Why

I know I said that the next blog post would be about PTSD in CHDers and CHD Parents but I have to write this. Why am I still alive? What is my purpose in life? Not easy questions but ones that come up in my head sometimes.

I may not have done bad things to my body but I have coded multiple times and yet each time it happened,I came back.I don't understand why I was allowed to live and so many children have lost their battles. These musings happen more often as I have become a part of the CHD community on Facebook.I have bonded with parents and Adult CHDers.I watch some CHD parents lose their children and it makes me wonder why I was spared and why my family was spared the pain of losing me.

I know I fought hard to live but I don't think I fought any harder than these kids who are losing their lives. I know my family fought for me,but I also know that these Angel Parents fought hard for their children as well.I watch these babies and children struggle to survive and it makes me wonder why was I able to beat the odds and some kids arent?

I went through the trials of not having an appetite and getting poked and proded and having countless caths and 5 surgeries and twice yearly cardiology appointments and more.

When I was 12 I was so sick,they weren't even sure that I'd make it off the operating table after my emergency aortic valve replacement.And yet I did. I was in a medically induced coma for a month and developed a nasty pressure sore on my tailbone because I couldn't be moved without my sats dropping dramatically.When I was released from the hospital six weeks after I was admitted,I weighed 42 pounds. I was skin and bones and my hair was thin and falling out.

Yet I made it...

When I was 19 I had my aortic valve replaced again. This time I was only hospitalized for 8 days. That was a record for me.I sailed through that surgery and recovery.


Sometimes life makes absolutely no sense at all.

Nightmares

I never really had nightmares as a child.At least not ones that were connected in any way to my CHD's.When I was recovering from surgeries at ages 12 and 19 I had what were called "Fentanyl Nightmares" They were vivd and horrific.My grandmother said that when I was on Fentanyl I even scared her.

When I was 12,one of the nightmares I had involved two of my classmates who were following this faceless guy down a dark alley and I remember screaming at them not to go.I said "Don't go with him.Please!" But they went anyway and I saw their limp and bloodied bodies a short time later.

When I was 19,these dreams were even scarier. One nightmare in particular scared the living hell out of me.I was lying face down in a doorway with the taste of blood in my mouth and this girl screaming at me "You sick bitch,you raped my sister."I was so scared and I remember waking up in a cold sweat and I was shaking so badly I couldn't stop.

So heart parents if your kids are ever on Fentanyl after surgery,you should expect them to have this type of reaction.Scary vivd nightmares that scare even you.You should also know that these won't last and once Fentanyl is completely out of your child's system he or she will go back to normal.

At a Standstill

This isn't CHD related at all but it's something I've been thinking about a lot lately.After conversing with and old friend on Facebook last night I was startled to realize how little my life has changed in the last 5 years.Sure I may have moved,but that's it. I am still at the same Community College I haven't had a date in 8 years I still haven't moved out on my own.

I'm watching all of my old friends from grade school and high school get married and have kids and I'm jealous. I know it sounds crazy,but I need something to change. I usually hate change but I really need it.I need a big change.When is it going to be my turn to have a major earth-shattering change like falling in love and getting married.

I feel like my life is at a standstill and unless I make some decisions about my life,it's going to continue to be at a standstill.I have to make a career choice and I have to get back to going on dates.

Please think of me and pray that I get answers because I could really use some help right about now.

Something needs to change and soon.

Raw Emotions

I blog to get my feelings out and right now I am over everything that happened over the past few days. I can't focus on the anger of others. I can only focus on how I react to things. I am stubborn and tenacious,but I am also a person.

I wish more than anything that I owned a private plane so I could go meet so many people on a moments notice.Hearing the news that Olivia Davis is once again struggling scares me. I have never met her family but I feel like I should be there. Stanford is not a really long way from where I live. I hurt when these kids hurt. I hurt when their parents hurt.I am heartbroken when things don't go well. Maybe I am too overinvolved or maybe it's just because I view these people as part of my family.

Many of these people I have never met and will likely never meet but I have a bond with these people.I cry when a CHDer dies whether or not I knew them even a little.I am happy when a child goes home from the hospital or celebrates a birthday.What many parents would consider small milestones such as birthdays or crawling or walking,heart parents treat it differently. I treat it differently.

These kids are a part of my life. They are my heart sisters and brothers and they inspire me to keep going. They inspire me to keep living my life. When I'm down,knowing that they are out there looking up to me,reminds me to keep moving forward.They remind me not to feel so scared by changes. They remind me that I am here for a reason. I am here to fight for awareness for them. I am here to fight for accuracy.I am here to love them and love their families as deeply as their families love me.

CHD Parents and Survivors thank you so much for your constant love and support.I am truly blessed to have you all in my life.I love you all more than you'll ever know.

Respect

We don't always agree with each other's opinions,but the most important thing is to remember is we have to respect each other. Over the past 24 hours I have been disrespected frequently and told what to do about this whole situation.I have been told to back down and leave well enough alone but I cannot do that.I will not allow someone to tell me what to do.If I didn't think this was the right thing to do,I sure as hell would not have done it.

I am doing this for the HLHS families.For Survivors and for Angels and some people don't seem to realize that. I got messages and FB posts telling me that I was wasting my time and that I was fighting a losing battle with a network.

Then I had a small circle of heart moms who stood beside me while I stood my ground and fought for what I believed was right.These 5 women were just the women who I have forged a bond with.
-Krystal Van Ryssel
-Stacey Lihn
-Tina Snel
-Stephanie Rastelli
-Zoe Lee
Without these ladies in particular cheering me on I don't want to think about how much worse yesterday could have been.I am so greatful to them. I also recieved support from HLHS moms I have never even met on Facebook.

So even if you do not agree with my decision to go up against the network,please be respectful.

Respect goes a long way.

Done

I have been fighting all day to get ABC to see the gross errors that they made last night.I have gotten people angry at me and telling me to leave the hell enough alone and then when people on Private Practice's FB page made stupid statement I was told to let it go. Which I cannot do.All I am trying to do is be the voice of so many HLHSers and I have lost my inspiration to do it because of all the crap I have been through today.

We need more CHD Awareness but last night was not the way to go. Sure it was only a show but as a medical show you have to be accurate. You have to make sure that you get things right. Last night was a travesty.

I don't want to fight anymore. I can't fight for the kids if I am getting flack for it. I will be standing my ground on this issue,but I am angry and disappointed that people have doubted my choices and decisions all day. It's hurtful and after today I suppose I know who my real friends are.

Last night

First let me say that I know not everyone takes my stance on this,but if you are a medical drama and you are talking about something as serious as a heart defect take the time to get the facts right before you put it on your show.I know Private Practice has a medical team and I am extremely disappointed that they clearly didn't consult the team. Or if they did,the medical team was clueless about HLHS.

This was only part of the letter I sent to ABC.

Congential Heart Defects happen in 1 out of 100 people and Hypoplastic Left Heart Syndrome is the defect in 1% of these cases.
However Hypoplastic Left Heart Syndrome is not a death sentance. There are options for the family.There was no reason to paint it as doom and gloom.If Hypoplastic Left Heart Syndrome was truly a death sentance like was stated on the show than many of the children and adults I know who have Hypoplastic Left Heart Syndrome would be dead.And they aren't.Get the facts correct.

This was what I posted on the ABC boards which I never do.

I have been watching Private Practice from the beginning and this is the first time I was truly angry by an episode.Congential Heart Defects happen in 1 out of 100 people and Hypoplastic Left Heart Syndrome is the defect in 1% of these cases.

However Hypoplastic Left Heart Syndrome is not a death sentance. There are options for the family.There was no reason to paint it as doom and gloom.If Hypoplastic Left Heart Syndrome was truly a death sentance like was stated on the show than many of the children and adults I know who have Hypoplastic Left Heart Syndrome would be dead.And they aren't.Get the facts right.

There are options that the show didn't even talk about(Or if they did talk about them we didn't see it and that's just as bad).

With Hypoplastic Left Heart Syndrome they generally go for the 3 stage operation.

1. Norwood at about a week old depending on the heart function

2. Glenn about about 6 to 8 months depending on the heart function

3. Fontan at about 3-4 years depending on the heart function

Some kids are not eligible for the 3 stage operation so they opt for a heart transplant.The problem with that is that there is a shortage of infant hearts available.Some patients have the three stage operation but still need a transplant in their teen years.

I know Private Practice has a team of physicians that they consult for storylines and maybe they need to find a pediatric cardiologist willing to help in cases like this.

Mothers who are pregnant with a Hypoplastic Left Heart baby need accurate information. There is hope for these babies even if the show failed to show that.

I truly hope that the letter and the postings will get to the right people. I'm still pretty steamed about the misinformation and I can only hope that the moms who are pregnant with HLHS babies don't lose hope because of this. There is always hope,

Understanding

I didn't truly understand my CHD until about 3 or 4 years ago. That was partly my fault because I didn't really want to know. I didn't ask questions of anyone.In fact I always let my mom or grandmother ask them for me.And yet in other non-medical parts of my life I did ask questions and I was very assertive.Part of it was the fault of my family. They made the mistake by not explaining things to me from an early age in very clear terms. They micromanaged my medical care from the beginning and it wasn't until right before my last surgery that they relinquished control at least somewhat.

I had been in control of taking my medications and keeping an eye on my heart rate from the time I was about 10 or 11. Everything else was things I didn't care to be involved in. That was the mistake I made.I should have been more assertive and done the questioning myself. I remember the last time I was hospitalized for arrhythmias,was the first time I asked a question.I asked my cardiologist and my surgeon (who came to see me for no reason at all) if the arrhythmia could be caused by stress.One doctor said no and the other one said yes absolutely.

I recieved a book in 2008 called It's My Heart which detailed a lot of CHD's and finally I was able to understand mine and why they called it Double Outlet Right Ventricle Tetralogy of Fallot Type. I had always known that in some ways DORV was like ToF,but I never understood how. Now I understand that it's because DORV shares 2 of the 4 ToF defects.

Parents make sure you tell your children early what exactly is wrong with their heart so they understand it earlier than I did.Obviously tailor the explainations to be age appropriate,but nevertheless be honest with them from the beginning.

A Normal CHDer

The other day I was having a conversation via text messages with another Adult CHDer who was nervous about me meeting her because she did not live like a normal CHDer. I told her that it didn't matter and that I was not a judgemental person.

Then I got to thinking.Is there such a thing as a "normal" CHDer. We all have different complications and restrictions.We don't all have the exact same diagnosis and we don't all have the same cardiologist who imposes the exact same limits on us. Some of us have pulmonary issues in conjunction with our cardiac issues.Some of us have skeletal-musuclar issues as well.Some CHDers have strokes and some don't. And some of us use a wheelchair to get around.Not because of our cardiac issues . but because of other secondary issues. Every single CHDer that I know is different in diagnosis or restrictions or in complications.

Some of us adult CHDers aren't as careful with our bodies as we should be.Some of us take unecessary risks in order to feel "normal" We know we should be more careful but some of us honestly don't talk about our cardiac issues outside of the online communities that we are a part of.

CHD kids learn at a very young age that they are different than other kids their age. These kids see more doctors,endure more pokes and procedures than healthy kids do.They often don't like talking about it to their "healthy" friends because they don't want to seem different.

So not only are us CHDers not "normal" because of everything we have had to go through. Each of us CHDers has had a unique journey whether it's because of the diagnoses or the complications we have endured or even the restrictions that have been placed upon us.

Fear of the unknown

Next week I'll be making an appointment with a new cardiologist. I am scared to death to do this. I have been with my pediatric cardiologist since I was 2,so for 23 years.He knows me and my medical history better than anyone else does (except my family) Having to transition to an adult cardiologist is nerve-wracking. I have an excellent relationship and rapport with my pediatric cardiologist and I don't know if I'll have that same thing with the new guy.

I know that this has to be done because my pediatric cardiologist isn't well educated in the issues surrounding aldults with complex CHD's.But the idea of leaving him and the office staff who I have grown to love and appreciate (especially my favorite Echo tech Penny) scares me to no end.

I wonder many things about the new guy.I wonder if we'll develop a good patient/doctor relationship.I wonder if we'll have a good rapport and I wonder if I'll trust him.I wonder what kinds of tests/procedures he'll want to run.I wonder if he'll want to do a cath so he has a better idea of my cardiac function.

Life is scary.Change is scary. But in this case it is a necessary change.That said I don't think I'll be able to relax until I have met the new guy and can see if we mesh well together as a doctor/patient relationship.

Musings

I never knew this family,but today I cannot stop thinking about them.Nicole DiCarlo and her family and friends are celebrating the life of her sweet boy Travis Gary DiCarlo who passed away at only 16 months of age. I cannot imagine the pain that this family is experiencing and I wish more than anything that I would take their pain away.

No one deserves to have to deal with this. No one deserves to lose a child. I wish that parents didn't have to experience this. I know that people say life isn't fair,but this certainly isn't.It's not fair that a mother should have to bury their child.It's not fair that a mother should outlive their child.

But then again nothing about the CHD  world is fair. It's not fair that 3 year olds see more doctors than kids their own age.It's not fair that they are subjected to surgeries and caths and pokes.It's not fair that normal for these kids is a lifetime of health concerns.

Knowing other kids who are going through the same things is a huge morale booster. I didn't have such a big group of other CHDers when I was little but nowadays there is a bigger circle because of the advancements in medicine.More CHDers are living longer and developing friendships with other CHDers through heart camps and support groups.

My Letter to my CHD Family who I have met on Facebook

Dear CHD Family

 First of all, I want to say thank you. Thank you for allowing me to share in your successes and failures,joys and sorrows.Trust has always been a big issue for me so being allowed in to so many people's lives so willingly feels amazing. Knowing that people care about me is a great feeling. Especially given that the majority of you I have never met and yet you still trust me.

I thought I was done being in the CHD community. I wondered why I should even bother.I didn't think I had anything to offer to CHD parents. I figured I was done with surgeries and other invasive procedures so I didn't think I could get anything out of being involved in the CHD community.But I was wrong.My job now is to offer support to those who are just beginning their heart journey. I want to be there,emotionally,physically for those families who are embarking on both the scary and unknown.

I also have to thank several of the CHD Angel parents who have opened their hearts and have loved me so much despite the pain they are experiencing every day.They are truly inspirational to me and I can only hope I can be half the woman that these women are. I can only hope I find the kind of partner that many of these Angel Mommies have.

Thank you to the parents for allowing me to share in your children's journey's.Thank you Angel parents for sharing your angels with me. I know I have been told that CHD parents are blessed to know me,but they are wrong. I am blessed to know them. Their friendship and their love has meant more to me than they'll ever know.

Thank you to my fellow adult CHDer's. I love you all so much. You are my sisters and brothers. We share a kind of bond that our heart healthy siblings cannot understand though they may try to.

Thank you all for your love.Thank you all for your friendship and thank you all for your support

<3

Alexia