Wednesday, November 7, 2012

This is what's up.

So I have been meaning to give a little update and it has been so crazy. I didn't want to post anything until I knew for sure what was going to happen and now we have a pretty good idea.

Here is a pic of my new heart monitor (and my voter sticker. Tough, tough loss. Giant pill to swallow.).

It's pretty crazy, and pretty expensive, and pretty hard to cover up with most of my shirts. I get some pretty funny looks, mostly because I am so young I think! I'm over it. It goes with my giant scar and it is what it is.

It comes with a cell phone that goes crazy when my heart goes nuts or go further than 15 ft away from it. My heart is constantly being monitored as well as I have to call and report anytime I feel any symptoms (SVT's, dizziness, rapid heart rate, PVC'S, shortness of breath, etc..). Then there is a small box that you can wear on your belt loop...I look very official. As well as a little fanny pack looking thing. I'm super cool is all I can say.

So as of now the patch they put in my heart is pretty big and it is in the septum separating the top two chambers of the heart called the left and right atrium.

The patch is about the size of a quarter and is a tissue that is not electrical conducting. My doctor explained it like a round-about. Most people's heart would create it's own electrical path where the conduction would go around and come out at one side and be just fine. Mine, for some reason, is just getting stuck at the patch and going around and around and around. This is making the bottom two ventricles, the really important part of the heart, freak out because it is getting spotty electrical signals. It is making them pump so fast and so hard that they don't have time to fill up with blood, and therefore the rest of my body is not getting the proper amount of blood. I black out when this happens and go numb in all of my limbs and have a lot of pain.

When they put me on beta blockers and rhythm pills it stops these episodes for the most part. Unfortunately they keep having to up the dose more and more because they keep breaking through and the side effects are just awful. The hope was that 3 months after surgery my heart would kind of "figure itself out" and I would be ok and the beta blockers would hold me over. Now that it is 3 months after and I am still having them even through the medication, the chances are very low.

We decided that I would wear the monitor for the next month to get a better idea of where they are happening and what other things are going on so the doctor can get a greater plan for the procedure. We also were just giving it a little more time to see if maybe there is a chance that it would go away and my heart could heal and be a little stronger for the surgery (ablation).

So, in december he is going to go in and burn some scar tissue from the patch to another non conducting tissue, like my valve, to stop the signal from going around and around and around. Generally it is not a big deal, they go up through my leg and that is that. The problem is there is just the chance of so many complications like creating a new hole in the patch and having to be opened up or having to have a pace maker. I could bore you forever and a day for all the could-be possibilities, but I won't. 

Case and point, I'm nervous. I haven't been nervous til now. And I honestly don't know how I could handle much more. That is why in my prayers I no longer ask to be healed, but I ask to be helped and to have the strength to handle whatever else is going to happen. I have a feeling this trial is not over, but I know I can do it. I know whatever is happening is best for the long-term issues. 

Everything is just so up in the air and that is really what stresses me out. I really need to sell my apartment contract. I really need to get a job, but if something happens and I am sick for much longer that is not an option.  I really need/want to finish school. I want to be social. I just need to function, and right now every day brings a different challenge. One hour I might feel a little better and the next I am dragging and not feeling good. So who knows? I don't. I am just trying really hard to have faith that God knows best and things will work out. I don't know how, but they just will. 

So that's it for now. Sorry this is so boring, but that's the plan for now! More later. 


Hailey said...

You're so brave! Thanks for being an inspiration and a good role model.

Heart Mommy said...

Aaaahhhhhh those are the dreaded lead stickers Gator hates so bad.... Sorry your ticker isn't working right still... Those caths freak me out too!!! I remember after his last cath he needed to pee really bad and newly potty trained he wasn't going in a freakin diaper, mom! So finally Jeff carried him as straight legged as possible to the toilet and we pointed it all down and aimed really good and he finally had some relief!!!! He told the nurse "thanks sweet gal, I feel so much better" they sure do try and scare me with all the what ifs...
Wish this last "fix" would have done the trick! It seems like you are staying so positive... Handling all these challenges with such grace. I sure love ya!

Anonymous said...

What a beautiful post, you are such a brave and optimistic person. I'm in the health field & very familiar with this condition.
Im your new friend on gfc
Abigail K