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.

5 Things You Should Stop Saying to This Congenital Heart Patient        5 Things You Should Stop Saying to This Congenital Heart Patient

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.

5 Things You Should Stop Saying to This Congenital Heart Patient        5 Things You Should Stop Saying to This Congenital Heart Patient

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.

1. I’m sure they will find a cure soon.

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.

5 Things You Should Stop Saying to This Congenital Heart Patient

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?)

5 Things You Should Stop Saying to This Congenital Heart Patient

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…

5 Things You Should Stop Saying to This Congenital Heart Patient

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 Things You Should Stop Saying to This Congenital Heart Patient

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
2014 EPS/Ablation

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.

5 Things You Should Stop Saying to This Congenital Heart Patient        5 Things You Should Stop Saying to This Congenital Heart Patient

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…

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10 Comments on “5 Things You Should Stop Saying to This Congenital Heart Patient

  1. Beautifully & thoughtfully written. I absolutely love your response to number 5. “Fearfully & wonderfully made” that is what you are. God makes no mistakes & you are perfect! And I’d like to throat punch the next person who utters number 2, 4 or 5. 1 & 3 show a lack of understanding of how the heart works or how medicine works; but 2,4 & 5 show the person lacks compassion, tact & a basic understanding of you period. I love you Kimmie!

    PS I didn’t know bacon & PB could be a thing. Hmmmmmm. Now I have another way to enjoy my favorite food.

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  2. I agree Tara – my biggest takeaway was the PB and Bacon. Wow!

    All kidding aside… SINCE you brought it up, I think THE thing we are called to do as Christians is to be more like Christ. It’s way easier said than done. My favorite stories of Him are when he bears witness to evidence of life in places of death. I don’t mean to use the strong wording in terms of the blog, but in terms of what Christ did. When the real SHTF, Christ would GO and just be there with people. There wasn’t a lot of commentary documented. It was primarily presence, and bearing witness. And He didn’t hide behind words to really get into the crap. He just walked right into it.

    I’m no expert in Christianity or congenital heart diseases. All I know is that I really feel God’s love and comfort when people simply show up and accompany me through the tough stuff. So I try to do it for others when I know about it. Don’t get me wrong – it’s daily work.

    The worst thing is that I don’t always know. People don’t always talk about their struggles because they have been so damaged by the questions or the frustration with people. I think that this blog is going to really help people that are in similar situations, and pointing out your experience and reactions will help to bear witness to people that you don’t even know. Maybe it will help them open up a bit more when they can really recognize Jesus when they see Him – know what that’s supposed to look like. So awesome.

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  3. LOL… I didn’t know either that bacon & P & B could be a thing… I just don’t know about that one…. My favorite Kimmie quote….”It is a balancing act to fit in survival and every day activities.”….

    Very well written Kim and something everyone needs to read and understand. Most people have no clue outside of their daily living… what it takes for the people around them, to just get through the day. When those people do come in contact, they do not know what to say, how to help, or just to be quiet. I find this to be true in my Hospice Care. Everything you wrote about… I have heard someone ask about a family member at one time or another. I have to remind them that it is care and comfort that is given. (and to Christians, that is healing to go home to heaven)

    Thank you for sharing your thoughts and helping others understand the view from the trail….

    Faith

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  4. Wow Kimmie, thank you so much for sharing this. It has really opened my eyes to exactly what you have endured your whole life. As I was reading,I couldn’t help but think about our high school days and if I was sensitive to you. I probably never asked once about how you have been effected by it and I want to apologize now. You are such an inspiration and a real example of what a genuine relationship is like with Jesus. It is messy and difficult and thank God He can take us the way we are with our screaming and fists and doubts and questions. I love you Kimmie!! 🙂

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  5. I don’t know if you were ever told, Kim, what an effect you had, I believe on our community of Bandon; at least you did on me, as a mother, and I assume many, if not all mothers and fathers. We all learned to hold our kids a little closer, and appreciate the life and relative normal health they had. I know it helped make ours a better family. It is so good to hear the strength and health of your spirit. Thank you

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    • Welcome Heart Sister! I’m glad you are identifying with the experiences! My goal is to have this therapeutic writing experiences and hopefully meet others who have been through similar experiences. You are my first fellow CHD follower!! (Can you tell I am excited?!)

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      • Excellent! I haven’t found all that many CHD bloggers who aren’t parents of children with CHDs, rather than having a CHD themselves. I find writing about my CHD therapeutic as well, and I think it’s important that people (especially medics) know how we feel about our conditions and what we have to go through, so it’s good to share our stories…and to share with fellow people with CHDs as well – I’ve found this really invaluable in recent years.

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      • Its so true! A majority of support available is for parents of children with CHD. I’ve started to find a bigger community for adults with CHD on Instagram, which has been refreshing. Looking forward to reading more of your blog as well!!!!

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