Kevin Veenstra: I have one of those one story of diagnosis that I was on to it before my doctors were on to it, but I didn't know what it was. I am an asthmatic, so I see an asthma doctor immunologist. Part of that also is I have my blood work done yearly. That's the good news about the general practitioners.They did have the complete blood count. They didn't do the total protein.
For three years, I noticed my hemoglobin dropping every year about half a unit or more. I brought it up to my general practitioner to say, "Hey,--” We did B-12 shots, but then, unfortunately, he hand waved at it and I got down to, I'd say, not very anemic but certainly anemic for a guy around 11. I had the blood test done from 2010 on, and about 2012, I noticed the dip starting. At 2015, I had two things that I was going to do, always about being an advocate for myself, was A, do I still need these asthma medicines because it didn't do my kids much good, and then B, what the heck is going on with my blood.
I didn't know if I'm bleeding or something else. I went to the asthma doctor, and he actually found the M spike by doing the electrophoresis that the general practitioner never did and so he called up the general practitioner and then got me that month into a hematologist which I've been with ever since. I was diagnosed in August of 2015. I actually was bringing in, being an engineer by training, graphs of my blood counts dropping to my general practitioner to say what gives and he didn't quite pick up on it.
I was then diagnosed September 2015 initially and I had ongoing some fatigue along the sides, but it's like the frog in boiling water. It happens so slowly, never really quite notice to say, "Oh, yes, I can't do what I used to do." The running joke is that another fellow support group patient and I, my wife and her husband were out walking on one of these foundation walks, and both of them compare. This other patient has the exact same item I did. She had more bone expression than I did, but also had anemia.
Her husband and my wife both at that time before were diagnosed just thought we were out of shape. Afterwards it's like, "Oh, no, I guess there is a medical cause for Kevin being more anemic." Misdiagnosis for three years, I don't think that's totally uncommon amongst myeloma patients to find out that something has been going on. I think Dr. Kyle of Mayo would say that when you're diagnosed, the myeloma actually started 10 to 20 years before your diagnosis, just for the geometric progression of how cells proliferate. I did start to go and get treated then in 2015. We did have to change insurance companies, so ... general practitioner got one that I'm more happy with now.
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