more pacemaker drama & vacation

So as you all know, my pacemaker is dying, and I've been fighting with the docs/insurance companies to get it changed.
the insurance companies like to wait until the last min (when the pacer goes into safe mode)

well I had a pacemaker check scheduled for June 19th. and my genius ass missed the appt. so I called them later that day to reschedule. we ended up rescheduling for yesterday. and (as I suspected) they decided to tell me its time for surgery, the battery needs to be replaced. well of course they tell me that then. because I was scheduled to leave for FL this morning.

anyway, these are my posts from yesterday:


"I KNEW this was going to happen!!!!!!!!!
the but NO! they wouldn't listen to me! 
pacemaker people said I need the battery replaced! 
and of course I leave for FL tomorrow morning. or at least I'm supposed to! 
UGGGGGH! they're gonna call me back in a few mins to let me know if I can still go!"


&

"UPDATE:
I officially CAN go to FL, however,
no matter what I do (in her words) "you could run a marathon and your heart rate wont get over 65"

so basically I'm not allowed to do ANYTHING remotely strenuous. wheelchair in airport. no beach walking. no kayaking, no swimming. nothing =\ which kinda sucks. but at least I can go!"

Recap: battery is in safe mode, meaning HR wont get over 65, and it is only pacing the ventricles (usually mine paces the atria as well) 

I can't really do anything physical 

my appointment with my electrophysiologist is scheduled for the 17th. and he'll probably schedule the surgery for the next day. I also still have my heart monitor on 24hrs a day for 2 more weeks due to the A-fib. 

but I'm here in FL now. so I'm a happy duck!

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.

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 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

Breathing Hope for Alan -facebook page

Donate to Breathing Hope for Alan

More stuff from my brain

I just have a few things on my mind.

figured I'd write them somewhere.

first off. Mebsie is here, for my birthday. On Monday we went up to Conneticut again, to see Melissa & Emily. I know I had said that I wasn't going to go back up, however Melissa had to be moved to a facility because the home care nurses were unable to control her pain. The facility is much closer to me (1 1/2hrs) and its also about 10mins from Emily. So we had a nice day.

yesterday was my 23rd birthday, meaning I am now 21yrs past expiration date, lol. (I was not supposed to live to see 2) I had a pacemaker check in the morning, battery has 1-8 months left on it. The rest of the day I spent in bed. I was super cranky, and not feeling well. I did get a bunch of camera accessories & a gift card for a massage, which is awesome.

I leave for the condo on April 3rd, I'm excited to get out of here again. I'm really wanting to go on a road trip but right now my mom doesn't want me to go. I'm frustrated. I hate not doing anything with my life, but I've been told I'm not mentally stable enough to survive in the real world yet.


there is more, which I'll get back to later....

Real Life

for part of the past 2 weeks I've done things that normal people do.
went to a bar/karaoke, a party, hung out with friends. I do wish I had other friends that lived near me. I'd love do do things like this more often. *foreveralone*

one of the hardest things I've had to do

I know I say this a lot, but this is one of the hardest things I had to do...

As many of you know, one of my dearest friends Melissa Hauser is on hospice. (end of life home care) 2 weeks ago yesterday we were talking and I asked her if she thought she would make it to Monday (which would be 3 days later) and her reply was "I'm trying hun, I'm trying".
the next morning (saturday) I backed up my shit, and got in my car, and drove to her. I spent that day with her before returning to Emily's house, which is where I was spending my nights. The next few days I made the drive from Cheshire to Vernon & back to visit Melissa. Then I decided to give the family more alone time and started going only a few days a week. It has now been exactly 2 weeks since I got here, and true to form, Melissa is still hanging on. Unfortunately I need to go home on Monday. It breaks my heart, but I have 10 doctor appointments to make, and go to, before April 3rd. I also may be getting surgery during this time as well. It has also been 3 weeks since I've seen my mom, and she is getting VERY anxious. Yesterday I said my goodbyes to Melissa, for the last time. We hugged for a long time. It was so hard, walking out that door and knowing I'd never be back. I'd never see her again. I'd never see her sweet and loving dog, Abby, again. We would never make our heart hands again. It felt so wrong, I felt so cold, just walking down her driveway. I sat in my car, just looking at her house, crying, for a good 15mins before I drove away, for the last time. Now I know, Melissa is not gone yet, however, I will not be back. It is a 3+ hour drive, and it makes my mom very nervous. I will most likely drive up for the service, when that time comes. But that will be different, I will not be driving up for a visit with my dear friend, I will be driving up to mourn her. Melissa is an amazing friend, and it kills me that I cant be there with her. I love you Melissa.






Hand Hearts Forever <3



Saying Goodbye