Thursday, February 14, 2008

Letter #25

Dear Future Physician,

I've had to deal with the medical establishment since the day I was born
back in 1964.

First of all, I was born with a very rare condition called arhinia.
Arhinia is the complete absence of the nose. Arhinia is extremely rare
and there's not a lot of info about it. I have the most info about it
on my website as far at the internet goes. You can visit the "My Life"
portion of my website at I
pretty much lay my condition out for the world to read about. I don't
try to hide it. If people would leave their hands off my pics, I would
post pics of me when I was younger. But thanks to the search engines I
can no longer do that. Until I come up with a way to keep the search
engines out of photo pages, the photos will remain offline.

I have had many dealings with physicians over the years. I have learned
many things over the years.

1. Never sugar-coat anything - Tell it like it is even if it is bad

This is a pet peeve of mine. I do not like medical news sugar-coated.
I am an adult not a 5 yr. old.

2. Don't hold back!

This is another pet peeve of mine. I am the one who has to deal with
the information that you give me. Just come out and tell me up front.
I hate surprises. I especially do when it comes to my medical stuff.

3. Don't ever assume that a patient's problem is simply something that
is part of the condition he or she already has.

I talk about a problem where the pituitary gland can't signal the
ovaries to kick in on their own. No doctor ever delved into it because
I was going thru too much surgery at the time. It would have been nice
to know if it was an actual problem from arhinia (brain anomalies are
always associated with the condition) or something else. At this point,
I will never know.

4. Don't brush someone off because he or she has a condition that you
know nothing about.

I've had this happen to me a time or two when I have gone into a
doctor's office, especially to see a primary care physician. If you
don't know about the condition either ask the patient or do some
research to learn about the patient's condition. Don't pretend you know
something when you don't.. Educate yourself or send the patient on to
someone who does!

5. Refer the patient on to the specialist he or she needs.

I actually had a primary care physician tell me that an ENT needed to do
the surgery that I needed a plastic surgeon to do! Fortunately, the
plastic surgeon was just coming on board with the HMO at the time and
talked to the primary care physician himself. I also hand-delivered my
retired plastic surgeon (which the HMO misplaced in the beginning). It
was scary for me

6. Communicate with your patients

Communication is a must! A patient-doctor relationship is very
important, especially if you have patients over a long period of time.
Since I was young (probably before I was five), I was very vocal about
my medical stuff. Let's say I was my plastic surgeon's worst nightmare
(in a good way). :) I had to know everything. :) Everyone would have
to stop and explain things in terms that I could understand. If I were
to have surgery today, I would not need a lot explained to me.
I am a surgery veteran... I've had over 3 dozen.... I had my first one
when I was 9 or 10 days old and had my last one in January 1999 when I
was 34.

I have dealt with doctors locally and internationally. My longtime
plastic surgeon was like a member of our family. He was my plastic
surgeon for twenty-nine years. I know that I gave him sooo much grief
over the years. :) It was a very sad day when he retired in June 1993.
I give a lot of credit to my plastic surgeon, Dr. Paul Tessier, a
pioneer surgeon in the world of craniofacial surgery. My medical care
has never really been the same even tho my last plastic surgeon was
great. It was just not the same for me.

Studying to be a medical doctor is a wonderful thing but don't forget
why you are a doctor.. To help those who are in need medically. Good
Luck with your studies! :) I am sure that you will make a great doctor!


1 comment:

Anonymous said...

Thank you for sharing your story, Kristi. You are an amazing person!