Whirlwind

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!

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!

Day 3

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

Peaceful.

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...

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.

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.

Mish-Mash

Well my CT results are in and the good news is that I am not in Left Sided Heart Failure and my EF is 48% Bad news is that I have 2 aneurysms.One is 3.2 cm & the second one is 2cm.Right now they will just keep a very careful eye on them. They won't repair them until they get to about 5.5cm. My conduit looks good as well (another yay) So no surgeries in the near future!

But what I really want to talk about is the subject of interrogation. I have the utmost faith and confidence in my medical team and if they didn't think something was in my best interests then it wouldn't be done.They plan to keep a close eye on the aneurysms by yearly CT. Having someone question that decision today pissed me off.Of course we discussed the risks and benefits and my cardiologist and myself both agreed that the benefits of yearly CT scans FAR outweighed the risks that come along with radiation.

I never would have agreed to something like this unless I understood the risks and to say otherwise is a slam against my intelligence.Exchanging information is one thing but to immediately start questioning the decisions I made with MY medical team makes me livid.

So parents remember that the Adult CHDers that you know or are getting to know are likely just beginning to take over their own care and they need compassion,not interrogation.Adult CHDers,remember to be kind to one another.Some of us are still learning certain things and MANY of us like our cardio team and have faith in them and the decisions that are made jointly.

Everyone is different.Every person.Every cardiology team.Every CHD and every plan.

Remember to respect one another.

My nightmare

Ever since I had my cardio appointment on April 30th and learned that my left ventricle had decreased function I have been scared. I saw my echo report 2 days later and my fear only intensified as I saw the words Indication: Left Sided Heart Failure. My mother assured me that he had only written that on the report so that we could get the Cardiac CT approved by insurance without too much BS. I wasn't so sure about that.

Last night I was looking forward to a really good night sleep as I was officially on Summer Break! Sleep wasn't easy on me. I had a dream in which I had gone in to see my cardio and he was telling me that there was nothing else they could do for me and that I had to go on the Heart Transplant list. I remember just crying and crying and demanding to know why he didn't warn me of this possibility when I had gone in to see him at the end of April. I remember him telling me that the Cardiac CT results showed him that despite me being basically asymptomatic,I was in need of a new heart.

I remember throwing a model of the human heart at his head and crying for my mom. I just remember that feeling of complete terror. My worst nightmare had come true. I remember my mom hugging me and making demands of the cardio (I don't know what those demands were) I remember bits and pieces of the rest of the visit. I remember the drive home. We were both crying and my mom was insisting that this had to be a mistake.


....Then I woke up.

Mothers Day Reality

Most people think that Mothers Day is only sad for those who have suffered a loss such as a mother or grandmother or a child. No one ever thinks about how hard it is on someone who cannot have children.

I have always known that having children naturally would likely not be possible for me. When I was 19 and had the mechanical valve put in and was put on Coumadin,that was like the last nail in my coffin of motherhood dreams. Now there would be no possibility of carrying children.

I know people will say that I have options: Adoption,Surrogacy. I don't think I could ever ask anyone to be a surrogate for me. As for the adoption plan,I am so scared that I would not be accepted as a potential adoptive mother because of my CHD & various other health issues.

Yesterday after I had dinner with my family.I went to check my text messages. There were none. Then my mom said "Well Today's Mothers Day. You aren't a mom." I swear I nearly slapped her. I was so angry & upset with her and I know she didn't mean anything mean by it. She's an amazing mom and I am lucky to have her.

Hearing about and seeing all these flowers & homemade cards that kids brought their mother made me sad. I realized right then that I will likely never get to share a Mothers Day with my child.

This year was the first year that Mothers Day had affected me like this. I was surprised by all the emotions I felt yesterday. Maybe it's because I am getting older,and watching my half siblings & high school friends start families.

I just don't know...

CT Day

A big thank you to my family for their support before and after the procedure.


I got to the hospital before 9am and by the time it was 9:30am, I was taken back to the scanner. Then the apprehension came in because they were ready to put in an IV. Thank God I had 2 really good nurses & a really attractive male radiologist. All three of them decided together which vein would be the easiest to try and get an IV going. And I was only stuck once! Got the IV on the first try and it flushed perfectly. 


Then they couldn't get the heart rate to slow down enough (they want it around 60 for the best pictures) So they gave me a half a dose of Metoprolol to slow it down and that still wasn't helping so one of the nurses gave me another half and we waited. Finally it worked and the radiologist injected the dye. Oh God I hate that feeling. I felt so ubearably hot for about 10 seconds and I had a metallic taste in my mouth. 5 minutes later the scan was done and I could sit up. 


Then the nurse took my blood pressure and it was garbage. It had dropped down so low because of the Metoprolol that I couldn't leave until it was stable again. It took an hour for it to stabilize and I was getting a saline bolus to stabilize it because the nurse suspected that I was dehydrated. I was sent home with a promise to check my BP every hour with my home monitor and to go to the ER if the BP dipped below 80. 

I got a Starbucks & LaBou after because I was starving and I had a headache and was super lightheaded. SO glad it's over though.

I am really looking forward to seeing & hearing about the results from Cardio.

Let's Roll

I was convinced it would take months to schedule the Cardiac CT.

So I wasn't really paying attention to my cell phone this morning. Of course I missed a call from my cardiologist's office. I immediately called back and I left a message with the woman who had called me (authorizations & new patient coordinator) She called back about 20 minutes later and informed me that insurance had approved the CT scan and she proceeded to tell me everything I needed to know.

The CT scan is set for May 11th which is this Friday.

I have to check in at 9:00am at the patient registration at the hospital.

NPO four hours before the procedure.

I have had a Cardiac CT before so I know what to expect. I hope that this will give my cardiologist and myself some answers.

Very Greatful

After a lengthy discussion with a wonderful woman I have decided that I only need positivity in my life. No negativity. This journey is one that I thought would never hit another speed bump.Over the past five days I have come to realize that this is only the beginning.I've had more scary words & phrases tossed around in the past four days than in the past 4 years.

Yes it is scary. Yes I hate the idea of not knowing,but will I dwell on it? No,I will do my very best not to. Dwelling on it causes more stress and my body hates stress. Patience has never been my strongest strength but seeing as we won't know anything more until that CT is done. Then I can have another freak out.

No one wants to hear the words Heart Failure but the good thing is that my new adult cardiologist is staying on top of it. He's running the tests to see if in fact I am in heart failure and if I am how severe it is.Right now the only symptom I am having is fatigue.

Today the results from my bloodwork came in the mail and I was relieved to see that overall they looked good. I was mostly concerned about my liver & kidney numbers but those came back within normal range. The only number that was off was my BNP. This is apparently one of the tests done to detect heart failure. The BNP was elevated,but not extremely high which suggests to me that if I am in heart failure,I am in the very early stages of it.

So I am going to try not to worry until the CT is done and the results are in.

Thank you to everyone who has offered to listen to me vent,offered to bring me cookies and offered to come down to see me.

For right now life is on pause...

Echo Results

Well  it looks like I'm headed for left sided heart failure. Why the hell did cardio not mention this on Monday? Oh and I have another Aortic Aneurysm.


I got all this news from the echo report that they sent me today. Technically it said Indication: Left sided Heart Failure but really who pays attention to stuff after reading that? 

There were a few more things indicated in the report but nothing as major.

I had an Aortic Aneurysm repaired when I was 19 but now it seems I have another one. It is 3.2cm. So not terribly huge but still concerning. The plan now is to get insurance to approve the CT and then get it scheduled and have it done. After that we'll have some sort of plan.... I hope

Maybe the CT will show that the Ejection Fraction isn't under 50. Maybe it will show that left sided heart failure is not a possibility.

I just want to see the results...

Waiting

Just a quick update...


I had no idea how nerve-wracking waiting could be. When I was having issues before I was 19 and my mom was still shouldering most of the information and details about my care. I don't remember the waiting for the scans or the cath or the surgery being as anxiety-provoking. 

All I know is that Cardio is anticipating a fight with insurance to get the Cardiac CT approved. This particular CT is not really a diagnostic tool in my case but hopefully Cardio can spin it so that it is approved by insurance.

Waiting for that is so anxiety-provoking. I just want to have a date set for the scan so we can have the scan done and get answers as to what is going on and see if I need to be on meds for the decreased left ventricular function. My guess is that since I am not symptomatic,that I will not be put on meds and we'll just keep a close eye on it.

Oh and if ONE more person asks if I need a transplant,I may lose it. I am already scared and the idea of a transplant scares me to death. Sheree,Ashlea & Katie A, I am not talking about you guys. 

Right now I just need prayers,positive vibes,hugs and love from everyone. I am going to need you all as I embark on this unchartered territory.

Tomorrow I should receive a copy of my echo results so after I make sense of those I'll probably write a blog post about them as well.

Heart hugs and much love to all of my faithful readers.

Not what I expected...

Today did not go how I expected it to go at all. I had mild anxiety over the cardiology appointment that was scheduled for today but I was SO used to hearing "You look good.See you in six months" Words that my pediatric cardiologist uttered every six months. Even so I brought a notebook full of questions to ask my cardiologist. Only 2 of them got asked because we spent most of our time going over exactly what the echo showed him.

The first thing he said was that he saw nothing catastrophic. I was glad to hear that but then my mind shifted to "Oh shit he did see some changes!" Then he went on to explain that my left ventricular function has decreased and it's now at 45-48% I have never had good left ventricular function so the fact that it has decreased scares me. I have a call into him to ask what the last percentage was so I can compare the two. He also said that I have right ventricular hypertrophy because the right ventricle is having to overcompensate for the decreased left ventricular function. He also told me that I have a residual VSD that is restrictive. He assured me that was a good thing.

He wants to do a Cardiac CT scan so that he can check on the conduit more fully and also give me a definitive answer on why my blood pressure is so different in each arm (My theory is that the BT shunt is the reason behind that) Right now it's just a lot of guesswork. The good thing is that if necessary I can be put on meds for the Left Ventricle. He does not believe that the tiredness I have been experiencing is cardiac related but we'll know for certain after the Cardiac CT.

I'm scared to death right now. I know a CT scan ISN'T a big deal but I guess I just got complacent and I believed that I was done having issues. Stupid I know. I've been pretty much in shock most of the day and now I am desperately trying to stay calm even though I just want to cry.

Today sucked and it needs to be over :'(