**This is waaaay too long for anyone to actually read, and is really just for the benefit of my journal! I'll post a hopefully shorter rundown so don't waste your time... unless you really want to. ;)
This last four and a half months since passing out in July have been some of the most startling, frustrating, and humbling of my life. So much has happened, and not happened, & I have been urging myself to write it all down, especially since my memory is so inadequate, but the task has just seemed so overwhelming. And overwhelmed has probably been the #1 adjective of this experience. I started a detailed post about all the play by plays of all the crazy health issues that have come up for me since that night but finishing it just seems like too much. Complete resolution hasn't come and I have accepted that it likely won't... however, after never ending visits to all kinds of doctors and being put through countless tests, we've found many pieces of this crazy puzzle. Meanwhile, I have so many other happier things I want to journal about (like my kids!) and I just want to get this done. So here is just (hopefully) a brief overview of what took place that night and the saga that has dragged on through the months.
July 23rd 2:30 (ish) a.m.
I awoke to find my head wedged between the small space of the toilet and the wall. Feeling as though I literally might drop dead any minute due to not just thundering palpitations but the feeling like my heart would thump itself right out of my chest, even in my groggy state of mind, I felt I didn't have time to waste. I could hardly breathe and I still felt as though I were spinning, and I felt super nauseous. All I could think was that I needed to find Chris and get help fast. I honestly don't know how I had any strength to semi-stand, but suddenly
I felt as though someone were pulling me up, even though no one was
there.
*Later, in relaying this incident to my Dad who had been on a trip to CA, he asked me about what time this took place. I told him and he said that within an hour or so of my fainting that very night, he had a very vivid dream that my brother, (who passed away several years ago) and I had had a really detailed conversation. He said that his dream was so lifelike that he woke up from it and couldn't go back to sleep the rest of that night and paced in anticipation of finding out what we had talked about, since the dream had felt so real.
I'm not sure that it's pure coincidence that we each had these experiences on the exact same night, about the exact same time...I like to think that Michael really was there, pulling me up. :)
I crawled my way around and out of the bathroom. I was relieved
to see Chris and I collapsed in his arms and fell to the floor once
again. He had apparently been in with the baby, went downstairs to grab
something, had heard me fall and came running. I remember thinking
clearly in my head what I wanted to tell him, about what had happened,
how I felt as though I needed help asap, but I couldn't verbalize much
for about 30 minutes. I was so frustrated that I couldn't make my words
come out. All I could say between my bursts of breath were, "Help me"
and "My heart!". I remember thinking we needed to get the hospital NOW,
but he wasn't for sure what to do - it was 2:30 a.m., we had three kids
asleep in bed, and he had no idea if I had just simply passed out, or if
something was really wrong.... neither of us love to inconvenience
people so I'm sure he didn't want to bother people at 3 a.m. There is no
question if it had happened during the day that we would have rushed to
the hospital. My breathing finally stabilized some and my heart
eventually slowed down. It's all a bit of a blur but after (another two
hours or so?) I finally was able to fall back asleep.
I stayed in bed for the next two days. I would have gone to the Dr. that day, but it was a Utah holiday, the 24th of July and after calling around I realized no one was open. I really wasn't sure what happened had warranted an ER visit (& bill) so I just stayed in bed for the next two days. Plus Chris had to go to work and I definitely didn't feel like I could drive, let alone walk down the stairs. Chris dropped the kids off at the Hansens and I was able to stay in bed. I was absolutely exhausted, felt as though I had run a marathon and any time I moved from my bed I would have a slew of crazy symptoms.
Still feeling terrible on the 26th, I went to an Instacare. After summing up the episode to some sort of nerve (vagal?) that can
cause fainting, she wanted to do an EKG- just in case. The nurse did it,
left the room baffled and came back again to redo it. After doing it a total of 4 times, the last time by the Dr., she told
me that it was indicating that I may have had a recent heart attack and
to go the hospital immediately for a blood test to confirm.The test result came back negative but she told me to stay down until I could get into a cardiologist.
That was just the beginning of an onslaught of Dr and hospital visits, and tests. At the ER after experiencing way too much chest pain the following Sunday, the doctors thought I had a blood clot (indicated by an abnormal blood test), which brought on a CT scan of my head and torso, which came back clear. My pulse would shoot through the roof upon standing. I had strong chest pain for months on end. I did a treadmill stress test the following week and my oxygen dropped to 64 (normal is 90 and above) and the cardio PT insisted I must have a hole in my heart. They put me on more bed rest until I could get an echocardiogram with saline bubbles the following week. More waiting. This c
onfirmed a small shunt (hole) in my heart, but Dr.'s weren't completely convinced it had caused all my continued trouble. I literally spent about 5 weeks on mostly bedrest. They told me I might have a stroke so not to do much, especially lift anything. The night of my failed stress test I could hardly breathe, and they had Home Health deliver oxygen tanks to my home. That was such a low for me. I remember thinking, "What in the world is happening to me?!" as the Home Health guy set me up on the oxygen tanks in my bedroom. For at least the next 10 days or so my body wasn't great at breathing on it's own and I relied on the oxygen big time. It was as though my body would forget to breathe on it's own if I wasn't consciously thinking about it. It was such an awful feeling and something the doctors once again couldn't explain. My brain felt like scrambled eggs and just the act of walking to the bathroom brought on shortness of breath and chest pain. Just lying in bed I felt like I was spinning but to get up and walk, the vertigo was unbearable. I couldn't watch TV (very little), it was just too much for my brain to take in and forget about reading. I couldn't focus and it was as though my brain was overwhelmed to just sit there... adding any sort of stimulation was just too much. At an ER visit, the on-call pulmonologist thought I had Pulmonary Hypertension, a fatal diagnosis. We had already looked at this as a possibility because it was the only thing that exactly explained all of my symptoms. This of course devastated me and the I couldn't help the thoughts that I might not live to see my kids grow up. So dramatic but the possibilities were just overwhelming and even moreso was the fact that my symptoms just continued to persist for weeks and even months, with no for sure explanation, and Pulmonary Hypertension was the only one that totally explained all of my symptoms. I couldn't drive my kids to school for weeks and didn't hit the grocery store for even longer. I could barely function. At a follow up with the pulmonologist (who was baffled like many of the specialists I saw), he referred me to an ENT to assess my persistent vertigo. I thought that I knew what dizzy was before this experience, but I had no idea! IT. WAS. AWFUL to have this crazy vertigo (accompanied often with shortness of breath and chest pain) permeate my body. I finally saw the ENT who I had zero faith in to help me (I mean come on, an ear nose and throat doctor was going to solve this mystery?), his findings however were some of the most relieving that we have received in this whole process. He ordered more tests which brought on even more waiting - the story of my life. 2 weeks later I had the vestibular testing done at the hospital that he had ordered in Provo and it was found that my
INNER EAR had been thrown off - one 20% off from the other. This likely happened the night I passed out, by lack of blood flow to the brain. Some doctors believe though that it and the fainting incident itself happened due to some crazy virus (that they could never name).
Finding out the likely culprit of the vertigo was SUCH a blessing!!! So I was sent to a vestibular physical therapist who I saw for about 6 weeks and who taught me PT movements to do (quick head movements) to retrain my brain as to it's new normal. The inner ear is what controls your whole vestibular (balance system). So strange, I know, but if the inner ear is thrown off, so is your whole brain, and it can cause an onslaught of problems, especially of course the vertigo, the blurriness of vision I was having, inability to think clearly, memory issues, etc etc. It pretty much can make you feel AWFUL! My physical therapist, Quinn, was amazing and lucky for me an expert in vestibular diseases. I know he's not an official "Dr.", but he was one of the most knowledgeable, helpful healthcare professionals I have seen in those whole saga. I am so grateful for the help he gave me and after about 8 weeks of therapy to finally have MOST of my vertigo cleared up. I finished with him in November and I still feel far from normal but I will take this any day over what I experienced for months on end!
So as to what actually caused the passing out in the first place, we don't know for sure. Maybe the hole in the heart, that was accentuated with a little stress at the time... some doctors say I had a virus ( I think this is code for "we don't know")... I still worry a little that something with my heart has been overlooked... I mean, I DID have four abnormal EKG's on top of the small shunt (hole), plus I had a scary incident with my heart with my 2nd pregnancy. The next step would have been to do a heart catheterization test (which is horrifying - I watched a video on it- they can't put you out for it and it's a very bloody procedure), but after about 8 weeks I was starting to feel somewhat better (minus the vertigo), so we along with the doctor decided it wasn't a good idea to do something that invasive when I felt I was improving.
After I finished up the PT in Nov, I went back to my newly established general physician who did a slew of extensive blood tests on me. I have had recurrent UTI infections through this whole process. We also found that I was severely deficient in Iodine, Omega 3, and Vitiman D (everyone is deficient in this unless they work outside all day or take supplements). And just this week we received word after some hormone testing that I am really low in several hormones, one of which is
progesterone, which can cause... yes - heart problems! I am going to start some therapy for those in a few weeks. (BTW, I highly recommend that women get a full hormone work up done- it can answer so many things including weight issues, fertility issues, memory problems, palpitations, moodiness(of course)....) The doctor still doesn't think that these explain everything that has happened, including and especially my low oxygen, but that they are another piece of the puzzle. And I am happy to have answers to any pieces that I can correct!!
SO after four and a half months I finally am feeling so much better! I am hopeful to feel all the way better soon and hopefully I will after I start this other therapy.
I am grateful for the beautiful life that I have been given and am so grateful for my husband and sweet kids, and for more time with them. For a while, it was kind of up in the air. I guess it's truly always "up in the air" though, isn't it? We just never know how much time we have. I'm grateful for the opportunity to live "normally" again and to not take for granted the many blessings I've been given!
I'm grateful to have finally written this down, even if it is a rambled mess that doesn't make much sense. It's better than nothing though and I'm ready to blog about more important things! :)
