Friday, May 25, 2012
Cardiac Update
So today I had a cardiologist appointment.
Found out quite a few things,
1. my atrial wire is NOT shot!
2. still cant change pacemaker.
3. I'm having major A-fib.
4. med changes are needed.
5. surgery will be same day :)
So we are setting me up with a heart monitor, and starting a few new meds. one of the meds (anti-arrythmic) I need to be hospitalized for a few days to start so we'll plan that.
another med is baby asprin, which even though its a tiny, tiny dose, I'm still nervous about because as some of you may remember, I had quite a problem with asprin once before.
ambulance, liver failure, kidney failure, lost my hearing, landed myself in ICU for a few days. but I think it will be fine. I'm just nervous.
I will also be starting another medication to maintain an even pulse.
in order to start the first one, I need to come off my mood stablizer. so I started decreasing that today, and will stop it on tuseday. Not sure what they'll put me on in place of that. but I suppose we'll figure something out.
I see my cardiologist & electrophysiologist on the same day, in 6wks. after my 30 day heart monitor. so hopefully by then we'll have figured out what meds I'll be taking.
June is a busy month for me, and I need to be feeling my best. so fingers crossed everything gets fixed! lol
the endddddddd.
Tuesday, May 8, 2012
Pacemaker/Heart Transplant
Ridiculously pissed off! They wont change the damn pacemaker yet! I legit cried in front of them and it triggered an arrhythmia, but nope! They won't change it because it's not in the "safe mode" meaning I won't drop dead due it failing.
but I am beyond upset. My current quality of life is CRAP! I can hardly leave my house anymore. If the simple act of crying causes A-Fib, you can imagine what actual exercise would do. but anyway, they say it has "1-5 months" so I'm stuck like this until PROBABLY August. Which infuriates me. But we are going to speak with my cardiologist to see if she can talk them into doing it, because the main problem right now is the Atrial wire. It's pretty much fried, and I've been having a FUCK ton of A-Fib.
My mom is at the point where she's ready to take me back to New York Presbyterian. I'm honestly gonna start a petition, not just for me, but for anyone with a pacemaker. It's not all about how it looks on paper but how I FEEL! Quality of life! Its absurd! Perhaps in old people they dont notice the lack of energy as much because well...they're old, and things have slowed down for them a bit anyway. But in young people, it makes a HUGE difference!
While my mom was at a conference in New Orleans last week, she met with & had lunch with 2 DOCTORS. not lay people. but DOCTORS. She was telling them about whats going on with my pacemaker. One of the doctors asked her, "why don't they just do a heart transplant?". My mom was pretty much speechless.
(If you are a lay person, and don't understand the reasoning, I shall explain: if I had a pacemaker & ICD and was still not doing well THEN they would resort to transplant. But as of now I don't even have an ICD. And for the most part.(except for when my battery / wire are fried.) I do Okay. (not including lung probs) To do a heart transplant would mean I'd be in for a lifetime of anti-rejection medication, I would never be able to have kids (due to these meds) would probably need another one about every 10 years. Chances are I would be dead by 40. at this rate I can live until 64. (although this is speaking strictly cardiac, and given my lungs & other events that may come into play, 64 is highly unlikely)
anyway, theres the update.
My mom is at the point where she's ready to take me back to New York Presbyterian. I'm honestly gonna start a petition, not just for me, but for anyone with a pacemaker. It's not all about how it looks on paper but how I FEEL! Quality of life! Its absurd! Perhaps in old people they dont notice the lack of energy as much because well...they're old, and things have slowed down for them a bit anyway. But in young people, it makes a HUGE difference!
While my mom was at a conference in New Orleans last week, she met with & had lunch with 2 DOCTORS. not lay people. but DOCTORS. She was telling them about whats going on with my pacemaker. One of the doctors asked her, "why don't they just do a heart transplant?". My mom was pretty much speechless.
(If you are a lay person, and don't understand the reasoning, I shall explain: if I had a pacemaker & ICD and was still not doing well THEN they would resort to transplant. But as of now I don't even have an ICD. And for the most part.(except for when my battery / wire are fried.) I do Okay. (not including lung probs) To do a heart transplant would mean I'd be in for a lifetime of anti-rejection medication, I would never be able to have kids (due to these meds) would probably need another one about every 10 years. Chances are I would be dead by 40. at this rate I can live until 64. (although this is speaking strictly cardiac, and given my lungs & other events that may come into play, 64 is highly unlikely)
anyway, theres the update.
Thursday, May 3, 2012
My Dear Alan
My dearest Alan,
Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.
And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")
I know that my life, will never be the same.
You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.
I love you more than you know and I miss you every day.
My Shiny.
My Best Friend.
My Hero.
My Alan. <3
Breathe Easy
June 24th, 1984 - April 12th, 2012
Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.
And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")
I know that my life, will never be the same.
You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.
I love you more than you know and I miss you every day.
My Shiny.
My Best Friend.
My Hero.
My Alan. <3
Breathe Easy
June 24th, 1984 - April 12th, 2012
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