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In 2013 I was diagnosed with Mono Clonal B cell Lymphocytosis and told that it may or may not ever turn into CLL and I was also told that I could pretty much do what I wanted. This was a huge error because I went on to rebuild a home based on what my non-specialist doctor told me and upon completing the house I was deathly ill for 5 and a half months because I had over-taxed my body. Based on a misconception that I could do whatever I wanted to, I had kept living my life based on a misdiagnosis. About two years ago I went to Dr. John Pagel in Seattle who is a CLL specialist, and then a year later I went to Dr. Choi another CLL specialist in the San Diego area. Both the CLL specialists diagnosed me with CLL which was fantastic because after being diagnosed by two non-specialist cancer doctors I learned that with having CLL, I needed to live my life differently.
I quit doing the things that were making me so very sick because for three years I had been mostly very ill and on antibiotics which was horrible! Now that I know I have CLL I do things very differently and do not get sick hardly at all – at least not the same as when I exposed myself to viruses, wore my body down by not getting enough rest when needed, and by not putting myself in high risk situations by being around sick people. Now when I work I pace myself and get plenty of rest. I also back myself away from high stress situations emotionally. I do still get exercise but I ride my bicycle instead of going to a dirty gym where I was taking in every pathogen that came along.
The wrong diagnosis can be very dangerous. I had actually been in very serious jeopardy and that is why I am so very glad to really know what I was up against. By living my life differently, I strongly feel I have more chance of living longer. Yes, I was very, very ill and it did not need to happen. Now that I know I have CLL, I go to group meetings and read publications directed at CLL patients and have learned so very much. Dr. Koffman had a symposium of experts in Seattle and this was of extreme value. I simply do not live the same and therefore have more chance of staying alive longer by being educated on CLL.
Originally published in The CLL Tribune Q4 2018.