My Advocate

I'm sure there have been studies done on the importance of having a friend or family member at your side when you're in surgery or staying at the hospital with a serious illness. I casually searched the internet and couldn't find one, but it's not hard to find stories of people who die in the ER. I remember a story maybe two years ago about a woman who showed up on an especially busy night at the ER. She was unable to tell the doctors or nurses how to get in touch with her friends and family. All the available rooms were full, so they had to keep her in a bed out in the hallway. The hospital staff got caught up with other cases and at some point she passed away during the night. You've all heard stories similar to this.

I've seen how vital it is to have a loved one with you. There have been so many times when I'm still groggy from anesthesia or pain medications and I've needed someone there to make decisions on my behalf. Honestly, I don't know how adults with bad medical problems can get by on their own.

My last jaw surgery in 2009 (when I lost the ability to swallow) was in Denver. As usual, Betsy stayed in the waiting room until the doctors were done with me--she refuses to leave the hospital during all my surgeries, even the 12+ hour ones.

She almost passed out when she saw me after this 13 hour surgery in 2008

My friend, Dave (attending medical school there) kept Betsy company. I have no memory of when I woke up. I was on a lot of pain medication, but Betsy and Dave tell me I was in a jovial mood. I had a breathing tube down my throat so I couldn't speak but I was smiling and making jokes by writing on a white board. After spending a few hours with me, Betsy felt comfortable enough to leave to take care of our infant daughter and get some rest. When I finally came down off my medication-induced high, there were no familiar faces to greet me. I thought surgery had just ended. The breathing tube was still there and I couldn't get my nurse to understand that I was confused about the day/time and why my wife was gone. I was in quite a bit of pain and extremely depressed the entire night. 

That night was a taste of how my medical treatment would be without Betsy by my side. It wasn't pleasant. 

A couple weeks ago, I drove to Augusta, Georgia, to visit the VA hospital for my annual exam at their Spinal Cord Injury Clinic. The drive is about 6 hours. Betsy couldn't go because it was the middle of the week and she had to work. It was exponentially more difficult to drive down, find the hotel, eat meals, find the hospital, sit through multiple examinations and tests, and drive home all by myself. 

Takes me about 12 seconds to completely mess up my hotel room when I'm alone

Lonely tubie selfie from my Augusta hotel

I don't know how she does it, but Betsy is an expert at getting exactly what I need from doctors. Here's an example of me calling up my GI doctor's office to get an appointment to get my feeding tube changed:

"Dr. Spaceman's office," the receptionist pleasantly greets. I call him Dr. Spaceman--pronounced "spah-cheh-men"--because he looks exactly like the doctor played by Chris Parnell on the show "30 Rock." You be the judge:

http://m.youtube.com/watch?v=CsBXmHnb4qs

The doppelganger: Dr. Leo Spaceman

GI Doctor Charles O'Connor. The resemblance is uncanny

"Yes, hi, I'm a patient of Dr. Spaceman's," I greet pleasantly. "The balloon on my feeding tube has burst and I'd like to schedule an appointment to get a new G tube."

"OK, Dr. Spaceman has an opening on the 20th. I can fit you in at 9:00."

"This Thursday? That would be great!" I exclaim.

The receptionist just laughs, "Ha Ha! Oh no no, sir! I can't possibly get you in that soon! I meant two months from now, May 20th. It's on a Tuesday."

"But my balloon is deflated!" I desperately cry. "My tube is literally falling out! How will I eat??"

"I'm sorry, sir, there are far too many more important patients with a 'tummy ache' who need to be seen immediately. If it's an emergency, you'll have to go to the ER."

So, that didn't go so well. Let's look at how that same conversation would go if Betsy was the one talking to Dr. Spaceman's office:

"Dr. Spaceman's office."

"Yes, hi, my husband's feeding tube is broken and he needs to get it changed."

"Yes ma'am!" the receptionist exclaims obsequiously. "I can get him in this afternoon!"

"We can't wait that long," Betsy protests. "Do you have anything earlier?"

"Well, one of his patients is passing a baseball-sized kidney stone and an alien just burst out of another patient's large intestine, but your situation sounds much more serious!! How about if Dr. Spaceman skips that other stuff and visits you at home to change your husband's tube?"

"I guess that will be ok," she grudgingly concedes. "Just tell him to hurry."

"Yes, ma'am! Right away, ma'am! Don't worry about the bill! We'll cover this one."

All right, I'm exaggerating a little, but Betsy really knows how to get things done. How could I possibly get by without her?? She makes most calls to doctors' offices. She keeps my appointments straight. She organizes my medications. She accompanies me for every hospital procedure. Betsy always says that I'm the perfect patient, and I would be just fine without her, but I'm pretty sure I'd be balled up in the fetal position if she wasn't around.

In short, on February 2, 2002, I saved my life. That was the day (I know, it's 2-2-2) I married my lovely bride, and I've come to believe that everyone with a serious illness or injury needs an advocate to survive the medical system. In 2002, I didn't know what our future held, but less than two years after our wedding day, I was diagnosed with lymphoma.

She even stuck with me when I was fat