Patent Foramen Ovale (PFO)

I am now on my laptop and can type with both hands! I started to re-read that harried phone post, and couldn’t make it all the way through. So sorry about all those typos. I might repeat myself a little here, but hopefully it’ll read a bit better.

I spent two nights in the hospital, and as I think I said, we were actually pretty delighted when the echocardiogram found the hole in my heart (officially called Patent Foramen Ovale or PFO for short). Thinking that explained everything, we (not-so-patiently) waited for the doctor to make his rounds that night, anticipating a lot of plan-making for appointments with cardiologists and surgery. Around 10pm we found out that the doctors only make rounds once a day, so we went to bed.

Around 8 Saturday morning the doctor came in, but behaved in a rather confusing manner. Instead of setting up a move to the cardiology floor or at the very least, referring me to a cardiologist, he basically waved away all my strange blacking out episodes with a shrug telling me, “My wife passes out all the time, I just catch her.” He breezed over the hole in my heart as well, saying I should just take an asprin every day, and eat more salt to get my blood pressure and heart rate higher. The next thing we knew we were being discharged.

It was nice to get the IV out of my arm, but as we went out to the car, I had a few more of those very weak, black episodes. Eric gritted his teeth as he caught me, and said, “My love for that doctor is growing less and less with every passing second.” He helped me into the car, and we headed for home. I was at a bit of a loss, we were so confused. I had the thought to call our family doctor, but figured he wouldn’t be in the office on a Saturday. I called anyway, and to my surprise he was there! After a short explanation, he wanted to see me right away.

Instead of driving home, we drove there. The doctor from the hospital told me he would not be sending any files over to my family doctor, so I’d filled out a medical release form, but the nurse said my records wouldn’t be completely compiled yet. I was surprised to find my family doctor had a pretty good sized report, though incomplete. As he read through it we felt our frustration towards the hospital doctor melt away. He had clearly been very thorough and his notes read much better than he communicated things in person. It appeared it was just a communication / bedside manner issue. My family doctor communicates much better and we left with a plan and feeling much more at ease — if still facing some bizarre stuff.

My family doctor was very concerned and said all the cardiologists he knows do not take PFOs lightly and will want to repair them; and is going to call around to see who can fit me in the soonest. I should hear from him tomorrow about the appointment. He felt the risk of stroke with a hole in your heart is very great, and there’s no sense in waiting for one to happen before you repair the hole. There is still a big question mark about the passing out episodes. Both the hospital doctor and my family doctor didn’t know of any connection between fainting and a PFO, but I have found lots of personal stories online from people who had PFOs who were feeling like they were going to pass out / black out. My family doctor said a specialist may know better what the connection might be. My heart skips frequently, sometimes two beats at a time. My aunt (more on her below) had a theory that with an already low blood pressure, when my heart skips a beat or two, that’s a whole dose (or two) of oxygenated blood that doesn’t make it to my brain. It has no choice but to shut down the system until the next heart beat pumps oxygenated blood back in. That would explain why the episodes are often so short, but it’s only a theory.

I spent over an hour on the phone with my aunt (my dad’s sister). She too had the hole in her heart and suffered hundreds if not thousands of strokes before finding the hole and getting it fixed. Her MRI looks like a starry night sky, there are so many white spots showing the damage from each stroke. It is truly a miracle she is still alive. We share so many of the same symptoms and problems, it was very vindicating to be able to talk with her. I felt like I wasn’t going crazy. There appears to be quite a connection between the migraines with auras I get, and PFOs… though having the PFO repair for migraines alone is still not an approved or proven course of action. She recommended strongly that I do not waste my time with doctors up here, but visit a PFO specialist in Utah. However, on further investigation it appears that doctor has retired.

I spent last night researching doctors that specialist either trained or worked closely with, and found several. I’m looking forward to calling a few to see what my options really are. There is a lot of information online about ‘qualifying’ for PFO repair, in that I need to actually HAVE a stroke before I can get the hole repaired… which kind of boggles the mind. Why wait for a potentially fatal stroke if you can close the hole and prevent one???

On how I’m feeling: My head is consistently aching… not a full on migraine, but a very persistent, splitting headache. The strange dizzy spells, which are better described as a complete loss of energy so great that I just go boneless and collapse, continue and occur regardless of my position. I can have them standing, lying down, or sitting. My family doctor has essentially placed me on bedrest. I’m not allowed to walk around in case I fall and hurt myself or someone else. It’s very annoying, but I do understand the precaution. Whenever I have felt well enough to walk around a little, I’ve had a big episode and collapsed on the floor. Best not to push my luck.

I am worried about a lot of things. I’m afraid of having a stroke, afraid I will have to fight to get the care / repair I need, afraid of what these black out / collapsing spells mean, whether or not they are connected to the hole, and if they aren’t, what other mysterious ailment is going on and how will I find out what it is? I am of course worried about the financial side of things, though trying to trust in the Lord and recognize that family and my church are able to help. I do have peace and a calmness that keeps me strong.

Thank you for caring about all of this, for letting me write it out here. I’m so grateful for family and friends (Kat, Tracy, and my sister have shared a little bit about all of this too) — I know I sound like a broken record, but I don’t know how I’ve ended up with this amazing circle of friends. I don’t deserve them at all, but am thankful they are willing to come sit with me while I go to the bathroom so I don’t pass out on the toilet, spend hours at the dreadfully slow ER, and smuggle treats and amenities into the hospital for me. My mom, though in pain herself from really bad knees, is taking care of my children, cleaning my house, and bringing me food on trays. My husband is holding everyone together, working hard in his new calling at church, and cheerfully fielding so many questions and inquiries about me– his new role in the Bishopric will turn him into a people-person-extrovert yet :o)

My children are doing okay. We didn’t share too much about everything because we didn’t want to scare them (especially my oldest), but I gave them a run down yesterday. I never thought I’d say I was grateful for all those hard months being pregnant and sick, but I am very grateful now that my children have witnessed me very ill, and trust that I will get better. Mommy passing out? No big deal, we remember when she couldn’t get up for days, and puked constantly. I’m grateful they are at peace, and are not stressed out.

Ha. I guess typing with both hands is so much nicer than phone-typing that I’ve written a novel. I’ll keep you posted, thanks for tuning in to the ongoing drama of my health.

xo