Second PET Scan Results on May 26 are Good
I started this journey with IGCM in late January the day after a PET Scan. At that early PET Scan I was told there was a suspicious area on the posterior area of my heart. The next day I was on my way to the hospital in an ambulance, with a pacemaker installed later that day. They wouldn't diagnose me with IGCM until February 14, a couple weeks later.
On May 26 I had a second PET scan (on order from Dr. Sorescu, Dr. Smith's associate). A PET scan takes up to 90 minutes to complete, so I had to lie inside a large donut-shaped imaging device that would pick up the radioactivity of the chemical dye they injected into my arm vein. Dr. Patterson, the attending physician, showed me the color images of that day's scan and the image from Jan 26 side by side. The areas of orange and yellow (places deemed suspicious) were significantly less and smaller. Dr. Patterson said there was a good improvement from then to now. His report stated: "Probably normal PET perfusion scan: no evidence of infarction and doubt myocardial ischemia. Marked improvement, compared to the prior study of 1/26/2006, when the ischemic region was 13% LV, and the LV ejection fraction was 0.40 - 0.49. Today: Normal ejection fraction of 0.55-0.65 (estimated) [and] The substantially reversible defecct in the apical and mid-ventricular regions of the inferior-septal wall is so small (< 5% LV) that it is not likely due to myocardial ischemial or infarction. NORMAL wall motion in the defect region."
To those who don't speak medicalese, it means that the suspicious area is down from 13% to 5%, and may be an artifact rather than a real problem; My Left Ventricle pumping strength has increased from an estimated 0.40 - 0.49 up to a "normal" range of 0.55 - 0.59 ( the percent of blood in the ventricles that is pumped out of the heart during each ventricular compression).
Even Dr. Smith sent me a brief email afterwards, and stated: "your PET scan was markedly better "almost normal" ."
I am even more optimistic now than before. In fact, I have to be careful not to assume I'm back to normal. I'm still taking 20 mg of steroids (prednisone), 2 grams of immunosuppressant, 50 mg of beta-blocker, and 20 mg of antiarrythmic drugs daily (not to mention lots of others for side effects and issues, like water retention). But overall I'm feeling more normal now than I have since January. It feels good to think I may be looking at a more positive future without the need for a heart transplant, and that I can get back into a more regular lifestyle. I'm still limited in how much "output" I can expect from my heart, so walking fast or exercise like aerobic contra dance is still out, but I can feel the urge to move more and want to do something about it. The drugs bring me back to reality whenever I stand up and get dizzy, but I'm learning to prepare for that and pause upon getting vertical.
Now it's time to begin planning a stronger heart and better capacity for moving. And, of course, keeping the gains I have made. No backsliding!
Next report in about a week after a NIPS study and checkups with the Coumadin Clinic and doctors this coming week.
Take care of your health as well...
On May 26 I had a second PET scan (on order from Dr. Sorescu, Dr. Smith's associate). A PET scan takes up to 90 minutes to complete, so I had to lie inside a large donut-shaped imaging device that would pick up the radioactivity of the chemical dye they injected into my arm vein. Dr. Patterson, the attending physician, showed me the color images of that day's scan and the image from Jan 26 side by side. The areas of orange and yellow (places deemed suspicious) were significantly less and smaller. Dr. Patterson said there was a good improvement from then to now. His report stated: "Probably normal PET perfusion scan: no evidence of infarction and doubt myocardial ischemia. Marked improvement, compared to the prior study of 1/26/2006, when the ischemic region was 13% LV, and the LV ejection fraction was 0.40 - 0.49. Today: Normal ejection fraction of 0.55-0.65 (estimated) [and] The substantially reversible defecct in the apical and mid-ventricular regions of the inferior-septal wall is so small (< 5% LV) that it is not likely due to myocardial ischemial or infarction. NORMAL wall motion in the defect region."
To those who don't speak medicalese, it means that the suspicious area is down from 13% to 5%, and may be an artifact rather than a real problem; My Left Ventricle pumping strength has increased from an estimated 0.40 - 0.49 up to a "normal" range of 0.55 - 0.59 ( the percent of blood in the ventricles that is pumped out of the heart during each ventricular compression).
Even Dr. Smith sent me a brief email afterwards, and stated: "your PET scan was markedly better "almost normal" ."
I am even more optimistic now than before. In fact, I have to be careful not to assume I'm back to normal. I'm still taking 20 mg of steroids (prednisone), 2 grams of immunosuppressant, 50 mg of beta-blocker, and 20 mg of antiarrythmic drugs daily (not to mention lots of others for side effects and issues, like water retention). But overall I'm feeling more normal now than I have since January. It feels good to think I may be looking at a more positive future without the need for a heart transplant, and that I can get back into a more regular lifestyle. I'm still limited in how much "output" I can expect from my heart, so walking fast or exercise like aerobic contra dance is still out, but I can feel the urge to move more and want to do something about it. The drugs bring me back to reality whenever I stand up and get dizzy, but I'm learning to prepare for that and pause upon getting vertical.
Now it's time to begin planning a stronger heart and better capacity for moving. And, of course, keeping the gains I have made. No backsliding!
Next report in about a week after a NIPS study and checkups with the Coumadin Clinic and doctors this coming week.
Take care of your health as well...
posted by JayVS | 7:04 AM
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