You Want to Know What's Wrong with the System?

Well, the verdict is in. My wonderful primary care provider was working on Sunday and saw the fax from radiology -- I have a hernia with a "knuckle" of bowel poking through. It's not yet stuck there, but since this is my third hernia, I know that everybody who's rational will tell me that I shouldn't wait until the bowel is "incarcerated" (the radiologist's word) to have it repaired. Surgery number 9.

But then it got worse. I had swollen glands yesterday morning -- not normal for me at all. So I went to the primary care provider's office. My wonderful doctor was off, but I told the doctor who was filling in for him that I'd had blood drawn and stool samples taken last Thursday, and perhaps that would be useful for him in deciding whether or not I have an infection. So he got the test results. It's not c-difficile. My SED rate and c-reactive protein -- markers of inflammation -- have spiked. That means this is an "inflammatory event" (doctor's phrase) -- in other words, it means my Crohn's disease is active. Who even cares about swollen glands?

I came home, scanned in all the test results, and emailed my surgeon and my expert Crohn's doctor in New York. How quickly do I need surgery? What are we going to do about the Crohn's considering the fact that I'm already on every medication known to humankind?

And then I waited. I kept myself busy. I got my birthday gift to myself, a GPS navigation system for my car for the ride this week-end to the closing ceremonies of the Get Your Guts in Gear New York ride in Saratoga Springs, so I figured out how that works. And then I was on the radio -- the wonderful and, in Connecticut, very popular Faith Middleton show -- so that was exciting to hear, and it was followed by several phone calls and emails from people -- my Dad, my aunt, and some patients needing help. So I was pretty tied up until about 7:15 pm.

Before that, I got a call from the local (Connecticut) gastroenterologist's nurse telling me I have a hernia. I responded, "But there's a knuckle of bowel stuck through the hernia. Do I need surgery? What about the blood and stool test results?" "Oh," said she, "did we order those?" Uh, yeah. "I'll have the doctor call you." Great. We expect patients with chronic illnesses to help manage their own care, but you don't anticipate that a patient will ask how this newly discovered hernia would be treated? Come on, now.

So by the time I finished working after 7 pm last night and hadn't heard from any doctors -- the surgeon's office had told me that yesterday was his last day before vacation, so I'll give him a pass, but neither the Connecticut GI doctor or the New York really expensive hot shot GI doctor had been in touch at all -- so I called the doctor in New York on her cell phone.

"Jennifer, what can I do for you?"
"I have a hernia."
"Yes, I know that."
"Have you seen the blood test results yet?"
"No. What do they say?"
" My SED rate went from 17 in April to 48 now. My c-reactive protein went from 0.9 in April to 1.37 now."
A moment of silence.
"Those are higher than we would like."
"Yes, and the c-diff and other stool samples are negative."
"So it sounds like we have an inflammatory event."
"Yes, I know."
"What do you want to do?" That was the doctor asking me.
"Well, for starters, I made an appointment to come see you next Thursday."
"Was that because of my schedule or yours?"
"Some of each," I said. "I didn't want to come see you on my birthday and that was the only other choice."
"I don't want you to wait that long," she said. I thought I was gonna cry tears of relief -- I finally got someone's attention. Someone who knows that my SED rate never goes much higher than this. Someone who knows I'm already on every medication. Someone who is taking this seriously.
"How much Colazal and Pentasa are you taking?"
"One Pentasa because I get headaches from it, and four Colazal because we cut it back."
"Okay, let's increase the Colazal to six, stop the Pentasa, and I'm going to start you on a new 5-ASA called Apriso."
Since there are no Crohn's drugs I don't know about, I know that this is a new longer-acting, time-released version of mesalamine -- the same drug as in Pentasa, Colazal, Asacol, etc. Some doctors say Colazal is released in the colon and Pentasa -- and apparently Apriso -- is released in the small intestine, so that's why you'd take two. Other doctors say this is bunk and has been disproven. But I'm going with the woman who saved my life.
"Email me the pharmacy phone number and I will call it in," she promised.
Frankly, I'm afraid to call the pharmacy. I don't want to hear that she didn't follow through.

Had I not had swollen glands yesterday, and had my PCP not called me on Sunday, I would know only one thing: I have a hernia. I wouldn't know there was bowel poking through. I wouldn't know whether anybody thinks I should have surgery (this, I still don't know). I wouldn't have the blood and stool test results. I wouldn't have made an appointment to see the doctor in New York. I wouldn't have gotten my doctor on her cell phone last night. I wouldn't have gotten new medication instructions. I'd just be sitting here waiting, not knowing what's wrong and what to do.

WHAT'S WRONG WITH THIS PICTURE????????????????????????

A doctor has a nurse call to say "you have a hernia," without anticipating that the patient -- especially this patient -- will ask if it requires surgery? And the doctor who ordered the blood and stool tests doesn't look to see if the results are in before she has the nurse call with the radiology results? And the doctors in New York apparently don't check their email?

If there is ANY patient reading this who would not have asked what it means to have a hernia, please hear me -- clearly, it's up to us to ask. Otherwise, you wait until you have an obstruction one day and need emergency surgery.

If there is ANY patient reading this who would not have asked about labs when the nurse called to report the discovery of the hernia, please hear me -- if you don't ask, they don't look, and you stay sick a few days longer.

If there is ANY patient reading this who would send an email to a doctor and just wait, without following up by phone, please hear me -- you try EVERY avenue to get their attention.

But most of all, if there is anybody reading this who wants to know what's wrong with our health care system today, please hear me -- this is what's wrong. Doctors are overwhelmed. Due to negotiated prices and reduced rates, doctors are seeing too many patients. They don't focus on you, even when you're really sick, until you're so sick that they don't have a choice but to deal with you. And by then, you've paid a horrible price.

Patients MUST -- MUST -- help manage their own care. We have only one patient to keep track of, while they have thousands. But in order to manage our own care, we have to be aggressive, pushy -- and really well educated. Would you have known what it meant when the doctor said the bowel could become incarcerated? Would you have known what it means when the doctor said Apriso was a different delivery system of the mesalamine that's in these other drugs? Indeed, would you have known how to spell Apriso?

The doctor in Connecticut who still hasn't called me? Well, she's why I have an expert in New York. I cannot tolerate a doctor who would have a nurse call and tell me I have a hernia. You patients, you don't have to accept this. You doctors -- you should be ashamed. I don't care what pressures are on you -- you don't leave patients undiagnosed and untreated. And if you give a patient your email address, your patient is going to assume you actually read your email. If you don't want that expectation, then don't give out your email address -- very simple.

But mostly, I want the politicians to know this. This is what it's like to be a patient. I just got several really important pieces of information that thank goodness I can interpret on my own, but most patients can't. Do you know what an elevated SED rate and c-reactive protein mean? Do you know why you'd take Colazal and Apriso even though they're both mesalamine? Would you know to ask how long you can wait before having a hernia repair? And most of all, would you know how long to wait for your doctor to return your call or email before you try another approach? I had to navigate that whole scenario myself. If I had done nothing, who knows how long it would be until I got my copy of the blood test results in the mail? By then, I'd be sick for another week, another week untreated, another chance for this frigging disease to spiral out of control and make me sicker, make it harder to get it back under control, and ultimately cost the health care system way more money.

And that's really my point here. If we want to control the cost of chronic illnesses, we must use the one free, capable resource that is currently under-utilized -- PATIENTS. Patients should read everything about their disease. They should know about new meds. They should know what having a hernia means. They should know about SED rates and c-reactive protein. But they don't just learn all that by osmosis -- they need to be taught. It's different for me -- this is my business. I know the new meds because somebody's insurance company wouldn't pay for them. For the average patient, doctors are going to have to do a little educating.

Oh -- and I just called my pharmacy. Nothing was called in for me last night. I guess I'll send another email, wait a few hours, and then call the office and see if someone else will call it in. Thank goodness at least I know what it's supposed to be.

Because if I don't, who will?

And THAT is not the way things should be AT ALL. Jennifer