My secret revealed
please read this entire post, you could save someones life
I decided to finally update my blog with what has been going on for the last several months.
Mainlybecause I want to help someone. When I started going through this I was desperately googling and couldn't find anything with these symptoms that made sense.
A lot of you already have picked up on the fact that I've been sick, not blogging and not showing up to
things for the last year but mostly in the last few months.
We knew something was wrong, we just weren't sure what it was exactly.
I was absolutely shocked to find out what my diagnosis was.
I was diagnosed with a heart condition in August.
I will be having heart surgery on October 15th.
I've been asked so many questions about this and I know once people find out about it they start thinking
about people they know with the same symptoms and want the information to help them. This is why this post will be so detailed. I hope to answer any questions especially if it will encourage someone to get checked out.
That is the most important reason why i'm blogging about this.
If I wasn't told about it from a good friend (two actually)
then I would have ended up dead.
What is my heart condition?
I was diagnosed with a PFO
Patent Foramen Ovale
A PFO is a whole in the heart between the two atrium's.
Everyone is born with a heart murmur but 75% of them close up on there own, similar
to how the top of newborns skulls are open but close up on their own.
So 25% of the population walk around with a small whole in their heart but only
4% of those people show any symptoms mainly because that whole erodes away over time and
becomes bigger, big enough to cause severe problems.
Most of the time someone is diagnosed it's because it is too late, either they passed away or suffered a severe stroke and that's how this heart condition was first discovered. They started closing the whole the found in the heart to prevent future strokes and the patients reported no more strokes and no more migrains and that's how the PFO closure was discovered.
With each cough, push, strain you are causing the whole to erode, to become larger.
The more athletic you are, the more you push yourself, with each pregnancy you are
unknowingly risking your life.
During pregnancy you have a 30% more chance of having a stroke then when not
pregnant with a PFO because of the increased blood flow and demand on your heart.
The PFO then becomes large enough to cause severe debilitating migraines, Life threatening strokes, mini strokes called TIA's, blood clots, aneurysms and death.
WHY?
In a normal heart the blood flows to the heart, through the right atrium, down to the lungs where it is cleaned and picks up oxygen then flows to the left atrium then to the brain where it delivers all those cleaned nutrients to the brain and allows your organs through out your body to function properly.
In a PFO heart blood leaks through the whole into the opposite atrium skipping that important lung process.
So the blood that flows to my brain is dirty and clotted blood. That causes the blood vessels in your brain to swell like a hose with someone squeezing the end and the pressure builds up which triggers the migraines which also triggers the strokes. So my organs are functioning on dirty clotted blood which means they aren't functioning like they should. (i'm praying some of my other organs start working like they should after surgery:) I'm not sure what the stats are on deaths with PFO's but I've heard enough heart breaking stories from people who found out this is what I have and they knew someone who died from it or maybe they weren't even sure what it was at the time and later found out this is what it most likely was.
Along with the migraines you experience severe exhaustion, dizziness, light headed, foggy headed, fainting, blacking out, and migraines that make you imagine cutting your head into little pieces would feel better then the pain that your head was feeling.
How did this all start?
When I was pregnant with Lochlan it was the worst pregnancy that I'd had. I felt so sick and nauseous and dizzy and the migraines at times made me feel like i'd go insane. One night I woke up around 3am
screaming and crying because a migraine hit me like a car, normally migraines creep up on me so to have one just hit at full blast was a shock. Normally i'd get a migraine on one spot of my head, I could tell you exactly where the migraine was which was usually on the sides above my ears or in the back above the neck or etc,...
That night, It felt like 100 migraines all at once. The pain was so severe it became unbearable. I rolled into a ball at 7 months pregnant and screamed, cried, shaking violently and dripping in sweat. Clint was so panicked and freaked. He wanted to call 911 by I just kept screaming NO, it'll stop. It didn't. This went on to the point that I started banging my head as hard as I could against the floor and starting throwing up. At one moment, I felt a feeling come over me that left me with the thought, death was close by and I was secretly agreeing because the pain was so bad.
In that moment Clint put his hands on my head. (for those of you who are LDS you know the rest)
The moment his hands lifted the migraine stopped.
I fell over on the floor. Clint picked me up carried me to the bed and I slept until almost the evening of the next day. After that happened I noticed my right arm and hand felt numb and tingly and my migraines started occuring weekly. When I held a glass or remote It felt like when your hand was a sleep, just strange feeling. I had a hard time using it and sometimes I couldn't. This finally went away about 6 months later.
I thought it was because of pregnancy.
I thought the migraines were from pregnancy.
What happened to me was a stroke.
I didn't know it at the time but found out recently that 's what it was
and to be honest I was to embarrassed to mention it to the dr.
I told him that I had bad migraines and that my arm felt weird and he said "just pregnancy".
Now that I know all about this and after talking to the Cardiologist that Dr. should have sent me to a cardiologist.
Looser!
But in his defense I downplayed it.
During my pregnancies I feel so tired, exhausted, dizzy and at least 3 days a week I found it hard to get out of bed and would spend those days sleeping so that I could try to act somewhat normal for family events and outings and parties the rest of the week.
After the pregnancy that never went away. It just got worse. I thought it was because I had a 3rd baby, maybe because i'm over 30. Shhhh!
When we moved to the PG house I had a really hard time finding the energy to get everything done. THat same week we had to pack to go to California for a beach trip with friends. When we got back we had a lot of work and unpacking to do. During this time before and after the beach trip I decided to force myself to run.
I always thought I had asthma because when I tried to run my heart felt like it was going to burst through my chest and I Couldn't breath. I was told to breath through it by other runners to that's what I did. I hated feeling like there was something I couldn't do. So I forced myself. Each time I ran it was shorter and shorter distance because It became more difficult for me. I would hide behind a tree or a fence and throw up and try desperately to breath. It felt like a car was sitting on my chest and heart. Then I'd walk home feeling like a failure.
All of this combined forced my heart to be overworked and for me to feel beyond exhausted. The 2-3 days turned to 5-6 days in bed. I sleep 12-14 hours at night and 3-5 hour naps every day and I still wake up feeling like I took a bottle of sleeping pills. When I walk up the stairs I get to the top and have to lean against the wall sweating and feeling like you do right before you faint. Every time I woke up I woke with a migraine. I didn't know what was wrong with me. I got a migraine back at the end of July and it wasn't going away. The same migraine but getting worse and worse. I lost my appetite and every time I eat the migraine gets worse and I throw it up so i've pretty much stopped eating.
I went to lunch one day for one of my best friends birthday and is was the only thing I got dressed for in over a week. I spent most of my days in bed and crying in a pillow not knowing what was happening to me and feeling frustrated. I felt like I was going to go crazy. I wanted so much to feel normal, to just ignore everything and pretend that everything was ok. I"d been doing that for years. BUt now it was so bad that if you took one look at me you knew, I didn't feel well. When I showed up to this lunch I busted out crying at the table in front of my friends friends. (so sorry about that Amanda :) I told them about my secret. How i've been suffering. A girl at the table starting asking me questions about my symptoms, I told her everything I felt and she said that everything I'd said sounded exactly like what she went through before she was diagnosed with a PFO. She told me she just had heart surgery a few weeks before that and she felt better then she's ever felt in her life.
My eyes filled with tears but this time, tears of hope.
I got the name of the dr. from her and called him the next day. They got right in and did a BUBBLE test. You HAVE to have a BUBBLE test to be properly diagnosed and you need to go to a Cardiologist who specializes in PFO's or you could spend a few years being misdiagnosed. I'll include my Dr.'s info at the end of this post.
The crazy thing about this is a year ago when I had the stroke - killer migraine while pregnant with Lock, Clint talked to a family member who is newly married into the family and told her about what was going on with me. She told him that I could have a heart condition and for me to go to this very same dr. that specializes in this. She said her first husband died from this very same thing and he was very young, she spent years watching him suffer, he blacked out and hit trees and was found dead on the scene and revived taken to hospitals and they found nothing, she took him to specialist after specialist and nothing. She watched him suffer, be tortured and felt helpless. He suffered with severe migraines and they had no idea why. She woke up one day to find him lifeless. He passed away during the night in his sleep from a PFO. That was in 2005 and that's when this PFO specialist that I go to really started to make his work known and people started founding out about this condition and how serious it was. For years it was misdiagnosed at MS or other things.
If she didn't share her story with me, I wouldn't have believed. I did sit on the phone number she gave me for a year because I was scared. I didn't really believe it had something to do with my heart. Then when that special friend at lunch gave me her dr.s name and number and it was the very same, I knew it was a sign.
How was I diagnosed?
I went to Dr. Sorensons and had several tests done. One was a bubble test which is very important to a diagnosis. IF A DR. SAYS THEY CAN DIAGNOSE YOU WITH A REGULAR EKG THEN RUN, THEY DON'T KNOW WHAT THEIR TALKING ABOUT.
A Bubble test is where they insert air bubbles through an IV and watch with an ultrasound type thing on your brain. If they see bubbles in your brain then you have a PFO. They can rate mild, moderate and severe by the amount of bubbles and how quickly they appear and mine is severe severe. They also do an EKG, MRI's and some kind of blow test where they can tell the pressure it puts on your heart by blowing, I tested severe severe on that as well a 5+.
Here's a link explaining a little better about a PFO if you're really nutty about information:)
I have to say that when I got the diagnosis, I felt relieved. I didn't feel scared at all. There's an 80% success rate from this surgery and i've met 8 people in the last month who had the surgery (mostly older men :) said that they've never felt better. The surgery is pretty simple. They go through the artery in your leg and put a camera and a medal mesh umbrella and push it all the way up to your heart and then pop it open in place and your heart regrows over the umbrella - crazy huh! Recovery is pretty quick and with 6 months I can do everything Like a normal person.
I'm so grateful and feel lucky that this will in a happy ending with me feeling better then ever. I feel heartbroken for those that suffered and lost to the PFO and for those who suffer with other health problems that they are desperate to find a cure.
If you or someone you know (even your kids) suffer with migraines AND have any of these symptoms: born with a heart murmur, feels dizzy, light headed, extrememly fatigued, blacking out, seizures and have a hard time excersizing-aerobics then PLEASE contact a Cardiologist who specailizes in PFO's. With a PFO it means you are at the highest risk of having a stroke and thats usually how your diagnosed, after you've already had a stroke like I was.
If you live in Utah you can contact Dr. Sherman Sorenson
He's the number one Heart Surgeon in the country and #2 in the world and specializes in PFO's.
801-507-3656
He's located at the IHC Medical Complex off of 5100 South in Murray
What can you do?
I've been beyond touched by the people who have showed up to help.
I'm in all of your debt and no words I could ever express will ever tell you how deeply you've touched me. I've felt your love and to be honest it's lifted me from a deep,lonely and painful place. It's very depressing and isolating to be sick and to not be able to do anything but sleep. I think I felt more pain emotionally then I felt physically. Your spirit and soul wear down when your body falls apart. I feel as though my right of choice has been taken away, I can't chose to do fun things or go out and have fun or play outside with my babies. That choice has been taken away. I just lay there, in pain, imagining a more peaceful and painless place and pretend that I'm having fun when really I feel like i'm in Hell.
Then my sweet angels showed up every day reaching out when I needed them the most. Just walking right into my house, Like my mother in law Helen. OK now my eyes are watering up. SHe's my angel. She shows up sometimes daily to clean my filthy house, feed my hungry babies, wash our dirty clothes and put a smile on my sad face :) She always seems to know ever since i've known her the exact moment when to show up or call. I can't wait to repay her when she is in need. I can't wait to give it all back and serve her all I can :)
Friends and SIL's take care of my kids, cleaning my house, doing my laundry, bringing me fresh baked cookies, pink fluffy robes (thanks Jenny:), showing up to put up my halloween decorations up which really cheered me up (thank you Cindy:), coming over to bake my babies birthday cake and prepare the food and clean the house for a small intimate party that evening (christine, helen and especially my sweet Kira:) even taking my babies to school. THe list could go on and on and so could the thank you's. I even have a wonderful SIL (sister in law) who took over the schedule with my kids, she has it all typed up and assigned out and someone shows up everyday to get them ready and out the door and then they bring them back in the evening (thank you Michelle:). Unfortunately for my babies there rowdiness and energy level and needs are far beyond what I can do right now, to get a drink and go to the bathroom exhausts me for the entire day.
THis passed week has been especially lifting. I feel like a lot of my prayers and concerns have been met and taken care of. The loneliness I felt has melted away and has been replaced with immeasurable love and support. I even have a wonderful neighbor who just happens to be a Dr. who just happens to have the same heart condition who so happen to have gone to the same specialist as me who comes over to check on me. He's been a major comfort and an angel.
What can you do? I know a lot of you want so much to help, I really am doing ok and have a lot of help and support here so you'll be doing me a favor by not worrying and know i'm very well taken care of. I know we're all going through something right now. When it rains it poors. Focus on your family, reach out to help someone close to you, don't be afraid to show people what they mean to you and how much you love them. I have to admit that is ONE THING I DO NOT REGRET. If I were to lose this fight, which I won't but If-IF i were-I'd leave knowing anyone who mattered to me, who was special to me would know it. Relationships mean the world to me and i'm glad i'm not afraid to serve, to love and to appreciate. I will be doing ten million times more so everyone better get used to it and not complain. It's how i'm made, how i've been molded over the years. Even though my heart is really broken medically, it's full and bursting of love at the seems from the outpoor of love, letters, call and prayers that have been put in my name. I have to admit and share with all of you that I truelly felt it. The week I needed it the most there were family fast going on and my name was put in temples all across the world and I felt it, I felt my soul being lifted and embraced by my Savior. I feel healed spiritually and emotionally and I know that when you have that, then physically your body can handle more, can fight better and can overcome.
I can't wait to be back.
God bless!
Love,
Marianne
p.s. i'll be updating months and months of blogging soon. and keep you updated of course.
p.s.s. I hope I haven't offended anyone by not telling them what was going on or by saying I was fine or that I didn't need anything when I clearly just opened my guts on this dang blog. SOme how I can always be honest on here, like i'm writing in my personal journal and allowing those closest to sneak a read. I just didn't want to worry anyone and it was very very hard to finally give in and allow people to help, to admit I needed the help. Some of you I DON'T WANT helping because I know you need to focus on your self or your family and I know in the end i'll be ok.
