Third time is a charm

I have a huge amount of anxiety going to Houston this time. I keep trying to identify why, and I think it is because I am hoping that this procedure is a solution to all or at least some of my symptoms. Here is why I decided to go ahead and get the procedure done to close the PFO.

The theory is that tiny micro embolisms are going through my PFO (hole in the upper chambers of my heart) and going straight up to my brain. This is possibly the cause of the migraines, dizziness, vertigo, blurred vision etc. It feels eerily similar to a TIA or small stroke for whatever reason, just one on top of another at times. There are also doctors who have said that serotonin is usually broken down and processed out of your blood when it goes the right way through your lungs. But because my blood is not doing that correctly and going through the hole to the wrong side there is too much serotonin getting through to the brain which also causes it to go haywire, thus intractable migraines. Unfortunately there are lesions in my brain which show the impact of the migraines as well. 

The latest combo of drugs is helping a lot. I was able to participate in my brothers wedding, travel with my family, walk longer distances, help out at tball practice and so on. All of this feels like a huge win because before this I was pretty much bedridden. These medications are specifically targeting the issues with the PFO which is why I think they are working. One medication is working to make the blood less sticky this dissolving a lot of those micro embolisms. The other is working to block the serotonin receptors so that all that serotonin is not being absorbed. The third is a GI med that is helping to heal the lesions in my stomach. Diet and exercise have been paramount in helping me to function better. Even a trace of gluten and I have a migraine for days. Interesting how the brain and gut are so connected. I think it has something to do with minimizing inflammation in the body. But that's just my theory. So I try to keep from being "glutened" as my friend Sara calls it and it makes a huge difference. My diet is a bit crazy at the moment and I am still figuring it all out. 

The other piece to this puzzle is the POTS diagnosis. And this one has been puzzling. I tested positive for PoTs after a tilt table test. I bet you are wondering what the heck is POTS sounds like some sort of random diagnosis. Postural orthostatic tacicardia syndrome is an issue with the autonomic nervous system. This system controls all sorts of things in your body like....sweating, heart rate, blood pressure, breathing, pupils, digestion, body temperature regulation. 

There is no cure for POTS and it seems to still be fairly new in the medical field. 

It basically means that when I am sitting or laying down my blood pools in my legs or pelvis. When I stand my heart starts racing trying to work super hard to pull that blood up so I don't pass out. The problem is my heart is working too hard. So they put me on a beta blocker which opens up all the veins and arteries and slows down my heart. Once I started on a beta blocker to help slow down my heart I noticed a huge improvement in my energy and the vertigo lessened significantly. Thank the Lord for relief from the vertigo.  Since there isn't a cure for POTS I have to be super aware of how much I water I am drinking and I take salt pills. I also have to exercise even when my heart is crazy all over the place. All these things help to alleviate the intensity of POTs. I am thankful I have not been one of the people who passes out from POTS but it is very common. I stumble a lot and feel close to passing out but I haven't yet. 

So the question is will this heart repair help to alleviate the symptoms of POTS?  The doctors say the two aren't connected. But who knows. 

Maybe if we plug the leak my heart will be more efficient and won't have to work so hard. 

I have been waking up daily with the most blinding throbbing migraine. Once I am up and moving it lessens but every day I have to press through the pain and start the day regardless. One foot in front of the other. 

So here we go. Back to Houston for a third time to close the PFO. In an attempt to lessen or stop all those bad things from getting through the hole and to the brain. Eventually getting me off some of these medications. We are hoping beyond hope that this procedure goes smoothly, with no complications, and on the other side of it that there is some improvement. Even if there is no change by getting the procedure done I significantly reduce my risk of stroke. Win win. 

People ask me a lot how I am doing. I usually shrug and smile and say ok. But the truth is I am thankful to be able to be out and about more. I am excited to have been able to drive for the first time in months. I am relieved to have had a break from the vertigo. I am grateful to know what to feed my body to help it to be the strongest it can be.  This has all been such a crazy journey and there are certainly days when I am so fricken pissed at the weakness and frailty I feel. But if any of you know me you know I am one stubborn lady and as long as there is something left for me to do to try to improve I will keep fighting and working towards that. 

So here we go...I'll see ya on the other side. 

How I'm doing now...

Time for a much needed update.

Since being back from Houston I have been on several medications which have been helping me to get energy back.  I also started exercising again which entailed riding a stationary bike, doing band workouts, light weights laying down, and core work.
The POTS postural orthostatic taycardic syndrome diagnosis has been really accurate in pinpointing my symptoms. The medication for that has really seemed to help as well as increasing fluids and salt intake.  The vertigo has leasened a lot as a result of these changes so I have gotten to drive again. Hooray!
Gluten still remains a big trigger for the migraines. I had some accidentally and had a migraine for three days. I have been really focusing on being grain free, egg free, dairy free, and gluten free but it's been a tough regimen to stick to. When I really stick to it I feel better though and anything to lessen the migraines is a good thing.
We found out this week that the PFO closure procedure was approved so we will be flying back to Houston to have that done this month.   The idea is that the PFO is allowing tiny micro embolisms through that hole to where they shouldn't be and that is part of what is setting of the intractable migraines. It also is allowing large amounts of serotonin through to the brain which makes the brain overloaded and this migraines. If we have the hole closed it will at least leasen the amount of stuff getting through or stop it completely. It's not a guaranteed fix and is still considered experimental but my headache specialist agrees it's worth a shot to see if it helps relieve the migraines at all.
I also had a spinal MRI done this week to check for a spinal fluid leak because apparently my brain is sagging into my spinal column. This is called chairi malformation and even though I don't present with all the classic symptoms I am showing enough signs that my headache specialist is looking into it.  If they find a leak somewhere in my spinal fluid then there will be more things to decide from there.
We are going to my brothers wedding and I can't wait to celebrate such a lovely couple.  I am so thankful that I am healthy enough to go and participate and not bedridden like I have been. I am feelings so so thankful for every little improvement and bit of relief. Nothing puts life into perspective more than when your health is taken away. I have gotten to go to james' tball practice and Ellie's dance recital, have mommy days with my kids, drive to my own appointments, go to the grocery store, and take my kids to the lake.  So many things I took for granted before all this have been so precious to me. So I'm going to soak up every sweet moment I can with all our family and friends during this time. When we get back there are some really exciting changes on the horizon so I am going to keep looking forward with hope. 

Medical anomaly

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...

Houston we have a problem

March 2016

Let's talk about Houston.

Why did we go there?
Well if you don't already know, it is a medical mecca.  There are seriously brilliant minds there.  And we have amazingly kind family who live there who offered to help us to get in to see some of the top doctors in the area of neurology and neurosurgery there so we hopped on a plane and went.
Before going we had literally been told by doctors in Colorado...
"No further follow up was needed on the cyst in my brain, but we don't know what is going on and why you are having all the symptoms you are having, see yet another specialist."
"The migraines that have been going on for 30+ days...would go away on their own,"
"There was nothing that they could find that was wrong but something was certainly wrong with me, they just didn't know what and I was in the hands of specialists to try trial and error with drugs to see what would work."

When we went to Houston with the help of my Dad's cousin and his wonderful wife we were treated with such amazing kindness.  Every doctor that we saw there gave us so much valuable information.  They had a wealth of knowledge and each one pealed back another layer of my complex case.  We came home with so many new ideas and things to try.

But then trying to transfer that knowledge back to our doctors here has proven to be a ridiculous challenge.  I am incredibly grateful for the medical community and thankful for how hardworking and professional the individuals are within that community.  But like education there are aspects about the system which bog it down and slow down the rate at which a person is able to receive the care they need.  I am not going to continue to rant about this but it has been terribly frustrating during this process.

So we came back to Colorado and tried all of those wonderful things they told us to try and there we were 4 weeks later and...the echo results are in.

Turns out I have a PFO patent foramen ovale--or a hole in my heart.  Read below for more info.

http://www.heart.org/HEARTORG/Conditions/More/CardiovascularConditionsofChildhood/Patent-Foramen-Ovale-PFO_UCM_469590_Article.jsp#.VyK1QhMrI0Q


So what were our options...at this point I am still having daily migraines.  The drugs they have tried have now failed and I am trying yet another new treatment. I still can't drive or work.  I have dizziness, blurred vision, vertigo and migraines every day and a whole host of side effects from the medications.

So we could wait in Colorado for 2 months before we could be seen by the cardiologist.  Or fly back to Houston and be seen that week by some of the top cardiologists and neurologists and gastroenterologists in the field.

With heavy hearts we packed up our kiddos and left them with their amazing Grammy and Pops and flew back to Houston.  Hoping for answers, filled with questions, and anxious to get better.

The Purge

Gluten is the devil.
Not really, but yes, it makes me really ill.  Once we found this out we went from feeling like there was nothing we could do about our situation to at least having something we could focus on.  It isn's all of the answer to all of the puzzle pieces but it is putting a lot of the pieces together for us.  We immediately set out to start purging our kitchen of ALL things containing gluten and boy was there a lot of it.  It was a bit of a panic, knee jerk reaction but when you open the cabinet and have to read every label before being able to eat something it gets a little tiresome.  So we purged.  For someone (like me) with Celiac's even trace amounts of gluten in spices, tea, condiments, etc can make a person very sick.  So not only did I need to purge anything with gluten but also the jelly jar which had a knife dipped in it to spread jelly on wheat toast and then re-dipped in to get more jelly needed to be placed on a separate shelf where I no longer used it.  Even crumbs from the toaster or the cutting board at this point can make me sick or trigger more migraines (if that is the trigger).  I read somewhere early on that 1/48th of a teaspoon of gluten can damage a person with Celiac's small intestine.  So what that means to me is--I have been eating gluten for 33 years of my life....yikes...I can't afford any more damage.  

So job #1 was get all the food separated that had gluten, purge or donate what we weren't going to use anymore.


Job #2 was to cleanse all the cooking utensils like majorly cleanse them.  I'm talking like deep clean and then deep clean them again and then maybe a third or fourth time.  Thank goodness we have a stainless steel kitchen aid mixer and pots and pans that could be scrubbed to high heaven.

Job #3 Keep purging because you most definitely missed something.  Scan and rescan items to make sure there are not hidden trace elements of gluten.  This handy little app helped a lot "The Gluten Free Scanner."

Job #4 Pin every pin on Pinterest and text your Auntie GayLynn for all her best GF and Paleo recipes and start trying them immediately after returning from the store (and yes they are delicious). 

 Job #5 Go the the store and try not to have a panic attack while you shop for new GF items because #1 they cost a fortune and #2 you have no idea what to make.

And for a little comic relief I give you the bloopers 

 

Flying to Houston my head will explode....

Crazy Eyes!!! I can't see my eyes are dilated

At the ER the 3rd time eating chips apparently this is my face for everything....how attractive ;)