Wednesday, March 26, 2014
Wednesday, March 19, 2014
Monday, March 10, 2014
Elephant In The Room
"Elephant in the room"
is an English metaphorical idiom for an obvious truth that is either
being ignored or going unaddressed. The idiomatic expression also
applies to an obvious problem or risk no one wants to discuss. It is
based on the idea that an elephant in a room would be impossible to
overlook; thus, people in the room who pretend the elephant is not there
have chosen to avoid dealing with the looming big issue. (Wikipedia)
With the elephant in the room being something obvious, let's change this up a little bit and talk about the "mouse in the house". For the sake of symbolism, the mouse will be something a little less obvious and more difficult to see. Mouse being two copies of a gene mutation. You may not see the mouse, but that doesn't mean you don't see evidence from the mouse, like traces of mouse poop, or mouse urine, or something having been nibbled on. You can choose to ignore doing something about the mouse, but that won't stop the damage the mouse does.
Now, about that gene mutation... I pushed and begged and pleaded for the team to try to get to the root cause of the issues Michael was and is still having. I begged from the very beginning, back in February of 2013. Finally, in October, at our insistence, they did more testing and then neglected to mention the results until he was back in the hospital waiting for a heart transplant. My big question and concern was, if they didn't get to the cause, what would keep the same thing from happening to the new heart? Two doctors actually had the nerve to tell me, "Look at it this way, it took him 41 years to get in this shape, so maybe it will take him 41 years to do it again." Seriously? After everything that happened to him in 1 year, two clotted LVADs, several balloon pumps and countless procedures, you could look at me with a straight face and say that? While you may not want to directly, or proactively address this issue, we aren't too ignorant to see that you are having to address it indirectly, according to lab results.
Another really hard thing to deal with is, I've been searching and researching for over 30 years to try to find an answer for my health issues, as well as a common thread shared by my family and wasn't successful. It took nearly losing my Son to find something. To know that I passed him at least one of those defective genes is very hard to come to terms with. To know that my other children and grandchildren may also have a defective copy is even harder to deal with. I also can't help wondering if finding this sooner could have prevented, or at least lessened the severity of what happened. Until someone with the intelligence to explain how it didn't play a huge part in what happened, I will continue to believe it did!
Rant over.
Most of you that have your email enabled have been updated on Michael. For those that don't have email enabled, this is where he stands... on Thursday, February 27th, he went to the hospital for his third biopsy. At that time he couldn't walk more than a few feet, due to intense foot pain. He was admitted to the hospital, they ran some tests to try to find out what was going on. During the stay, they did an MRI on his back, which he had broken 11 years ago and found more issues than he was aware of, including an 8mm lesion on his spine. On Monday, March 3rd, he was released, with more drugs added to his already toxic drug cocktail. The drugs have allowed him more ability to walk, but his blood pressure has gotten way too high. On Wednesday, March 5th, he finally called the coordinator to report it and they discontinued two drugs they suspected were contributing and added yet another one. Thursday, March 6th, he went to Clinic for labs and didn't say anything to them about the still elevated blood pressure, wanted to give it a few more days to settle down and I suspect he didn't want to give them a reason to admit him. He finally had a decent pressure Sunday morning, but by evening his Sister said it was up again. He goes for his fourth biopsy on Thursday, March 13th.
If you made it this far, your eyes are probably crossed from reading. Sorry it was so long and thanks for hanging in there! If it makes you feel any better, my eyes are crossed, too! Consider yourself lucky I don't do this very often.
With the elephant in the room being something obvious, let's change this up a little bit and talk about the "mouse in the house". For the sake of symbolism, the mouse will be something a little less obvious and more difficult to see. Mouse being two copies of a gene mutation. You may not see the mouse, but that doesn't mean you don't see evidence from the mouse, like traces of mouse poop, or mouse urine, or something having been nibbled on. You can choose to ignore doing something about the mouse, but that won't stop the damage the mouse does.
Now, about that gene mutation... I pushed and begged and pleaded for the team to try to get to the root cause of the issues Michael was and is still having. I begged from the very beginning, back in February of 2013. Finally, in October, at our insistence, they did more testing and then neglected to mention the results until he was back in the hospital waiting for a heart transplant. My big question and concern was, if they didn't get to the cause, what would keep the same thing from happening to the new heart? Two doctors actually had the nerve to tell me, "Look at it this way, it took him 41 years to get in this shape, so maybe it will take him 41 years to do it again." Seriously? After everything that happened to him in 1 year, two clotted LVADs, several balloon pumps and countless procedures, you could look at me with a straight face and say that? While you may not want to directly, or proactively address this issue, we aren't too ignorant to see that you are having to address it indirectly, according to lab results.
Another really hard thing to deal with is, I've been searching and researching for over 30 years to try to find an answer for my health issues, as well as a common thread shared by my family and wasn't successful. It took nearly losing my Son to find something. To know that I passed him at least one of those defective genes is very hard to come to terms with. To know that my other children and grandchildren may also have a defective copy is even harder to deal with. I also can't help wondering if finding this sooner could have prevented, or at least lessened the severity of what happened. Until someone with the intelligence to explain how it didn't play a huge part in what happened, I will continue to believe it did!
Rant over.
Most of you that have your email enabled have been updated on Michael. For those that don't have email enabled, this is where he stands... on Thursday, February 27th, he went to the hospital for his third biopsy. At that time he couldn't walk more than a few feet, due to intense foot pain. He was admitted to the hospital, they ran some tests to try to find out what was going on. During the stay, they did an MRI on his back, which he had broken 11 years ago and found more issues than he was aware of, including an 8mm lesion on his spine. On Monday, March 3rd, he was released, with more drugs added to his already toxic drug cocktail. The drugs have allowed him more ability to walk, but his blood pressure has gotten way too high. On Wednesday, March 5th, he finally called the coordinator to report it and they discontinued two drugs they suspected were contributing and added yet another one. Thursday, March 6th, he went to Clinic for labs and didn't say anything to them about the still elevated blood pressure, wanted to give it a few more days to settle down and I suspect he didn't want to give them a reason to admit him. He finally had a decent pressure Sunday morning, but by evening his Sister said it was up again. He goes for his fourth biopsy on Thursday, March 13th.
If you made it this far, your eyes are probably crossed from reading. Sorry it was so long and thanks for hanging in there! If it makes you feel any better, my eyes are crossed, too! Consider yourself lucky I don't do this very often.
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