Thursday, October 26, 2006 Update 21, LAST NEXT
On this date, 6 months ago, I had my first meeting/exam with the good Dr. Nizar Bahlis at the Tom Baker Cancer Clinic Medical Day Care Centre. Here is a summary of what has transpired since then.
On April 26, the path was set for what was to follow. During this period I have had a Central Venous Catheter inserted, Blood Stem Cell Mobilization therapy, Apheresis and the Blood Stem Cell Transplant itself followed by three weeks hospitalization with treatment to help rebuild my destroyed, by high-dose chemotherapy, immune system. Since discharge from Unit 57, I have been returning to the Bone Marrow Transplant Clinic at least once a week for routine bloodwork and CVC line care/dressing change. I also had a Cardioversion to halt the Atrial Fibrillation and establish a normal heartbeat. Prescribed medications have remained pretty well unchanged except for the odd tweak here and there to respond to INR and potassium levels as well as fluid retention issues. Then, of course, there have been the attendant side effects of all of the above.
At this point my INR and potassium levels are stable and the edema in my feet, ankles and legs is nearly gone. I can finally slip into my moccasin slippers and don't need to wear baggy pants or shorts! My hair is growing very quickly, I started a beard last week, and my fingernails look like they are returning to normal condition. Half of them have been looking pretty bad. On the minus side I have very dry skin, a lot of recurring purpurae (red wine coloured bruises) and although I have a decent appetite and am eating as well as can be expected, there have been few signs of needed weight gain. I remain at 130 pounds or so. I should weigh about 150.
Last week I finally met Dr. Kryski, my new cardiologist. He has had experience with other amyloidosis patients so I feel that I am in yet another pair of 'good hands'. He and Leslie Reed, the RN at the Cardiac Function Clinic at the Peter Lougheed Centre, regularly share information. Consequently, my visits to the CFC will be sort of replacing the BMT clinic trips. Dr. Kryski has had me stop taking my daily dosage of Bisoprolol, the beta-blocker, and I can feel the difference already. Now, when I exert myself, the heart is allowed to function so that my tissues get the required oxygen bearing blood flow. It feels like I've got a bit more 'gas in the tank'. I was at the CFC last Friday where I had a 'push' IV (into a vein in my hand - not the CVC line) of Lasix to replace the oral dosage for the day. It's way more effective that way and I'll likely have a few more to help completely eliminate my edema. I am also expecting to have another cardiac MRI scan soon to accurately indicate the current presence of amyloid fibrils.
I saw Dr. Bahlis this past Tuesday. It was determined between he and Dr. Kryski that I will no longer require the CVC. So, on October 31, my 'friend' for the last 5 months will finally be removed. I will at last be able give (and get) a decent, proper hug without the interference of this tangle of plastic! After that date I'll be seeing Dr. Bahlis at the Medical Day Care Centre and will be officially discharged from further care at the BMT Clinic. There is a plan to put me on a regimen of a type of Thalidomide which shows promise as an ongoing treatment for amyloidosis. More to come about that later.
As my immune system remains suppressed I have the risk of coming down with the flu since I will not be allowed to get a flu shot, as I have been for several years, until January. That being the case, it has been recommended that those close to me have the flu shot. It would reduce the risk of my catching it. I can only speculate on the repercussions of that happening. As previously stated, I am still vulnerable to all the diseases that I was immunized against as a kid. I'll have to wait until July when those series of immunization shots can begin. In the meantime, I need to be careful.
A new charitable foundation based in Toronto has recently been established which includes Dr. Bahlis as a member of the board of directors. It is the Canadian Amyloidosis Support Network. They have a website, still in it's infancy, located at http://www.thecasn.org Please check out the site regularly as it develops and continues to add content.
So, the saga continues.
Love to you all,