Here’s one of the reasons that there was not a post yesterday… I was busy participating in a “Blogger Interview”! The questions were presented by Strong One over at My Strong Medicine. His questions and my answers are posted below.
If you want to participate, it’s easy! Just follow five simple rules:
1. Leave me a comment saying, “Interview me.” Be certain that there is an e-mail address or website that I can use to contact you!
2. I will respond by e-mailing you 5 questions. I get to pick the questions.
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them 5 questions.
Strong One’s questions are in bold text.
1. Please tell me more about your blog.
Adventures of a Funky Heart! is written from my point of view as an adult living with a Congenital Heart Defect. I was born in 1966 with Tricuspid Atresia and I have had three heart operations in an attempt to relieve it. I started Funky Heart in July 2008, intending it to be a blog aimed primarily at other adult CHD survivors. That didn’t last very long – parents of children with a heart defect were commenting and sending e-mail, all saying “Thank you! We’ve never been told anything about raising a child with a heart defect!” How can you turn your back on people who are in the same situation that your parents were in? So Funky Heart has changed – it’s still an adult blog, but I include links to research, new drugs, and try to make it applicable to Heart Moms and Heart Dads as well as adult survivors.
2. How has your Congenital Heart Defect affected your life?
Everyone was called nicknames in grade school; it’s part of growing up. My special nickname was “Blue lips! Blue lips!” I’d run off and whine to the teacher, and of course, that just made things worse. So I learned how to laugh at my defect, and at myself. It’s difficult to make fun of someone when he is laughing right along with you! So I guess my sense of humor can be “blamed” on my defect.
The most difficult part of living with a heart defect is all the problems that are associated with it. I got into a coughing fit, leaned over, and threw up blood. That lead to my second heart operation. I was a junk food junkie until the day I developed Congestive Heart Failure and had to adapt to a low sodium diet. I remember thinking “Just hand me a pistol, because I’ll never be able to do this!”It’s been seven years since that happened, and I’m still going strong. There are monthly blood tests, medication changes, I had to stop taking one drug because it made my liver enzymes go crazy, and for a while I was on Amiodarone. It’s a good drug for suppressing arrhythmia, but it can quickly damage your lungs, your eyes, or your Thyroid.
One of the good things that has happened is that I have joined the Adult Congenital Heart Association (ACHA) and gotten very involved with their programs to support adult survivors of a Congenital Heart Defect. These are some of the most positive, supportive people I have ever met… you would think that there would be someone in the group who is pessimistic about their life; if there is, I have yet to meet them! I’ve made a lot of friends through the ACHA, and they are all survivors, just like me!
3. If you were not a survivor of an Adult Congenital Heart Defect, would you still blog? And what would it be about?
Probably not – Blogging had never crossed my mind because I didn’t feel that I had anything to say. I live in a very rural area, five miles outside of a town of 450 people. I love it because it’s so quiet, but if you ask me what’s going on, “A whole lot of nothing!” is usually the answer. For ten years I worked at a local agricultural museum; I enjoyed it but I don’t see much blog materiel in that!
4. How has your cyanosis affected you professionally and/or personally?
Cyanosis, for those who may not know, comes from the base word “Cyan” and means “blue.” When a person has low blood oxygen, they often appear to have a bluish tinge around their fingertips and lips. My oxygen saturation runs about 80% normally and drops when I do physical activity, so I can’t run or exercise as much as a heart healthy person. One of the best descriptions I’ve seen was written by another ACHA member in a letter sent to the Social Security Disability Policy Committee: “The best way to explain how it feels is to run around your house while holding your breath.”
I’ve already mentioned being called “blue lips” as a child. In high school my fellow students never understood why I got to sit out P.E. exercises when I felt like it. And being honest, I got lazy and sat out when I could have kept going. No excuse, I was young and stupid. Hopefully I’ve matured some since then.
I refuse to wear a blue shirt, since it brings out my cyanosis and makes me look ill. Red is my color, it makes me look healthy. When I worked at the museum, I always had some help whenever I needed it. Nothing was ever mentioned, I think the Executive Director read my application and quietly passed the word around. We featured meeting facilities, and had to change the layout at least once a week. I was the king of moving the round tables! Just tilt them up on their edge and get them moving, didn’t even have to fold the legs in.
5. What is your secret for being so positive and proactive about your condition?
It wasn’t that long ago that there were no congenital heart defect survivors – the first congenital operation took place in 1944. Someone born on that day is still ten months short of retirement! Until the early 1980′s Hypoplastic Left Heart Syndrome (HLHS) was an automatic death sentence, then the Norwood Procedure was developed, and the oldest HLHS survivors are just now becoming adults. Now there are new developments in stem cells, replacing heart valves without open heart surgery, and patching ASD’s through a catheter. And more is coming!
One day, there isn’t going to be a need for CHD support groups. On the day when my support group, the ACHA, closes its doors for the last time, I plan to be there. I learned how to properly fold a flag while working at the museum, and if we’re bringing it down for the last time, I’m going to make sure it’s done right!