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The C Word

Dec 7

Posted by: ACHA
12/7/2012 1:08 PM  RssIcon

By Stephie Goldfish

Compliance or non-compliance: that is the big C word. And compliance is a topic that needs to be addressed here, in all seriousness.

I never thought of myself as someone who doesn’t follow doctors’ orders. But at my last appointment I got the wakeup call of my life.

Over the past few months, thinking that I’d try to go natural and holistic, I tried going off some of my medicines. One of the reasons I did this is that one of the main medicines I take causes really bad heart burn or acid reflux. I had begun to feel too toxic with all of the medicine I was taking, and had thought my liver or kidneys were failing, not to mention my heart.

At my last appointment, I did my 6-minute walk better than the last one, but still, this alone wasn’t going to impress my doctor, who had to tell me that because of my not taking my medicine regularly, she had to add non-compliance for the first time to my chart. Then we had a big discussion about why I had not been taking the medicines as prescribed.

My doctor told me that, unfortunately, my heart is going to fail a lot sooner than my kidneys or liver if I don’t take the medicine. I explained my concerns, and for the acid reflux and stomach issues, she prescribed a medicine to help alleviate this problem. She also mentioned that she would have me on a continuous IV of PH medicine, but because I haven’t been taking my medicine right said she wouldn’t do this right now—if I didn’t do what was necessary for the IV line, I could die if it wasn’t administered properly.

So, since my last appointment, I’ve yielded, and I’ve been very compliant in taking my medicine and using my oxygen. I have also been walking more. And I have to admit, I feel much better.

Compliance is something we as CHD patients need to really consider, and this has never been an issue with me until the past few years. I know that one day my heart will either give out due to the hard work it goes through on a daily basis and the possibility of needing a lung or heart/lung transplant has been in my future since I was first diagnosed. And just because I have outlived doctors’ expectations doesn’t take away the seriousness of needing to comply with the medicine and oxygen regimen prescribed.

In fact, if we as CHD patients aren’t compliant, doctors will not even advise or recommend us to the transplant team of doctors, because after transplants there is the addition of anti-rejection medicines.

Besides the medicines we have to take and oxygen we need to breathe, we can still try to do the other things beneficial for our hearts and overall health, like getting proper rest, exercising, and eating nutritional and heart-healthy foods.

If we have any issues with a certain medicine, we can discuss it with our doctors and see if there is another alternative we can take or maybe the dose can be adjusted.

So, to comply or not to comply shouldn’t be in question, but rather living in such a manner that we take our hearts, health, and life seriously and be responsible in our daily care.

Stephie Goldfish, aka Stephanie Hodgson, was born with a large ventricular septal defect, but it wasn't diagnosed until age 17. Since her defect went unrepaired, this resulted in Eisenmenger’s physiology, and she has developed severe secondary pulmonary hypertension. Stephie is an artist who graduated at the top of her class from The Art Institute of Pittsburgh; she is currently pursuing her love of writing, and writes short stories and poetry, as well as nonfiction. Learn more at her website and personal blog.

Copyright ©2012 ACHA

Location: Blogs Parent Separator ACHA Blog

3 comment(s) so far...


Re: The C Word

Having recently finished a Masters in Public Health, I'm slightly surprised that they're using the word "compliant" actually. From what I'vs read on the subject, by far not an exhaustive search, recent literature about compliance and interpersonal communication between doctors and patients often shows "non-compliance" is actually the result of a lack of information that is vital to your care not being shared or addressed by one party or the other. Adherence is the word used more often, I suppose because it involved two things coming together & glue in the middle.

Regardless of the exact words though, I think your post illustrates that balancing act between wanting to feel like you're in control of your healthcare decisions and figuring out what is really relevant to tell your doc. I'm very glad that you and your doc talked instead of her just slapping that label on. ...and I'm even more glad you're feeling better because of the changes you all made together! What an excellent lesson in communication & dedication to your health!

By Gizzy on   12/9/2012 8:17 PM

Re: The C Word

As a "rebel" from my Dr's orders and one who also doesn't take medicine as prescribed I feel your struggle. I'm not on oxygen, but I too got to that point where meds on top of meds made me feel toxic and chose to take my health into my own hands. This idea of Compliance is a frightening one, esp with our upcoming law changes. While I support ACHA organization I'm concerned with their Gov't focus and mandates on what Dr's think is best for Us, the patients health. I've been managing my own care for the last 6 years. Only doing yearly checkups. I'm healthier than I've ever been. Like you I've improved my heart function, my body feels better, my heart feels fine, and best of all my mental health is better. IDK how to feel about "remaining in compliance" with my health. It is ultimately OUR lives. The Dr's don't have to live with us every day. Don't have to deal with our daily struggles. A pill isn't always the solution or best fix to a problem either. Humans need to begin to see their own health as something they are in control of. Not Dr's not pills and not living some dead lives of compliance with no enjoyment, say so, or control over our decisions. Best of luck!

By Justin Kurtz on   12/9/2012 8:17 PM

Re: The C Word

Hi Stephanie,

As I read over your post, I was surprised to see you mention an IV PH medication. Upon further reading, I realized that you have secondary PH - just like myself! Although we have it for different reasons. But it is always nice to meet a fellow CHD'er but also a PHriend as well!

As for the acid reflex and heart burn, I was having the same problem with my medication and they prescribe some anti-reflex; which took care of that. I think everyone who read your post learned an important lesson. Talk to your doctor before stopping or starting any medications!

And the medication I am on for my PH (perhaps we are taking the same kind!) can create a problem for my liver as well - putting it into liver failure. I'm not sure how long you've been on your medication, but I have been on mine for the past 11 years and I can reassure you that I have never had a problem with my liver. It is a scary idea that it could happen, but thankfully I know that if something does happen, there are medications out there that can help our livers if anything does go wrong.

But I think you are completely right about compliance. Compliance to me doesn't me you become some person who can be controlled and told what to do. Compliance to me is being able to have an open relationship with your doctor, talk about what is worrisome, get some answers and make an inform decision based off of facts and not just feelings. Make a decision WITH your doctor.

When I was in 8th grade and I needed another surgery to put in a pacemaker/defibulator I was adamant that I didn't want it. I was sick and tired of surgeries and didn't want another scar on my body. I thought that if I just managed my caffeine intake, I'd be good. After talking to the doctors, I realized that the pacemaker and defibulator was something that I needed to do. They took their time with me, let me cry, and let me talk about my fears. I feel like, we have worked this far to still be alive; why jeopardize all our hard work?

Hope and Love,

By Becca on   12/11/2012 4:50 PM

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