Update 22, November 14, 2006 LAST NEXT
After previously having been diagnosed with Atrial Fibrillation, one year ago today, Dr Nanji, at the C-era Cardiac Diagnostic Clinic here in Calgary, informed me of the results of the electrocardiogram from one week prior. There was another physician with him who confirmed the results which were positive for a condition called Amyloidosis. The ultrasound revealed protein fibrils which had 'infiltrated' the wall of my heart causing it to stiffen. He told me there was no known cause or cure, that other major organs of the body could also be affected and the only option available was to 'treat the symptoms'. He referred me to Dr Michael Connelly, a cardiologist at the Peter Lougheed Centre saying that he would be able to answer all my questions. When I got home I Googled Amyloidosis and the very first link I clicked on had a photo of a man with the same red wine coloured spots on his face that I had on mine. I looked at it and I thought 'that's me'. Then I read the symptoms. And the typical prognosis upon diagnosis - three months to a year and a half.
Despite the obvious mental/emotional trauma I pushed forward with getting and keeping myself informed. It was over a month until I saw Dr Connelly When I did finally see him, on January 16, 2006, an apparent inter-office snafu had transpired so he didn't even know why I was there. By this time I think I knew more about Amyloidosis than he did. He wouldn't concede that the diagnosis was correct so, for my heart condition, he prescribed Furosimide to reduce the edema around my ankles and also an abdominal cutaneous fat pad biopsy. That didn't happen until February 17 with Dr Jadusingh. I didn't see Dr Connelly until March 8 when I was given the positive test results . Nearly three months since initial diagnosis! Luckily for me, on the same day, I was introduced to an RN, Leslie Reed, who was overseeing the establishment of the new Cardiac Function Clinic at the PLC and would be my liaison with Dr Connelly. That was when she told me she had heard about a patient at The Tom Baker Cancer Centre with cardiac amyloidosis who was being treated by Dr Bahlis and Dr Kryski You know the rest from my previous updates. There was hope.
The fact that these pages might be viewed by people either suffering or knowing someone with this disease or at least its symptoms is why I have rehashed this story. Hopefully it will be of some benefit.
Here's an actual update. On October 31, my CVC line was removed by Dr Zacharias at the BMT Clinic. Quite the little operation. Now, two weeks later, the site has healed very well and it sure feels great to not be a 'Borg' anymore! My veins have been poked a few times in that period and I'm expecting a few more. I have appointments with Dr Bahlis tomorrow, Leslie Reed on Thursday and a Cardiac MRI is booked for Friday, November 17. I'll be seeing Dr Kryski on December 5.
With the edema in my ankles/feet nearly gone my daily dosage of Lasix has been reduced to 80 mg from 120. We'll see where that goes. The rest of me has been so dry!
There will be more to come, as