I’m bleeping mad. I’ve kept myself quiet for a long time, just waiting for all the answers that we needed and while we still have some answers left to get, I am going to let off some steam. Just like a quick release of my InstaPot!!
My husband, Mr. Phat as some of you know him, has been sick for 2 years. It started very slowly in February of 2017 with some neurological type symptoms. Pain in the bottom of his foot, pins and needles, incontinence and the inability to catch his breath. In April 2017 he ended up in the hospital with the flu and Afib. Since that day he has had Afib on and off and the neurological symptoms have gotten worse and worse, making him a near invalid.
Since February of 2017 he has seen 13 different doctors, some more than once and that doesn’t include the doctors during his hospital stays. He has had 10 procedures, either trying to diagnose his problem or to fix his erratic heart beats and he had a lumbar spinal fusion a year ago which only exacerbated his symptoms. He has had 6 hospital stays including the one that started at midnight last night when I drove him to the hospital because he couldn’t breathe. He’s having another episode of chronic heart failure and he will be ok in a day or two.
In 2017 we paid $13,629.58 out of pocket for our medical co pays/deductibles and for 2018 Chris’s treatments alone were $7,994.59 out of pocket. Plus we pay a considerable amount of money for our Blue Cross Blue Shield medical insurance.
He has lost 30 pounds. Without trying. A neurologist that we saw locally decided that Chris had ALS. This devastated us for a while until we realized that diagnoses didn’t fit his symptoms.
Finally on Monday we went to Brigham & Women’s Hospital in Boston to the Neuro Sciences Division. We met with a young doctor for over an hour and then he brought in the co chair of the department. The guru, we were told. Both of these doctors agreed that Chris does not have any neurological issues. No, he has a B12 deficiency.
The Cardiac doctor at the hospital last night said that according to Chris’s blood work, he has pernicious anemia. Want to know the symptoms:
Fatigue, Shortness of Breath, Dizziness, Pale or yellow skin, Irregular heartbeats, weight loss, Numbness or tingling in your hands and feet, muscle weakness, unsteady movements, mental confusion or forgetfulness.
These are ALL the Symptoms that Mr. Phat has expressed to these 13 doctors over the past 2 years. Some of the have heard his complaints several times.
40% of people over age 60 have B12 deficiency issues. Hello??? 40%!! Don’t you think one of these doctors would have recognized a relatively common health issue? This shouldn’t be rocket science. This seems rather simple – they were looking at deep stuff like MS, Parkinsons, ALS, Amyloidosis, Multiple Myeloma and it was B12. I cannot tell you the frustration I feel for the 2 years of his life that Mr. has lost. The unnecessary, painful, debilitation surgery. The tests, the visits to the hospital, doctors offices.
To add insult to injury, we received 5 pages of invoices from one of the medical providers this week looking for $3891.52 and $1304.08. I can prove that I paid most of it, but the $40 co pays that go back to 2012 and 2013? Really? How did we get out of the doctors office with out paying our copay?
I feel better already. I have always preached to be your own advocate, and as much as we have tried – and pushed and cried and asked, we didn’t get the right answers. Sub par care for sure.