- Aortic aneurysm
- Interviews
Danielle Fiene's interview
How did all start?
I went for a flu shot and intended to ask for a colonoscopy script with my Primary Care (PC) doctor. The doctor and I had been having discussions about the colonoscopy for over 4 years--some that were rather heated. When I asked for the script, my PC questioned why I had a sudden change of heart. I explained that for several weeks, I had been experiencing a sharp pain in my lower left abdomen that would shoot into my left leg--and just as quickly disappear. The pain was not unbearable--but strong enough to make me take notice. My PC suggested an in-office ultra sound. I agreed--and was making wise cracks about what he might find since my last ultra sound was when my 29 year old son was still in utero. My doctor was not smiling--and became very pale and began to sweat. He called in his nurse and told her to get a wheel chair and to get me downstairs to the emergency care for an immediate CAT Scan. No further explanation was given--so I went to the ER and there argued with the ER doc about not having the CAT Scan with infusion. I am highly allergic to the dye and had not been pre-medicated with predisone. He was not happy--and called up to my primary care to say I was not cooperating and to ask why the urgency? My PC explained that he had detected a 5.7cm Thoraco-Abdominal Aortic Aneurysm. I was given the CAT scan without infusion--and the results showed that the aneurysm needed immediate surgery. The ER doc came in and asked where I wanted to go for surgery. I was not aware of the dire consequences of this condition--but became acutely aware of the worry from all of the medical professionals. I was sent to a Trauma 4 hospital about 20 miles away and was met in the ambulance bay by a team of doctors and nurses. After being stabilized in the STICU--I underwent every test possible to determine my worthiness for the surgery. Because of the size and location of the aneurysm, I was told I would need to have an open procedure. I was released from the hospital after a week, sent home to wait for the phone call that the custom fenestrated graft had been manufactured and that surgery was imminent. I had an open procedure on 12-18-2018--replacing the damaged area from just below the left ventricle, through the SMA, lungs, iliacs and both renals.
Do you already have a diagnosis? How long did it take you to get it?
Diagnosis was within 2 hours of the initial ultra sound in my PC's office.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I was treated by a team of surgeons--a cardio vascular surgeon, a thoracic surgeon and cardio thoracic surgeon. I have also been under the care of a chiropractor, a pulmonologist and cardiologist. The most useful specialties have been the chiropractor and the pulmonologist.
What has been the most useful thing for you so far?
Beign my own advocate when I did not feel I was healing as I should. Advocating for an additinal CAT Scan within 6 months of the surgery to discover any comorbidities--and there were several.
What have been your biggest difficulties?
Accepting that I survived this disease--why me?
How has your social and family environment reacted? Have your social or family relationships changed?
My family was frightened and empathetic. They still worry that something else will occur--because this was my one and hopefully ONLY surgery. I was a fairly healthy 60 year old with no previous symptoms--but found out that I had a familial connection.
What things have you stopped doing?
No heavy lifting or workouts...and I have stopped worrying about what might come. I lived through this--and I hope to have a long life yet.
What do you think about the future?
I'm not afraid--I want a higher purpose though!
Finally, what advice would you give to a person in a similar situation?
Keep up with your appointments--and if you're not feeling well, insist on additional testing. No one knows your body or your pain tolerance better than you! If your doctor is dismissive--find another one. Most surgeons and doctors have not had this experience personally--so if they are not understanding, you need to move on.
