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| Carole (2008) |
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| Carole |
When I was young I couldn't keep up with anybody. I could walk barely two blocks before having to ask my dad to pick me up. When I was seven I had an aortic pulmonary anastomosis (shunt) at Children's Memorial Hospital in Chicago by Dr. Willis Potts. The difference was phenomenal in that I now had stamina and could keep up with everyone. I could really run and play with my friends now. Even though I still got tired more quickly than most others I was taking regular gym classes at school.
In 1963 I had a cardiac cath in preparation for the second surgery. September 8, 1965 is the day that Dr. Thomas Baffes gave me my life back. I wish he were here now. I was on digitalis for two years and was again taking regular gym classes. After high school I worked for a while, did 2 years at junior college, worked some more and then earned a bachelors degree in Management at Roosevelt University in Chicago. I was married for 20 years and have been divorced for 8 years. I have three beautiful daughters who are healthy and lively and are now 15, 19, and 24 years old. Just this June I had cosmetic surgery to modify the scar (which goes across my chest). I'm still doing okay but I always have some anxiety over if I have any chance for a much longer life. I live alone and I get really scared sometimes. I have been searching various web sites to see if there is some sort of benchmark to compare myself with but more and more I find there is none and that I may be that benchmark. I would love to hear from people about anything to do with our shared conditions.
November 2005 Update
A couple of years ago I had been looking in to the
possibility of having some elective surgery. As a preliminary, I
decided to check with my cardiologist who told me I was too high
of a risk for general anesthesia. He also said that he wouldn't
want me put on a respirator because with the pulmonary
hypertension he is afraid that I would have a difficult time
getting off the respirator. With that in mind I gave up on the
idea of the surgery. Fast forward to May of this year. I was in
the office of the Ear, Nose and Throat doctor who was helping me
deal with the paralyzed vocal cord. I was telling him of my
history and when I mentioned that I was brought to believe that
pulmonary hypertension was untreatable he told me that is not
true anymore. He told me of a Dr. Stuart Rich at the University
of Chicago Hospital who was working on that. I e-mailed him and
after a few weeks received a reply. He said he needed to see my
medical records before he could decide if he might be able to
help me.
While all this was going on I had a new echo in the beginning of
June and a few weeks later I received a letter from my
cardiologist that said the head of their echo lab reviewed it
and thought that they might be able to put in a new patch to
plug the leak in the old one (I am now 40 years post-op). He
said I should see a specific interventional cardiologist. I saw
him in August and he told me that traditionally with tetralogy
that the VSD is very high up so that going in with the catheter
method might get in the way of the operation of the valve, so he
needed some tests for analysis. He wanted a new transesophageal
echo (TEE). I had that done in early September. A few weeks
later I got a call from his nurse who said the next step would
be to get a new angiogram. I made arrangements for that and
while waiting for that date to come up I received a call from
Dr. Rich's nurse to schedule an appointment. I set that for
November 17. Immediately upon completion of the angiogram that
doctor told me that there were no artery blockages and the leak
around the patch was small (his exact word). On November 17,
armed with the most recent chest x-ray and DVDs of the echo, TEE
and angiogram I went to see Dr. Rich. He reviewed those items
and came in the examining room and we talked a while. He then
listened to my heart and lungs and we talked some more. He then
asked me why I thought I had pulmonary hypertension and I told
him that this had been drilled in to me by several doctors over
the decades. Then, he looks me straight in the face and says
"You don't have pulmonary hypertension". He said the doctors
were misinterpreting the data. The higher reading in the
pulmonary arteries was due to the leak in the pulmonary valve,
which they didn't know how to fix back in the 1960s.
It was wonderful to now not have that to worry about but it's
also aggravating that I had to worry all those years because of
an ongoing misinterpretation of the data.
Everybody is somebody else's weirdo. Today is the tomorrow
that you worried about yesterday.
December 2007 Update
On August 7, I woke up in the middle of the night with excruciating pain in my lower right back. After several hours of agony I called the paramedics who took me to Glenbrook Hospital in Glenview, Illinois (10 minutes from my house). It was discovered that I had several gall stones and my white cell count was double what it should be. They did an x-ray, MRI, blood and urine work up and other tests. When it got to be afternoon they admitted me to the hospital and loaded me up on antibiotics. My cardiologist, Dr. Alfredo Gonzalez, visited me a few times and said that if I need surgery, I need surgery.
My primary doctor called in a surgeon, Dr. Richard Berk, to consult and do the surgery, if needed. On the fifth day they put a drain in my side that went directly in to the gall bladder to drain excess bile fluid. There were stones blocking one of the bile ducts. They were hoping that this would dislodge the stones and they would be able to avoid doing surgery because of my heart history. I was discharged on the eighth day with the drain in place and a collection bag that I had to live with. Every few weeks they would do a test with a dye to see if the stones had moved and if the gallbladder was draining properly. By the time it got to November they agreed that the gall bladder had to come out. I visited my primary care doctor and my cardiologist for clearance for the surgery and they both said I would be okay.
On November 30 I went in and they did the surgery first thing in the morning. The surgery was done laparoscopically and I was awake by 10AM. I had an IV going, a direct blood line and a catheter in the urethra. Due to my history I was put in the ICU for one day for closer monitoring. On the second day they took out the catheter and moved me to a regular room. Every one was wonderful and I even had a little eye candy to see (cute male nurse). I was in that room for two days, mostly to get my white cell count back down, and was discharged with a walker to help me get around but I only wound up using it for two days. I'm feeling much better now and it is sheer joy and a relief to finally be rid of that damn drain. I saw the surgeon on December 11 and he said that there were several stones and some were as large as 3 centimeters. The gallbladder itself was severely infected and was swollen and white. He also instructed me that I must maintain a real low fat diet for the first six weeks from the surgery but after that I can go back to pretty much of my regular diet.
Feeling better each week and back to my regular routine.
