Brief History (06/22/04 archive)

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? (06/24/04 archive)

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.

What the resources say (06/27/04 archive)

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 (06/29/04

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 (06/30/04 archive)

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?

Follow the links (07/13/04 archive)

Follow the links

Date: 7/13/04 at 10:14PM

O.K., here’s a sampling of what I’ve been doing lately. Not that I really need more information, but it’s always fun to find good images on the web .

(click on the hyperlinks)

Good explanation of Echocardiograms and especially what happens during a TEE, from the American Society of Echocardiography. Try the video (requires Windows media player). (Update Note: image part of the video is no longer available)

Here is a nice image of the inside of a heart . (Update Note: image no longer available)

Good explanation of mitral valve regurgitation and surgery, especially the issues around when to have the surgery, from WebMD.

Pictures of actual TEE’s, from the American College of Cardiology Foundation are here and here. The second one has video clips.

This site has a really good picture of a mitral valve. Click on the “Next image” link on the right to get some TEE’s of mitral regurgitation.

Surgery date (07/16/04 archive)

Surgery date

Date: 7/16/04 at 7:35PM

Surgery is set for August 5. I’ll go to Orlando the day before and have the pre-op tests done, then go in to the hospital very early the next morning.

See the links on the left for the hospital web site and location (in the Links box).

Now, to satisfy my morbid need for yet more information, I guess I’ll go look up what happens before and after surgery…

Counting down… (08/02/04 archive)

Counting down…

Date: 8/2/04 at 5:29AM

O.K., I’ve got a checklist and to-do list, and I’m working on them. I got a call Friday from the surgeon’s office saying they never received the heart catheterization films from the hospital here, so it’s been a scramble to find out what happened and to get another set made so I can take them with me when I go. (Item #1 on the to-do list) I will leave on Wednesday to get pre-op tests done (I’m told it will take the whole afternoon).

Meanwhile, I’ve been getting some wonderful wishes and encouragement from friends and family, and taking it to heart!

Many thanks from my heart to yours!

The new count (08/13/04 archive)

The new count

Date: 8/13/04 at 9:19AM

I have come up with a list of fifteen cardiovascular surgeons from Cigna’s provider directory, and have been calling their offices. So far:

• three don’t take Cigna HMO
• two don’t do surgery (one is semi-retired and doesn’t do surgery any more)
• three are checking with the doctor(s) about valve repair.
• one referred me to another doctor in the same office (earliest appointment is 2 weeks away)
• one says he does only a few repairs per year
• the rest haven’t answered the phone.

So far, I have three appointments, and none of them are on Cigna’s list of cardiovascular surgeons.

A new wrinkle (08/14/04 archive)

A new wrinkle

Date: 8/14/04 at 9:55PM

The trip back to the doctor was fruitful after all. He does two to three mitral valve repairs a week. He also does robotic mitral valve repairs, and seems to think I am a prime candidate for robotic surgery.

We had a very long talk, and I came away with a lot to think about. He has done 30 robotic surgeries in the last year or so, and has had no complications or reoperations. Of course, he very carefully selects who he will do robotic surgery on, so it’s probably not surprising that he’s getting good results.

However, I’m satisfied with him; at this point it’s just a matter of whether to have regular surgery or robotic surgery, and that’s what I’ve been pondering this weekend.

On the pro side (for robotic surgery):

• the incisions are much smaller, and don’t involve cutting through the chest and sternum
• the recovery time is shorter
• when done well, it has the potential for better results.

On the down side:

• the bypass pump time is longer, which increases the possibility of stroke
• it’s still new and evolving; there is not as much experience with this type of cardiac surgery.

On the side of regular surgery:

• the bypass pump time is shorter
• it’s the “tried and true” method.

The downside of regular surgery:

• the sternum is cut open
• everything is open (and therefore more open to infection)
• longer recovery time

And so I will ponder until Monday morning, when I will call to find out when surgery can be scheduled. I’m hoping for this week.

I know what you’re all thinking: yes, this doctor takes my variety of Cigna, and Cigna has told me the hospital is within my area. So I will try again…