Tuesday, September 29, 2009

Subject: Your backorder has been shipped

Want to fly from Austin to Chicago on a clear day? No problem.
Bad weather in Denver? Your flight to Chicago has been canceled.

It seems that as companies try to squeeze the very last drop of efficiency out of their operations, they also squeeze out all ability to deal with anything but the ordinary. We ordered BR's coude catheter on September 18. It was scheduled to ship on the 21st. Then the 22nd. Then it was marked "on backorder." That's not a good sign. A call on the 23rd revealed that the Fort Worth warehouse was out of stock, but the Jacksonville warehouse had some. It should ship within 24 hours and be delivered within 3 days.

Yet the web site never changed: "on backorder, scheduled to ship 9/22"

A call yesterday revealed the same information: Fort Worth doesn't have it, but Jacksonville does. It will ship within 24 hours.

Paint me skeptical.

This morning I got the e-mail I had been waiting for: Your backorder has been shipped

It should be here some time Thursday, so we'll move the home nurse visit from Wednesday to Friday, change the tube, and know by the end of the week if more drastic measures will be necessary to bring BR's bladder under control.

Monday, September 21, 2009

My Inspiration

My grandmother, Vera, had six children. In 1949, five of them were stricken with polio before they had reached their teenage years. My father was severely affected, losing the use of one arm and one leg. But by far the hardest hit was my Uncle Rudy. At age 8, he was nearly killed by the disease. He needed an iron lung, but none were available. Machinists in Bloomington, Illinois heard of his plight, got together, and came up with a "wooden lung."

That wooden lung saved my uncle's life, and he proceeded to live longer than anyone could have anticipated.

The one who took care of him day in and day out for nearly 60 years was my grandmother. She passed away last year before I had a chance to ask her how she did it.

Saturday, September 19, 2009

Catheters Gone Wild!

About three weeks ago, BR's suprapubic catheter went on strike. No amount of fiddling with angles and pushing and pulling would make the liquid sunshine flow through the tube without also flowing through his urethra.

On the first visit to the Mad Urologist, BR's normal latex catheter was replaced with a silicone "large lumen" model, in the hopes that bigger would equal better flow. Unfortunately, the nurse botched the insertion. Being made of a stiffer material, the catheter found itself exiting the bladder via the urethra. Can you guess what came next? Go ahead, guess. That's right. Balloon inflation in the prostate! After he realized something had gone wrong, the nurse called the doctor, who corrected the tube placement, and gave BR a two day Levaquin prophylaxis to keep the bacteria in his bladder from spreading to his blood stream.

Long story short, BR bled from his urethra for a week, the catheter only briefly worked well, and it hurt like hell when it was removed two weeks later.

Next, the Mad Urologist ordered video urodynamic tests to better understand what's happening when BR leaks. These tests are only done in their Round Rock office, which is about a 30 minute drive from home. For such a horribly uncomfortable suite of experiments, I have to say that Tracy, the nurse technician, made the experience as enjoyable as possible.

The tests showed that BR's bladder contracts in the presence of a very small volume of liquid, and that when it contracts, it does so with more than twice the normal pressure. Combine this data with the theory that the end of the catheter is migrating down to the bladder neck where urine can't get to it without a contraction, and we seem to have an explanation for the symptoms.

The Mad Urologist offered four options:
  1. Try a catheter with a "coude" tip which when properly inserted may be less likely to migrate down to the bladder neck.

  2. Insert a foley catheter through the urethra in addition to the suprapubic catheter. Double your pleasure. Double your fun.

  3. Inject Botox into the bladder muscles to reduce the strength of the contractions. Lighter contractions may permit more of the urine to exit through the catheter.

  4. Surgically close the bladder neck, forcing all urine to exit through the suprapubic catheter. The Mad Urologist is reluctant to do this because it limits his future options should BR develop other urinary tract problems, like stones.
So we are going to start with the coude catheter, which has been ordered and should be here sometime next week. If that doesn't work, BR says sew the bastard up.

Friday, September 18, 2009

Physician burnout

As we prepare for our sixth visit to the urologist in two months, I realize that I am suffering from physician burnout. So many doctors taking their sweet time to address increasingly acute issues. So much time away from work. So much time away from fun. So much time sitting in waiting rooms and examination rooms. So little interpersonal skills. So little hope.

I'd pay good money to the first internet-based medical practice. Send trained, sympathetic technicians to my home with all the necessary equipment, including a high resolution camera. Interact with the doctor through a video chat, with the technician acting as the doctor's "remote hands". House calls for the 21st century. If doctors aren't going to act like human beings, why should it be necessary to see them in the flesh?

Tuesday, September 15, 2009

The Birth of Bladderman

Contemplating a life full of catheters and urological problems, BR makes a dramatic decision...

He wants the ultimate urinary tract.
One impervious to all foreign contaminants.
One that knows when to hold 'em. Knows when to fold 'em.
Knows when to take a pee, and never runs.

A technician loads BR into the Urodynamo, and makes the necessary preparations.

With the push of a button, the transformation begins.

To be continued ...

Saturday, September 12, 2009

Odd MS symptoms

BR has a couple of symptoms that seem to be pretty out of the ordinary.

First, he has become extremely photo-sensitive. Bright, or over-head lights make his eyes flash. You may have noticed the "Gilligan" hat in his latest photos.

We went to an ophthalmologist last week, and despite our 2:30pm appointment, he was among the last patients to be seen. The "technician" didn't really understand how the equipment could be adapted so BR didn't have to get out of his chair, and the Doctor spent less than 5 minutes with us before ordering further tests that couldn't be completed that same day. Grrrr.

The photo-sensitivity has caused us to become civically active. We have a streetlamp directly in front of our porch which shines brightly after dark. Three months ago, I submitted a request to the property owner's association to have the light shielded so that BR can comfortably use the front porch after dark without wearing sunglasses and floppy hats. Last Wednesday, we had our meeting with the development's New Construction Council, and they were very accommodating. The light has since been temporarily disabled, and they are working on a permanent solution.

But the weirdest symptom we've been dealing with is a shift in either BR's jaw or teeth. For nearly a year, he has been chewing with just two molars. The rest of his teeth no longer meet. We also found out from his dentist that one of those two molars is likely dead. Not really sure what is an acceptable solution to this one.

Tuesday, September 8, 2009

I'd like to see the clinical trial data on this one

Photo and Gimp Editing: steve

BR seems a bit dubious of the latest advances in MS treatment.

Wednesday, September 2, 2009

Miss Blocked Catheter 2009

Here she is modeling the latest in catheter innovation.