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 :'(