Derby City Spinal Cord Injury Association - http://www.derbycityspinalcord.org
http://www.derbycityspinalcord.org/articles/10/1/MARCH-2005-Newsletter/1.html
MARCH 2005 Newsletter - Published on 03/1/2005
 

Page 1

THE DERBY CITY NSCIA NEWSLETTER

MARCH 2005

The Derby City Chapter of the National Spinal Cord Injury Association Network- Serving Kentuckiana.

Message From the President

Dear Members & Friends-

At press time we have not received information regarding out speaker for the March meeting. We will likely have a speaker, but if not, a video will be shown. Food and drink will be provided at the meeting.

April's meeting will be held at Frazier Rehab; 6:30 ; 4th floor dining hall.

- David Allgood

The following is from New Mobility, January 2005 –ed.

BLADDER MATTERS
BY TIM GILMER

Once upon a time, in a hospital far away, a urologist appeared to me all dressed in white. "How would you like me to give you an injectable," he said, "that will prevent urinary tract infections for the rest of your life?" At the time I had been stuffed away in isolation for three weeks and was gradually descending into paranoia. The magical gift bearer was had on a sterile mask and gown and wore the relaxed look and condescending attitude of a doctor who thought too highly of himself. All I wanted to do was go home.
"No," I said, and that was that.
Why did I refuse? Because it was 30 years ago. I'd never heard of a UTI vaccine and I trusted nobody—especially not wise men in white gowns. Today we're still hearing rumors of UTI vaccines, but so far, nada. MedImmune has been promising a vaccine that will prevent infection from E coli, but human trials are still slogging along, and even if they succeed, E coli is infamous for spinning off new strains and is only one of several common bacterial bad guys.

 

In the meantime, those of us with SCI or MS or other neurological conditions have the same old problem—how to keep our urinary tracts free from infection, disease, and stones—a threat that not only wrecks havoc with our quality of life, but still ends our lives too often and too soon, even with improvements in management, medicine and mind power.

(Continued On Page Two)

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Table of Contents

President`s Message
............
1
Bladder Matters
............
1
Calendar
............
3
For Sale
............
5
 

     

Page 2

THE DERBY CITY NSCIA NEWSLETTER


Derby City Area Chapter
of the
National Spinal Cord Injury Association


ABOUT THE ORGANIZATION

The Derby City Area Chapter of the N.S.C.I.A. is a membership organization for individuals with spinal cord injuries, their families, and health professionals. Founded in 1984 as a Charter Member of the N.S.C.I.A., it was incorporated under IRS Section 501 (c) 3 as a not for profit organization. The Board of Directors consists of the Officers, Past President and the Board Members At Large.

***

OFFICERS

PRESIDENT
David Allgood - (502) 589-6620

VICE PRESIDENT
Adam Ford - (502) 425-2206

TREASURER
Tom Stokes- (502) 957-5865

LIAISON TO FRAZIER INSTITUTE
Dr. Bill Kraft – (502) 582-5865

FUNDRAISING CHAIR
Betty Perry—(502) 647-0368

CORRESPONDING SECRETARY/WEB MASTER
Michael Feger- (502) 647-0368

PAST PRESIDENT
Adam Ford- (502) 425-2206

BOARD MEMBERS AT LARGE-
Mike Perry
Kelly Young

NSCIA
DERBY CITY CHAPTER
NEWSLETTER

Editor- Barbara Davis

Contributor- David Allgood

 

BLADDER MATTERS, CONT'D
(Continued From Page One)

Rule One to stay infection-free: Believe in the stagnant puddle theory. When rainwater collects in a stagnant puddle and stays there too long, bacteria seemingly appear from nowhere to create a stagnant mini-pond. Unless fresh rainwater is added every few hours and the puddle is regularly drained off, the puddle will become a microbial mess.

Intermittent cathing using clean technique—washing hands with soap prior to cathing, rinsing and drying the catherter after, keeping collection equipment regularly disinfected and thoroughly cleansing genital areas daily—is still the protocol of choice. In combination with drinking plenty of water and maintaining a low-pressure "quiet" bladder (minimizing reflex bladder contractions by taking anti-cholinergic drugs such as Ditropan) this system works well, but not perfectly. Given time and the right conditions, bacteria will eventually multiply, leading to infection. But vigilance and consistency can limit infections to one or two per year, perhaps even fewer.

If you're following all the rules and still have several UTIs per year, it's time to re-evaluate your program with a qualified urologist, preferably someone with plenty of experience treating patients with neurogenic bladder. Dr. Barton Wades, of Atlantic Urological Medical Group in Long Beach , Calif. , has the requisite credentials and experience. His first rule is, whenever possible, get rid of that indwelling catheter. "All catheters, if they're in the bladder more than 72 hours," he says, "cause infections. Within three or four days, a UTI will develop." Indwelling catheters are a superhighway for bacteria, which multiply every 20 minutes, and continually taking antibiotics will select out a resistant organism.

If you must have an indwelling catheter—because you're a high quad or have very limited or no hand use or you're alone or don't have an attendant, or maybe your urethra has a blockage—Dr. Wads recommends a suprapubic cystostomy, which creates a "pipeline" from the abdominal wall to the bladder, bypassing the urethra. An indwelling catheter, inserted in the new opening, can more easily be changed (recommended once a month) as well as irrigated daily. It is more convenient for those with limited hand dexterity and allows intercourse. Compared to indwelling

urethral catheterization, suprapubically placed catheterization develops fewer symptomatic UTIs.

Since indwelling catheters always introduce bacteria into the bladder, the best defense against bladder infection is drinking enough water so urine runs clear or light yellow. This not only flushes out bacteria, but also helps the bladder maintain its natural acidity, which creates a hostile environment for bacteria. Vitamin C can help acidify urine.

(Continued On Page Four)


     

Page 3

THE DERBY CITY NSCIA NEWSLETTER


Refrigerator Calendar
*2005

MARCH

7th - Elderly & Disabled Advisory Council Meeting
Mon 1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room.

21st - NSCIA Derby City Area Chapter meeting, 6:30 p.m., Frazier Rehab.
Mon 4th floor dining hall; speaker to be announced. Call David or Barb at 589-6620.

19th - Metro disAbility Coalition Meeting; 1 p.m. – 3 p.m.; PVA Office on Goss Avenue.
Sat Speaker to be announced; if questions, contact Terri Leasor at 589-6620 or at mdclouky.org

APRIL

4th - Elderly & Disabled Advisory Council Meeting
Mon 1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room.

18th - NSCIA Derby City Area Chapter meeting, 6:30 p.m., Frazier Rehab.
Mon 4th floor dining hall; speaker to be announced.

15th - Metro disAbility Coalition Meeting; 1 p.m. – 3 p.m.; PVA Office on Goss Avenue.
Sat Speaker to be announced; if questions contact Terri Leasor at 589-6620 or mdclouky.org

For More Information Call
David Allgood, 502-589-6620

 


     

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THE DERBY CITY NSCIA NEWSLETTER


BLADDER MATTERS, CONT'D

Also, avoid substances that either drive the PH into the alkaline range or cause irritation, such as dairy products, coffee, alcohol, carbonated beverages, orange and grapefruit juices, and tobacco.
One of the main causes of infection and disease is irritation, which can, in a small percentage of individuals, result in cancer. Since chronic irritation from indwelling catheters increases cancer risk, it makes sense to minimize irritation by using a silicon-coated catheter (it's slicker), or one coated with an antimicrobial to reduce risk of infection.

Mary Thompson, 43, of Del Mar, Calif., is a well-known wheelchair marothoner, having completed 10 marathons. But her athletic life would never have been possible had it not been for a course correction she made a long time ago.

Injured in 1982, Thompson, C7-8 complete, had an indwelling Foley catheter until 1988. Predictably, her bladder shriveled—causing high pressure, dysreflexia and leakage—and she had endless UTIs, so many that her doctor suggested a urinary diversion. "I had an `Indiana pouch' surgery, she says. "They completely redo your system—like the bladder itself is not really working anymore. It still remains in there, but they use your colon and intestine to build a new one." After the surgery she continued to have UTIs only slightly less frequently, but the real advantage was a change in lifestyle.

The surgery created a new opening (stoma) in her belly button for intermittent cathing. "You can see it and get to it easily," says Thompson. "When I had the pouch created it gave me a lot more freedom. I could go places without cathing. Sometimes I can go six hours without cathing, and sexually—that was definitely better. But I still had UTIs. Until recently, when I've had fewer."

Why did she continue to have UTIs until only recently? "The only way I can account for this is in the last few years I quit racing. I still do some marathons,but before that I would do up to four marathons a month, so maybe my system was run down. Maybe my body's immune system was more at risk. I can't really tell. But the new technique I use is I rub an antibiotic cream on the base of my belly button where you insert the catheter, so it gets rid of some bacteria, and I've been doing that just in the last three years."

Thompson married about six years ago, has a master's in social work and has taken a position as a social worker in at Sharp Rehab. "I'm hoping I'll find my niche," she says.

Interestingly, Tammi Ridley, C5-6 of Pasqual Valley, Calif., near San Diego, had a similar experience, only her

 

her infection-free period came right after her diversion surgery in 1996 and lasted several years, right up until recently, almost a reversal of Thompson's experience. Still, Ridley is pleased with the outcome of the surgery. "The pouch completely changed my life," she says. "It gave me a lot of independence, although in the last few years I've started to get infections again. But I lead a very demanding, stressful life. I own a restaurant—a wine bar—have a live entertainment venue, I still practice law and have a farm. A whole lot of things going on."

So why have Ridley's UTIs returned after years of being free of problems? "Because I get maybe 3 or 4 hours of sleep, I have a lot of responsibilities. I'm just run down," she says. Could she go back to being infection-free if she took better care of herself? "I think so, yes. I just had a kidney test, which is one of the first things to go, and my function was better than normal."

The parallels are obvious. Both Thompson and Ridley are happy with the freedom and convenience of the diversion surgeries, and both have had periods of recurring UTIs as well as relative freedom from them. Both attribute their run of UTIs to being run down from overactivity. Thompson's road racing used to take up most of her time and energy, while Ridley's responsibilities have escalated since she bacame owner of Friar's Folly, her wine bistro, in San Marcus, Calif.

Ridley's role as bistro owner, besides being time-consuming, carries a built-in factor. "My life is centered around wine, and coffee, and if I don't balance it out very well—if I drink too much wine, too much diet Coke, too much coffee, it's a problem."

So what's the antidote? "Water is good for your bladder," she laughs, remembering Rule One. And don't forget Rule Two: Keep your life in balance.

Extreme leaking is another reason for having surgery. In 1993 Robert Mansfield fell from a construction project, sustaining an L1 injury. "I'm one of those really lucky people who have an incomplete lower injury," he says. Mansfield is almost a full-time wheeler, but says, "I do walk a little bit with Loftstrand crutches and I do a lot of standing. If I stand—and my bladder's around 200 cc full, I'll have a leak." Absorbent underwear and "manhood pouches" leave a lot to be desired.
Prior to his 1996 surgery, Mansfield had UTIs every two months or so. But the most vexing problem was leakage while he slept. Dr. Wachs recommended bladder augmentation after doing bladder studies. Unlike Thompson and Ridley, who have pouches, Mansfield's surgery was true bladder augmentation. "About 3 inches above my penis there is a vertical scar that's probably four inches long. That's where he went in. He used a piece of my bowel to enlarge the bladder. I was in the hospital about two days." Now his bladder holds 600-800 ccs easily and he sleeps all night without getting up to

(Continued On Page Five)


     

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THE DERBY CITY NSCIA NEWSLETTER


BLADDER MATTERS, CONT'D

cath. "I'll get up in the morning and there won't be any leakage, either, it's just amazing. Before I would have leakage every night."

Mansfield , now 49, lives with his wife and two daughters in Fountain Valley , Calif. He likes to fly and belongs to International Wheelchair Aviators. Not only did bladder augmentation solve his leakage problem, it simplified his life. "I don't have to sleep with a condom catheter. I don't have to have pads or anything. It used to be a real pain in the ass. I just couldn't stand the thought of a condom catheter. Too much junk. I want to simplify my life. It was a great benefit." And he has fewer UTIs.

Even through suprapubic placement, bladder augmentation and creation of "pouches" allow for more lifestyle freedom, better bladder management and fewer UTIs—provided that lifestyle stress and other potential complications are in check—surgery always carries a risk and should only be undertaken as a last resort. For most people with nuerogenic bladder, clean intermittent cathing in combination with overall good health will result in a relative UTI-free lifestyle. But not everyone gets the same results. Some people will need to switch from clean to sterile technique due to frequent infections. "There are some people..where sterile catheters used every time has reduced their rate of infection," says Diana Cardenas, SCI researcher and director of the Northwest Regional Spinal Cord Injury System. To get insurance carriers to pay for large numbers of hydrophillic or sterile catheters, a pattern of several UTIs per year must be documented. Cardenas says it is also a good idea to rule out stones and re-check cathing technique and frequency, water consumption, etc.

What about sepsis? Can't a UTI spread to the bloodstream and quickly cause a life-threatening situation –septic shock—which some reports indicate was responsible for Christopher Reeve's death? Dr. Cardenas says there is no reason to fear a runaway infection if you are taking good care of yourself "Most of the time if you seek medical care you can get treated, and most of the time sepsis is not going to do you in," she says. "When

it can do you in is if you're already in poor health, if you already have poor nutrition, if you already have another problem or severe injury."

Usually, before septic shock sets in, a person with sepis feels very ill and has a high fever. Seek out a doctor at the first sign of infection and insist upon being seen. Dr. Cardenas cautions that some subjects in one of her studies, however, seemed less aware of developing infection. "They don't notice they're feeling kind of

 

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BLADDER MATTERS, CONT'D

bad, or they or they don't notice changes in their spasticity, or maybe they don't have spasticity, or they don't notice some of the other signs that some people say they notice, like cloudy urine, strong smell, etc. Some people actually said the first sign they had was they were really sick with a fever."

Besides staying vigilant and in good overall health, the best defense against sepis may be to be thoroughly educated about bladder management and infection. Dr. Cardenas did a study where one group of SCI subjects reviewed cathing technique and received education about appropriate bladder volume, appropriate fluid intake and output, things to watch for, and what infection looks like. "We found that the people who got this simple education process, which also included an exam, actually turned out to do better and have fewer infections and less bacteria in their bladder over the follow-up period than the group that didn't get that education," she says.

So there is no silver bullet when it comes to avoiding UTIs. No magical vaccine, no perfect surgery, no absolutely bacteria proof technique, although some are arguably better than others. What counts in the long run is knowing the basics and consistently sticking with them.

And don't overdo it. Life is too short as it is.

     

Page 6

THE DERBY CITY NSCIA NEWSLETTER


You are cordially invited to join us!

The Derby City Chapter of the National Spinal Cord Injury Association
consists of people with spinal cord injuries and similar physical conditions, their family members, friends, and
professionals or other interested parties.

We meet:

WHEN- Third Monday of every month from 6:30 to 9:00 PM
WHERE- Frazier Rehab Center , 4th floor Dining Room
220 Abraham Flexner Way

If you wish to be a member, donor, and/or be on the mailing list of the Derby City Chapter of the National Spinal Cord Injury Association please complete and mail the following form to the address below

National Spinal Cord Injury Association
Derby City Chapter
Membership & Organization Sponsorship Form

Name: Mr./Mrs./Ms./Dr. ________________________________________ Date: ________

Address: ______________________________________________________ Apt.# _______

City/State/Zip: ______________________________________________________

Business (if any): ______________________________________________________

Home Phone: (____)____________________ Work Phone: (____)____________________

Date of Birth _______________________

Para: ______ Quad: ______ Hemiplegic: ______

Level of Disability __________________ Other Disability __________________

Able-Bodied(yes/no): ____________

New Member: __________________ Renewal: __________________

Newsletter Subscription (only $12): __________________

Special Interests /Hobbies/Sports: _____________________________________________

****

Membership is open to all individuals and sponsorship to all organizations interested in spinal cord injury.

Mark Type of TAX DEDUCTIBLE Individual Membership or Organization Donor Category Desired***

Regular-$12 ___________

Sponsor-$25 ___________

Patron $50 ___________

Benefactor-$100 ___________

Permanent- $1000/lifetime** ___________

Bronze Organization-$100-249 ___________

Silver Organization-$250-499 ___________

Gold Organization- $500-999 ___________

Platinum Organization-$1000-2499 ___________

Diamond Organization-$2500 0r Over. ___________

   

Please make checks payable to: NSCIA Derby City Chapter

David Allgood
6703 Triangle Drive
Louisville , KY. 40214