my eye,...oh my EYE !!

It won't stop tightening up and twitching. I feel like I'm constantly winking. Now, I'm not winking at you. I don't think you're cute. I don't think my muscle spasms are cute. It's very tiring! My vision has improved over the past few days. However, my eye spasms honestly have not.

Is there a secret out there? Some home remedy that will cure me from this constant spasm?

Today has been a little rough. I had a lingering (but thankfully not severe) migraine, feel over-tired, and have been having palpitations off and on since this afternoon. I prefer not to feel my heart, because it makes this more "real" and reminds me that I have 2 nitinol and goretex disks inside my left and right atria. Oh right, and I have what, several liters of medication running through my veins? Thanks IV infusion - you're sort of helping, yet making me feel whooshy. I should be thankful. People pay good money at oxygen bars and for supplements for "increased brain power" and such... Thank you insurance, for paying for my new O2 concentrations.

Vent over. It's been a rough day... Today, I'm thankful for coffee heathbar Ben & Jerry's ice cream. (I know, it was peppermint patties in my last post, and ice cream in this post. My world doesn't revolve around food - but sweets always help.)

Night!

inflammation surrounding blood vessels in brain

...sounds scary, huh? I chose not to ask what could happen if I opted out of Thursday's IV infusion.

Keep reading. It only sounds bad.

Thursday I went to see the neurologist. Originally I was scheduled to go on Wednesday, but there was a computer glitch and I got pushed to Thursday.

Long story short... I have swelling around the blood vessels in my brain. This is why I've been seeing spots and have had blurred vision. I was hooked up to IV meds right in the office, and sent home with a purse full of sample pills and new prescriptions. I was told it could take several days before I start to feel relief, and may take months before I actually feel like myself again. I think I am slowly starting to turn a corner.

Although "inflammation in brain" may sound alarming, it points to something positive. It means that since closing the holes in my heart there is a LOT more oxygen flowing through my veins. The change in pressure and blood quality has caused my brain to sort of freak out and fire off. Hence - disco light vision, the constant presence of fireflies, and bubbles of light. I'm not worried. I'm just happy that they finally know why my vision wasn't improving, and know how to fix it! I'll go in every 30 days for IV infusions. This will continue for months... I need to find out if they can do it at a local hospital, as opposed to going in to NYC so frequently.

I received a transcription from my surgery in the mail a couple weeks ago. I'm still not 100% sure if I was too out of it to absorb information post-op, or if my doctor and family casually kept from reminding me, the details of what happened... Apparently the Helex device got stuck (several times) between one of my ASD's and my aneurysm. My doctor had "significant difficulty" aligning the implant due to the location of the aneurysm. The transcription says that he had to do a "transseptal puncture" (punctured a hole in my heart) to affix the device into place. Haha, I thought he merely slid it into place. :)

I also read that "The intracardiac echo demonstrated a localized aneurysm of septum primum with multiple fenestrations, as is sometimes the case with this anatomy. The net some of left to right and right to left shunting was substantial. The left to right shunt was large, and directly lead to dilation of the right-sided chambers." I vaguely remembered my surgeon telling me that one of the reason it was so important to get my heart fixed ASAP was because I had this "bilateral" shunting. Apparently most heart defects merely cause shunting in one direction. When there's shunting in 2 directions, it creates turbulance, and can weaken the septum. (The septum is the wall separating the heart.) The bidirectional shunting caused my septum to become mobile - which is another reason he had a difficult time inserting my Helex. Everything makes sense to me now.

I'm happy to report that although I still have slight chest pain from time to time, my palpitations are almost completely gone. This is likely due to an increase in one of my medications. It's great to not feel my heart beat. When it's beating normally, I don't notice it. Hopefully one day I can be weaned off of these meds and still have a regular heartbeat. It's a long shot, as post-implant I was told my sinus tachycardia (irregular heart rhythm) would get worse, not better. So... I'll focus on the "now" and be happy that medication has made me almost completely symptom free.

All of the medication I'm on seems to be what's keeping me groggy. I still don't wake up feeling "refreshed". Ugh, okay, the non-stop eye twitch is also keeping me from feeling like my old self. The neurologist gave me muscle relaxers for that. If those don't work, they want to do... *gasp* ... Botox. Yikes! I spoke with my cardiologist and he's all for it. The twitch is likely related to the vision issue. Botox has been approved by the FDA for use with such problems. (Don't worry, my jaw is still resting on the floor too.) I can't quite fathom having BOTOX at the tender young age of 25! If the twitch lasts for another month or two, I'll consider it...

So, where do we stand right now? We're waiting to see if my vision improves this week. We're also hoping that the muscle relaxers help the muscle spasms in my eyelid. I'm all scheduled to go back for my 30 day IV infusion, and have another post-op cardiology appointment scheduled. Keep your fingers crossed that there is visible tissue growth on my implant! As of my last echocardiogram, there was no visible growth. I'm not allowed to have my teeth cleaned until there is full tissue growth over the implant - which could take 6+ months, ugh! (My implant is partly made of goretex. It irritates the heart and causes it to grow a layer of tissue around it. Encasing the device. My Helex is 35mm.)

I'm still trying to take the good out of the small things in life. Even though I have to take time off from work to make it to all of my medical appointments in NYC, I'm thankful that I live close enough that can see the world's best doctors in the afternoon, and sleep in my own bed that same evening. I'm thankful that these doctors had the resources on Thursday to hook me up to IV meds right in their office, rather than send me to some sort of out-patient unit at the hospital. Most of all, I'm thankful for the fact that my husband came home from the gym today with a bag of peppermint patties for ME!

I know, the Tiffany and Co bracelet you have on your wrist is prettier and fancier than the medical alert bracelet I have on mine. However, can yours safe your life?

I'm a blogging slacker :-)

I know, I haven't posted in a while, even though I said I would. I've had enough energy to work full (sometimes even long) days since we returned from vacation. I do still get somewhat winded, but in general, my energy level is improving.

I see the neurologist at Columbia on Wednesday morning. We're hoping he'll be able to give me some answers about my vision. Off and on throughout the day things glow purple, images blur, and white and black spots/bubbles float by. That's tiring in itself. This "aura" could last for months. However, there's a chance it may be treatable with medication. I'm anxious for it to stop. The only type of episodes that seem dangers, are when my vision blurs. This happened last weekend while i was driving. I had to pull over and wait for it to pass. I still don't quite understand how my heart and circulation are having such an impact on my eyesight.

I received a transcription of my surgical dictation. (Sounds like a tongue twister, huh?) Apparently there are a few details which my doctor failed to tell me while I was in the hospital. The implant got STUCK against my aneurysm several times as they tried to insert it. In addition, we initially thought that he had to sort of push through one of my existing 5 holes (atrial septal defects) to affix the implant into place. However, he actually had to puncture a new hole in the wall of my heart to affix the helex. He poked a hole, in MY heart, and then screwed something into place. Yikes.

I'll update with more detail once I've seen the neurologist.

Thanks again for your support!

I'm alive.

...and will post tonight. I promise.

I woke up, and saw the world in a different light.

I've certainly come to realize over the past 2 months, what's important in life. Mainly, I have learned that the majority of the stress we experience, we create ourselves. Yes, there are deadlines that need to be met. There are projects that need to continue their acceleration if they are ever to move forward to completion. However, those daily tasks, projects, deadlines, they can all be paused and resumed. The pieces can always be put back together or repaired. Even if that means taking a new route. Most importantly, the cost it takes to piece things back together, is certainly less than the cost to yourself. The toll it takes on your own physical and emotional well-being. Which is what really matters.

Life, on the other hand, can't be paused. It's ongoing until it's over. Life and living should always be your priority. Don't let "things" ruin you day or hang over you like a gray cloud. The world never falls apart, regardless of how bad things get. Life however, does end. So make the best of it.

The world looks so different to me now.

I'm home safe, and feeling refreshed.

Not only did we have a great time, but we had perfect weather and were able to maneuver around all of the hurricanes that recently hit the gulf and southern east coast. We diverted to Key West instead of the Caymans our first day - which was a nice treat, as neither of us had been to there. Our other stops included Cozumel, Mexico (where we got in the water with dolphins), Belize (we went on an air boat and got to see wild crocodiles), and Honduras. I'll post pictures later this week - but for now, will leave you with a few from yesterday's Coast Guard medivac vision to our ship. We aren't sure what happened (and are very thankful it wasn't me!) but someone on board got very ill. We got to watch a helicopter hover over the ship, a medic propel down a line, land on our ship, and then send an ill passenger up in a basket. They flew to a local Coast Guard boat and took the patient to the mainland.


My palpitations are better, my visioned has improved, but I'm still having aura episodes and eye twitching. I'm also on antihistamines every few hours due to my delayed allergic reaction to Plavix. That's making me SLEEPY!

G'night,
Rachel