On Wednesday afternoon (April 26) I finally had a consultation with Calgary’s amyloidosis expert, Dr. Nazir Bahlis, an oncologist at the Tom Baker Cancer Clinic, Foothills Hospital, Calgary. Lisa came with me. We had a long wait but I was his last patient of the day. Dr Bahlis is the physician whom I was told about by the nurse at the Cardiac Function Clinic over 6 weeks ago. It was my being a ‘squeaky wheel’ that finally brought this about. Except for this week, I’ve been going to the CFC weekly to discuss blood work and how I’m reacting to the meds that have been prescribed. I saw Dr Connolly a couple weeks ago and stressed how important it was for me to see Dr Bahlis, to get to the root of the problem. Apparently the waiting list can be up to 6 months. Last week they spoke and over the weekend I became a priority and was registered at the Tom Baker Clinic. I got the call about the appointment just this Tuesday. Dr Bahlis spoke about my condition and when symptoms had been occurring and he was very surprised that I wasn’t diagnosed much sooner. That being said, here’s the plan. I’m on the path for an Autologous Blood Stem Cell Transplant (ABSCT) to remove the amyloids from the bone marrow. This is the ‘gold standard’ treatment typically used for multiplemyeloma cancer patients and involves the harvesting of stem cells from my own bone marrow, a sample of which is going to be taken from a hip bone next Wednesday, May 3. These stem cells are cleaned of amyloids, frozen and later on reintroduced after high-dose chemotherapy. It remains to be seen when this will take place but, to paraphrase Dr Bahlis, time is of the essence. Along with the sample next week I’ll be having more blood work done, an abdominal ultrasound and a full body X-Ray at least in part to rule out myeloma. I will be having a comprehensive consultation regarding the treatment plan the week after next.
Along with feeling fairly fatigued from low blood pressure I had been experiencing extreme edema in my ankles/legs until my meds were altered a couple weeks ago. At first, at the end of March, the Candesartan was reduced by half to 8 mg daily and the Furosemide was doubled to 80 mg. That didn’t do it. Then after a week or so the Candesartan was dropped. This helped with the fatigue/dizziness but not the edema. Then, for the Easter weekend, I was prescribed a daily dose of 5 mg Metolazone, a ‘kick start’ diuretic and 25 mg Spironolactone, another, mild diuretic that helps balance potassium. It was like a miracle! Even with all the attendant food and drink in the company of Monique & Doug and the girls, Natalie and the boys and the Groves, on Easter Sunday my edema was all but gone. In a week I had dropped over 12 pounds of fluid! On Easter Monday I felt the best I’ve been in months. I’ve gained about 5 pounds since and with the occasional help of a pair of compression knee socks (white) I am relatively edema free. At this point I am on 40 mg Furosemide along with the Bisoprolol and Spironolactone. Weekends are 80 mg Furosemide with the additional 5 mg Metolazone.
More good news is that I have had no atrial fibrillation episodes since I started on the meds in late January.
Progress has been made on the dental scene as well. On Thursday I had a second fitting of the wax model of a lower partial denture. I’ll get to ‘test drive’ the finished unit on Tuesday and should finally, after well over a year, be able to chew with molars again. I don’t expect it to be normal/perfect but anything would be better than front teeth only.
Some of you are already aware but in case you are not, Lisa has returned to her former place of employment, Care Factor Computer Services Inc. She has a new, more responsible position than previously, now with the title “Vice-President Finance & Administration”. Being much closer to home, as an added bonus, she will again be able to run to her office when she chooses. Generally, it’s a lot more convenient for all of us, particularly at this point in our lives. By the way, we had a talk with Jesse about my condition (obviously withholding the more serious details) yesterday. She’s cool J
Again, thanks so much for all your concerns, prayers and feedback. Please stay in touch.