I was told in 2008 when they found I had pancreatic cancer that less that 1% of people have the type of cancer I had.
I'm not a fan of being in the 1%. But here I am again...in the land of new science, being a medical mystery, one that I hope has a solution but for now the solution is pretty unclear.
Here is what we found out on our second trip to Houston.
The PFO--hole in my heart-- is most likely the cause of the chronic migraines.
It is 2mm but is considered a Grade 4 which means its a small hole but its letting the largest amount of blood through to where it shouldn't be. That blood is unfiltered because of going through the hole and it goes straight to my brain. All those unfiltered things in my blood are making my brain go haywire, thus chronic unbreakable migraines...
The PFO can be closed in some cases--usually they will not close it unless you have had a stroke. (Stroke is a big risk for people with PFO). This closure procedure is still a possibility for me but its not an easy road to choose that path. The idea is if you fix the hole, stop the bad chemicals from getting through, maybe stop the migraines--but there is no guarantee that this will be the solution. The procedures have had mixed results in regards to it helping migraine suffers. We are basically waiting for science to catch up. I was told by one neurologist that even 5 years ago they didn't even realize there was a correlation between PFO and migraine.
The PFO problem left us with the option to try more medications to try to stop the migraines and start taking an aspirin a day to avoid a stroke. Everyone should learn the signs of a stroke...
http://www.strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp
Then to further complicate things they also found that I have something called Postural Orthostatic Tacycardia Syndrome or POTS. This is probably one of the sources of all the dizzy, lightheadedness. Basically my heart is working too hard when I am standing or sitting up to try to keep my blood pressure up. Three things contribute to POTS--blood pressure, blood volume, heart rate. So my job is to increase fluids, salt intake, build muscle doing exercises that are done laying down or seated, and take a beta blocker. So I pretty much have a holey, ineffiecent heart...thank you very much.
We also saw a really brilliant gastroenterologist while we were there and he was doing some additional tests to confirm the celiacs diagnosis.
So now here are the stats since Jan 31, 2016:
I have seen 20 specialists
I have had a PET scan, 2 MRI's, a CTA, a sleep study, heart rate monitor for a day, tilt table test, TEE, Transcranial Doppler TCD, Upper Endoscopy, and had more IV's and blood drawn than I can even count--one test was 12 vials of blood.
Don't worry I wont leave you with only doom and gloom...in the midst of this we have been met with remarkable amounts of kindness and compassion.
Friends and family who have made specialty gluten free care packages
Homemade cards and notes
Gift cards to help with the cost of GF food
Offers for playdates for the kids
Friends and family sending emails, texts, and calls letting us know we aren't alone and they haven't given up on us
People offering to cover Jeremy's shifts for free so he can be in Texas with me
An envelope of cash to help cover the cost of parking, food, and gas in Texas
A free room in our relatives home, wonderful home cooked meals, and a car to borrow to get to appointments, along with countless hours of listening to us retell each doctor visit, and helping us to sort through it all
Plane tickets
Connections to get in to doctors sooner, emails and phone calls to specialists insisting they see me immediately and not in 2 or 4 months
Hotel points
A listening ear, suggestions and ideas to try
Someone to care for our kids, making them feel loved and supported while we were gone for two weeks, keeping them distracted so they didn't worry, providing endless fun and activities, letting them be kids...
We are truly and overwhelmingly blessed by all the love and support. There are no words for what it has meant to us.
The road ahead is not crystal clear...it pretty much matches the color of the Texas flood waters we lived through.
I feel very much like the man clinging to the side of the dump truck as it charges ahead. I imagine he was just hoping to make it through to dry land. In many ways that is my hope. These illnesses have wiped out my ability to control and choose how I want my life to be, it has robbed me of many things, and yet I am still looking ahead. I am hoping for a solution so I can be on dry land again...
I'm not a fan of being in the 1%. But here I am again...in the land of new science, being a medical mystery, one that I hope has a solution but for now the solution is pretty unclear.
Here is what we found out on our second trip to Houston.
The PFO--hole in my heart-- is most likely the cause of the chronic migraines.
It is 2mm but is considered a Grade 4 which means its a small hole but its letting the largest amount of blood through to where it shouldn't be. That blood is unfiltered because of going through the hole and it goes straight to my brain. All those unfiltered things in my blood are making my brain go haywire, thus chronic unbreakable migraines...
The PFO can be closed in some cases--usually they will not close it unless you have had a stroke. (Stroke is a big risk for people with PFO). This closure procedure is still a possibility for me but its not an easy road to choose that path. The idea is if you fix the hole, stop the bad chemicals from getting through, maybe stop the migraines--but there is no guarantee that this will be the solution. The procedures have had mixed results in regards to it helping migraine suffers. We are basically waiting for science to catch up. I was told by one neurologist that even 5 years ago they didn't even realize there was a correlation between PFO and migraine.
The PFO problem left us with the option to try more medications to try to stop the migraines and start taking an aspirin a day to avoid a stroke. Everyone should learn the signs of a stroke...
http://www.strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp
Then to further complicate things they also found that I have something called Postural Orthostatic Tacycardia Syndrome or POTS. This is probably one of the sources of all the dizzy, lightheadedness. Basically my heart is working too hard when I am standing or sitting up to try to keep my blood pressure up. Three things contribute to POTS--blood pressure, blood volume, heart rate. So my job is to increase fluids, salt intake, build muscle doing exercises that are done laying down or seated, and take a beta blocker. So I pretty much have a holey, ineffiecent heart...thank you very much.
We also saw a really brilliant gastroenterologist while we were there and he was doing some additional tests to confirm the celiacs diagnosis.
So now here are the stats since Jan 31, 2016:
I have seen 20 specialists
I have had a PET scan, 2 MRI's, a CTA, a sleep study, heart rate monitor for a day, tilt table test, TEE, Transcranial Doppler TCD, Upper Endoscopy, and had more IV's and blood drawn than I can even count--one test was 12 vials of blood.
Don't worry I wont leave you with only doom and gloom...in the midst of this we have been met with remarkable amounts of kindness and compassion.
Friends and family who have made specialty gluten free care packages
Homemade cards and notes
Gift cards to help with the cost of GF food
Offers for playdates for the kids
Friends and family sending emails, texts, and calls letting us know we aren't alone and they haven't given up on us
People offering to cover Jeremy's shifts for free so he can be in Texas with me
An envelope of cash to help cover the cost of parking, food, and gas in Texas
A free room in our relatives home, wonderful home cooked meals, and a car to borrow to get to appointments, along with countless hours of listening to us retell each doctor visit, and helping us to sort through it all
Plane tickets
Connections to get in to doctors sooner, emails and phone calls to specialists insisting they see me immediately and not in 2 or 4 months
Hotel points
A listening ear, suggestions and ideas to try
Someone to care for our kids, making them feel loved and supported while we were gone for two weeks, keeping them distracted so they didn't worry, providing endless fun and activities, letting them be kids...
We are truly and overwhelmingly blessed by all the love and support. There are no words for what it has meant to us.
The road ahead is not crystal clear...it pretty much matches the color of the Texas flood waters we lived through.
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