Update 29, April 19, 2008 LAST NEXT
It's been almost exactly two years since I met Dr Bahlis and was put on the program. Since my last update, four months have passed and I continue to get a bit stronger. Due to my heart keeping sinus rhythm for this period I've been allowed, again, to stop taking Warfarin. So, since this past Wednesday, I am back on 81 mg ASA daily instead. Over the course of this time my dosage of Amiodarone has been titrated from 200 mg per day to 100 mg to my present dosage of 100 mg every other day. I have also been allowed to take the 2.5 mg Zaroxylin on a discretionary basis. That is, when symptoms are present indicating a sodium OD. I weigh myself every morning and am trying to keep it from getting out of hand. I am not about to deny myself one of the fundamentals of life's pleasures, that is, the taste of good food! I must still take the rotgut potassium supplement, though, and sleep continues to be a problem so I am still on the Zopiclone. at bedtime. I ceased using the CPAP quite a while ago as it just wasn't doing it for me and was very uncomfortable.
I had painful, swollen glands in my throat in mid-February with a bit of a cough so, to be prudent, Dr Bahlis prescribed an ultrasound of my throat which turned up nothing awry and was referred to Dr Matthews, a Nose, Ear & Throat specialist, who also found nothing but my swollen tongue which he took a few few digital photos of. It hasn't gotten worse but it hasn't gotten noticeably better. After several days this (likely) virus infection cleared itself up. My new immune system continues to perform very well.
The overall life experience of the early symptoms of Amyloidosis, its diagnosis, treatment and recovery have taken their toll on my psychological and emotional well-being. I first pointed this out to Dr Bahlis as far back as December, 2006. I had a major meltdown in February so I finally decided to explore what could be done. I have seen a social worker at the Peter Lougheed Centre twice for assessment. I informed Dr Bahlis of this and he suggested that I temporarily stop taking Thalidomide telling me that it can, in some patients, have an adverse effect on the psyche. It seems to be working so far. I've been off Thalidomide since March 26. Issues remain but if feel that I am handling them better. I see him again on May 7 with the attendant bloodwork the results of which, in the case of the free light chain levels, I will know the next time that I see him, likely in early June.
I will be having a complete blood chemistry next week then I will visit Dr Kryski on May 2. I expect an appointment soon for a cardiac MRI in June.
I attended another CASN meeting this past Thursday, April 17, where I met Gary, a new Amy patient and his wife, Lynn. We expect he will do very well with the Apheresis/high-dose chemo/blood stem transplant as it has been caught in its very early stages. God's speed, Gary! It was also discussed that a segment for the local CTV station's Medical Watch program may be produced in the near future. Stay tuned for that.
That's it for now.