The waiting game

I'm not sure if all you remember about the congenital heart problems they are trying to address lately, but main it has been a waiting game filled with tests and appointments...with no definitive answers yet. The only thing I know for sure is that I have a PLSVC (persistent left superior vena cava).

Unfortunately, this is rare and there is slim to none information on the internet regarding this congenital anomaly and its connection to other related defects :/ I also have had a bicuspid aortic valve since birth and they mentioned other issues, but refuses to give me specifics until they complete all the testing they want.  I had an hour long echocardiogram and a bubble study (they shoot aggitated saline "bubbled saline" into your left arm, as that is the side of the abnormal vein placement, and watch it drain into your heart so they can see where it goes) It took forever to find a vein, as I am always a difficult stick, but you could feel the movement of the bubbles all through your arm! 5x! It felt so weird :/

My new cardiologist seems nice and she oozes of knowledge. You know those people you can just look at and when you hear them utter a word, you know the are so intelligent. That would be her! Her husband is also a heart surgeon in Nebraska, so it makes me wonder... what in the heck do they talk about at home? Must be a unique dinner conversation to say the least.

 I would LOVE to talk with anyone who has congenital heart defects and how it affects you? They are calling me either tomorrow or Tuesday to decide which test they are doing this week. They said prepare for a cardiac MRI (which lasts 3 hours) Oh boy... I just can't take the waiting game anymore.

I really am wanting to have surgery and tentatively have it scheduled for the 18th of May. My nose is always congested and gives me daily headaches. I know many postsies who have had the procedure and they said it really wasn't bad! I would have my deviated septum replaced, a bone spur totally blocking my sinus cavity removed, and a reduction of something? ha, I don't remember? I quickly tried to mention that I would like the surgery and I have it tentatively scheduled until I get approval from her (and pulmonology and internist, AND a personal appointment with anesthesiology!) WHOA! I've never had to go through all of this before... but hey, at least they are being very prepared to make sure it is safe. When I mentioned it to her, she pretty much shot me down. Her direct words in a very harsh voice... "WHY?! FOR WHAT?" "Ooooh, I don't know, we'll have to see!"


:/ bummer. So if you know anyone who is going through something similiar, please send them my way... I'm kind of nervous...


Here are your questions for the week :)
Hannah: Are you on a beta blocker? How do you handle it?
I am on a beta blocker. I was on metaprolol for about a year but my breathing is very difficult, so they switched to atenolol. Supposedly, atenolol has the least effect on you lungs. (All beta blockers put pressure on your lungs! If breathing every becomes difficult, for anyone, take note!) I took 25mg half tab per day that was okay at first when my heart was really bad, but eventually became too much! My autonomic neurologist recommends me taking 20mg and always taking it at night. My fatigue is dreadful and I can fall asleep during the day, so that is why I believe he had me take it at night -- Currently, he allows me to monitor my meds as needed. I personally like this and am taking a bb once every other day or every two days, depending on the day :) Whooo. that was lengthy!

Cheyanne: Do any of you get carsick?
I hate being a passenger. I actually try to drive whenever I can or if I know I'm really feeling icky, I just won't go (unless I need to). I feel like when I am driving, I have more stability and control. I hate car rides, too! I tried dramamine, but it makes me drowsy and you have to take it prior to driving, so I always forget, and I really don't think it helps!

Michelle K: Has your doctor ever recommended anything out of the ordinary?
Ha. Honestly, most of my crazy, un-knowledgable doctors just told me to enroll in a dance class and do aerobics. I still laugh. Not specifically for POTS, but other specialists for other things have told me stay away from Gatorade, the HFCS is not good for the digestive tract... all the health food unnatural things... but no solid advice that I would recommend :/ Were you ever provided with any useful/helpful tips?!

Christine: I hate the temperature changes, too! Summer is the worst.

Silly question: What is your favorite phone/ipad app or what is a something "fun" you would recommend to do when you are home and feeling icky?


IT'S MAY! HAPPY EDS AWARENESS MONTH!!!!!!
Praying for you all...


P.S. I'm an official college graduate as of yesterday :)
xoxo.
Erin