Brief History
Date: 6/22/04 at 6:48PM

It has been one month since I was diagnosed with severe mitral regurgitation, and began this trek through the healthcare system towards surgery to correct it.

Stage one: find out everything I can about this, which simply confirmed how serious it is, and that I do, indeed, need surgery, and need it fairly urgently.

Stage two: heart catheterization, which reinforced the initial diagnosis made by echocardiogram.

Stage three: recover from heart catheterization! Why is this taking so long?

Stage four: find a competent surgeon and hospital (not as easy as it looks).

Where’s the data?

Date: 6/24/04 at 7:22AM

The Questions:

1. How many (uncomplicated) Mitral Valve repairs in the last 3 years?
2. What is the mean age of the patients?
3. What is the complication rate?
4. What is the pump run time?*
5. (Same questions for valve replacements)

*Pump time is the length of time the patient is on a heart pump while the heart is stopped. The longer the pump time, the more likely there will be complications such as stroke.

Back up and regroup

Date: 6/26/04 at 9:36AM

PCP* (looking at the cardiologist’s reports): Oh, yeah, this needs to be fixed.

We then had a nice long discussion about surgeons and what I had done so far.

PCP: If you’re going to ask things like that, they’re going to have to see your face, and you’re going to have to ask in a way that they don’t perceive as questioning their competence.

What you have is pretty rare. You’re probably not going to find a surgeon outside of a tertiary care facility who does more than a few of these a year.

*PCP: Primary Care Physician

Advice from my sister: Don’t you know someone who works in one of the hospital OR’s or ICU units? Ask them who they would use, or who they’d avoid.

Me: Well, I know an anesthetist who works at a different hospital.

Sister: Ask him. They share information.

Me (during a discussion with my dad): I found a cardiac surgeon who was at the same hospital you were in 40 years ago…

Dad (recognizing the name): Yes! I remember him! I bet if I called him he could give me some good names!

What do people do when they don’t know anyone in the medical field?

What the resources say:

Date: 6/27/04 at 12:35PM

From Questions for Patients with Heart Valve Disease to Ask their Physicians:

4. What are the risks of the operation?

• If you are the surgeon, how many of these operations have you performed?
• What are your results?

From Health Care Coach, Choosing a Surgeon: Tips for Making the Best Decision:

The following questions will help you decide if this surgeon is right for you.
“What is your experience in performing this procedure? (How long have you been performing this procedure?)”
“How many have you performed in the past year?”
“Can you give me names of surgeons who perform this procedure more frequently?”
“What percentage of your patients have had significant complications related to this procedure? What are these complications?” (The surgeon should disclose this information!)

From JCAHO (Joint Commission on Accreditation of Healthcare Organizations, Helping You Choose The Hospital For You:

Do you know the hospital’s success record in carrying out the specific medical procedure you need? What is the specific training of the physician who will perform the procedure? Ask how often the particular procedure is done.

From Patient Safety First, Choosing a Doctor to do Your Surgery:

What to Ask
The best way to find out about the doctor�s experience is to ask questions.

• How many operations like mine have you done in the last two years?
• How many problems and or deaths happened?
• What is your success rate?

From “How to choose a cardiac surgeon,” by Julia Swain, M.D., in State of the Heart: the practical guide to your heart and heart surgery, by Larry Stephenson with Jeffrey Rondengen, edited by Jon VanZile, Write Stuff Enterprises, 1999:

What you should know about cardiac surgery databases
The Society of Thoracic Surgeons, the main professional organization for cardiac surgeons, has spent years developing a database for risk adjustment. Although individual surgeon data and hospital data are not available, the national average data can be accessed by the public on the internet at www.sts.org. Most of the cardiac surgeons in the country use this database to track their results and to compare themselves with other surgeons.
Other databases exist for regions (such as Northern New England and Cleveland) and for the Veterans Affairs hospitals. New York and Pennsylvania have databases that are available to the public and rate both individual surgeons and hospitals. Surgeons themselves should be enrolled in a database to be able to assess their results. Although many of these databases only rate the quality of results for coronary bypass operations, other operations usually parallel these results.
Still another database at www.healthgrades.com contains Medicare statistics for all heart surgery programs in the United States.
…
Referring physicians should know the track records of the surgeons to whom they refer and be able to explain these relatively complicated scales to their patients. Likewise, every surgeon should know their results and share them with their referring doctors and prospective patients.
…
The top ten things you need to ask before Cardiac Surgery
1. How many of these operations has the surgeon personally performed in the past three years? (A prevailing opinion is that a surgeon should perform at least seventy-five open heart surgery operations per year, although more experienced surgeons can obtain excellent results even though they may do fewer operations per year).
2. What percentage of the surgeon’s patents over the last three years have died in the hospital after coronary bypass operations?
3. Does the surgeon use a nationally recognized database to compare his/her results to those of other surgeons? How do the results compare?
…
7. How many open heart operations are done per year at this hospital? How long has the hospital had an open heart surgery program.
…

Early results are in…and out

Date: 6/29/04 at 7:37PM

From the anesthetist: Doctors A, B, C, and especially D

From the doctor my dad spoke to: Doctors E and F, and especially D

From my cardiologist: Doctors G and H and especially D

8 doctors from 4 different hospitals:

A, B, and C are in the same office; A apparently does more repairs, so I made an appointment with him. There was a message for me when I got home: “don’t come in tomorrow; call us…”

E is not taking new cases for at least two weeks while they work out problems with anesthesiologists.

F’s office was inexplicably closed today, but the answering service promised to give them the message to call me…

I’ve been to see G

H no longer takes my insurance.

I tried to make an appointment with D. They’ll call me Monday or Tuesday to tell me when to come in…

8 doctors from 4 different hospitals. I wonder if that’s enough…

Changes, and more changes

Date: 6/30/04 at 5:41PM

The doctors so far: A, B, C, D, E, F, G, and H.

The call from A’s office yesterday was to inform me that B actually does mitral valves, so they scheduled me to see him next Tuesday morning.

I got through to F’s office; they scheduled an appointment for next Tuesday afternoon.

D’s office is supposed to call me Monday or Tuesday to come in for an appointment.

Another friend called last night recommending yet another doctor: I

I wonfer if 9 will be enough?

Pidgeonholed

Date: 7/2/04 at 11:25AM

Feedback from those who treat this condition (mitral valve regurgitation):

These patients tend to be middle-aged, highly educated, and ask a lot of questions.

Tuesday?

Date: 7/2/04 at 5:38PM

A day off today…from normal work, but not from creating chaos in my calendar.

I finally got in touch with I’s office (that’s doctor number 9, hospital number 5). The earliest opening, so the lady said, was in August. We had a long chat, which finally ended with the promise to call if there is an earlier cancellation. An hour later she called back and asked if I could come in Tuesday.

Meanwhile, my sister has done some checking on this doctor. The report back from a cardiac anesthesiologist who works in the same town: that is the doctor any of them would use if they needed heart surgery.

So, in this quest for the holy grail, we now have:

• B (recommended)
• F (recommended)
• D (highly recommended)
• I (highly recommended)

What is it about Tuesdays? Obviously I have some calls to make before Tuesday to reschedule some of these appointments.

Hospital numbers

Date: 7/5/04 at 4:16PM

I don’t know why it keeps adding all the white space…
but I think I’ll stop doing tables.

It’s pretty obvious where most of the mitral valve repairs are being done. But it’s also interesting to see the difference in hospital stays. Low numbers of MV repairs, with a few of them having long hospital stays, can really mess up their totals!

The numbers were taken from Florida Health Stats

Good news and … bad?

Date: 7/8/04 at 6:10AM

The good news: I have found an expert. He does a lot of mitral valve repairs.

The “bad” news: He’s 150 miles away and wants more data, which means getting a trans-esophogeal echocardiogram (known as a TEE); and he wants it done locally there.

He is taking a conservative approach and is looking at conflicting data from the procedures done so far: there is severe regurgitation, but the hemodynamics (heart functioning) are normal. He says I’m a borderline case as far as surgical repair goes.

The issue here is just how bad is it? Is it manageable (medication and monitoring), or do the risks of not repairing it outweigh the risks of surgery?

So he sent me to another cardiologist for assessment and a TEE, which is scheduled for next week.

I asked them both: What is the threshhold you’re looking for? Reduced heart function, increased pulmonary involvement, atrial or ventrical enlargement?

Each responded: Let’s wait until we see the TEE. It will give us a very accurate picture of the actual condition of the valve. which may leave no question about surgery.

Me: And what if the situataion is the same?

Them: Then we will have a long discussion

And that’s where it stands: two more doctors and another procedure scheduled. 150 miles away.