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.

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:
Captopril
Coumadin
Lasix
Sotalol

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!

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.

Relief

When I got the news on June 14th I just felt a flood of relief. Tears streamed down my face and I thanked a God that I'm still not even sure exists. My niece did not have some crazy GI disease.She simply had a milk protein allergy.That was something that was much easier to deal with.

I had never felt so relieved in my life. I had been so scared for about a week while we waited for the biopsy results.I had armed myself with lists of information.I had stayed up into the wee hours of the morning doing research after research.Looking at all sorts of things.

When I got the results my first thought was relief but my second thought was that I had wasted a lot of time doing a ton of research.But then I quickly snapped out of that thinking because I knew that all the research I had done was not a waste of time.If my niece had been diagnosed with this GI disease I would have been a VIA (Very Informed Aunt)

Even though I have not had the chance to meet my niece yet,I know that she knows how loved she is by everyone in our family. I know how relieved we all are that things turned out in the best possible way.

First family picture.Just looking at this makes me smile. I love you three!

The Waiting Game

I've played the waiting game before.

But this time it's so different. We aren't waiting for news about my health at all and if possible playing this waiting game is even worse.

We're waiting to find out the results of a biopsy that was done on my ten week old niece.

Yes you read right...My ten week old niece has already undergone more than she should have at her young age.

Now we have to wait three to five days for the results.I know the waiting is hard on me,I cannot even imagine how hard it is on my sister.We texted for a bit last night and I could tell that she was scared.

I reminded her that it's okay to cry (as a matter of fact I'd been crying most of yesterday) and she informed me that she had been crying.My heart ached for her.I wished so much that I could be with her,holding her hand,letting her cry on my shoulder.When I told her that,I could practically hear the tears when she texted back "I wish you were here too"

Last night was unbearably hard for me.

I struggle daily with God's existence and this certainly has not changed.I would trade places with my niece in a second.I don't understand how a higher power could allow this type of thing to happen to a tiny baby. Why not the rapists & murderers out there?

Why my niece?

An Aunt's Fear

When I first learned that my half sister was expecting I was thrilled.Our half brother had recently welcomed a son and I was so glad to know that our extended family was getting even bigger.I hounded her and hounded her to talk to her OB about my heart history and to keep a close eye on the heart.When she went to into labor at 32 weeks I was sick to my stomach.I spent much of that time crying.I was scared and not being able to be there with her only made it worse.She miraculously kept my niece safe inside of her for six more weeks. Lillian Renay was born at 5:25 am on March 30th.I was relieved to know that my new niece was healthy.

During the first two and a half months of her life,she had had a lot of GI concerns.I wasn't scared until I saw today's picture.She's back in the hospital.My sister is scared and she needs answers. Right now doctors only think they know what's happening. Nothing is definite yet.Again,I'm scared and not being able to be with my sister is awful.My whole heart is with them right now.I need answers too.Not as much as my sister does but I am one scared aunt here.

I think it's probably a good thing that I am not there with my sister and the baby.I would be hounding the doctors.They would probably run far away from me.

Please pray for some definite answers for my sister and her baby.Whatever it is,I will be there in spirit when I can't be there in person.When I can be there in person,I will be.

Love is Love

Last night I had just finished re-watching an episode of Grey's Anatomy where a lesbian wedding takes place and I couldn't help but wonder if my very Catholic grandmother would find it in her heart to attend my wedding if I fall in love with a woman. I don't want to get married without her there,but I don't want her to be there if she can't support me.


My grandmother has been there for me from the very beginning. She helped my mom raise me. She stayed nights with my in the hospital.She bombarded the doctors and nurses with countless questions.There's no doubt in my mind that she loves me and that she would lay down her life for me in an instant.


But will she love me as much if I fall in love with a woman? Will she find it in her heart to attend my wedding? Those were the questions that plagued my sleep last night.

I can't imagine getting married without her.Yet I don't think I could make the woman I love wait until my grandmother dies to get married.

I wish I could be certain that I would have her acceptance but I can't be. But I don't want to hide in the closet from her anymore. I want her to see that no matter who I love,that I am still her granddaughter.

That will never change.