Friday, December 21, 2012


Lots of stuff has happened since the last time I blogged, so lets just start at the beginning or in other words,where I left off last time.

Well I went in to see my PCP to have the wrist checked out.She was sure that it was a cyst but she was reluctant to do anything about it. If she drained it,the "shell" would still remain and it would likely return.If it was removed it could still come back. So she sent me to a hand surgeon who actually doubled as a plastic surgeon.

That appointment was very quick. He came in to the exam room,examined the wrist and determined that it was too small to do anything.Plus with my medical history he was reluctant to do anything that could compromise my health further. So he told me to keep it wrapped up and come back in 2 months if it hasn't gone away yet. I have another appointment with him at the end of January. The cyst is still present,roughly the same size and still causes discomfort.

Next came the Electrophysiology appointment. First impression was that he was SUPER smart and not unattractive either. He immediately began discussing the possibility of a catheter ablation to attempt to cure the Afib.I told him that I wanted to go home,talk to my family and research the procedure throughly. So I made an appointment for 12/20,which of course was yesterday.

So yesterday I brought along my mom & grandmother so they could meet the new guy.He explained the catheter ablation procedure more throughly. He answered many questions.He even explained that I was in 1st degree heart block as well as the fact that I had a majorly screwy conduction system. This is why I cannot take any other medication-because it wouldn't work properly.

He also said that according to my records I had had Atrial flutter in the past but he had seen none of that in my EKG's,either past or present. He also said that the Atrial Flutter ablation is simpler but carries with it a 10-15% chance that I'll need a pacemaker sooner.He also said that in the next 5-15 years I'll be facing a pacemaker anyway but because of my age,he wanted to prolong that as long as possible.

After he was done talking I told him that I had made a decision and I wanted to go for the Afib ablation. So I went to speak to his scheduling nurse and she got me on the schedule for February 11th, 2013.I'll need a few sets of bloodwork (including a pregnancy test) & a CT scan first and those will be completed by mid January.

So I'll keep you updated on everything that goes on in the next 5-6 weeks!

Thursday, November 15, 2012

Sick of medical issues

Well I guess it's been awhile...

I ended up staying off Facebook for 5 full days. It was exhilarating and VERY much needed. I'm back on Facebook but I have decreased my involvement with these families for my own sanity. It has been easier now that I am not throwing my entire life into helping and supporting these families.

Well October brought MANY things. Recurrent Arrhythmia issues for one.I was having problems at least once every 2 weeks. Finally on October 11th I went into an Atrial Fibrillation episode that went on for 16 hours even with my medication. So on the 12th I called Cardio and he told me to go to the ER.

So to the ER we went. They didn't have a bed for me. So I had to wait...and wait...and wait some more. Finally they got me in to a room.I changed into a gown (such sexy gowns they are!) Then they hooked me up to a monitor and put me on o2 (despite my sats being at 98. Stupid hospital protocol)

Then it was IV time. My nurse only had to stick me once for the IV (Yay!) So then we waited for the respiratory team (There always has to be an anesthesiologist & a respiratory person in the room before the cordioversion is done) I was given the stuff to make me go to sleep. Later I would find out that I talked about flying and that I cursed out the beeping machines when I was totally out of it.

After it was done they made me wait two hours before I went home.However when I got home the Atrial Fibrillation started up again and it went on all night (By some miracle I was able to sleep through it) The next day I went in and out of it some more and my cardiologist upped my dose of beta blocker at least until I was able to see him.

3 days later I was in my cardiologist's office and he told me to eliminate the triggers for a month (Stress,Caffeine,MSG etc) and then to slowly one at a time reintroduce them back into my body. I had coffee for the first time in 5 weeks yesterday and no issues at all! The stress thing was something else however...

After talking to my family I decided to drop all of my classes.I hated having to do it but I just wasn't feeling well enough to do school. I was frustrated and annoyed that my heart had interrupted my life for the first time in several years.

Cardio also said that the AFib could also be caused by scar tissue and given how many time my chest had been cracked open,he wouldn't be surprised if that was the reason. Cardio also ordered an echo which I had done the following day. He just wanted to make sure that there was nothing new going on structurally with the heart.

He also sent up a referral to an Electrophysiologist-someone who deals with abnormal heart rhythms.I just recently got a call from the EP's office and I have an appointment December 5th. Cardio wants to see me after I see the EP so we can talk about the appointment.

I have an appointment with my primary care doctor this coming Monday to discuss a very painful lump on my wrist. I think it's a simple ganglion cyst as I have a history of ganglion cysts but this one hurts whereas the other ones did not.

Looking forward to Thanksgiving this year! For the first time EVER I am making the stuffing on my own!

Happy Thanksgiving to you and your family!

Friday, September 28, 2012

Day 3

There is really only one way to describe my day without Facebook in it.


I never thought I'd feel like this again. Not constantly being bombarded with pictures of kids that I'll never have,relationships that I don't have and marriages that I am scared to have is SO peaceful. Not only that but to be blissfully unaware of any sort of "FB Drama" is an amazing feeling.It's like a weight has been lifted off of my shoulders.

Taking a Facebook break has allowed me to focus not only on my hobbies and interests,but it has allowed me to take a much closer look at what and who I want in my life. I do have a small circle of real life friends who are supportive and loving and who I know would be there for me if I ever needed them.

And then there's the guy. I know I'll take a lot of flak for this but this guy and I have been friends since he was eight and I was ten. As teenagers we dated.It was a whirlwind romance that included an engagement.At the time I couldn't have been happier,but a month later I realized that I was not ready to be engaged and we broke it off.

We didn't speak for several years until he started dating this girl.She was much more into him than he was into her.It was almost an obsessive level.He ended things with her shortly after I told him that if he didn't feel that strongly about her,then he needed to end it.

We went a few more years without talking.And suddenly in the Fall of 2006 we began rekindling what we had once had.He even went as far as to say that if I was to get married,he wouldn't be able to be there because he'd wish that he was my groom.

I was scared of failing at the relationship so I put the kibosh on things before they ever really got far. 2 years later we talked a few times. He had met someone and he was crazy about her. I wasn't jealous.Not at all.I wanted him to be happy and this girl clearly made him happy. That was ALL I wanted for him.

In the Spring of 2010 I got a call from his mother.His longtime girlfriend had died while waiting for a heart transplant. I was heartsick for him. I knew by his recent (3 months earlier) holiday card how absolutely head over heels in love with her he had been.That's when I reopened the lines of communication. I wanted to make sure that he was okay.

Now its nearly 30 months afterward and we still talk on a weekly basis. If she had been any other girl.If the relationship hadn't been so obviously full of love,I would consider reconciling with him.He has made it clear that he'd be open to it,but as of right now he's just not ready.I'm just not wanting to live my life being compared to the woman who died and I'm terrified that I will always be compared to the woman that he was head over heels in love with for nearly 2 years.

...But I also don't want to live my life wondering "what if..."

It doesn't help that my mom asked about him the other day.I looked at her like she was crazy.She had never liked him or his family so I don't know why she was even asking about him.

What if that was a sign?

This time away from Facebook is causing me to think a lot about different things. Actually I think obsess is a much better word.

And now I think this blog post is the longest blog post I've ever written.

Oh well,back to contemplating things...

Thursday, September 27, 2012

Rediscovering Me

Rumors are ugly and mean spirited and a big part of why I have taken a step back from the heart community. Make no mistake,I love all of the heart families that I have grown to know,but this...hiatus if you will was long overdue. In the past I had said that I was going to take a break and my breaks never lasted long at all.

When I realized that I was losing me,was when I knew I needed to take a break. 25 months ago I jumped in wholeheartedly (no pun intended) into the heart community.I offered advice (when asked) I shared my experience and I was there whenever anyone needed to chat. I was there so much for others that I forgot to take care of me. I am a daughter,sister,niece,aunt,granddaughter,woman and friend before anything else. 

Yes I do have a heart problem but I am much more than that.In fact I don't think about my heart stuff much at all.Maybe that's because I am doing so well.Maybe it's because it was such an open topic when I was little. I'm just not sure. 

I'm only on my 2nd day of my self imposed hiatus and I have to say I am more relaxed and I'm returning to the things that I loved to do before I got sucked into the online heart community. I've even discovered a new passion. I love being in the kitchen. Cooking or baking is incredibly relaxing and it allows me to get lost in what I am doing. I usually have music going as well so that really gets me going. I am going to try to do a new thing in the kitchen at least every other day.

I don't know how long I'll be away from the online community. I just know that right now I am rediscovering passions and reexamining priorities in my life.

Sunday, August 12, 2012

Belated Cardio Appointment Update

So sorry I haven't posted an update about the Cardio appointment in July.

The long & the short of things is that my heart is looking good. The Ejection Fraction is 56% Usually they think anything above 55% is good for a person with a perfectly formed heart.So for me having a 56% that's pretty darn exciting. When I had the echocardiogram done in February, the measured Ejection Fraction was between 45-48% So the Cardiac CT gave us a much more accurate number.

The conduit is looking good. It is not stenotic and it does not have any thrombus in it. My cardiologist does not believe that it will need to be replaced anytime in the near future. The mechanical valve also looks good and it has good function.

The left ventricle has moderate concentric hypertrophy.The right ventricle is mildly dialated with moderate to severe hypertrophy.

I still have a residual VSD that is 3mm. The VSD is located in the sub-pulmonic location. My cardiologist believes that if and when it needs to be closed,that it can be done via cardiac cath (yay!)

I have an aneurysm in the brachiocephalic artery.It is small enough that nothing needs to be done to repair it right now.

I will go back in to see him in January.

Wednesday, July 11, 2012

Seven years ago

Seven years ago today I woke up at 4:30 am so I could play on my computer before we left for the hospital at 5:00am.I needed to check in at the hospital at 5:30.Thankfully we lived very close to my hospital so we got there by 5:15 and by 6:00am I had signed all the consent forms and everything (since I was 19 it was my first time signing all the forms and I was freaked out)

I don't really remember much about the waiting in the preop area. I remember some nurses coming down to see me from the pediatric floor (We had made the decision that I would recover in the pediatrics floor because that was the floor that I was most comfortable with) I remember the IV going in and how uncomfortable it was. The last thing I remember was the anesthesiologist coming into the preop area to give me some Versed to relax me.

The next thing I remember is waking up in my room and finding out it was two days later. I had my surgery on a Monday & it was now Wednesday. I had been extubated on Tuesday but I don't remember that. I remember asking for Sprite right after I woke up on Wednesday and the nurse brought it to me but I couldn't keep it down. I had a second cup of Sprite and that came back up.So the nurse decided we would stick with water for awhile.

On that Wednesday I sat up a bit and had the first of two chest tubes pulled. I don't remember any other lines coming out but I know they did. I got stronger as the days passed. I had a transfusion either Thursday or Friday.Doctors were still trying to calm my heart down.I was having episodes of arrhythmias daily that they couldn't stop.

Saturday I had my Foley catheter removed. Nothing else remarkable on that day. Sunday I stayed awake for a long period of time. Monday I was able to go down to the family room and eat dinner with my mom, 4 year old brother and the rest of my family. My brother kept trying to push the buttons on the IV stand.

It wasn't until we got back to my room that I noticed that my IV site was bleeding.My favorite nurse Fran, who is now in IV Therapy now put a new IV in.I do remember asking why a new one needed to go in because rumor had it that I was being discharged the following day. I was told that it was precautionary,

The following day another favorite nurse of mine by the name of Katie was my discharge nurse.It seemed to take forever to be discharged. I know that discharge usually does take awhile but it seemed to take even longer this time. By early afternoon I had been discharged with an appointment to see the surgeon & my pediatric cardiologist very soon.

I was sent home on:

I think there was one more but I'm drawing a blank.

I spent a total of 8 days in the hospital this time. I probably would have went home sooner but they could not stop the arrhythmias so I stayed a bit longer. Even so,the 8 days was the shortest hospital stay following OHS that I have ever had.

Happy Anniversary to me!

Friday, June 29, 2012

Lesson Learned!

My faithful readers and friends may recall two months ago when I made amends with a friend.You all may recall that I forgave this person and I was willing to re-establish our friendship. Now I know that I should not have done that.I had prayed to a God that I am not sure exists asking Him to tell me what to do. He told me to forgive this person.

Well that's the last time I ever pray because I did what He told me to do and you know what? I got burned in the process.This person is not worth my time or my friendship. They are a liar and just plain old cracker box crazy.

Sometimes you can forgive someone and things can go back to the way they were and sometimes you learn that there is a reason that this person slips in and out of your life.

I choose to focus my time,energy & love on people who I know have a good heart. Thankfully I have some amazing friends in real life who would stand by me no matter what.