Update 01, March 20, 2006 NEXT
I've compiled an email distribution list of folks that Lisa and/or I have spoken to about my condition, amyloidosis. This is my first broadcast to those of you 'in the loop'. I can't tell you how much your concern, support, prayers and love mean to me. I really do feel it and I deeply thank you for it. Any reciprocal contact will always be welcome and we can have a more personal dialog if you wish. You may have spoken to others that I don't know about. That's OK but I would like to know who they are, if that's alright with you, and I could add them to this list. I want you all to know that I am trying my best to keep a positive, optimistic outlook and I'm generally going about my daily routines normally albeit at times in slow motion. All that being said, here's the latest.
On February 17, I had a subcutaneous abdominal fat aspiration biopsy, which turned out to be positive confirming the previous diagnoses based on the echocardiogram and MRI results. No surprise. Up until last Wednesday, March 8, treatment has been limited to 81 mg ASA/day (as a precautionary blood thinner to help prevent the possibility of stroke) and 40 mg/day Furosimide (Lasix - a diuretic) for edema of the feet/ankles. My appointment with Dr. Michael Connelly at the Peter Lougheed Centre last week was positive with regard to my cardiac condition. He prescribed Candesartan (16 mg/day) which blocks the action of certain chemicals that tighten the blood vessels, so blood flows more smoothly, and Bisoprolol, (2.5 mg/day), a beta blocker, which works by slowing the heart rate and relaxing the blood vessels so the heart does not have to pump as hard. Both are also typically used to treat high blood pressure, which in my case has fortunately never been an issue. So, my treatment at this time is solely for the cardiac symptoms.
I asked Dr. Connelly to investigate where research is being done for the treatment of amyloidosis per se and for a referral to someone local, likely a hematologist, who is an authority on the condition. He introduced me to a nurse who is running the Cardiac Function Clinic at the PLC. She is marginally aware of another case being treated at the Foothills Hospital at this time. I will expect more info when I see her next Tuesday at which time we'll be going over the results of blood work I'll be having done this morning. She has assured me that I'm in good hands.
Two other health issues, likely brought on by one of the other symptoms of amyloidosis, swollen tongue, have been resolved or are in the process. I was diagnosed with OSA, Obstructive Sleep Apnea, in December and at the end of January I acquired a C-Pap machine. (Continuous Positive Air Pressure). So, happily I no longer snore! And I also breathe a lot better asleep and the sleep I am getting is a lot more restful although I still wake up several times overnight. Oxygen - go figure. It's a good thing. The other thing is my lower molars. They had been migrating outward over the course of the last couple years to the point where they were non-functional. About a year ago I was started in the process of having a partial lower denture made. The results were totally unsatisfactory and after fighting with the mis-fit of the thing I stopped wearing it in September. I saw an oral surgeon in December and he recommended the extraction of the 3 useless teeth. He speculated at this time that the amyloid affected tongue was the likely cause. I had the teeth removed January 30. There was a complication on one side which is finally nearly resolved. A tiny but sharp and jagged bit of bone was sticking out and scratching my tongue to shit. Two attempts by my dentist were unsuccessful so I saw the oral surgeon who smoothed it down properly. Bone takes time to heal, I guess, so I have some painkillers and an antibiotic as a safeguard in the case of a possible underlying infection. So, I am on the path to find out whether I'm a candidate for dental implants. If that can't work out for whatever reason, I'll be going with another attempt at a good denture fit. I am SO tired of having to chew with my front teeth only!