Patient's preferences differ - and matter
Leo Greene, Columnist


Click photo to enlargeLeo Greene«1»Editor's note: Inland Valley Daily Bulletin reporter and videographer Leo Greene has been documenting his journey since being diagnosed with ALS, Lou Gehrig's disease, in August 2006.


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New Video: Leo's Story: 'Modern Times', 11/04/07
Special Section: Leo's Story

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Of all the possible anatomical locales for a piercing, the site immediately below the breastbone and approximately seven inches above the belly button has yet to reach the level of fashion rage.
Unless you have ALS.

I underwent that minor surgical procedure in mid-October. The package deal included the usual adornment for that particular puncture: a dangly foot-long plastic tube running through the hole and directly into my stomach. With my shirt off, I could pass for one of those '70s-era pull-string talking dolls with several cute messages.

"Hi! My name is Leo."

Like some of those dolls, I've been known to occasionally get stuck on the same phrase.

My PEG tube, as it's called, is used to deliver nourishment directly to the gut. Some with ALS and other conditions where eating is temporarily


or permanently compromised opt for the PEG.
Not everyone does, however.

Some PALS prefer to let things take their own course. Their reasons might involve their religious views, or human dignity or simply not wanting to prolong things.

Al Marble, 61 of Gulfport, Miss., frequents one of the busier ALS Internet forums where patients and caregivers trade information and offer emotional support.

He was diagnosed with ALS in May of 2006, shortly before I got my news. Like me, Al has some difficulty swallowing. And his breathing is also weakening.

Despite these emerging problems, Al said he will not resort to invasive procedures such as a feeding tube or ventilator.

"My reasons for making this decision are based on my Christian beliefs," he said. "God breathed into man the breath of life and he became a living soul. When God decides to remove the breath from my body, I have decided it is time to go."

Linda of Lake Forest in Orange County passed away from ALS at age 47 in November of 2006. She was diagnosed at age 43.

"From the beginning she said she didn't want a trach or a feeding tube and didn't want to be kept alive by any machines," said Jeanne, a close friend who helped Linda through the four year ordeal.

Despite Linda's wishes, Jeanne felt the doctor pressured her friend into getting a PEG.

"She hated her feeding tube and only agreed to it because her doctor told her it would be cruel of her to put her family through watching her starve to death."

Linda possessed an amazing determination to live life as normally as possible, Jeanne said. She died with dignity and grace in her own bed surrounded by family and friends.

I unequivocally support people like Linda and Al, whatever their reasons. This is an area of personal choice.

I have been taking a different route. However, as in Linda's case, I suspect my physicians might have done well to pay closer attention to their patient.

This summer a flare up of colitis caused me to quickly lose weight. I dropped 30 pounds and didn't have a spare 30 to lose.

With chewing and swallowing becoming more difficult, I couldn't take in enough calories to gain or even sustain my weight. By early September, I could have easily fit into a pair of my super tight 1969 Britannia bell-bottoms. Not a pretty sight, back then or now.

I visited my primary care physician who, alarmed by my disappearing act, personally accompanied me across the street to the hospital and ordered me admitted.

A couple of days later, I was sent home with instructions to eat and gain weight.

At least a half-dozen doctors saw me and read my chart over the course of those two days. No one mentioned a feeding tube.

I eventually requested one after I was home for a while and after conducting my own research. My doctor agreed and referred me to a specialist.

After the procedure, my dear friend and caregiver Ann shouldn't have had to ask the specialist for instructions on how to use the PEG.

Now, I will point out that I tend to take charge of my treatment. And my neurologist and primary care doctor have been wonderfully agreeable to trying things.

I do have concern for the less assertive patient, however. And in Linda's case, her doctor might have paid better attention to his patient's desire for a dignified outcome.

As for me, after two weeks on the tube, my weight appears to be on the rise and I have much more energy. I can still take food by mouth.

And if you pull my string, I'll talk.

l_greene@dailybulletin.com


How to help
A silent auction will be held Saturday to honor and benefit Leo Greene, a reporter and videographer for the Daily Bulletin. Greene was diagnosed with ALS in August 2006.

"Life through the Lens" is a collaboration of work from the photo staffs of the Daily Bulletin and The Sun.

Proceeds from the event will go to Greene to assist him with medical costs. The silent auction begins at 5:30 p.m. and closes at 9:30 p.m.

The auction will be at Casa Weis gallery, 300 S. Thomas St., Unit 301, Pomona.

ALS, commonly referred to as Lou Gehrig's disease, is a progressive neurodegenerative disease that attacks the neurons in the brain and spinal cord.

liset.marquez@dailybulletin.com
http://www.dailybulletin.com/ci_7364970