Medications, Side Effects, and Safety
6/10/2014 2:01 PM
By Christy Sillman
I feel really lucky that for most of my life I wasn’t on any medications aside from the prophylactic antibiotics I took prior to dental procedures. When I sought out care from my fantastic ACHD doctor and finally got the care I needed, I was suddenly faced with starting multiple heart medications because my heart health had been neglected for so long.
For many patients, their ACHD care involves medications. As an ACHD nurse I often find myself counseling patients on medication compliance, safety, and understanding the side effects. I’d like to share some of my tips.
Why is my doctor starting a new medication?
Part of ACHD lifelong care is keeping our hearts as strong as possible for as long as possible. Your ACHD doctor may want you to start a new medication even when you don’t have symptoms—prevention is the name of the game. Many of us take blood thinners like Coumadin to prevent blood clots that could cause disastrous complications, or beta blockers to keep our heart pumping strongly, or anti-arrhythmic medications to prevent arrhythmias, or prophylactic antibiotics to prevent endocarditis. See a theme? It’s all about prevention—giving our hearts the best chance at lifelong strength.
Sometimes I feel like the medication side effects are worse than my heart symptoms!
Some our heart medications may have serious or annoying side effects. This is probably the hardest part of medication compliance—when the side effects make you feel worse instead of better. The heart medications our ACHD physicians prescribe may involve a period of adjustment, and for some of us, this adjustment can be rough!
When I started my beta blocker I was unbearably dizzy, felt dumb as a doornail, and was nauseous 24/7. I wanted to stop the med right away—but I knew my heart needed it. So I worked with my ACHD team to figure out a schedule so I could slowly work my way up to my goal dose. I cleared my schedule the first few days of the new/higher dose, and I just muscled through it. I’m not saying everyone can do that because with some medications we are just not compatible, but I encourage everyone to discuss side effects with their ACHD team and think of ways to help adjust to them.
I always forget to take my meds!
Once I stated started taking more daily medications, I began to feel overwhelmed by the management of my medications. I was constantly forgetting and would often say, “Did I take that already?”
Then I discovered a weekly pill pack with pop-out days of the week (at Target). Now I dedicate 20 minutes a week to setting up my pill pack for the rest of the week. Each day I simply pop out the day and throw it in my pocket/purse. The constant jiggling of the pill pack is enough to remind me it’s time to take them, but in the beginning I set a reminder alarm. I take my meds with breakfast and dinner—I find having them connected to a meal is an easy reminder of when I need to take them. This system also works well with making sure I refill my prescriptions at least 7 days before I run out. Bottom line—try to find a system that will help you to remember. If you’re basing taking your daily medication off of memory alone you’ll be constantly kicking yourself. Find tools to help you succeed in your medication adherence.
I have little ones at home and I worry about them getting into my meds!
Safety is key, especially when you have children in your home (even just for a visit). I found that a large make-up box (a tackle box could work, too), a coded lock, and locked drawers give me the peace of mind to know my son and my nephew will be safe. When I put my daily pill packet in my purse I place it in the deepest pocket with a zip closure and hang my purse high above a little one’s reach. I also talk to my son often about medications, when we take them (sick vs. prevention), and stress the importance of never ever “trying” mommy’s meds because they could hurt him. He’s terrified of my pills and I like it that way.
Medications are a daily reminder of our CHD, and can be tough to manage at times. Many people tell me they feel helpless at times about their CHD, but as I’ve described in past blogs, you have to grasp whatever control you have. Finding a system to help you manage you medications, keeping an open dialogue with your physician, and understanding why you’re on a medication are all part of being an active member of your ACHD team and is one major thing you can control with you CHD.
Christy Sillman was born with tetralogy of Fallot with pulmonary atresia. She is a wife, mother, writer, and the nurse coordinator at The Adult Congenital Heart Program at Stanford. Christy also co-coordinates a pilot ACHD support group through Mended Little Hearts called Surviving CHD. She is passionate about educating, advocating, and advancing the field of adult congenital heart care.
2 comment(s) so far...
By Maria on
6/10/2014 8:09 PM
Re: Medications, Side Effects, and Safety
we have the same medical condition my question to you is this I started taking maltaq and I have had a ton of really werid side effects... Have you taken this medicine and if so what helped you?
By Christy on
6/12/2014 1:43 AM
Re: Medications, Side Effects, and Safety
I have not had to take any anti-arrhythmias such as Maltaq, but arrhythmias in TOF'ers are not uncommon. I encourage you to discuss your side effects with your ACHD cardiologist. I find a helpful question when starting any new medication is "are there any effects I should watch for?" Many medications have side effects but we just need to know which ones to worry about (ie. Coumadin and bloody noses that won't stop vs. Coumadin and bruising - the blood nose is a dangerous sign where as the bruising is expected).
I hope you're able to find an anti-arrhythmic you feel compatible with.