Posts Tagged ‘life’

Nine Point Plan for Weak Hearts

May 4, 2010

Dr. John M. is a blogger I have recently found, and I like his writing. He’s currently an Electrophysiologist (Heart Rhythm Specialist) living and working in Louisville, Kentucky and his blog entries are very informative.

In this post, Dr. John gives a nine-point plan that usually keeps a weak heart going:

The sonogram may show a weak heart, and weak hearts are supposed to limit longevity, but those that live the plan seem to just keep showing up every year for their routine checks.

Of course, this nine-point plan may not be your nine-point plan! The person given in the example is specifically an older gentleman with an Implantable Cardioverter Defibrillator (ICD). So you will have to discuss this with your doctor and revise the plan to fit your situation (if you chose to use it at all). But let’s look at Dr. John’s nine points:

  1. ACE/ARB inhibitor (cost: 4.00/month)
  2. Beta-Blocker (cost: 4.00/month)
  3. Aspirin (cost: 1.00/month)
  4. Statin (cost: starting at 4.00/month)
  5. Exercise: (cost: sneakers and jacket)
  6. Nutritional restraint: (cost: 0.00)
  7. Goodwill to others: (cost: 0.00)
  8. Lifelong companionship (costs: variable)
  9. Sleep hygiene (costs: variable, but not too much)

Obviously, your drugs are probably going to be different, but Number 5 through 9 apply to anyone fighting a heart problem. As I have said before, check with your own doctor first.

But in general, following these nine points should extend your life. And as I often write, “Every heart deserves to live a lifetime!”

Don’t Hide

June 11, 2009

Duncan Cross has a great post about chronic illness that he’s titled The stupid truth about nearly every disease that young people get. Duncan lists a laundry list of side effects and personal crises that sufferers of that illness could experience. And then he asks the Big Question: which Chronic Illness is this?

There is a correct answer, but that’s not the point. The list can easily apply to nearly every Chronic Illness out there – Heart Defects, Cancer, HIV, and so on. The point, as Duncan says, is “it sucks, but no illness has a monopoly on suck.”

Our worst trait – Duncan has picked up on this also – is our tendency to let our our illness define us. It doesn’t. Granted, we are shaped by our experiences, but in the end many of our experiences are common to just being human. And if we learn to deal with that, we’ll see that we are pretty much like everyone else.

I have a heart defect, and because of it I have a variety of unusual life experiences. But if you strip out everything in my life that is affected by my heart, there is still more than 90% of me left… and that part is boringly normal.  I eat, I sleep, I chase the ladies – occasionally they chase me, but not as often as they should –  and I even get frustrated and yell at the TV when the Atlanta Braves aren’t doing well. (I’ve been yelling a lot lately!) Oh, you do things like that too? It must not be that big of a deal, then.

I had some good luck while I was traveling to Philadelphia for the Adult Congenital Heart Association (ACHA) convention – I had to change planes in Memphis, but my flight was delayed and that would leave me with only ten minutes to change planes. When I pointed that out to the ticket agent, they shifted me to another flight – direct to Philadelphia!  But I arrived ninety minutes early and couldn’t check into the hotel, so I sat down and did a little people watching. I tried to guess who among those who passed by might also be an ACHA member. All my guesses were wrong – we don’t wear signs.

So even though some of us have to live with a different form of normal, we’re more alike than we are different. The goal of living with a heart defect is not to withdraw into our own world, but to live. And that is probably the most important piece of wisdom that I can pass on.


February 24, 2009

I’m back, but still not fully participating yet. It’s one of those inconveniences of a Heart Defect, recovery time is always a bit longer. A cold, flu, or even mild food poisoning really throws you for a loop… and that is if you are healthy!

There are a lot of “ifs” and “buts” involved, too. For example, I’m on a diet designed to combat Congestive Heart Failure (CHF); one of the unbreakable guidelines is not to drink more than 2000 milliliters of liquid. BUT… I shouldn’t get dehydrated. So I am allowed to break that rule, gently. Drink as much as I need, but monitor myself for swelling. If I’m getting puffy, back off a bit.

Never, ever drink Gatorade or any other sports drink, because you don’t need all the salt and potassium they deliver. It’ll throw your system out of whack. BUT now that you are losing so much because of diarrhea, Gatorade is not only OK but is recommended. If you lose too many electrolytes without replacing them, you could start having skipped beats. I was asked which flavor of Gatorade I wanted and I didn’t even know that it was available in different flavors! The last time I drank Gatorade, all they had was the light green formula. And again, monitor your intake, because too much isn’t good for you.

I do have a good way to monitor my fluid/sodium intake, and I discovered it quite by accident. All I do is slide my MedicAlert bracelet until it is over the bone located behind my thumb, then turn it in a complete circle. If it moves easily, everything is cool. If not, I need to rein myself in. This works best when you don’t take the bracelet off – which I don’t do. I was in the ER once and the nurses insisted; it would interfere with an IV they planned to start. It took forever to get used to the new “setting” once I was able to put it back on!

Life gets complicated for someone with a Congenital Heart Defect at times, and it is the simplest things that make it complicated. But you can’t let it get to you. If you let every little thing ruin your plans, you’ll sit at home all day and the world will go on without you… and you’ll miss all the fun!

We’re all in this Together

November 22, 2008

You’re having a rough week.

If having a Congenital Heart Defect isn’t enough, you’re dealing with all the problems that can occur as a result of your defect: Having to watch your diet all the time. You can’t run and play with the other kids. Having to take a dozen pills every single day. The side effects of all that medication. (I’m pretty sure that my medicine gives me weird dreams.)  The doctor taking a long pause before he gives you your test results… that’s usually a BAD THING right there. Getting out of bed and making it to work on days that you feel like death warmed over. The guy in the next cubicle sneezing and sniffling, while you hope that he’s just got allergies, because a cold puts you in bed for a week.

And dealing with people who just don’t get it, because they are as healthy as a horse and have never even been in a hospital, except for that time when their Aunt Emma broke her leg. It’s frustrating and maddening and it makes you want to punch the wall. It feels like you are climbing Mount Everest, because it never ends.

You’re right… you are climbing Everest. It’s the biggest challenge you’ll ever face. But just remember, a lot of people never make it to the top of the world’s tallest mountain; they get close but have to turn back. For one reason or another, the journey is too much for them. And just remember, these people who always seem to be giving you unsolicited (and useless) advice… they may have climbed a few hills, but they’ve never done anything like this. So you have my permission to politely ignore them.

And any time life starts getting to you, any time you just feel like you HAVE HAD IT UP TO HERE!, go to your Congenital Heart Defect support group and tell them all about it. Vent! (but don’t whine!) Just empty yourself out. We won’t mind, and we certainly understand. You see, we’ve all been there before. We’re all experienced mountain climbers, and we’re more than happy to throw you a rope. Because next time, you may have to throw us a lifeline.

So how do you climb Mount Everest? You do it one step at a time.

Racing the Clock

October 27, 2008

First for some news: Colby is out of Vanderbilt’s PCICU. There hasn’t been a new blog post on him since Friday; hopefully that just means he’s recovering and his parents have been spending time with him and catching up on their rest. There are some photos on his blog; the young man is quite handsome!

Meanwhile… the situation isn’t nearly as bright for Katie. She’s really having a difficult time; she’s scheduled for heart surgery Wednesday and her parents are facing some critical decisions. Go to her blog, offer your support, and keep this family in your thoughts.

Reading about Katie has caused me to scrap my idea for today’s post to discuss something extremely important: If you are the parent of a Cardiac Kid, you will have to make some extremely difficult decisions concerning your child. This is not something that might happen, it WILL happen – nearly all Congenital Heart Defects have to be dealt with soon after birth. Usually this will involve surgery, and quite often time is a factor.

“The clock starts… NOW!” the host says on all those game shows. You think solving the puzzle in 30 seconds to win a new car causes pressure? It doesn’t even come close. The clock is running and you’re trying to decide what to do to save your child’s life. This is where a couple are literally thrown into the fire… and come out on the other side with a strength they never knew they had.

Modern parents have the advantage of a sonogram. Congenital Heart Defects can be detected before the child is born and a plan can be formed. Obviously, the plan may have to be altered once the baby arrives and the doctors have a chance to examine him, but at least there is a road map to follow. If this happens, we plan to do that. If that happens, we’ll try Plan B. Older Heart Moms can tell you stories of the pre-sonogram days when the defect was discovered only after the child was born. From the happiest day of their lives to a life threatening crisis in a matter of moments, but somehow our parents got us (and themselves) through it.

Do not, if possible, make any life changing decision without discussing it with your partner. There are times when things go badly so fast that the other person is out of touch, and the remaining parent has to make the decision alone. Avoid this if possible – discuss options beforehand, and try to come to a basic agreement. Be completely honest with each other. It is a hard conversation to have, but it could keep a decision from being made that is contrary to a parent’s wishes. Someone always gets blamed, and marriages don’t survive that kind of pressure.

Once the decision is made, it’s done, and there is no second guessing. Never, ever, second guess yourself, because if you do it once, you’ll be doing it for the rest of your life. You can’t win the “But what if…?” game, so don’t even play it. Get all the information you can, as quickly as you can, talk it over with each other, and after that – it’s out of your hands. You’ve done the best that you can.

No matter what your core beliefs are, be sure to keep Katie and her parents in your thoughts.

Don’t just survive, THRIVE!

October 24, 2008

Live your life.

That’s probably the best three words of advice I can give you. You (or your child) has a Congenital Heart Defect. Certainly there will be times that care has to be taken, adjustments have to be made. With a bad heart, you must take care of yourself first. Don’t volunteer to be on the “tote and load crew” and don’t let anyone volunteer you for something that you aren’t capable of doing. Sometimes you have to use a little trickery; when I worked at the museum I’d always volunteer for a job “if someone will help me.” When I got tired, I’d say “Hey, you look a bit tired, let’s take a quick break so you can catch your breath!” (Sneaky, huh?)

You have a Heart Defect, but the defect does not have you. Never give up and never give in. Exercise will build your stamina and allow you to do more later. Don’t have an exercise program? Talk to your doctor. Personally, I walk. Start at 15 minutes a day and walk until you are used to walking that 15 minutes. The next day, walk 20 minutes. Increase your time every few days – you’ll feel pretty tough those first few days, but after a while, you’ll feel your extra stamina kicking in when you need it. (Don’t take medical advice from me, since I’m not a doctor. This is what works FOR ME. Ask your doctor’s advice!)

Get involved. Find a good Congenital Heart Defect support group and participate. Share your story – who cares if you stumble and stutter at first? The more times you tell it, the more comfortable you will be. Be there for others when they are going through a rough time. Stand duty in a hospital with a family that needs your support. Volunteer to stay while they get lunch or some much needed rest. Support one another in person and online.

Teach by example. Wear a CHD Survivor T-Shirt. Participate in fundraisers. Get a customized license plate like one of my blogger friends has: HRT MOM. My friend Rachel has it right: “I’m a heart warrior!” I LOVE THAT PHRASE! I think that from now on, I’ll refer to adults with a Congenital Heart Defect as Heart Warriors. We fight battles that you can’t even begin to imagine!

Encourage research. Write your Representative at all levels of government. Make sure CHD issues become a priority. And hope for the day when all Cardiac Kids, Heart Moms and Heart Dads, and Heart Warriors can say, “There will be no more like us.”