About 20 years ago, I was sitting at my parents house watching TV, and my son, who was about 1, was outside playing with his grandparents. I noticed that part of my vision was missing. The TV was distorted. It was almost like my eye was asleep. After a few minutes, it corrected itself, so I didn’t think anything about it. About 10 years later, it happened again. I was watching Days of Our Lives (my favorite soap of all time) one Saturday morning, and was thinking to myself, “who is Bo talking to?” I slightly turned my head and could see the other person on screen. It’s like some one just cut out a section of the screen and butted the two remaining pieces together seamlessly. Imagine taking a photo, cutting out the middle section, and then putting the two side pieces back together. That’s how my vision was. It lasted about 3 minutes. I called my doctor and set up an appointment. His first worry was a tumor. He set me up for an MRI. I stressed about it until the day came to have the MRI, which came back clear. I didn’t worry about it again. The MRI was fine. About 4 years ago, it happened again. We were laying in bed watching the Cowboys play. I leaned over to set the alarm and looked back at the TV to see the players floating down the field with no legs. I squinted and blinked, but Dez Bryant’s legs were gone!
I called the doctor back the next morning. He set up another MRI, but this time he wanted a neurologist to take a look at it. He thought it may be MS. I went to the neurologist’s office, and he did a few in-office tests, looked over my MRI, and ruled out MS. When he asked me about my symptoms, he suggested I do a bubble study test. They led me to another room while my husband sat in the waiting area. They gave me an IV, strapped this little do-hickey to me, put a stethoscope up to my temple, and pushed a syringe filled with air bubbles through the IV. As soon as he pushed those bubbles through, you could hear a series of chirps. It was positive. I had a PFO (Patent Formane Ovale).
A PFO is a birth defect that causes a hole in the wall between the heart’s upper chambers (atria). When a baby is born, their blood pressure is supposed to rise high enough for the flap between the two chambers to seal off. If the flap is open, a blood clot or trash could go through the hole and lead to the brain, lungs, or be stuck inside the heart, causing either a stroke or a heart attack. Had the neurologist I went to not had the exact same thing and knew what to look for, I may still not know what is going on in my body. I thought “GREAT!” I already have stroke running through my family (one grandmother, one aunt, and two cousins, all on my moms side of the family). “Let’s add a greater risk factor for it to the list!” I was told to get a cardiologist. I was 38. Every worse case scenario ran through my head. As we left the office, my husband asked how the test went. We were in the elevator with two other people, and I couldn’t speak. I knew if I opened my mouth, the tears would escape my eyes, and I didn’t want to cry in front of strangers. Once we made it to the parking lot, I broke. My worst fear. My grandmother was bed-ridden for years due to her strokes. I witnessed my mother taking care of her for years. Feeding her, making sure she didn’t get choked, cleaning her up, swabbing her mouth with glycerin sticks so it wouldn’t dry out. I watched her change the bandages on her leg–amputated from having bed sores.
I didn’t want to be like that. I didn’t want to be bed-ridden. I didn’t want to eat through a syringe. I didn’t want to wear adult diapers. I didn’t want that to be the experience my grandkids had with me. I had already sealed my fate in my mind. This was my future. I found a cardiologist and went to my first appointment. He explained what it was, that is was a genetic factor, but there wasn’t enough study on it to know if it caused any other symptoms. We had to find out how big of a hole it was, so I had to go back right before Thanksgiving to have a TEE done. I was scared to death. I’d only been put to sleep one other time in my life, for a DNC after a miscarriage. They ran a scope down my throat and into my heart to measure the size. Once awake, he told me it was a significant-sized hole. Due to the lack of study, the effectiveness of having it closed with surgery wasn’t really known, nor was how long it would work, or if there were any long term side effects. And, without a stroke or heart attack first, insurance wouldn’t pay to have it fixed. I went home and did what every doctor tells you not to. I Googled it. And Googled it. And Googled it some more.
I found out that sneezing, coughing, and lifting heavy objects causes the flap over the hole to open–meaning, a blood clot or piece of trash could easily slip through the hole during that time and cause me to have a stroke. Before we had learned I had this condition, we had signed up for a gym membership. Every time I went, I would worry about it opening up. I was super cautious about it. During my last visit with my cardiologist, I told him all of my fears. I told him I was scared to work out, to lift anything heavy, to sneeze. He told me that was normal–that all of those factors could actually happen, but…. Was I scared every time I drove that I would be in a car wreck? Or every time I went to swim I would drown? He told me I can’t live in fear–that I had just as likely a chance to be killed in a car wreck on my way home. Was I going to just walk every where? Of course not. He reminded me that I have had this my entire life and was lifting things, running, coughing, sneezing and nothing had ever happened. It didn’t mean it wouldn’t, but I shouldn’t stop living because I was afraid of the unknown.
And, he was right! I can’t stop living because of something that may or may not happen. I couldn’t limit myself because of “chance”. So, I started living again. I take 325 mg of aspirin a day keeping my legs a colorful shade of blue and purple. Gotta keep those blood clots down. Other than that, I laugh hard, sneeze a lot, and nothing will stop me from picking up my beautiful grand babies. There will always be fear of the unknown, no matter what the situation. I can’t sit around and wait for it to get me. I have to live as much as possible while I still can.
My advice for anyone who has recently found out they also have a PFO is, don’t let it stop you from living! Take your precautions, but don’t become a precaution. Live, Love, Laugh, and Sneeze! Learn the early signs of stroke, and let your family members know what to look for, too. The sooner you can get to a hospital after having a stroke, the better your odds are to fully recover. Get into a PFO group. There are several on Facebook you can get into to ask questions or see other people’s experiences with it. If I have a stroke, I will deal with it then. Living in fear is awful.
For more information on PFO, visit http://pfofoundation.org/education/.