I was born over 8 pounds, full term BUT what no one knew was I had a PDA.
When I was 5 yrs old my parents asked the Doctor why I would hold my chest
when I ran around, she told them I was a faking, just ignore me, I just wanted attention.
I was a tomboy, hung by my knees in our cherry tree every day I could. Loved to play in the barn.
At age 16 I was babysitting when I had a chest pain I still remember, I had to pull
myself across the carpet to get to the phone and pull it off the counter.
My parents took me to ER a couple hours later, we were told I was constipated.
I went through HS in 3 yrs and worked part time as a nurse aid as I had my plans made to become a nurse and work on a Indian Reservation. The staff at the hospital would find me passed out on the floor, they'd help me up, dust me off and tell me I was doing to much...remember this was mid-1950's they still believed in "vapors".
I moved to Indianapolis to enter training at Methodist Hospital, best teaching hospital, and since I would be in remote areas I wanted as much experience as I could get.
I planned to work on the floor as a nurse aide for 4 months until the next class started, I only made it two days. Worked on the floor one day and then the next day I reported for my physical and that changed my life forever.
I had the 8th experimental surgery to correct a patent ductus arteriosis. They had only been trying on little babies and they died within two years after surgery. In fact they had a baby 18 months old in a glass cube and were going to keep her there until she was 3 when they thought she'd be big enough to make it through the surgery.
They went through my back, took out my lung during surgery and removed a few ribs, basically primitive surgery compared today.
I had so many Doctors from all over Indiana come to listen to my defect. I had the surgery, laid in the hospital for 5 weeks with no support as I was 150 miles from home and in the 50's that was quite a trip. When I left the hospital, the Doctors told me a few things.....NO, I couldn't enter training because they didn't know if I would live 3 yrs. OH,yeah they also told me not to have children because I probably wouldn't live beyond 40. BUT go have a good life I could do anything anyone else could. What a confusing send off. I had three childrens and I'm pushing 79.
I've had nothing but problems all my life and i've always felt it's because my body developed WITH the defect everything in my body has never worked quite right. I've had so many illnesses and surgeries, I'm worn out at 78.
Only a couple Doctors understood my body development was not usual but mostly I've been told I'm crazy....you know when Drs. can't find your problem ...it's your problem not their's. I just went through 3 yrs of being told there was nothing wrong, the pain on my left side was all in my head. I've had huge cyst on my kidneys for years and I asked and then begged to have the left one 7mm drained and the Dr. said it won't do any good but I'll order it.
On May 3rd I had the cyst drained and for two days I felt wonderful, a bit sore but it felt so good to feel empty and no constant jabbing pain. Then 48 hours after the procedure, the misery began...for the next 22 days I had episodes of sweating, shaking, nausea and diarrehia around the clock...I would get a few hours (3 at most) of relief but still it came back.
ER told me there was nothing wrong, IV ativan did nothing to stop it, told me to see my PA who told me I had the flu...finally on the 17th day I went to ER in desperation and a Dr. that knew me told me he thought my entire nervous system was out of whack and gave me a shot of dilaudid and that helped for a couple hours. The next day my PA wrote and said she had no idea what to do and asked if I had any ideas and ended with have a good weekend.
The next day I slashed my wrist (the wrong way I later found out) and although there was blood all over the bathroom, and I was covered with blood lying in the tub....I woke up 8 hours later and was furious. Got up put pj's, robe and a shawl on after cutting my wrist again only this time I was going to walk. I tried running down the sidewalk (2AM) but went down in a heap a block from home and laid there 3 hours until a homeless guy called for help.
Of course I was 51-50'd and now next Tuesday I'm having the right cyst drained and for the first time in my life I'm admitting I'm terrified, not of the procedure but what comes afterwards and having no one help me through it once again.
I've seen my nuerologist and he's on board and I'm trusting him not to leave me twisting in the wind for weeks as I was before.
I just wished someone had explained to me how my developement was totally screwed up from day one. My kids have been told so many times, that I was dying in minutes that the last time, my daughter asked the dr. "Did you ask MOM?"
I wasn't depressed when I cut, I was furious and every cut had a Doctors name on it, and as luck would have it, the Doctor who had treated me the worse in ER was the one who cobbled up my cuts, making sure I had big scars. Yes, I'm seeing a therapist and I'm doing fine cooking and baking and sharing all of it with neighbors, I'm creating a lovely garden...I'm ok.
Only two of my family talk to me, the rest believe the Doctors that I've brought all this on myself. That's 11 surgeries, 7 bowels obstruction, sepsis twice, C-diff twice, puemonia twice, prinzmetal angina, chf, exhaustion to the point a Dr. kept me asleep for a week in the hospital, and I've had every test I think known to man. I've had so much radiation I'm my own night light. But yet they believe I caused this because I'm mad as a hatter. I just wonder why in the world my body refuses to give up ...as soon as I feel even a bit better my brain starts thinking of all my projects and I get back to them.
I'm glad by surviving the experimental surgery children were saved soon after birth, just like the 18 month old baby in the glass cube, they did my surgery one day and hers the next and she survived beautifully, went home in 2 weeks. But I sure wish someone would've understood that what I've been through and continue to go through is most likely the result of my body developing with a defect.
But that won't happen, so I'm going to go build a teepee for my morning glories this morning. Judith Larrew