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Old Tue Sep 5, 2017, 02:00 PM
Bossywife Bossywife is offline
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Join Date: Apr 2015
Location: Canada
Posts: 103
The "Bossywife" is because my husband's favourite hockey player is Mike Bossy. I'm only as bossy as I have to be... which, I guess, is usually quite bossy.

My husband's blood work numbers got significantly better after we added B12 and Folic Acid to his diet and removed Aspartame. I wanted to give him Turmeric, but he drew the line there. The other thing that happened at the time when his numbers improved was that he got his diabetes under control (less sugar). We notice that when he has more than usual sugar or alcohol (like around Christmas) his numbers kind of go South. Nothing serious, but enough to get his wife nagging.

His Platelets hover around 50-90. He has been like this since 2008 that we know of... possibly earlier undiagnosed. I'm not sure if I told the story in this forum, but he was hospitalized for some kind of infection. His bloodwork was all low. His WBC went down to 1.5, lymphocytes 0.5, neutrophiles 0.9, RBC 4.1, platelets 52 and MCV 29.1.

It was terrifying... and he was also diagnosed with Type 2 Diabetes that day. After a couple of rounds of antibiotics and a 4 day stay, he was released with instruction to get his bloodwork checked every 3 months for Diabetes ... no explanation for the other bloodwork issue, other than he had an "infection of unknown origin".

Fast forward to 2015 when I started to get annoyed by his bloodwork being all over the place. The doctors would just say that sometimes people have low platelets for no reason. His whites fluctuated between 2.6-3.9, his other numbers were frequently low with no rhyme or reason. I insisted on a bone marrow biopsy (bossy me haha) and low and behold, they were all surprised to discover he had MDS RAEB-1.

I often wonder if they would have left it that long if it were their loved one. But I try not to obsess about those kinds of questions. Stay positive Laura!! Stay positive!!

Now we are just on watch and wait, with testing monthly so that he can continue playing hockey (if his platelets go below 40, he can't play... so far so good). We did find out that his brother is a perfect match (I call him my "Spare Parts Husband" now) I'm curious about the findings of the genetic testing and will post as soon as I know.

Sounds like our fellas are about the same in some ways with this disease. If you are on Facebook and ever want to chat, my name is Laura Waite in Prince George, Canada. Also, I have 7 grandchildren
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation

Last edited by Bossywife : Tue Sep 5, 2017 at 02:55 PM.
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