Thursday, July 30, 2009

What's mayan is urine.

Things are looking up! The urologist instructed us to have BR's catheter changed twice while he was taking the antibiotics to keep the tube from reinfecting the bladder. After the first change, no more leaking!

Tuesday was cystoscopy day. Now don't get me wrong. We love this urologist, but the office is straight out of the 1970's. Everything has 30 years of wear and tear on it, and there is the faint scent of every incontinent patient lingering in the air. I would put the average age of the people in the waiting room at about 65, and I've decided to take that as a good sign that his patients stick with him.

The procedure went well -- only discovering the expected irritation on the back of the bladder caused by the constant rubbing of the catheter. It did, however, have the unfortunate side effect of bringing back the leaking. Drats!

Oh, and after the stirrup experience, BR is better equipped than ever to empathize with the entire female race.

Another Thursday. Another catheter change, and we are back to the world of dry.

A Midsummer Night's Tale

I recently wrote the following after taking a late night walk through a neighborhood adjacent to where BR and I live here in Austin. Mueller was Austin's municipal airport until 1999, and the neighborhoods to the south and east are commonly considered less than safe.

Realizing that I had been lamenting the lack of pedestrian exits from Mueller without ever having used one, I set off from my home on foot at 1am on a Friday morning to see just what was so scary outside our friendly confines.

I took Tom Miller to Berkman. As the housing grew more sparse, I focused my attention to the greenway. I noticed many paths beaten into the open space, but no one path that seemed more used than the others. I think that this time of year, one person walking across the greenway will leave a trail that won't spring back until the rains return. Anyway, I marveled at the paths like one would marvel at cloud formations.

Continuing right on Berkman, I came across a sign at the intersection with Manor. It announced in very small and faded letters something about a major construction project on 51st Street, with an associated storm water discharge. The rest, my 40+ year old eyes could not make out.

As I crossed Manor, I was first struck by the dramatic change in lighting. The vast majority of street lamps were not illuminated, and my intended route down Pershing was completely dark. I decided to cut across the triangular lawn in front of the Red Cross office and travel down to better lit E.M. Franklin. And just as I reached the first working street light, it turned off.

Hmm. That's not very welcoming.

It also wasn't the only street light that turned off during my walk. The surrounding neighborhoods appear to be on automated timers to save energy late at night. Their street lights also direct light down, and not out. But I digress.

The second thing I noticed was the complete lack of sidewalks in the surrounding neighborhoods, along with vegetation that grows right up to the curb.

Undaunted, I continued down E.M. Franklin to MLK. Along the way, I heard some voices in conversation, but I couldn't see the people through their privacy fence of vegetation. As I reached MLK, I noticed a construction project right on the corner with a LEEDS sign out front. I couldn't really get a good look at it, and will need to go back during the day.

Turning right on MLK, I was relieved to be back on sidewalk. I could see the lights of the 24 hour fast food restaurants at Airport tempting me, but decided to turn back down Greenwood instead. Mainly because of the house on the corner with all the amazing stuff in their back yard.

Greenwood appears to be a prime example of urban renewal. Next to charming older housing stock, there is beautiful new construction. I laughed as I passed a home with sport lawn chairs out front. You know, the kind with cup holders. One in particular still held a can of Busch.

Another house had a wooden bench swing in the front lawn. I wondered how many cool Texas evenings that family spent on their swing. I also wanted to leave my card with a note begging for an invitation the next time they were out.

As I crossed Pershing, I noticed the homes seemed to be getting more and more "secure". Where window bars were the norm, now chain link property fences were commonplace. The most "secure" property was occupied by the City of Austin Public Works. They had a poorly maintained six foot chain link fence, with a spiral ribbon of razor wire dancing along the top. I don't know about you, but I would consider any property in Mueller with razor wire to be offensive. I wonder why the city doesn't see things the same way.

As I approached Manor, I noticed that the razor wire along the fence changed into less obvious barbed wire, in what can only be taken as a public relations concession. People traveling down Manor are more likely to notice a spiral ribbon of razor wire than a thin strand of barbed wire.

Heading back into Mueller, I first noticed the silhouette of the spider against the all-night Mueller street lamps. Standing guard.

As I continued home, I realized how little the Mueller lighting added to my sense of security. I couldn't see into the dark corners that the street lights don't reach like I could just to the south. And by choosing to stay in the light, I felt more like an easy target.

I arrived home safe and sound. One square block down. Many more to go.

Tuesday, July 28, 2009

Simpler days

BR's brother just sent him a tweet...
johnmckellar: @dedesbigboy Amen!!!!! I sometimes long for those simpler days where people were born, lived, and died in same small town.
It got me to wondering ... has globalization done a disservice to the disabled? By encouraging families to become so scattered during good times, does the global economy leave people out on a limb in bad times?

When BR was diagnosed with MS, we were living in San Francisco. That's roughly 2000 miles from his family near Shreveport, Louisiana ...

... and my family near Chicago, Illinois ...

The best families act as life's safety nets. Better than any government health care plan. Better than Meals-on-Wheels and Goodwill and Red Cross Shelters. By encouraging family members to seek their fortune in far off lands, it would appear that we are sacrificing our family safety nets on the gamble that nothing bad will happen while we are away.

But something bad always happens, doesn't it? After all, nobody gets out of this world alive. Be it our parents, our siblings, our partners, or our children, or even the community of friends we've built around us, we are all called upon to give and receive "family" assistance sooner or later.

It's the people who don't have any family that I worry about the most. They are the ones who necessarily end up in the government safety net. They are isolated. Too proud or too sick to ask for meaningful, lasting community assistance. I pray that whatever health care reform comes out of this congress, its primary focus is on the safety and comfort of those who need it most.

As for the rest of us, I pray that we continue to reach out to one another as a community. Give of our resources and talents to support our families. And make a continuing effort to grow those families.

Bobanthony and Steve

The Circle of LifeTicklish

Monday, July 20, 2009

What a difference a doctor makes!

Quick recap on BR's bladder issues.

BR has been having a lot of bladder pain, cramping, and urine leakage from his urethra despite having a suprapubic catheter. We saw a urologist last Wednesday who refused to do anything for BR other than deflate the catheter balloon down to 10cc, and that was at my suggestion. She insisted on a whole bunch of tests that were going to take weeks to execute.

Last Friday, BR's urinary tract infection (UTI), which the urologist has diagnosed but did not treat, had flared up so badly that we couldn't wait any longer, and called the urologist to see if the urine culture had come back. The office was closed. No warning. No notice. No antibiotics for BR. We asked the answering service to please page the doctor, but they didn't hold out much hope.

We decided to call the other urologist on BR's referral to see if they could help. The office was closed, but the scheduler was able to get BR an appointment for Monday morning. We jumped at the chance to cut ties with the first urologist, but that still didn't fix the immediate problem.

As a last resort, we got an emergency appointment with BR's primary care clinic. His doctor there had prescribed antibiotics in the past even before getting a culture -- using the test to validate treatment, rather than delay it. Unfortunately, BR's doctor was also on vacation, and the doctor covering his patients saw the referral in the records and wanted to contact the urologist before doing anything. We told his nurse that the urologist was the worst doctor ever, and we shouldn't hold our breath waiting to hear from her. Two hours later as the office was getting ready to close, they finally gave up waiting and decided to do their own urinalysis. The doctor gave us a Cipro prescription, and we were on our way.

BR's bladder pain and cramping improved over the weekend, but the leaking didn't.

This morning, we saw the new urologist. He took BR's full medical history and listened to the problems we were having. He recommended a cystoscopy as the best way to figure out what's going on inside BR's bladder. We agreed and scheduled one for early next week. He also recommended trying one of the medications that can control bladder spasms. Without hesitation, he gave us a four weeks supply of Enablex from his stash of samples and told us to start taking them right away. If the problem was gone by next week, he'd still do the cystoscopy just to validate the results.

I'll say it again. What a difference a doctor makes! I took great pleasure calling the first urologist to cancel all the tests and follow-up appointment. Worst. Doctor. Ever.

Bobanthony and I

Friday, July 17, 2009

To Medicare, or not to Medicare

The forms have arrived. After a two year waiting period, BR is finally eligible for Medicare. But how do I decide which is the best course?
  • Ignore Medicare, and continue with BR on my insurance through work? Blue Cross has been very good to us, but I'm paying a lot for BR's coverage, and what the company pays is not tax-free like it would be for a married couple.

  • Drop Blue Cross and put BR entirely on Medicare? It might save some money in the short term, but what about the long term? It would also be less complicated should something happen to me.

  • Do some combination of primary/secondary insurance?
I am so ill prepared to make this decision, and don't even know where to begin with the investigation. I know, I know. I've had two years to think about it. I should be ready.

Wednesday, July 15, 2009

Beggars can't be choosers, I guess

I was able to get BR an appointment with a "Urology Team" today. I was really relieved that we wouldn't have to be making another visit to the ER. Unfortunately, the urologist wanted to treat BR as a new patient, not as a patient with an urgent issue.

"I can't treat you until I get the results of a urodynamics test"

"What does that do?"

"It measures the strength of your pelvic floor."

"We already know his pelvic floor muscles are all messed up. That's why he has the suprapubic catheter."

"Think of it as a cardiologist ordering an EKG."

"OK. Where do we go to get one."

"You'll have to come back in two weeks."

"But it hurts and leaks now!"

We finally got her to sit and listen to what lead up to the current situation. I explained about the bad tube change, and how none of the changes since have done any good. I also explained my theory that maybe the nurse was over-inflating the catheter balloon, and that was causing the bladder to spasm and release through the urethra, thinking it was full.

"How much is she putting in?"

"I think she's shooting for 30cc."

"That's way too much. 10cc should be enough. Let's check that."

She then pulls 25cc of water from the balloon, and puts 10cc back.

We scheduled the test and said our goodbyes, not really happy with the experience.

Fortunately, BR's spasms have reduced in frequency and severity. We'll see how tomorrow goes.

Waiting for the next test

Tuesday, July 14, 2009

Trying to reign in the worry

BR had yet another catheter tube change yesterday, a week earlier than usual. That makes three tubes in five weeks, and none have resolved the bladder cramping and pain, the leaking, and the sediment in his urine. At least it's not blood anymore.

Sediment. What a funny word for "the bacteria are renovating your bladder -- please pardon our dust."

We got a referral to a urologist today. Of course, we got it at 5:15pm, and they all closed at 5. I'm watching him like a hawk for any sign of fever. Without blood, the chances of sepsis are slim, so a fever would be more of a sign that the infection is spreading up towards the kidneys. And kidney damage is something we will definitely want to head off with an ER visit.

Pain killers. Tranquilizers. Adult undergarments. I want them to be enough to keep him comfortable until the urologist can see him. But I can tell they are not. I need a distraction.

Once Jordan and I get BR resting in bed this evening, we will be going to see the new Harry Potter movie. A couple hours at Hogwarts to temporarily displace the worry.

Picking the right tools for the job

You probably have noticed that BR doesn't do a whole lot of posting here. It's not for a lack of desire. He just hasn't been all that comfortable using the computer since going into the wheelchair. Laptop. Wireless keyboard and mouse. Display on big screen TV. Nothing made the task a convenient one.

Lately, he's taken to exploring and using his iPhone, and text messaging in particular. That got me to thinking -- maybe texting posts through Twitter would be a better way for him to keep everyone in the loop. You know, straight from the horse's mouth.

So we set up a Twitter account, and he's starting to send out tweets. You'll find his last five tweets over there on the left.

Sunday, July 12, 2009

We're Uncles!

Our next door neighbors had their first child on Friday -- a little boy they've named Anthony. BR and I spent the day customizing some onesies, then paid them a visit at the hospital. Cynthia was in labor for 16 hours before the doctors called for a C-section. She is in a bit of pain still, but both she and the baby are doing fine. Looks like she and BR will be Percocet Pals for a few days.

They don't allow visitors to take pictures in the nursery, so I'll just have to put on my paparazzi hat and wait for little Bobanthony to come home later today.

Friday, July 10, 2009

Impulse purchase of the day

"I saw it from the checkout aisle at The Container Store, and just had to have it!"

Friday, July 3, 2009

Saint Peter Number 2

BR woke up with a lot of blood in his urine this morning. Oh, no. Here we go again...

December 13, 2007: BR had just taken possession of his brand new iBOT. I had gone to work in Palo Alto, and after stopping to pick up some condom catheters, made my way home to the Castro. There I found BR in his iBOT in the living room, in obvious pain.

He related a story of an in-dwelling catheter insertion gone wrong. A home nurse had come for a routine visit, as he had just been released from the hospital the day before after a severe bladder infection. At that time, BR's biggest complaint was incontinence. He had been trained to use an intermittent catheter every 4 hours, yet still he leaked. Being the charmer that he is, he convinced the nurse to give him an in-dwelling catheter.

Now normally the catheter is inserted through the penis and into the bladder. Then a balloon is inflated in the bladder to keep the catheter in place. Well, for whatever reason, this nurse did not fully insert the catheter before inflating the balloon. [Insert expletive here]

BR bled from his penis through the evening and into the night. His GP told him that if the bleeding didn't stop by morning, or if he started to run a high fever, he should call 911. At midnight, he was still bleeding, and his fever hit 104. A short ambulance ride later, we were in the ER, and BR was diagnosed with sepsis. He spent five days in the CCU and another three in acute care before being released a much weaker man.

Fast forward to this past Wednesday. The home nurse had come to change BR's suprapubic catheter, as she does every three weeks. This time it didn't go so well. BR experienced painful bladder spasms every ten minutes the entire day. We called the nurse back out the next morning, she replace the catheter with another, and everything seemed fine. That is until I saw the blood in the tube and bag. [Insert expletive here]

Untreated sepsis is a quick death. BR and I discussed whether or not to call 911. After careful thought, he decided that if he should get a high fever, he didn't want emergency care. I promised to respect his wishes, and reminded him that he could change his mind at any time if he wanted to.

God did not call him today. The blood cleared, and there is no sign of fever.

I'm exhausted.

Thursday, July 2, 2009

While the cat's away, Summer 09

Melting in the Texas heat

With Nephew Jay before "The Toilet Affair."

Niece Jordan. Beautiful and talented.

Gina picks up the last shift.

BR models his present from Toronto.

Wednesday, July 1, 2009

No way back. No good options left.

As he entered the waiting room, a large, friendly sign instructed him to be seated and wait for his name to be called.

"God will be with you shortly."
The neurologist has disengaged. He didn't offer any treatment courses to help manage BR's symptoms. When we brought steroids back up as an option, his response was "OK. Do you want oral or IV?" I got the distinct impression that he didn't think there was anything that would help, and he would have prescribed hemlock if we asked for it.

So I turn to you, dear readers. Do you have any experiences or advice regarding the difference between oral Prednisone, or IV Solu-medrol?

The Wheelchair Kamikaze warns of a side effect called Avascular Necrosis, which he got while being treated with IV Solu-medrol.
I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.
Lisa Emrich has a nice article on Health Central summarizing the more common side effects.
In 2005, I was in the process of being officially diagnosed. After the results of my Lumbar Puncture came back, I was called into the neurology center to begin a 5-day adventure into SolyWorld. One of the other MS patients already hooked up mentioned that it was like “PMS in a bag” - a description he and his wife had lovingly coined.
WebMD offers:
Intravenous (IV) corticosteroids may work faster and have fewer side effects than oral steroids alone. Treatment with IV methylprednisolone may be followed by treatment with oral prednisone or oral methylprednisolone. Toward the end of the treatment, increasingly lower doses are used so that the body can recover its own ability to produce natural corticosteroid hormones.

Corticosteroid treatment does not work for everyone. In some people who have severe or frequent attacks, corticosteroids are effective at first, but become less helpful after repeated use.
Hmm. So we may just be getting a short period of better quality of life at the risk of some pretty severe and permanent side effects. Maybe we can play a timing game. A round of steroids now to help get through the hot Texas summer months. A round in November to help get through the holidays.