TALK TO A
Established April 15, 1995
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My sister Sandy and I as little girls, and as adults when she was visiting me in CO. Sandy is wearing the dark shirt.
I am a retired educator, having taught thirty-seven years in the public school system. I was born and raised in the Philadelphia, PA area but moved to Colorado in 1974 and have been here ever since. This is a picture of my sister and I taken three years ago when she and her family were visiting me in Colorado. I am the one in the white shirt.
24 July 2004
My sister died on April 16th, 2003. It has been over a year and the pain of her loss still devastates me, but the anger and frustration I feel just grows.
I believe my sister died due to medical ignorance. Sadly, three years previous, a first cousin died. His autopsy revealed an ascending aortic dissection. This is also what killed my sister.
Both had symptoms that were ignored. Nausea, vomiting, lower back pain shooting down the leg, headache, extreme fatigue. My sister even had the information to share in the ER that our mother had died of an aortic aneurysm. However, it did no good. She was in the ER from 6:00 AM until 4:00 PM. They did an EKG and an enema. At 4 PM a doctor felt she was not looking good, admitted her to the hospital, and ordered (FINALLY) a CT scan. My sister died mid-sentence at 6:30 PM. She had not yet been scanned.
This story however did not begin with my cousin's or my sister's death. It began way back in 1971 when my mother died of an aortic aneurysm. No one told me or my sister that aortic aneurysms could be familial. Interestingly, in 1983 yet another relative, this one on my father's side, had an asending aortic aneurysm. She was "lucky" that where she was taken they found her aneurysm, got her to another hospital where the surgery was successfully performed. She lived another fifteen years before she died of stomach cancer at age 76. My cousin was only 51 and in otherwise good health. My sister was 60.
When my Aunt survived her aneurysm, I remember thinking "if only they had had these tests and this surgery when my mother's aneurysm ruptured". And yet years after my Aunt's successful surgery, with more advanced tests available, with the knowledge of a familial component out there, still my cousin and sister are dead.
I have been diagnosed with a mildly dilated aorta (4.1cm at the arch). With the history of aortic aneurysm on both sides of my family, it is no surprise to me. Now all I have to wonder is "will I be lucky" to be at the right place at the right time. It just seems unfair to me that people with aortic disease have to depend on being lucky!
Update: 17 April 2005
I will probably be having surgery to repair my aortic aneurysm in about three weeks.
I finally got to see the surgeon I wanted to see. It took over a year. He is considered the expert in our area for surgeries involving the aortic root and the ascending aorta. Due to surgery of his own, I was unable to see him until now. Anyway, when he saw my most recent scan and got my family history, I could tell he was stunned. Before his partner just looked at the radiologist report and said not much more than "no change...good-bye." Anyway, after I explained about my sister and my cousin and my aunt and my mother, he decided it was just insane for me to wait. He also said my aneurysm was 4.5, not 4.0 which is what I was told before. But he is consulting with doctors at the Cleveland Clinic to determine whether they need to see me there or if he should just do it here. I see him in two weeks to determine where and when.
I am a bit overwhelmed, and in some ways relieved. I know you and many others have had the surgery and are doing well. This surgeon feels I am in good health and I should recover well. However, there is a lot of anxiety involved here. Any suggestions of things I should or shouldn't do for the next few weeks. I know in my heart this is the right thing for me. Short of the aneurysm disappearing on its own in some magical, miraculous way, I understand the only solution is to put my life literally in the hands of the surgeon.
Any words of wisdom, encouragement and humor would be appreciated.
Update: 6 May 2005
I now have the date for my surgery. It will be Wednesday, May 11th.
Update: 17 May 2005
I made it OK and I want to thank all of you at the site for your support and caring. I just got home from the hospital to today and when I am up to it I will write more. Suffice it to say, your prayers and kind, supportive thoughts and words have been a Godsend. Thank you.
Update: 28 May 2005
First, I want to say thank you to all of my friends at this site for your kind, supportive and encouraging e-mails. Just knowing others have already successfully walked this walk and remained upbeat, positive and strong was the best medicine for me.
It has been two weeks and two days since my surgery. Today I walked about three miles. Two this morning and one this afternoon. I go slow but feel good about doing it. I started on Tuesday, May 17, with just a walk around the block, and have slowly progressed.
I am off all pain killers except for the occasional Advil for muscle pain in my shoulders and back. And finally I have been able to sleep better. I think one of the hardest things was the inability to sleep for the first ten days after surgery. I had adverse reactions to all of the pain -killers. Instead of making me drowsy, they made me hyper and shaky and gave me headaches. I gave up on them and opted for either Tylenol or Advil after I got home from the hospital.
My wonderful surgeon, Dr. Bryan Mahan, told me he was pleased that he did not have to remove as much of the ascending aorta as he thought. His original assessment was to remove the entire ascending aorta but when he got in there he saw that the aorta above the aneurysm was healthy tissue. Consequently I did not have to go through the brain "freeze".
I woke up about a half-hour before they removed the respirator. That was one of the worst parts for me. And my nose itched from the tape holding the nasal tube. I had a heck of a time communicating to those around me that I needed my nose scratched. It was a relief to have the respirator out but one of the first things I did was throw up from the morphine and anesthesia. So I got off the morphine fairly quickly.
Twenty-four hours after the surgery they moved me out of Cardiac Intensive Care to the regular Cardiac Care floor. I walked from the old room to my new room. And that night I ate a dinner. Nothing curbs my appetite!
I believe all has gone pretty normally for me, and I feel I am doing well. I am still overwhelmed and at times frustrated by the tiredness I feel. Everyone reminds me that I need to be patient, that I am not 30 years old and healing takes time. So at 59 years young, I am trying to be more patient with myself.
I am glad I chose to do this. I know that a few months from now when the pain, the soreness and the fatigue are all memories, I will be sure this was the absolute best decision for me.
Again thank you all so much for your support. Couldn't have done it without this site and the many wonderful people here.
Discussion, comments, or questions: Judith J. Cardamone
© Copyright 2004 Judith J.
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