questions have been prepared by Donna Batdorff in response to those
asked by many students doing projects. Feel free to use them for your
school projects and research.
I did not learn I
had had it until after it was already gone. When I went to the hospital
it was because I was ill, but I did not know what I had. I lapsed
into unconsciousness, had had 5 surgeries, 10 days had passed before
I awoke and was told what had been wrong with me. My first reaction
upon learning was that I was very lucky to be alive because I had
heard of it before and thought that people always died from it. I
was told that I had almost died and I felt very lucky to be alive
in spite of all that I knew was ahead of me to deal with.
It was difficult to
know I had had something so rare. I asked myself why I had survived,
I asked myself the meaning, why I was so close to death but was spared.
I looked for improvement each day. it gave me a greater appreciation
of life and I never felt afflicted or sorry for myself. I just moved
forward and have grown a lot from it. It was difficult that I did
not find any info on it and that is why I posted my story on the Internet
and eventually began hearing from other people who had had it and
then eventually formed the NNFF. I remember in the beginning wondering
if I would ever laugh again. I felt like it was an ordeal that would
take a very long time to get over.
As far as physical...I
had parts of three fingers removed. (photo included) I learned to
adapt just fine...I had prosthetic fingers made that look beautiful.
It really causes me no problem at all. In the beginning there was
physical healing to do and it was a drag changing bandages every day
and having to care for my arm scars, but I always just tried to look
ahead to the future and know that it could only get better.
There is nothing whatsoever
that makes a person "more prone" to get this. Any age, sex,
race, nationality, any country, etc. We are all susceptible. Some
people such as diabetics and other with suppressed immune systems
are more prone to all infections, but I hesitate to say they are more
prone to this because it tends to let the general public think they
do not need to be concerned. Nothing could be further from the truth.
It is very often an otherwise very healthy person who gets this.
My family and friends
all knew before I did. They were there while I was being nursed back
to health before I woke up. They were all very very worried and I
think I was the lucky one not to have to go through what they went
through. They all thought I was going to die. People I informed afterwards
were shocked but because of my attitude probably took it better than
they would have it I were all sniveling and feeling sorry for myself.
My support from family
and friends was incredible and if I had not had that I would probably
not have done as well as I did with my recovery. For instance because
I live alone for the first two weeks I was out of the hospital a different
friend came and stayed overnight with me. Another friend brought me
lunches everyday and another friend brought me dinner every day. After
two weeks I was fine to be on my own at night with help during the
day when I asked for it. My friends were great and so was my job.
It was a drag having
to change bandages, go to the doctor, not be able to open things like
pill bottles doors, adjusting in the bathroom with EVERYTHING that
goes on in there from brushing teeth and flossing to hygiene; wondering
if my healing was going well...the pain in soaking my fingers three
times a day and going through the regimen of care for them.
My arm was all wrapped
and I had to keep it elevated, a friend developed a stand for me to
rest it on, but it was still a pain. And the places they took my skin
grafts from were very very painful. After everything else was well
on the way to recovery, the top of my thighs where they had "harvested"
the skin for grafting to my arm were bright red, scabbing, had minor
infection, very , very painful. I was sleeping with a "cage"
over them that we had cut out of a laundry basket, so that I would
not bump them during the night. There were therapists daily, nurses
daily, in a way all of the care was comforting, but there were definitely
parts of it that were a pain.
I had three doctors,
they were all wonderful. All three of them treated me as I was very
ill and clinging to life. There was an infectious disease doctor,
a surgeon who cut off the fingers, and a plastic surgeon who put me
back together again. My contact with the first one was minimal, the
second and third were part of the recovery process, The first one
saved my life in the first place! All of them made it a point though
to come see me awake and honestly had tears in their eyes as they
told me they did not expect me to live and what a joy it was to see
me up talking and know the person I am. They were very moved and affected
by my condition.
It was really "over"
as soon as I awakened, and yet the "scars" will me with
me for life. I am still affected only to the point that I am occasionally
frustrated with the fact that I can't do something as well as I used
to. Typing for instance, I used to type 100 words a minute without
looking at the keys because I could FEEL the keys. Now I still type
100 words a minute but I have to look at the keys and I make a LOT
of mistakes and spell check does not get them all...so I apologize
for that if you have already discovered this little problem. Generally
though it has not affected my life now that it is over. At this point
I don't even wear my prosthesis very often and am not at all worried
about the scarring on my arm.
Yes, I do have a different
outlook on the world. I realize we are all the same. It makes me look
at handicapped people differently (more compassionately, but also
realizing they are the same as everyone else.) it makes me realize
that most of the stuff people get upset or worried about is just not
that big a deal.
I've always been a
healthy eater. But this infection has nothing to do with eating. The
bacteria comes from other people, not food. Eating has no affect on
Donna In the Hospital ......January
30-February 19, 1996
on the arm...most of the soft tissue had to be cut away, but no muscle
Donna all happy and healthy after NF