Sep 19, 2009

My health secret, I hope to save a life

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.


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.
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.
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!


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.


malleygirl said...

Thanks for sharing such a personal, difficult time with us all. We love you and you and your family will be in our prayers. Good luck with the months ahead. You do have a great mother in law! I love and miss Helen!

Forever Owen said...

Thank you, Marianne for opening up and sharing. I am grateful you shared the medical info as well. I will be praying for you and your family and I am so happy for you to have the relief of knowing what's going on with your body so you can recover! I know what you mean to be thankful for your family and their support! Please do keep us updated. I will be one of many in your cheering section!

Anonymous said...

"It's really hard to know what to say to you. You're like the nicest girl in the world and I think it sucks SO bad that you have to go through all this garbage, and for so long now. It's got to be torture not being able to do everything for your boys, that would really get to me. I'm so relieved you found out exactly what the problem was and I'm so happy you'll be back to normal here in 6 months or so. I know I've been horrible at keeping in touch but I really do miss you, you left such a good impression on me when we lived at Stone Canyon. You were just so darn sweet and giving and so caring, it seemed as if nothing could get you down, you were always so happy. I wish I could be like you! :) I still remember that AWESOME chicken/italian dinner you made for Steve and I when we went to your place for the first time. I thought I was a good cook up until I ate that. :) Anyways...I guess I'm just saying that you're the greatest and I'm sorry that you've been suffering and you bet your cute little bootie that you'll be in my prayers ALL the time. Kiss your sweet boys for me and tell your hubby hi. I love ya Marianne! Good luck!"

Anonymous said...

I feel so sad I havent known how sick you've been I woulda tried to do something to help make you feel better! I feel like maybe I should get checked out with all my headaches, dizzy spells, fatigue etc.Thank u for all the incredible info. YOU are an amazing woman and their are tooooo many people who need & love you, I am so glad you were blessed to know what was going on before it was too late. I sure do miss you sweet, fun friend! I will be praying for your full recovery and know all will go well for you. Just know Im thinking about you and keeping you & your family in my prayers! LOve you, Jana ♥

Anita said...

Marianne,I am so sorry, I know you will recover from this because you are who you are. Thanks for posting this you could have just saved someone else. Really, if you need ANYTHING at all please dont be afraid to ask. I know you have other family and friends to help, but just know your bunko ladies are here for you too.
love ya girl!

Anna said...

Thanks for sharing Marianne, I'm so sorry you've been so sick. Just wanted to let you know your in my thoughts and prayers and I hope the best for you and your recovery.

Anonymous said...

Thanks for sending me the note to read your blog. I cried as I read it! I am sorry you are dealing with this. Thank you for sharing with us and telling us to tell others. I have actually posted your story on my moms website and emailed to many friends. My brother, Mike, who is in school to be a Physicians assistant(In Arizona) was thankful to read it so he can hope to catch that in someone else. Please let others help you! Dont deny others the blessings they can recieve from service. I am keeping you in my prayers. I also loved your post on things we donet know about you etc. You are an amazing person! Love you and wish I could be there to help with something.
Love and Light,

Anonymous said...

Marianne you are such a sweet example in my life! I appreciate the words of kindness! I read your blog today and cried! I'm like you and it is easier to be open with my feelings to a blank screen. Please don't be mistaken I have my negative moments. My sisters and mom can attest to them as they are the ones I am usually venting too. Hence, Jamie's words of council.

I thought about you the other day when I was in Wal-mart. I saw all of the fall decoration and had to contain myself. I've been wanting to put out my stuff and decorate our new home. I usually try to wait until the last week of September so Nathan doesn't get too sick of it all. I never thought I'd know someone who loves it more than me and although I didn't comment I was so tickled when I read on facebook that your sister-in-law came over to decorate your home for Halloween! I just know it brightened your day!

You are definitely in my prayers and I am so thankful that you were able to be diagnosed. I cannot fathom this world without your beautiful smile in it.

Always, Jodi

hendricks14 said...

Marianne, Thank you for sharing your story with us! You will definitly be saving lives!!! You are such a fighter, I love that about you. I know you WILL make it through this. I am sorry you have been suffering for so long. We are praying for you and your cute family.

Happy Birthday to Lochlan!! We thought about you guys last night as we celabrated baby Marianne's birthday! Love you guys and miss you!

Janeice said...

Glad to hear you know what is going on and that there is hope on the horizon! I can't imagine how hard things have been for you! So glad to hear that you have so many around you that are helping you get through this!! Hang in there and I will pray for a fast recovery for you!!

Anonymous said...

Marianne, You are such a inspiration. You where diffently put on this earth to help others. My girl friend has some of your symtoms and I am sender her some info. I love you and your family. We all here pray for a fast recovery. I only wish I lived closer to help you and your family at this time. XOXOXOXO
Kim Grassle

Marianne said...

Thank you guys so much for your comments. The next day after I wrote this and posted it, I went back through and read it and felt SO embarassed that I opened up so much. I still do feel embarassed but if it sends someone to get checked out then i'll get over it. Thanks again so much everyone. I promise to be back to my laughing silly doing self soon :)

Amanda said...

I already told you I forgive you for my birthday lunch, it really didn't even phase me when you started crying. I love you for who you are and the open book that you've always been to me. I know there's many more chapters in your book that I don't know about yet but there will be time. I am so sorry that you are having to fight this right now but you are superwoman, remember, so you will get through this and be an even better and stronger superwoman after your surgery. I will continue to pray for you and help you in any way that I can. I love you!

Anonymous said...

I read your blog a few days ago and just didn't know what to say. I'm so sorry that you are going through everything that you are going through. Remember that when you come out of this, you will be a much stronger woman. I'm glad to read your posts and see that you are keeping a good attitude about everything. You always had such a bright smile that warmed our classroom. I'm impressed by how much you have grown over the past nearly decade - holy cow, I can't believe it's been that long. You have turned into quite a wonderful woman!
I wanted to thank you for your blog. I cried as I read it, knowing how difficult it must be for you to not be active and have your kids running you ragged. I started reading it in the morning, have to admit I was a little emotional and headed to work. That day, my friend's husband sent an email out that my friend was having horrible headaches, feels like some has stabbed her in the head with a knife over and over. She cries from the pain. She has been going through all sorts of tests for months and no answers. As you said, her EEG and EKG came back normal. Surprisingly, her ultrasound does show a hole in her heart. She knew that it was there, has known about it since her 16 year old was born. I have sent her your blog and asked that she read it - which she did. I'm not sure if she will do anything about it. I just got another email from her husband that she was crying in agony last night again so I sent it to him. I hope he takes her to your dr. I really think this might be the answer - I pray that it is. As you said, your blog just may have saved a life - if we can just get her to listen to what you have to say.
Love you kiddo and miss you. I pray for you daily and hope that your surgery goes well. I wish I lived closer so I could help you.

S&F Seminario said...

Hey just wanted to say Dr. Sorenson fixed my heart a few months ago...JULY...while I was in my 2nd trimester. It was a really not scary experience and if you want to talk to me about it let me
My name is Sharon, I'm a high school friend of Michelle Bunnell's

Anonymous said...

Marianne-This is Sandy R. I purchased one of your gorgeous aprons a few months back. I was so sorry to read about your illness and how bad you've been feeling. My thoughts and prayers are with you as you go through surgery and healing. I know our Lord will bless and protect you, and restore you to full health so that you can do all the many things you love to do as wife and mother. Stay strong, my friend!

Anonymous said...

I was stunned to read your blog and see how sick you are! You always seemed like the picture of health :) I was in the temple the other day and put your name on the prayer roll. I wish your surgery were sooner, but I hope it goes well and you're back on your feet, taking care of your family and making aprons soon! You're in our prayers - get better soon.
Sandi M.

The Rollo Crew said...

Wow! I can't believe all that you are going through. We miss you tons down here in Vegas. Love ya will always be in our prayers. I know the surgery will be a success!

XOXO Melanie

Anonymous said...

I can't believe all of the things that you have been through in your life. 10 years ago I remembered thinking "I wouldn't have survived a tenth of what you had already been through". Your entire life has been a fight, a battle to survive, a battle to overcome! And each time you get knocked down, each time someone tries to destroy the sweetest parts of you, you stand up, gather your strength, rely on your faith and somehow carry on. I am so overcome by you and your trials. I know this might be a little too personal but i've read your blog for years and am surprised a little that you keep the bad things out of it, you keep so many trials to your self, so many horrible things that you've had no choice but to face.... and yet you have this beautiful life. You choose happiness, you choose to fight. You inspire me so much. WIth each trial that i'm faced, I think, I know mariane would think this was not even a big deal and she would smile and serve her way through it. and you do, each time, after all these years, what has it been mariane, like 20 years of your precious life you had to FIGHT like hell to survive, I know our Lord sent you to us to inspire us, to encourage us and to instill faith in us. You are my inspiration, through every tough day of my life. I thank you deeply for sharing so many personal feelings, i know their are so many others that you keep for those closest to you and i'm honored to be one of them. If people really knew you, knew what you've survived, they would love you the way I do. They would appreciate you as the true gift to us all that you really are. I will spend my day today crying. Crying for sadness of your illness and crying for joy for your survival. We need you to survive, this world would literally be a darker darker place without your glowing spirit and pure joy that you radiate from every part of you. Bless you my sweet sweet dear friend. I love you more then ever!
Survive, so we can too!

Anonymous said...

Thank You Marianne for sharing. I too know what you have went through. Last September 2008, I started a killer migraine that has not stopped. It has been over 15 months now that I have been at a pain level of 8+ everyday. I did have all the tests done including a PFO. The results of the PFO were good the Cardiologist said the results were normal. I have also had 8 TIA over the past year to. I have also had every test they could do to find out a result to no avail. I just keep hoping that one day they will finally help me to stop this migraine. I do have a high pain tolorence and funtion each day but there are those times I wish I could just curl up into a ball in a corner somewhere. I will just keep on going each day and praying for a solution. Thanks Again! Cath