MY DILEMMA

[Guest guest]

For those of you who don't know me that well, I have had A for 24 years, an open Heller in 1991, and recently was told by a NY City surgeon that I should have an esophagectomy. He said there is time to wait, but not to wait forever. He could also do the surgery this Sept. He correctly observed that I was not ready to "sacrifice" my E to eat better, and I needed to hear it elsewhere.

Please excuse me for not giving the surgeon and gastroenterologists names at the moment.

Have your "scorecards" ready please.

The DILEMMA

Last Friday, an appointment was set up with Dr. H, in Baltimore, (BALT) who did my open Heller in 1991 to see him this Friday in Baltimore at 8:45AM. That day and time cannot be changed.

Sunday morning I emailed a surgeon (Dr. S) in Philadelphia (PHIL) and asked him if he could see me late Thursday, or Friday afternoon. He actually emailed back within an hour to see him Thursday at 4:30, and would try to set me up with a gastroenterologist (Dr. G,) for around the same time or on Friday.

On Monday I was told an appointment was set up to see Dr. G at 11AM, on Thursday at the same hospital in PHIL.

So far, so good. Thurs. 11 AM with Dr. G in PHIL

Thurs 4:30 PM with Dr. S. in PHIL

Friday 8:45 with Dr. H in BALT

But, I used to be a patient of the chief of Gastroenterology at s Hopkins until he retired (even though I am from NY). I knew his successor, (Dr. M) and wanted to see him too. Today I asked if Dr. M could see me on Friday. They told me he was out on Friday, but could see me on Thursday at 3PM. I tentatively accepted the appointment.

So, it now looks like this:

Thurs. 11 AM with Dr. G in PHIL

Thurs 3PM with Dr. M in BALT

Thurs 4:30 PM with Dr. S. in PHIL

Friday 8:45 with Dr. H in BALT

It could take, door to door, about 2 hours to travel, or maybe less, but doctors are notorious for starting appointments late. It cannot remain this way.

Thoughts

To try to move Dr. S to 9am (from 4:30PM) on Thursday, but he is in the O.R. that morning.

To try to move Dr. S. to 12 noon (from 4:30PM) on Thursday. Their office will contact me if they can move me up, but not until Thursday.

Dr. M, the GI in BALT is not available on Friday at all. The 3PM seems pretty much fixed. If he had an 8AM appointment time available I might be able see him, then drive the 2 hours to BALT, returning there the next morning to see Dr. H, my surgeon. But Dr. M is not available that morning.

The office of Dr. M in BALT said I could drop off all my records, the X-rays and review them. I would have to have a copy of my Xrays made. He is the one who is head of the Gastro Dept at Hopkins and was seen by me a couple of times in the 1990's.

In spite of his kindness in emailing me back, since Dr. S, the surgeon and Dr. G, the GI, are friends, perhaps they would be of the same mind (simplistic, I know), and I would not need to see both. If I dropped the appointment with Dr. S at 4:30 PM, Dr. G at 11AM may not take too kindly of my canceling out Dr. S at 4:30.

"What am I looking for exactly?"

I am looking for a surgeon or GI doctor who might tell me that there is a choice other than an esophagectomy, plain and simple, that maybe a lesser surgical procedure can buy me time, or that there is a new surgery that the FDA will approve in a couple of years that will "fix" me. I am presently 57 years old. The descriptions I have read about the surgery (and I profusely thank those on this Board who have had esophagectomies for describing their surgeries), the possible complications, the mortality rates (various), and the risks involved during and after recoveries, lead me to think that I don't want to be a part of this.

Like from NY, who is a generation younger than me, we are basically feeling fine, but want to stay in control of our own destinies.

I'm still working (more than full time) and just can't hop in the car all the time to go check out doctors' opinions.

What are the risks of doing nothing? What kind of "behavior modification" should I do in order to extend the "life" of my esophagus. How much can this thing stretch before other organs become at risk? Can it ever just stretch so far that it disintegrates? These are some of many questions I have for the doctors.

I'm sorry if my description was confusing, and hopefully I did not foul up any of the doctors initials.

The doctors who I listed as seeing on Thursday can only be seen on Thursday, and the surgeon I am seeing on Friday can only be seen on Friday.

I would like, at some time, to send records to Dr. Patti in CA & Dr. Rice at Cleveland Clinic, of course, including the recent Xrays.

If anyone, who has survived this post up to this point, and would like to offer their opinion, which I would value, I would be most appreciative.