Zero Regrets

 My name is Brooke Fescenmeyer. I am 23 years old and I live in Pocatello, Idaho. I am a student at Idaho State University studying speech therapy. I've started this webpage to catalogue my life as an adult with a congenital heart defect.

When I was born, I was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a complex congenital heart defect in which the left side of the heart is underdeveloped or missing. Within 24 hours of being born, my parents and i were flown cross-country to Boston, Massachusetts to being a series of 3 surgeries to save my life.

Today, I am basically healthy. I see my pediatric cardiologist once per year and I visit a natualpathic doctor to manage my condition. Health and nutrition are paramount to me and maintining a healthy lifestyle. These things are important for everyone, but for me, they are ten times as important.

My husband and I have been married for one year and enjoy our life together. He is training to become a commerical pilot while I'm getting my master's in speech therapy. We hope to be returning to the Northwest when I graduate.

I hope that this website will serve as a source of information and hope for families of children with congetnial heart disease and anyone else who reads this. I am also going to be doing my master's thesis on children with congenital heart defects so this site will also serve to catalouge that journey.  

 

Entry for July 21, 2009

At a recent picinic for Intermountain Healing Hearts, an advocacy group for families of children with congential heart defects in Salt Lake City, UT, it was suggested to me that I start a blog to catalogue my life. Here is my attempt to fulfill this suggestion.

A little about me: I am 23 years old, and a second year graduate student at Idaho State University studying speech therapy. I have been married to my husband, Matthew for one year. He is my best friend and I would not be where I am today without him.

I am a survivor. I was born with a congenital heart defect known as Hypoplastic Left Heart Syndrome. At the time I was born, only two places in the country preformed the surgeries I needed to survive. The first location was Philidephia, Pennselvania, the othe was Boston, Massachusetts. I was born in San Jose, California. So at a little more than a day old, my parents and I were flow cross-country to Boston Children's Hospital to begin what would become a series of 3 open heart surgeries over the next 4 years.

Today, I am a happy, healthy adult. I go to school, work, and keep house for my husband and I. We are hoping to start a family sometime in the near future. I see a naturalpath and a pediatric cardiologist to manage my conditon. I am proud to say that I am on no perscriptions for my condition. My health and nutrition are always on the forefront of my concerns.

It might sound crazy, but I consider myself blessed to have been born with a congential heart defect. It has given me an intense drive to succeed and to make a difference in the world. I also have been blessed with an intense appritiation for each and every day. I want to bring hope to all families with little babies undergoing corrective heart surgery and anyone else who reads this.

 

Entry for July 24, 2009

I'm doing my best to set up this blog for people to view, but I'm not exactly Bill Gates. I will figure it out and hopefully people will find this soon. In the meanime I'll keep dropping my messages into cyperspace. Ahyway, back to the more important news of the day -- today is our one year Wedding Anniversary! Wow! I can't believe we've been married one year! The time has gone by so fast. Today more than ever I know I made the right choice in the man i married. I have an enormous amount of respect for Matthew. He is a kind, gentle, and patient man who still knows how to act like a kid! I really can't say enough about him. He has always been there for me whenever I need him. Girls, search high and low for the right guy. Follow your heart and don't settle for anything less than what you deserve. Oh, and one more caviat, make sure he can talk about emotions, so many guys can't and it makes things very difficult.
Anyway, that's all from me for today. Pray to the cybergods I can figure this thing out! lol

 Here is another attempt to set up a blog that people can view. Yahoo wasn't working out, you can only open your page to people in your address book, and I want this to be avaliable to the general public. It's Sunday morning and I'm taking it slow, though I do have alot of work to do. I've been watching home improvement shows on TV all morning, whishing for a house and a family. I know that every day we get a little bit closer, but sometimes progress seems slow. The student lifestyle is getting old, I've been at this nonstop for almost six years. I love school. I love to learn, but I'm ready to have a life.

Having the ideal life of a home and a family might be slightly more complicated for us than for the general population. So far, my cardiologist says that I can try and get pregnant, but it will be high risk. I know I have to be well prepared before we even try. I am trying to do my own reserch on the side and have found a book that is very helpful for adults with congential heart defects (CHD) entitiled "Adults with Congenital Heart Defects" published in 2008 by two doctors out of UCLA. This book has several chapters on the lifestlyle and health concerns of adults with congential heart defects, including execise, pregnancy, and birth control.  It's written for doctors, so the language is a little tough, but I would encourage any adult with CHD to pick it up and try to muscle through it.

I guess this is as good as a time as ever to introduce the topic for my Master's Thesis. I want to study the pragmatic (social language) of preschoolers who have a history of early corrective heart surgery (ECHS). Alot of the studies out there to date focus on children with a disorder known as d-transposition of the great arteries (D-TGA). This defect requires only one surgery to switch the major artieries of the heart so they function correctly. After this surgery, individuals with this defect basically have normal systems. In contrast, someone like me has a very different system from everyone else. One of my two remaining heart chambers was split in two, so I kind of have one whole and two half chambers. Then, arteries are rerouted so blood can circulate where it needs to go. Blood reaches my lungs using a system known as a Fontan Respiration, in which blood reaches my heart through passive resistance, instead of being pumped into the lungs. I would like to be able to study children who have undergone more than one heart surgery and have atypical systems. I don't know yet what aspect of social language I want to study, but I'm reading literature and considering the possibilities. One of the biggest challenges is living in a small town with limited access to these types of individuals. I

 Not sure I have much to report today. I'm almost done with my internship so that's good, it'll give me more time to work on my thesis.

Hopefully, I'll soon be able to post this blog to the forum of intermountainhealinghearts.org, an advocacy group for families of children with congential heart defects in the Salt Lake City area.

Well I guess I'm kind of at a loss for words this morning. Sorry I don't have much to say.

 I'm not feeling like myself today. I got woken up at 2:30 am by someone's either chirping smoke detector or highly annoying alarm clock. When you have a congenital heart defect, feeling 'off' is more than just an inconvinence, it's something to be concerned about. Being proactive about your health concerns is paramount for people like us.

I'm glad I have my husband, Matthew around when I feel like this, he always know how to make me smile and forget about what may/may not be wrong.

On a happier note, I just visited the forum for Intermountain Healing Hearts and got to see that people got alot of hope out of seeing someone with a complex congenital heart defect grown up and functioning normally. I know that I can't even understand what it means for these parents to meet someone like me, but it does make me feel like I've made a difference in this world.

To respond to a question posed by one of the mothers in regards to her daughter's hesitence to eat solid food, my mom has told me that I handled solid food in a funny way when I was going through my surgeries. She said I could put a cherrio in my mouth and not seem to know what to do with it. I've taken a class on swallowing disorders as part of my graduate coursework and I asked my teacher about it. She said that kids who have been intubated can be very protective of their mouths. Even today, i have sensory aversions to mushy foods like oatmeal and banannas. I like the taste of banannas but I can't eat them because they make me gag. I used to gag quite a bit growing up.

To anyone also concerned about their child's feeding habits, I would recommend seeing a feeding therapist, (a.k.a. speech therapist) if you think his/her diet and nutrition is being affected.

 I tried to get online to blog yesterday but it just didn't happen. That's when I realized that, yet again, I'm being pulled in about 10 different directions and something had to give. I was going to continue my internship through this week, even though I have enough hours, but I realized it wasn't going to happen. If there's anything I've learned over the past year, it's that there's a fine line between being busy and pushing myself too hard. Too many times, I've pushed myself too hard and wound up getting sick. My body can bag out pretty easily.

Anyway, on to the subject that I've been wanting to talk about -- healthcare. Everyone seems to be weighing in on Obama's healthcare reform, so I figured I should put in my two cents. I'm kind of unclear about the details of Obama's healthcare plan, something I wish he would be more foreward about, but the bottom line is something needs to change. Alot of people are concerned that the government is going to put beaurocracy between patients and doctors. If anyone thinks that this isn't happening right now, they're dreaming. Every day, insurance companies block their clients from the healthcare they need wether because it's due to a "preexisting condition" or because they rule the treatment "unncessary". The only person who should make judgements about what is or is not appropriate for an individual's healthcare is the doctor and the patient. Additionally, the preexisting condition clause has to go. I am an adult with a congenital heart defect, I see my cardiologist once per year and am on no perscriptions. Yet at any time, an insurance company  can say "sorry, we can't help you" simply because I have the :"label" of a congenital heart defect.

Please take a close look at the issues around healthcare and understand we need change now.

To continue the discussion on healthcare, I'd like to talk about some of the town hall meetings that have been going on during Congress' August recess. I really appriciate senators and representitives taking the time to hold these meetings and address individuals' concerns and questions. What I don't appriciate is people dragging their own assumptions and grievences into the proceedings that are irrelevant to the subject at hand.

 I was just watching CNN this morning, who was covering one such meeting in Pennsylvania. I think probably less than half of the individuals speaking actually had real questions about the bill, most people were dragging in their own prejudices and assumptions about the role of government and pressuring the attending senator to make a commitment to their specific views.

As an example, one woman who identified herself as first and foremost a conservative, asked the senator what he was going to do to restore this country to what the founding fathers intended. Does she mean a country where all the power is held by landowning white males? A country where women and minorities are not allowed to vote? I really don't think this is what she had in mind, but when she said "what the founding fathers indended," this is what she was implying, whether she knew it or not. Another man disrupted the meeting because he had not been given a card and allowed to speak, and proceeded to bring on divine dammnation onto the poor senator before storming out of the room. I have to ask you, what do these two examples have to do with healthcare? How did these two people contribute to a beneficial discussion about the subject at hand?

Now i'm not saying that people don't have a right to be opposed to healtcare reform, or that people should leave their opinions at the door. What I'm asking is that, if you do attend one of these town hall meetings, or in discussions with your family and friends, look at the issues objectively, and challenge not only the actions of Congress, but your own preconcieved notions about politics. I am so happy to see an issue grip the nation in such a way, but I would like people to keep their heads screwed on straight and try to look at the issues.