again and when I signed on with The Gazette’s online efforts, we weren’t supposed to be in the newsroom.

So why am I disappointed by The Gazette?

It comes down to this: I began this blog on Gazette Online. I’ve written it for several years now at no cost to The Gazette and had a slowly building audience with views to the blog usually totaling 200+ a week, no wildly successful national blog but respectable, I think, for a very narrow-scoped blog.

And now that I no longer work for The Gazette – their decision not mine – I felt my blog helped represent a voice from the community and presented decent copy at no cost to their budget.

When Gazette Online was redesigned recently, Stayin’  Alive was cut from the blog list with no warning, with no “thanks we appreciated your content contribution but we’re limiting the blogs on the site.” No nothing.

Someone asked me just today if I was going to do more writing for The Gazette because he missed my reviews etc. I told him I didn’t think so. The Gazette told me at the time – about now – last year that they wanted me to provide some content for them and that they’d be contacting me. No contact followed.

Though I realize the whole industry is in flux – or maybe that should be in toilet flush – the callousness and discourtesy shown me, a former colleague, has soured me on The Gazette.

They’ll get no “community content” from me.

October 2, 2009 Posted by | kidney | 7 Comments

It appears I took the summer off

I didn’t intend to, but I was a little funked out and Mom was really ill for a couple of months. Turns out part of her problem was liver stones. Yeah, that’s right, liver stones. I didn’t know there were such things. It was a surprise because she had her gall bladder and its stones removed about 15 years ago.

She had some big babies — 4 were about 2 cm each — and a host of  small stones.  They transferred her to U of I hospitals to remove them. She was in and out of there in a flash and the way they dispatched her home disturbed and still disturbs me. I know there’s a drive to shorten hospital stays to save on costs but to send a 90-plus-year-old home without first contacting the family member (me) living in the home and transporting the patient via the airport shuttle vehicle and dumping her in an apartment with no one to attend her is, to say the least, in my eyes BAD FORM.

Oh yeah, they also had been told that I was an amputee using  a wheelchair. How much physical help could they really have thought I would be to her?

They had no physical therapy evaluation in the papers they sent home with her but told one of the nurses at the assisted living building (Ridgeview) associated with our senior center that she could care for herself.

Hockey puck. She couldn’t get out of her chair herself.

Also, they sent her home still having extreme pain and muscle spasms in her back.

You’re practically defenseless in a hospital if you’re old, don’t hear well, don’t have a family member or a patient advocate at your side at all times. Of course, the doctors, nurses, etc. when questioned about things all said they had  explained to her. I couldn’t be there but I’ll bet I can tell you none of them asked if she was hard of hearing or spoke up when they saw her hand cupped by her ear.

She’s sharp as a tack, bullheaded and vocal about her rights but she’s also proud and not likely to ask beyond one time for someone to speak up.

Shortly after she was unloaded at home – it did seem to me they treated her like cargo – we knew she was in desparate need of physical therapy. Her GP in Iowa City helped us out with a script for PT that allowed us to place her in a nearby care center that has its own PT department.  She was there about 3 weeks and is now back with me though she’s not fully recouped.

I’m having a devil of a time getting her to move beyond an occasional trip to the bathroom, but I keep trying to motivate without nagging.

Wonder where my streak of stubborness comes from?

A change in direction

I’ll be back blogging more often but the blog entries will be more general though I will keep talking about dialysis and the journey with kidney disease, diabetes and all the other lovely medical issues in my life.

Feels good to be back.

September 19, 2009 Posted by | kidney | 4 Comments

It takes a village

Knitters, in case you don’t already know, are extaordinary, generous people, at least in my book and my expeorrience.

It had been nearly a year since I’d been able to make the regular Saturday morning coffeehouse meeting of our totally non-exclusive all-inclusive band of knitters, but thanks to yarn buddies generous with their time and willing to wrestle a wheelchair and its occupant (that would be pirate-legged me), I’ve been at the last two Saturday gatherings.  It felt great and like the world had returned to a bit of normalcy.

It was awesome just to be out on an excursion that had nothing to do with medical woes and necessities and to be in the passenger seat of a car rather than rockin’ and rollin’ with the wheelchair strapped down to the floor of a bus with few, if any, shock absorbers. The wheelchair goes into the very back of the bus here at the center. I swear if I were a lactating mother my child would be feeding on milkshakes after each ride.

It’s also a treat not to have to wait and wait and wait some more for transportation. What a luxury to be able to just leave or go at the notion. It’s one of the marks of lost independence that galls.

But back to generous knitters. There were 8 of us there this morning. Not one was working on a personal project. All those flying needles were working yarn for new babies being born, socks for relatives, washcloths for troops overseas, stump socks for unknown amputees, and an afghan for an unknown family.

That’s the way it is at most gatherings of these knitters.

They’re generous with their time and support, too. Last June’s flood destroyed my yarn stash, an admittedly embarrassing horde that filled a closet underneath the stairwell in our apartment. My clothes were stuffed — and I do mean stuffed — into an antique English wardrobe because I turned my closet into a yarn trove.

  It all washed down the river.

But my knit buddies came to the rescue and created a new stash for me with contributions from their stashes. The yarn filled two large wicker hampers, several smaller baskets and a tote or two. None of which I’d had a chance to sort through until Thursday night when the “west side”  branch of CR Knits descended on the center here, commandered the community living room, whisked up my stash and proceeded to organize, sort and catalog all the yarn.

 When the evening was done, I had a ring for each hamper on which an index card for each yarn — along with a tiny snippet of the yarn — dangles with the card telling the weight of the yarn, the fiber, whether it’s washable, the yardage  and possible projects for the yarn.

How divine. And what a generous gesture of time and support.

The west side knitters come from all over town and started coming over here on Thursday evenings so I’d have knitting company even though I couldn’t  leave the building physically.  We also have a little offshoot of knitters who stop by on Tuesday afternoons to spend an hour or two knitting.

These women have made sure I know I can count on them and made certain I never feel isolated.

They are indeed a close-knit group of friends.

June 6, 2009 Posted by | kidney | Leave a comment

Been awhile

I’m still here and things are perking along.

A physiatrist, a prosthetist, and a physical therapist …

Sorry, no joke to follow.  That’s the appointment I have set for June 4 at an amputation clinic here in town. I saw the physiatrist yesterday. He, according to the head of the PT department, should help me pull all the different elements together. He also has special interest and knowledge of prosthetics.

His name is the same as a particularly unsavory (in my opinion) celebrity but I refrained from asking if he could do the moonwalk. He also answered the question I had as to why the top PT was so excited to hear that I had made an appointment with the physiatrist: I will be the first patient to utilize the clinic.

The PT’s excitement at my telling him of the appointment reminded me of that of a college instructor I had 10 or 15 years ago when I went back to school for a couple of semesters at the University of Iowa. I was of a mind to finish my degree in theater and had enrolled in a class called “Black Action Theater” because it sounded interesting and, frankly,  because there was room in the class. The class did prove very interesting, among the reasons because it gave me a taste of being a part of the minority in a community.

The first day I walked into the class, the instructor’s face lit up. I thought it a bit strange to see such a reaction but chalked it off as an instructor admiring the chutzpah of an older — or as they euphemized it at the time “an alternative” — student returning to college.  That, it turned out, was only one of his reasons he was happy to see  me in his class.  The other was because he planned a production of “The Wedding Band,” a play that examined an interacial marriage during the time of World War I.

He needed someone to play “a bigotted old white bitch” (my words) and I walked through his door, near the right age, the right color and gray hair, and I could play a bitchy white mother (“Herman’s mother” was the only name in the cast list).

Tryouts proved interesting, too. I knew I was giving a fairly accurate performance during the practice readings in the hall when a young black man stormed down the corridor away from me because he was angry at the words I was using and the disrespect the words conveyed.  When he came back up the corridor, he apologized and said he knew I was just donning a  role but it made him angry to hear the words. 

The director did choose me for the part and when he telephoned to tell me I told him I was sure he realized that the feelings expressed in the play were nowhere near mine but I knew the part needed to be played with stinging realism to make the impact needed. “Please make sure my classmates know I’m only playing a part.” He did.

The performances were intresting, too, and I received one of the best compliments on a performance when a woman came down to the stage after the performance and said: “Girl, I nearly came down here and slapped you upside the head!”

Phosphorus report

The Fosrenol seems to be working for me. My phosphorus level was down to 5 from 9.3. We are, however, still working on a way that I can afford the prescription. I’m leaving that in the hands of the ever competent Jodi and Dr. V.

Getting a leg up

I have made 4 PT treatments in a row! WooHoo!

I’ve walked over 500 feet with one donning of the leg and only a teeny tiny blister formed that I babied along without having to call a total halt to using the leg. By George, I think we’ve got it!

“Private Lives”

That’s the  working title to my historical fiction though I’ve yet to set cursor to the blank screen for chapter 1.  The research for both the book and the family is going well though it’s slowed the last couple weeks. It seems I have a literal bevy of babies I want to knit frillies for. I’m just halfway through 7 hat and booties sets and still clicking needles like mad. It does give me a break from the confuser and this keyboard that frustrates me nearly every time I sit down to it.

May 16, 2009 Posted by | kidney | 3 Comments

Wow and whoa

My phosphorus is high and that’s not a good thing. My level is about twice normal at this time. Functioning kidneys play a most important role in eliminating excess phosphorus. Non-functioning kidneys — mine — play no role. You can read some of the particulars here on the National Kidney Foundation site.

There are medications called binders that help in the elimination of excess phosphorus by binding in the colon, but because they are available doesn’t always mean they are practical for the average patient. I just got a call from my pharmacy saying the latest drug prescribed for me, Fosrenol, is not in the formulary for my drug plan and is not covered by preauthorization. It’s cost: $600. “Is that for 90 days,” I asked. “No, that’s for a 30 day supply,” she answered.

Back to the drawing board … or should I say prescription pad.

And back to revising the diet. Got to cut out more cheese, dairy products, nuts, whole grains, chocolate, dark colas … and the list goes on. Believe me, I already cut back on many of those things when I learned I had kidney failure.

Kidney disease sucks. A big one

April 28, 2009 Posted by | kidney | 5 Comments

A leg to stand on

I’m back in the prosthetic but watching the skin situation very closely.  The prosthetist brought the silver socks and did some retrofitting to the interior of the leg. It seems there are dual or even triple problems: 1) diabetes has stressed my skin; 2) in the place the blisters form, there are adhesions to the bone; 3) we’ve had problems establishing the contact necessary to combat blistering.

I’ve got to start making myself wear the prosthetic daily — starting with short periods — and need to work not only on exercises to strengthen the leg muscles but on loosening my hamstrings. Nothing like sitting at a desk for hours on end to tighten hamstrings.

Adieu to a friend

Minnie passed away last week. Another dialysis comrade I hate to say goodbye to. I learned a tremendous amount about her from her obituary. She was a strong woman who was instrumental in many community projects.  We’ll miss her around the waiting room table.

Mary Ann is back

Mary Ann is back at dialysis but not to her apartment. It appears this last illness may necessitate her moving into an assisted living center. She looks much improved and says a visit from Hershey, the cat she loves as much as chocolate, helped speed her recovery. It’s great to see her smile and bright blue eyes again.

Book research

The family and Civil War research is keeping me busy and at the computer for long hours at a time. The prosthetist tells me I need to start wearing my leg and elevating it at least slightly while I’m working. I think I’m going to have to get a small desk to accomplish that. Right now, the laptop sits on an oak TV tray.

The family research, of course, has gone well beyond the Civil War, actually in both directions. I mean how can you narrow your focus to a specific period when you find all this information? I find myself thinking, “I’d better get this into the family tree while it’s in front of my eyes.”

I’ve just started reading Shelby Foote’s narrative history of the Civil War and have learned more about the causes and political atmosphere in the first 75 pages than I ever learned in school.

All the time I’m reading and working, the book is on my mind: Where I want to start; who I want to include; what family stories; where I want to place it (I’m thinking dual settings as in both the homefront in Henry County and wherever the war takes I Company).

Needless to say, it’s all keeping me busy and that’s a good thing.

April 27, 2009 Posted by | kidney | 1 Comment

Silver lining

The blisters are almost healed. The scabs are gone and the new skin, though tender, seems to be doing well.  I will return to physical therapy next Wednesday.  The prosthetist will meet me there and we’ll be trying some new things one of which is a silver lining sock.

I’ve always wanted to have a silver lining to my life.

The silver helps to lessen stress on the skin, combats sweating and helps lower the risk of infection. Definitely good things for a diabetic amputee.

An encouraging visit

Dennis and Donna stopped by treatment Friday for a visit. Donna is recuperating from what appears to be a successful kidney transplant at University of Iowa Hospitals. She was all smiles and reported she’s happily peeing on a regular basis, drinking in the amounts she wants, and making rounds of social visits.

I say Wundebar! I was grinning as we talked because I was so happy for her and pleased to hear of her success. I told her we needed to have visits from  her because they’re an instance of progress we seldom see at dialysis. It’s more common to hear of regression. We all fight to keep the status quo and often feel — rightly so — we’re in an uphill battle.

I was doing a little self-examination as we talked: Was I jealous or envious of Donna’s new kidney and new found liberation from renal diet and fluid restrictions? Was I thinking, “Damn, why couldn’t that be me?” Actually not really. I was just happy to see Donna so happy and doing so well. A great deal of that is due to Donna’s positive attitude and sincere concern for others.

And speaking of concern

Please keep the name Mary Ann in your thoughts for good wishes. She’s another positive thinker with a bright smile who’s in hospital right now with a severe infection that’s kept her in intensive care far too long. All of us at the second shift on Monday/Wednesday/Friday are pulling for her.

April 16, 2009 Posted by | kidney | Leave a comment

Blistered sister

Damn.

And double damn.

I returned to physical therapy Monday.  Walked about 300 feet and did a one-step exercise. Joe also gave me a good hamstring stretch.  This is all good. uh huh. Decided to take my leg off once I got into dialysis so I wouldn’t stress my skin too much. About 21/2 hours into treatment, they did a foot check and asked to see my stump as well.  “You’ve got blisters here.”

Damn and double damn.

We called off PT for the next two sessions at least  and put in a call to Sherri, my prosthetist, to see if she could tell me what I’m doing wrong that’s causing the blisters. She just returned the call as I’m writing this post and told me to wait til she can take a look at the situation before I attempt to use the leg again. That’s a no brainer for me. The last thing I want to do is set up an infection. I’d rather be overly cautious than lose more of my leg, but at this rate it feels as if it will take a year to get in 2 weeks of PT treatment.

Jodi, the physician’s assistant in Dr. V’s office, prescribed something other than Immodium to try to control the loose stool problem I’ve been having. I certainly will be relieved if it works. I’m tired of doing a prewash rinse out of nightgowns and underwear. I know: too much information.

But, the sun is shining and the snow has melted and we’re not in flood-troubled Grand Forks, so smiles are in order.

March 31, 2009 Posted by | kidney | 3 Comments

Caught up

I’ve been caught up in getting caught up on a number of things and then, of course, I’ve been caught up in the beginning research for my historical fiction.

Where to start?

Prosthesis update

I have the second prosthesis complete with a more dynamic foot and I will begin physical therapy sessions again on Monday. I must admit I’ve lost some ground and I need to find my motivation again. Part of it seems to be from my sleep pattern changing. It’s proving difficult for me to get my considerable butt outta bed in time to get the prosthetic on to go down for breakfast or catch the dialysis bus. I’ve got to get back in the habit of getting UP when the alarm goes off.

The prosthesis is a much better fit, much lighter and more easily accommodated in “normal” clothes. Pulling on the liner sock takes more time because it is a much tighter fit and needs to be carefully positioned so the pin is in the proper place to fit into the female receptacle in the leg itself. I seem to be unable to get it right the first time which adds to the frustration level when I’m rushed for time.

Frustration level

My frustration level seems to be lower recently, too. I find myself grumbling out loud when things – seemingly small, inconsequential things – go wrong. I bump into a waste can trying to turn my wheelchair in the bathroom and a grumble erupts; I catch the wheelchair on the corner of the bed and a grumble comes forth; I hit the side of the apartment door while trying to exit and  I’m belching minor profanities as I wrestle my way through; the cursor on this laptop jumps up or down the page – as it just did – and I’m gritting my teeth.

You get the picture.

It’s tough when you think you’ve been patient and resilient and you’re trying to keep your attitude good and these inconviniences literally bump into your life. I want  to say, “Don’t bother me. I’m up to my neck trying to deal with the big stuff in my life and I could quit sweating some of  the small stuff  if you’d just quit slapping my face with it.”

Some not so small stuff to sweat

I’m also disconcerted by some stuff I consider not so small. I’ve been urinating very little the last couple of weeks. Even with the boost of a diuretic, I seem to have very little urine. I’m worried about what that means in the progression of this disease and what it means on the more personal  level of how much fluid I can intake during a day.

I try to keep within the 48-ounce restriction each day, but it is extrememy difficult for me. I feel deprived of fluid all the time even though I may make the 48-ounce restriction only once each week. It’s one of those things that makes me wish for a transplant. Dr. V has asked for me to bring a urine sample Monday to test for possible UTI or other problems. I hope I can gather enough for a sample.

I’ve also been having a long-standing problem with l oose stools (aren’t you sorry you asked? Oh, that’s right, you didn’t ask but I’m going to tell at least a little of them). The attacks hit so suddenly that clean up can often be necessary. It makes one loathe to get more than a hundred feet from a bathroom, preferably in one’s own home.

I’ll leave it at telling you I am now wearing Depends overnight as a precautionary measure and believe me it is no small blow to my dignity to mention my “preventive” measures.

Also, I seem to be suffering neuropathy in my right hand and lower arm. It’s bothersome in many ways including not being sure of my grip because the feeling in my fingers is numbed. It may be some arthritis in my right collarbone pressing on a nerve or it may be diabetes. I don’t know but I don’t like it. And yes, I know the collarbone is a strange place for arthristis, but so it was diagnosed.

Meanwhile, back at the . ..

The research for the novel is going well. I’ve learned an amazing amount both about my family and about the Civil War. I came home from a grocery store shopping trip Thursday with an expandable file, a small stapler, a set of highlighters, a ream of copy paper, index cards and file folders.

“You’re really serious about this,” Mom said.

Yeah, I really am.

March 28, 2009 Posted by | kidney | Leave a comment

Follow

Get every new post delivered to your Inbox.