6/21/2011 12:06 PM
By Heather Abbott
In June 2008, I had open heart surgery to replace my severely leaking pulmonary valve (PVR). This leak was a direct result of my original Tetralogy of Fallot repair back in 1977 so I’ve always known a valve replacement was possible. My surgery was not an emergency, though it was an inevitable necessity in my life. At the time, I was working full-time in marketing, had two Ivy League degrees, exercised almost daily, and traveled often for both work and pleasure. I had friends and a significant other. Pretty much a normal lifestyle for a young 30-something except that I was born with a heart defect.
Living with a congenital heart defect for me means living a normal lifestyle with the constant fear in back of my mind that I will need a heart procedure done at some point. With medical technology these days, these procedures can be considered somewhat “minor”; however, recovery time is not overnight. So proper preparation is key to a successful recovery. Personally, I took about 7 months to fully prepare for my surgery and 4-6 week recovery and I’d even venture to call the experience my personal Olympics. I experienced minimal post-op pain and was back at work part-time within 6 weeks, New York City commuting and all. So to commemorate this 3rd anniversary of my PVR, here are some basic tips on how I prepared—I hope these are helpful:
- Compile a list of friends/family in advance who are willing to help. Assign one person to serve as coordinator of post-op visits/meals. Limit to no more than two visitors per day.
- Purchase/rent/borrow a comfortable recliner! Must have!
- Have extra pillows handy for when you can sleep in your bed again. This varies by patient but I was in my bed the second night after I got home. For some it’s weeks.
- If your primary caretaker works, have a back-up available, especially early on when it may be too painful to do simple tasks such as pulling a shirt over your head or opening a water bottle.
- Join Netflix or suggest to friends that they bring/send you their favorite DVDs. This is also a great time to catch up on or watch a TV series.
- Meditate Meditate Meditate.
- Get a massage or two in the week prior to surgery. This will help blood flow more freely and keep you relaxed.
- If possible, train on a pilates reformer for 1-3 months prior to surgery. I am almost convinced this is why I had minimal sternal pain post-op. A cheaper alternative would be floor pilates classes.
- Having books and magazines on hand is great but make sure they are light reads.
- Be prepared for disappointment and pleasant surprises. Some of the folks you think will be the biggest help will let you down and vice versa.
- Be prepared for frustration and aggravation—hospital bills, insurance issues (especially with heart defects), normal things you cannot do, cabin fever due to exhaustion and not being able to drive for 4-6 weeks. Cabin fever may be less of a factor if you live in a city or small town. I unfortunately did not.
- Keep a blog, Facebook and/or Twitter page. These are a great alternative to replying to phone calls/emails when you’re exhausted. Facebook/Twitter is great for mini status updates, and the blog for longer updates. I found my blog to be very therapeutic, too.
- Find a support network. I used the ACHA Discussion Forum religiously and even found a few new friends!
Do you have additional tips to add? Post them below. Thanks!
Heather Abbott brings her enthusiasm for helping find “lost” adult CHD patients and prior fundraising experience to the ACHA Board of Directors, where she is currently Treasurer. She is also the NYC area ACHA Local Leader. Heather received her Bachelor of Science and Master of Business Administration degrees from Cornell University.
2 comment(s) so far...
By M.K. on
6/21/2011 4:43 PM
Re: Open Heart Surgery Preparation Tips
Tet, July '77. Pulmonary replacement August '08.
- Don't waste time w/a second opinion. Minutes count. Trust me, I know - 10 mins or 2mm in my case.
- Take every short-term time estimate any medical professional gives you and double it; divide every long-term estimate by 1/3. Seriously. Medicine math is skewed.
- Avoid family squabbles - appoint one person to be in charge of your care. More specifically, not a parent.
- Enjoy every minute of every week of every month of recovery (8-10 weeks for me):
Sleep all day; Have a cat handy for staying up all night.
Keep the internet and a credit card handy. Lego.com = good therapy.
If it's your birthday, go out shopping, no matter how psychotic beta-blockers have made you. Don't be ashamed to scare people with your schizophrenic rants. Declarations of "Oh! I'm leaking again" help.
Avoid comedies. Laughing hurts like hell. Trust me, good sci-fi feels so much better. However, avoid Jacob's Ladder while on beta-blockers. There's a fine line between the movie and the meds. It will mess you up.
Read books you would never ever read - you probably won't remember them anyway. Or, finish Lord of the Rings.
Eat just about whatever you want. Go lite on the caffeine though.
Shave your own head and bathe irregularly.
Take walks in your hospital gown, with the back open. Show every kid your incision and make up a good story.
Stare out a window at your neighbors for as long as you can stay standing.
Start a scab collection. This is easy.
- Accept people's generosity, sympathy, pity, whatever. Looking pathetic helps. And that glazed-over beta-blocker stare will have them even more concerned.
- After recovery, expect people to ask you if you're back to work... for the next two years.
- For those of you who aren't spiritual gurus, at some point in the whole process, have a good cry. You will - and it's o.k. to - feel sorry for yourself. My position is, for a CHD patient, death is always just a heartbeat away.
By lorelei on
10/23/2012 11:37 AM
Re: Open Heart Surgery Preparation Tips
Great tips Heather.
Just to add to the list. Laugh as much as you can... pre and post surgery. Yes, it might hurt, but its a healing pain. :)