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.