Stayin’ alive

A kidney dialysis/transplant diary

A few reviews and a new endeavor

The three audience reviews I read online praised Who Lives?, the play that opened on World Kidney Day in the LA area, for its dramatic qaulity and black and white set. Bill Peckham of Dialysis From the Sharp End of the Needle doesn’t quibble with the dramatic content but says the entire story isn’t told and provides links to “the rest of the story,” as Paul Harvey would have said. Read his entry.

I would still like to see or at least read the play. Vested interest, don’t you know.

Meanwhile back at the homestead

As the waiting creeps on for vocational rehab and direction from The Gazette, I’ve decided to begin research on the 14th Iowa regiment, I company, during the Civil War. My great-great-grandpa served in the regiment, fought at Shiloh in “the Hornets nest” and was captured – along with over 200 other soldiers from the 14th – and discharged at Macon, Ga.

I’m thinking of writing a historical fiction based on his service, the homefront in Henry County, Iowa, and the family connection. There’s plenty interesting about Henry County at the time and about David C.’s family and neighbors. The story could start with the early pioneer days (David C. is first noted in the 1854 census but family names show up even before that date).

The county was also a settling place for Quakers as they met their way across the country. Those Quakers became part of my ancestry, too, and the push and pull they must have felt when it came to serving the union would have been strong considering their abolitionist tendencies and their pacifistic religion.

I’ve done some genealogical research on David C. beginning nearly a decade ago, put it aside too early and lost all the accumulated paperwork in last year’s flood so I’m duplicating now. I find it much easier to find information online than it was 10 years ago.

The realization David C. was a Civil War vet came from that earlier research, at least to my mom. I found the obit for David C., who had moved  many of his family to Oregon in the late 19th century, and read of his service. I soon asked Mom, “Why didn’t you tell me David C. fought in the Civil War?” Her answer was that she didn’t know he had.

Filling in the years after David C. left Henry County was nearly impossible at that time since a fire had destroyed the county courthouse in Oregon and most records of the time were destroyed. Perhaps I’ll  have better luck in this search.

Why historical fiction? Because I have no diaries or family papers to use as resource. Of course that means I have to set a plor, develop tension, develop character, set the scene, etc., not to mention find an agent, a publisher etc.  So don’t look to add the book to your Christmas list.

What do you think, should I blog about my search for David C. and the progress of the novel? In this blog or start a new blog?

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March 15, 2009 Posted by | kidney | , , | 3 Comments

I’d like to be in LA LA land this week

World Kidney Dayis March 12 and among the observances is the opening in Los Angeles of a play, Who Lives?.
I wish I could be in that opening nght audience.
It is a play about the first dialysis treatments offered in the U.S. and how the difficult decisions of who would receive treatment were made. Made by committee, how difficult it must have been deciding who was to receive treatment and therefore a reprieve of the death sentence they faced.
Such decisions should not be put in the hands of men, you could say with certainty, but medical advances have led to questioning medical ethics in many areas besides kidney disease.
It would seem times have changed and dialysis may seem available to all those in need, especially with Medicare provisions to help those of us who need the lifeline of dialysis. But will it remain so?
It’s a nagging worry at the back of my mind. Treatment for me totals – literally – hundreds of thousands of dollars a year, even at the reduced costs to insurance companies and Medicare.
Is my life worth it? Does my contribution to society warrant such an investment? Am I self-denigrating to even ask?
Sometimes the questions themselves can be overwhelming and I can tell you I am not so altruistic as to forfeit my “right” to treatment.
How would I have felt had I been one of the early dialysis patients waiting on a committee decision as to whether I deserved treatment or not? I don’t know, but I suspicion it would have depended on the decision made.
How would I feel if such decisions become part of the future of dialysis patients? It certainly could happen with health care costs on the rise and the number of dialysis patients surely on the rise as the number of Type II Diabetes patients climbs.
It often seems that the one control, the one decision I can have over my life is whether to continue with dialysis or not. A life and death decision, to be sure, and at this point one I do not wish to relinquish to a committee or to anyone else.

March 8, 2009 Posted by | kidney | 4 Comments

Good stuff, Maynard


I know people are out there looking for good things to eat on a renal diet. I know I was/am and I can tell others are by the number of times search engine requests for recipes and menus show up in my blog stats.

I haven’t been talking much about food on the blog because since the post-flood move to a “senior living center”, food isn’t much under my control. I don’t set the menu. I don’t make the food. I don’t cook in our apartment and I can’t afford the extra $200 a month to ask for a special diet.

All I do is eat around what they serve and, frankly, bitch about the taste.

I wouldn’t have the cook’s job here for anything: 20-plus residents who’ve been honing their individual food likes and dislikes for decades, a meat-and-potatoes generation who think sticky rice is a cook’s failure and blow torches have no place in a respectable kitchen. Add to that the kitchen staff cooks for two other buildings and you end up with suggestions in the box that would make the proverbial sailor turn scarlet and are nearly impossible to accomplish physically.

Then along comes a resident who  is a Type II diabetic with end stage renal disease. Talk about your diet restrictions, hoo boy. Just trying to order the “breakfast as you like it” can be like navigating a nutritional minefield.

Juice? Well, sure, but no orange juice (too much potassium and phosphorus not to mention the high sugar content). Grape? Um, too much sugar. Tomatoe? No, too much sodium (makes your body retain water, a real no-no for a renal patient, especially one like me with hypertension.) Cranberry? Well, that’s about as good as you’re going to get on a renal diet. Could I get that  ‘light’? Afraid not. Juices are dispensed through machines and there are no ‘light’ versions available through the suppliers.

Toast? OK, comma but (here it comes, the dreaded comma buts) no raisin toast. Raisins are like plague to the renal diet. Too much potassium and phosphorus. Uh, and whole grains aren’t good for renal patients either. Ditto the potassium and phosphorus stuff. (There goes the daily bowl of  oatmeal and the tasty 12-grain toast.) There is a loaf of nasty old white bread on the shelf. Have some of that.

Protein? By all means. ESRD patients need all the help they can get warding off illness and helping to build necessary things like red blood cells. And protein doesn’t elevate blood sugar (always remember that diabetes is at the root of most ESRD). Bacon, nope… too much salt and fat. Ditto ham. Cheese? No, gotta limit dairy products to 4 ounces a day. Eggs? Not the best cholesterol-wise, but a girl’s gotta eat.

All these decisions, all this denial and it isn’t even 8:15 in the morning.

Lunch and dinner offer even less control. The menus are made by the kitchen staff. Today’s lunch: Chicken fried steak with white gravy; mashed potatoes with brown gravy; creamed peas; baked custard. Sound a little, oh I don’t know, can you say starchy or carb loaded?

Potatoes are a staple on the menu here, of course. People like them, they’re filling and cheap. I love them, too. (Ready for the comma but?) But I shouldn’t eat potatoes unless they’re leached overnight. The kitchen staff ain’t about to do that, believe me.

The peas are so-so, the breading on the steak, again so-so, but when you tally up the carbs (which matabolize like sugar which is bad for a diabetic… well, I think you get the picture).

I think I’m lucky my labs have been as good as they have been and my blood sugars in control (knock on wood).

Oh, the “Good stuff, Maynard”? I made Posole for the whole gang the other night. It’s not terrible for an ESRD or diabetic. Here’s a recipe to get you started.

POSOLE

1 1/2 c. cooked chicken

1 qt. chicken stock (use low sodium)

1 medium can diced tomatoes with juice (use no salt added, if you can find it)

1 large onion, chopped

2 cloves garlic, minced

1 to 2 Tablespoons cumin

1 to 2 Tablespoons mild to medium chili powder

2 Tablespoons olive oil or vegetable oil

1  4-oz. can chopped chilis (medium)

1 can white hominy, drained

Juice of 2 limes

1 tsp. lime zest (optional)

1/2 c. fresh cilantro, chopped (chop a cup full and save half to garnish bowls)

Tortilla chips

In a kettle or large saucepan, sweat onions in oil until translucent; add garlic and half of cumin and chili powder. Things should smell good already. Cook on medium heat until spices are slightly toasted. Add chicken stock, tomatoes, chilis and hominy. Simmer for 20minutes or so. Taste and adjust seasoning.

(You should have a rich  stock that looks spice-laden – a bit of an orange film on top. It is, but it isn’t going to burn your mouth, unless you want it to. You can add all the hotness you want. I don’t care, it’s your soup and your mouth.)

Add cooked chicken and just before serving add the lime juice, zest and chopped fresh cilantro. Don’t omit this step or these ingredients. They’re what make the soup “Good stuff, Maynard.”

You can add to the soup — black olives, etc. — but I wouldn’t subtract any ingredients from this basic recipe. Serve with as many Mexican condiments as you like (black olives, sour cream, shredded lettuce, shredded cheese, chopped onions). You can also substitute meats (pork, turkey, cornish hen) in fact, the truly Mexican version calls for starting with a pig’s head. Sorry, you’ll have to tap Anthony Bourdain for that recipe.

February 28, 2009 Posted by | diabetes, dialysis, health, kidney, renal diet, renal recipes, weight loss | 1 Comment

Duck

The sky is falling! The sky is falling!

Best advice from someone who’s already heard early  crackings and been knocked for a loop or two by a blue-sky chunk crashing the party hard down here: deal with it … and keep smiling.

My friends and former colleagues in the Gazette newsroom are dealing with some harsh realities right now, realities that shake the whole future of their chosen profession, slash at core beliefs and – just for a little more twisted pathos – can throw a humongous monkey wrench labeled identity crisis into the mix.

I feel I have some recently acquired expertise in this area since a goodly portion of several of my personal skyways have toppled onto my now battered (should I really add the godawful trite “‘but unbowed”) head. I don’t know if “I coulda been a contender”, but I do know I shoulda been wearing a safety helmet as I walked through the past year or so.

The people in the newsroom and in the corporation as a whole knew this had to be coming. Of course they knew it logically, but even though heavy heavy looms large and casts a shadow as huge as Dorothy’s house twisting over Oz, the shock when it bangs down on your corner of the world is devastating.

 I don’t sympathize, I empathize. My sky fell last fall. The reasons weren’t the same — my exit was prompted by medical devils, not economic ones. That my leaving the newsroom was financially beneficial to the company was tangential. Nevertheless, business is business, and all those other old saws that make sense … when it’s somebody else cleaning out her desk.

Thirteen news staffers gone.

How do you pick who goes and who stays? Who has to  weigh the pros and cons of who goes and who stays? Do you keep the leaders or the followers, the explorers or those who stay the course?

I’m glad it wasn’t my decision. I’ve been loathe to ask who went. I’m sure I’d have questions about many of  the decisions.

The 13 news staffers who left Tuesday undoubtedly had no more control over their going than I did. It wasn’t shoddy work, lack of enthusiasm or talent. It wasn’t even an unwillingness to change. It was tornadic outside forces screwing with life and a good portion of the screw was thrown my way.

No, I am not saying the company screwed me. The tornado winds of life, yeah, they took me for an unpleasant ride.

But I have learned you can rail against a tornado, but the tornado usually wins.

Maybe best to shake  your head, exclaim, “Wow, what a ride! I’m amazed I lived through it,” pick up the pieces and get on with life.

Like my son, the tattoo artist and philosopher, says: Shit happens. Deal with it.

February 26, 2009 Posted by | diabetes, dialysis, economics, fistula, hard times, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

Not the best news

A letter came from Mayo Clinic last week.

You remember them don’t you? They and their evaluation of my prospects for a kidney transplant were the impetus for starting this blog. That was before the leg troubles, the biopsy, the flood, the three operations that led to the leg amputation.

Yeah, those guys.

The letter informed me that their taking on “last chance” transplant cases and the resulting low numbers of success has prompted them to limit the number of last resort high-risk transplants they will perform.

Damn. Makes me want to offer up a prayer or forty to St. Jude, patron saint of hopless cases.

It’s not even that it makes me feel my chances for a transplant have lessened.  I’ve nearly come to the conclusion that transplant would not be possible for me since the costly anti-rejection drugs required on a permanent basis are only covered by Medicare for a couple of years.

I mean, let’s be practical: I’m already 62 years old. A new kidney would be great for me since it would probably eliminate the need for me to restrict fluids and allow me the freedom to eat more freely (though a new kidney would not cure my diabetes. A new pancreas would, but the kidney/pancreas operations are normally only performed on people who have Type 1 – what used to be called brittle – diabetes) but it wouldn’t solve other nagging medical woes like arthritis, general aging problems, the lack of a leg, etc.

In other words, even though a kidney would make me feel better and elevate my quality of life, my already existing problems would undoubtedly keep me from working full time and I think I’d need that level of work in order to afford the anti-rejection drugs once Medicare stopped paying. They’re now around $4,000 a month, as I understand it.

So I don’t think I’m pining for or entreating St. Jude for myself.

I understand on many levels why Mayo’s would want to have statistics that reflect a high rate of success. They’re known deservedly so for quality care. I was highly impressed with the evaluation process and the accessibility of the physicians. And I’m sure there are minimum standards they must meet even if they don’t take Medicare assignments.

But it just seems hard-hearted (a term I would not apply to any of the professionals with whom I had contact at Mayo’s) to pull the rug out from under ESRD patients who feel their last chance for a transplant is Mayo Clinic. Even if I decide there’s no transplant in my future, I want the hope that I could find a team to take on my case if I so wanted.

February 15, 2009 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

A tattoo in the future?

I came across an interesting news story yesterday.  Medical scientists are working on a glucose-monitoring tattoo ink that could eliminate the necessity to be a human pincushion  in order  to keep track of daily sugar levels.

Well halelujah!

It would be like a permanent mood ring with the color changing according to the level of glucose detected and would require only a small dot of color impregnated under the skin. Of course, if one has a son who is a tattoo artist, one can envision a larger piece of artwork that would change color several times a day.

Now wouldn’t that be a freak out? Makes me smile to think of it.  I can just see the tattoo I’ve wanted my son to place on my left bicep – a winged dragon emerging from its egg – changing from green to orange to yellow. Well, it might if it didn’t need infrared light to detect the color changes.

I would have that tattoo if my doctor would have said it was OK but since my diabetes obstructs healing, he felt I might be taking a risk to have the artwork applied to my arm.  Why a dragon? My son was born in the Year of the Dragon. Why coming out of an egg? In celebration of his birth, of course.

I even did a sketch once of what I’d like the tattoo to be. Aaron thought the idea was good, but he said I would, of course, pick an extremely difficult set of wings to depict. Well, of course.

My mother was pretty near speechless when she heard us discussing the at that time probable tattoo. “Why would you want a tattoo,” she asked wide-eyed. I said if Aaron was painting oil on canvas or in watercolors, I’d want to hang his artwork on my walls so why wouldn’t I want to have his skin art on my body?

Of course, in more practical terms, a color changing glucose sensitive tattoo would mean you’d never forget your testing equipment, you wouldn’t be leaving droplets of blood over napkins, fingers and clothes, your fingertips wouldn’t be pricked and feeling pricked, not to mention the dollars you could save not having to buy test strips. They can get very expensive especially if you’re asked to test four or five times a day.

February 14, 2009 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 3 Comments

Unspoken words

This spoke to me from “Eat Pray Love,” a memoir by Elizabeth Gilbert:

“There’s a reason we refer to ‘leaps of faith’ –because the decision to consent to any notion of divinity is a mighty jump from the rational over to the unknowable, and I don’t care how diligently  scholars of every religion will try to sit you down with their stacks of  books and prove to you that their faith is indeed rational; it isn’t. If faith were rational it wouldn’t be — by definition — faith. Faith is belief in what you cannot see or prove or touch. Faith is walking face-first and full-speed into the dark. If we truly knew all the answers in advance as to the meaning of life and the nature of God and the destiny of our souls, our belief would not be a leap of faith and it would not be a courageous act of humanity; it would just be … a prudent insurance policy.”

For some reason those words speak to me, give me permission to not feel that I have to find a single belief that has all the answers for me.  Acting “as if” may be enough to keep me walking along a path toward faith. Maybe I don’t have to find all the answers in one big glut.  Maybe my true faith includes a cup of  Christianity, a dollop of Islam, a  sprinkling of Eastern philosophy, a dash of spirituality all served on a bed of belief in the humanity of  man.

I think I like that idea.

February 5, 2009 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, Uncategorized, weight loss | 1 Comment

Lookee here

There’s been progress on several fronts this past week:

  • Prosthesis – The prosthetist added several more layers of leather padding to the receptecle that holds the stump and I increased the number of sock plies to 19. It’s time, Sherrie said, to go to the next casting for a new receptacle. She came Thursday to make the new cast, which will be considerably smaller because of the amount of shrinkage that’s occurred.  We’re a step closer to the final prosthesis. The new leg will be lighter both in weight and color. The next incarnation will be clear plastic and have a more flexible foot.  It will also have a lock and pin system that should keep the prosthesis  more securely positioned on my leg and require many fewer sock plies. The lock and pin system left me somewhat bewildered when Sherrie first explained it – with visual aids no less: A plastic  plate with a female connector to hold a pin is a new addition to the bottom of  the silicon liner sock. The pin Sherrie showed me looked like a heavy duty screw. Once the pin is “screwed in”,  she said, a button at the side of the leg locks the prosthesis in place. I spent the next couple of days trying to figure out how the prosthesis would screw on the leg. I had visions of a crusty one-eyed pirate twirling a peg leg around and around his stump while a green parrot loudly squawked encouragement from his shoulder.  The next dialysis treatment Don, the husband of a fellow patient, explained the peg wasn’t a screw. Each ridge on the peg is an individual circle. OOOOOOOOOOOkay. That makes sense. Duh. The lock on the side uses an individual ridge to hold  the leg in position.
  • Vocational Rehabilitation – I received a letter telling me I am evaluated as having a “substantial disability” which means I’ll be high up on the waiting list of clients. They’re not taking new clients at the moment.
  • The Gazette – It looks like I’ll become a “content provider” for a couple of online offerings including health and crafting. I’ve got some ideas for both areas that I hope readers will find interesting. I’m excited by the prospect.

Meanwhile, I’m still chomping through books at an alarming rate. More on that later.

February 1, 2009 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Low energy

A combination of a respiratory virus, January doldrums and too damned much cold and snow has left me uninspired and weary.

It seems the most I can do is read and I’ve ploughed through a fair number of books in the past few weeks: Historical novels, a bonafied history text, a somewhat poorly written contemporary novel, the beginning of a series based on the exploits of a British soldier during the Napoleonic wars.

It’s true escapism for me, these novels based on careful research of the historical periods in which they’re set. We play the cable channel elevator music at night. Mom works her crossword puzzles and I read. I can barely stand to turn the TV on at night because there is so little that interests me. I’m even tiring of Dancing With the Stars.

It does keep me  occupied while I dangle in limbo witing for Social Security, Vocational Rehibilitation, and word from The Gazette about doing contract work.

I need to tap into more motivation right now, too. I’ve started outpatient physical therapy.  I’ve been going Mondays and Wednesdays before my dialysis treatments. It makes for a long day and I know I need to start walking more with my prosthesis. The virus really sapped my strength, though, and I’ve been trying to help Mom get over her bout with the bug, too. I hope we don’t start giving it back and forth.

At least that’s what I’m using for my excuse. I just can’t seem to get myself to pull the socks and leg on in the morning and walk the 100 feet or so to the dining room. There’s still some adjustment to be done on the prosthesis: It’s not really rubbing on my shinbone but it seems to generate enough pressure to make it uncomfortable and feel as though it’s nearly bruised.

I need to tap into the over achiever in me so I can meet or exceed what the therapist expects from me.

Maybe tomorrow.

January 22, 2009 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

Catherine

I’ve been thinking sbout Catherine this week.  She was one of the first dialysis patients I buddied up with in the waiting room.

Large, boisterous and black, she was in her 70s but still had a lust for life, loved opera and an occasional bottle of wine.  She was still looking for Mr. Right or at least Mr. Right Now. She had no time for weepy men.  She liked them strong and a bit randy, at least enough not to be shocked by her own ribald sense of humor.

She laughed easily and had her opinions, voiced strongly and often, on most topics of  discussion around the large table in the waiting room.

She held no truck with death. An understandable attitude for many dialysis patients since death seems to walk  only a small step behind us. When the husband of a friend – longtime to Catherine but new to me – died, I asked Catherine if she intended to be at the funeral. “I don’t do funerals,” she said, a tinge of  gruffness in her voice.

Because I was asked to change my dialysis days, our paths seldom crossed the past year. I missed talking with her but didn’t carry the thought far enough to call her. Several weeks ago I learned from talk in the waiting room that Catherine had decided to discontinue her dialysis and let nature take its course, a certain and relatively quick death.

After 20-plus years she said “no more” following her December 27 session. She is tired: tired of the treatments; tired of the deadly boredom and butt-numbing time spent in the chair; tired of  the poking and prodding; tired of the constant denial of food and drink required; tired of not being able to travel unless arrangements are made well ahead of time; tired of feeling tired; tired of fighting an uphill battle with health issues; tired of kidney disease being the center of her life,

As of Wednesday, she was in a local hospice. Her pacemaker was turned off and her medicines discontinued except for a medicine that calms her stomach and allows her to eat. The visitor who told me these things said eating whatever she wanted was one of her last wishes.

Choosing death is not an easy decision to make. She and her family are at peace with it, the visitor said, and Catherine is “her old self,” laughing, telling stories and enjoying her last days.

When she passes, I wish her a beautiful aria playing, no pain, and loving arms to greet her.

January 3, 2009 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, weight loss | 2 Comments