How old are we?
Hi Sarc Gang!
I hope that you all had a nice and restful Labor Day. Now it's back
to school, work and into the Fall! Oh My.
I've been wondering about all of 'us'. It's interesting to read about
where our families are from, background, etc., but I'm wondering
about some other stuff also. We all have at least one HUGE 'thing' in
common with eachother...Sarcoidosis. But do we have any other common
threads as they relate to Sarcoid? Like, how old are we now and how
old were we when we first learned we had Sarcoid? How many of us
are male and how many of us are female? What part of the world do we
live in, etc. Since I am new to this group, I don't know if this info
has already been given, sorry if it has, but I think it would be
interesting to compare notes. I'll start.
I am a female.
I am 53 (yikes) years old.
I was 53 when I recieved my diagnosis.
My sarc is in my lungs & lymph nodes.
I am caucasian.
I live in the north east, U.S....CT
I did not go to the Dr. with symptoms of sarc, it was discovered
through abdominal x-rays, in which, they could see the bottom of my
lungs.
I don't know anyone else with sarc...only YOU!
I hope this is not too personal for some of you. This Sarcoidosis
stuff is so new to me and I find that I have many questions.
I hope where you are, it is sunny, warm and wonderful...it's a little
cold and wet here in CT.
My best to you,
Sooey
I'm 52, female, and Caucasian. I have lived in central Indiana my entire life. I fit into the European descendants category---red hair(before it turned white), fair complexion with freckles, always burning but never tanning.
I was diagnosed after a bronchoscopy in Nov. 96, but I'd been getting treatment for 4 years for floaters without any diagnosis for that. That has led to some major complications through the years, including sudden cardiac death due to cardiac sarcoid(lucky for me I was in the hospital at the time--it took half an hour to get me back & I now have a combo pacemaker/defibrillator. This event left me disabled. I have my ups and downs with my lungs, but they are much better than back in 97. I developed a huge sarcoid nodule in one eyelid*the size of my thumb) that had to be removed.
Yes, it's interesting to read who such a diverse group of people can come together over such a confounding disease. It's sure not a one-size-fits-all diagnosis or treatment.
Kay
First my pedigree and then a question for Kay ....
I am 69 years old and I was diagnosed in 1975 when
somethings in my lungs showed up on a routine chest
xray. The spots were not there on an xray taken in 1965.
So I have had sarcoidosis for at least 28 (and maybe up
to 38) years. I have the problems with my lungs - my
breathing tests are in the lower 70%'s. I also have many
lumps, mostly in the chest area. I am short of breath
if I do much physical, but I feel good all the time. I am
never sick because of the sarcoidosis. I also have
high blood pressure that is kept under control by
medication - have been on meds for a long time. I
allso have peripheral neuropathy - my feet and legs
are numb all the time. Sometimes other areas, too.
I take Amitryptelene to get rid of the pain and it works
great for me. Lately (although it has been for a few
years) I am having problems with my legs and feet
swelling from excess fluid. I just completed a series
of tests and nothing appears to be causing it - my heart
and veins, etc. all look okay. I take fluid pills daily and
the doctor wants me to switch to a heavier compression
stocking. All in all, I am in good shape for the shape I'm
in. :^)
I was born in Iowa and moved to Minnesota in 1962 to
work and I stayed. My grandparents (all 4 of them)
came from Czechoslavakia so that makes me 100%
Czech. I have known a couple of other people with
sarcoidosis but have never had a chance to discuss
it with them. One of them was one of my kids grade
school teachers and all I know is that she had to take
a year off from teaching because of her illness. The
other is a friend of my son-in-law and I did not know
that he had sarcoidosis when I met him. They told me
later and I haven't seen him since.
My wife and I have 3 "kids" that are 37, 34, and 31.
We lost our first child at age 10 months and we
almost lost our "baby" when she was 17.
Now for Kay - I am wondering what kind of
pacemaker/defibrillator you have. I live in Minneapolis
where a good share of them are made. Medtronic
is a local company and we own property right adjacent
to them. Also 2 of my kids work for Guidant which is
probably the second largest manufacturer of those
kind of devices. And finally St. Jude Medical is only
a few miles away but I don't know much about them.
So I am just curious.
Don Elias
On Wed, 3 Sep 2003 11:41:48 -0700 (PDT) Kay Pullen <nkpullen@...