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

Coping

Bill came from the hospital yesterday. They billed the insurance company over $237,000 and said my portion would be close to $26,000.

Yeah, right.

I’m concerned with how I’m going to cover my basic living expenses each month. Don’t have any idea where the dollars to pay this bill would or could materialize because that’s what it will take, some kind of magic, to pay.

Of course that doesn’t include any physician, pathologist, anesthesiologist fees. Just the hospital stay. Bankruptcy may be in the near future. I think I need to talk with a legal aid lawyer.

I told the physical therapy assistant who’s been helping me from the Visiting Nurses that I probably would take more joy in my progress — which is good — if I didn’t have these financial woes hanging over my head. At this point, I don’t think they’ll ever go away.

I asked the doctor to put me back on an antidepressant. Somehow it seems it was discontinued during the hospital stay. I think the year is catching up with me and the future dim enough that I need some kind of boost. The nurse practitioner I talked to agreed and prescribed the generic of Celexa. It might help me sleep better than the sleeping pills, too.

I’m going to try to be ready to try part time work by the first of December and see what I can arrange for transportation. 

I also need to get the social workers at the dialysis center to give me some information on vocational rehabilitation and guidance on where I can get the info and/or apply.

On the brighter side:

I’m walking on my own for short walks in the hallway and in the apartment. I’m up to about 100 feet which gets me to the dining room. Mom follows with the wheelchair behind me. I sit in the wheelchair during the meal and when it’s over, Mom uses the walker and I wheel for the return trip.

I’m also donning the prosthetic to make bathroom trips which saves Mom having to drag the commode to a better transfer spot than the bathroom stool. That means life is getting easier for her which is one of my goals. She shouldn’t have to work so hard at 90 years old.

I hardly recognize my life these days and that’s difficult to cope with, but I’m trying. Right now, it seems it takes an inordinate amount of effort and concentration just to get the daily necessities in hand. Thinking of adding even part time work seems insurmountable, but I need to do that as much for my mental and emotional health as I do for meeting my monthly living obligations.

I have applied for Social Security disability, early retirement and Medicare. I’ve called about Medicare Part D but have received no callback yet so I need to contact them again next week. I’ve contacted the Railroad Retirement Board (the dead ex worked for the railroad before he died and I do qualify for a small sum – less than $100 a month – it appears since I was married to him for more than 20 years) and am in the process of filling out forms and gathering information for those applications.

I need to find some fun.

I know there are other kidney patients out there facing similar worries. How do you cope with the stress and how does the stress factor in to your general well being?

November 8, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | | 5 Comments

I’m here and alive

July 29 – the last post – seems a lifetime away. Lots has happened in the meantime including the amputation of my right leg about 6 inches below my knee. Lots of pain, lots of meds, lots of time lost, lots of disappointment, lots of adjustment both physical  and mental.

I’ve been in the hospital the entire time with three operations under my belt and the meds are still pretty strong in my system. Morphine had me – according to friends and family – working in Philadelphia (I’ve never been there) and involved with some Irioquois(sp?) Indians. The Irioquois were and especially annoying pick since the friend is English and couldn’t even Google the tribe to find out information.

I’m on the 6th floor of St. Luke’s hospital in Cedar Rapids. It’s recently remodeled and beautiful, as hospitals go.

I’m using a hospital computer to post this. Not going to post much more, though, because I keep nodding off.

Hope to post again soon.

September 14, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss, weightloss | | 2 Comments

I am alive and stayin’ that way

The combination of fleeing the flood, losing a computer, having some pretty severe medical problems on top of the dialysis has made updating the blog, well, shall we say problematic?

I’ve got some bad circulatory stuff going on in my right leg which has led to bypass surgery being scheduled for tomorrow at 8:30 a.m. Dr. Lawrence, a vascular surgeon here in Cedar Rapids, will use a cadaverous vein to do a femeral popiteal bypass (that translates to behind my knee). The cadaverous vein is being used because the vein they would normally strip out of my leg to use is “already shot,” he says. He’ll also amputate the second and third toe on my right foot and hope that’s as far as it goes, though he only gives a 60% prognosis on that. The amputation my have to go to behind the ball of my foot.

So, once again, I’ve been in constant underlying pain (this feels like the front part of my foot is on fire) with sharp flashes of additional pain whenever and nerve twitching that just sort of jumps out to cause that wonderful Touret Syndrome kinda thing. 

My nurse friend, Mal, says recovery may be less painful for me using a cadaver vein because stripping veins can be painful. How long I’ll be hospitalized depends on how well I heal and whether or not physical therapy is going to be necessary for the amputated toes.

By the way, what do you think? Should I offer the blackened, shriveled toe up to e-Bay? I could always say proceeds beyond medical expense would go to a good cause like … well, I don’t know. Have you got any ideas?

I finally ordered a laptop computer yesterday. It’s equipped with WiFi and now I’m just hoping I’ll be able to use it in this concrete laden building. Got some problems with cell phone use here and those may just transfer over to WiFi. We’ll see. It’s scheduled to arrive August 10. I should be ready to deal with something new by then.

We’re acclimating ourselves to the new style of life, but that’s another post.

I’m closing this one because the damn foot is starting to scream past the morphine (another post).

I’ll not be so long between posts, I promise. Keep good thoughts for me tomorrow, please.

July 29, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | | Leave a comment