5 Things You Should Stop Saying to This Congenital Heart Patient
I planned a recent trip full of fun for myself. It was going to be an epic adventure and my first time traveling since moving home. For those of you who don’t know, I plan BIG! I love a good soul searching adventure and consider myself to be a nomad at heart. So of course I planned a trip that had me sailing the waterways on my annual trip with my uncle and cousins, road tripping to spend the week with my sister and traveling by rail to see my two besties in Portland. After hour 2 of the sailing trip, I realized that I mistakenly overestimated where my energy level was.
Our first night on the boat was our traditional “first dinner” at the dock with my cousins and their friends. While those that know me and are a part of my support system know a lot about congenital heart defects, those that don’t tend to ask a lot of questions. Don’t get me wrong, I don’t mind telling my story and answering questions….but some questions/statements have started to strike a sour chord with me.
While there is a large community of people living with congenital heart defects, it is not largely publicized like many other health issues. That is why I love advocating and teaching others about congenital heart defects. I don’t want people to stop asking questions. However, after the dinner, I had a weekend out on the water to reflect. I came up with a list of things that, as a heart patient and a Christian, I could go another lifetime without hearing.
This isn’t something that can be “cured.” We are born with this, we are patched and upgraded…but it doesn’t go away. Trust me, if there was a medicine that could grow multiple heart valves and close holes in the heart…then I think the CHD community would be at a whole different level. I won’t ever be cured from this but I will continue to be a patchworked miracle. I know many of us feel this way, but don’t want to be reminded of it.
2. Have you prayed about it?
I don’t know many people in the Christian or matter of fact any other religious faith that when dealing with a chronic illness doesn’t pray, meditate or cry out. For most of us, we spend our lives in the hospital and every time it is scary, every time it is painful and every time we pray. If we are angry at God and can’t summon a prayer, we rely on those around us to pray for us. We know that God is with us even through the anger and frustration. If you know me, know my story and then ask me if I have prayed about it…then you really haven’t listened to the story at all. (Can you tell I’ve been asked this too many times?)
3. Have you thought about a heart transplant?
I can understand why people would ask this question and it is valid. However, this question to me is now like the equivalent to asking a person who has just broken their ankle if they are going to cut off the entire leg and replace it with a new one. Many congenital heart patients have parts of their heart that do not work properly, but their heart is still beating. It is also very likely that some of them (like myself) are not eligible for a heart transplant due various factors. Medical science for congenital heart defects has grown immensely since I was born in 1980 and I believe that they continue to make strides every year towards new technology that will keep people like myself up and running. There are parts of me that are broken, but my heart is still beating…
4. Have you tried changing your diet?
Come on…really?! I will be the first one to admit that I LOVE peanutbutter, that my little guilty pleasure is eating a traditional family Peanutbutter&Bacon sandwich or that sometimes when I see a Big Hunk candy bar I do a little dance. But lets get real…I know that if I stopped eating those things, my heart defect wouldn’t go away. I have gained weight over the years but I know that it is due, largely in part, to a crazy amount of surgeries and having no energy to work out. Congenital heart patients struggle with chronic pain, a very low energy level, high blood pressure and low oxygen levels. It is a balancing act to fit in survival and every day activities. I know I do my best to fit in physical activity and eating the best I can. Asking a question like that is assuming I wouldn’t do everything in my power to heal my body.
5.I’m sure if you really believe, you will be healed!
This last statement gets me every time (yes I have been told this more than once). What I have to say to this is…I believe. I believe that God made me perfectly, including this defect. I believe that this isn’t a punishment or a test to see how much faith I have. I believe that I have already seen miracles..every year growing up they would tell my family that there was nothing more they could do for me, science hadn’t developed anything..the next year, there would be a new invention that would breathe new life into me (no pun intended). I think its hard for people (even in the Christian community) to see my belief the way it is…its gritty, its messy and its not perfect. I have yelled at God, given up on God, questioned every part of why I’m here with this defect. What I find surprising is that people assume that God hasn’t already healed me…I’ve been believing for years and He has been healing me for years. You want proof…here it is…
1980 Shunt, Systemic To Pulmonary, Modified Blalock-taussig Shunt (mbts)
1986 Shunt, Systemic To Pulmonary, Modified Blalock-taussig Shunt (mbts)
1986 Left Sided Unifocalization
1987 Transection Of Right Systemic To Pulmonary Collateral
1987 Tetralogy Repair With 16mm Ionescu-shiley Conduit
1994 Balloon Valvuloplasty, Pulmonic
1995 Rv To Pa Conduit Replacement
1995 Valve Replacement, Aortic (avr), Mechanical
1995 Vsd Repair, Patch
2004 Ascending Aorta And Ao. Arch Repair
2004 Valve Replacement, Aortic (avr), Homograft
2007 Icd (aicd) Implantation
2011 Replacement Icd Implantation
2011 Pulmonary stent implant
These are just a few of the procedures I have been through in my lifetime and in every instance I was healed, repaired and continued to carry on. In every instance it led to more oxygen, better blood flow, more years to live, less crazy heartbeats. So please open your eyes…when a congenital heart patient is standing before you it means they have been healed in many ways.
I hope this has helped and maybe even opened some eyes. In no way was this meant to discourage people from asking questions or having an open dialogue about congenital heart defects.
If anything, I hope this helps you see my view from the recovery trail…