Posts Tagged ‘Lobby Day 2009’

Take your time and do it right

December 6, 2008

Starting next week, I won’t be posting new items every day. No, I am not going away – I’ve got a little case of “Blogger Burnout.” I try to generate good reading material for you every day, but it’s difficult to prepare quality material day after day. I will still post – often – but just not every 24 hours.

I still plan to liveblog from Lobby Day in Washington! My new phone works like a dream and I’m pretty sure I can post updates from it. It all depends finding an available Wi-Fi in the Capitol Complex, however!

A big THANK YOU to Heather for her guest appearance last week!

We have a new organization in our blogroll – Annabelle Baskets! Annabelle Baskets are “survival kits” given to little bitty Cardiac Kids after their heart surgery at the Medical University of South Carolina (MUSC) Hospital in Charleston, South Carolina. A noble cause – stop by and say hi! (or better yet, contribute a little!)

The blogroll has been rearranged… all of our links to CHD news, publications, and clinical trials are now grouped together under the heading “RESEARCH:” Take advangage of them! Dig in, find out the latest information, get involved in a clinical trial, and find out the latest from the National Heart, Lung and Blood Institute (NHLBI). Let’s figure out how to beat Congenital Heart Defects once and for all!

One day, there isn’t going to be a need for any CHD organization. I don’t know when that day is coming, but rest assured, it will get here. And on the day that my support group, the Adult Congenital Heart Association (ACHA) shuts the doors, I plan to be at our Home Office. This ol’ Funky Heart is going to make sure that the flag is folded properly one last time, and then shut off the lights. Afterwards, meet me at the nearest tavern.

We’ve won, and I’m buying!

Stand and be Counted

October 15, 2008

Well it is official – I am registered to participate in the Adult Congenital Heart Association’s (ACHA) Lobby Day 2009! During my first Lobby Day (2007), it was Just ACHA members (patients and health professionals) with assistance from the American College of Cardiology (ACC). The ACC sponsored the event and provided us guidance on how to approach a lobbying effort. The ACHA has no professional lobbyists; if we want something done, it’s up to us to do it!

There were 74 ACHA members from 19 states, and we were able to visit the offices of 83 of our legislators. The issue we pressed was the creation of a national registry of Adult Congenital Heart Defect (ACHD) patients. By gathering and studying information on adult survivors of CHD, better treatment options can be developed that will benefit everyone with a Heart Defect and allow all of us to live longer, healthier lives.

We won the battle, but lost the war. The Registry was inserted into the Federal Budget, but political moves delayed passing the budget until almost the last possible moment. When it was finally passed, the budget had been “stripped” – most of the extra spending (including ACHA’s request for the Registry) had been deleted.

That was two years ago – before ACHA helped create the National Congenital Heart Coalition. I don’t really know what to expect this time. Members from other groups in the Coalition will almost certainly join us, and I assume (and we all know what can happen when you assume things) that our focal point of our efforts will be passage of the Congenital Heart Futures Act. During our interview, ACHA President Amy Verstappen told me that the Act was still a work in progress. I have not seen a copy of the Act, and by the time it is ready to be submitted, that may not even be its title.

So what can you do? If you are an adult with a Congenital Heart Defect, join ACHA. Membership is free to patients and their families, and if possible prepare to join us in Washington. If you are a Heart Mom or Heart Dad, ask your local CHD support group if they are members of the National Congenital Heart Coalition and if they want their members to attend Lobby Day. If they say no, ask them why not? Ask your group leaders to get in touch with the ACHA main office (the phone number is on the website; go to the bottom of any page) and request information about joining the Coalition and attending Lobby Day 2009.

Appointment went well!

October 8, 2008

My appointment at Emory went well! I have been feeling good and am not aware of any problems (and that is a problem itself: a heart that is getting sicker won’t always make you feel bad. A cardiac chamber that is failing won’t cause you any pain, but it will enlarge and cause you to not function as well as you once did. The loss of function happens so slowly that it can easily be passed off as the normal effects of age, and there is no way to detect a changing heart chamber without an x-ray and/or and ECG.) but for some reason I was extremely nervous before my appointment today. We’re not talking just the normal doctor’s office anxiety, but really, really nervous. If someone had slammed a door, you probably would have had to peel me off the ceiling.

And even though I was so nervous, my blood pressure was great. 102/57, which is pretty astounding. For some reason, even with a Funky Heart and blood vessels that interconnect more than the Los Angeles Freeway, my BP has always been close to perfect.

After the BP and the PulseOx test, the nurse brought in the ECG machine and hooked me up. There have really come a long way — today it takes about 20 seconds to produce the ECG sheet; it actually takes longer to place all the sticky pads on the patient than it does to run the test! When I was an infant, you couldn’t even touch the patient or the test (printed on yards of cash register receipt paper) would be invalid. The patient couldn’t move, either, which meant screamin’ young’uns like myself were very difficult. The folks finally came up with a way to get me to hold still without touching me: they’d let me starve! Whenever it was ECG time, they’d put me on the table and hold my bottle right over my mouth. I’d start sucking, being perfectly still the entire time. (Hey, eating is hard work! You have to concentrate!)

I was also able to get my flu shot! I was sitting there waiting on the doctor – you know, those few minutes that they leave you alone after the nurse finishes her examination, but before the doctor gets to you – when the nurse comes in again and asks if I want the flu shot. That was on my list of questions to ask the doctor; I had seen an ad for a drugstore that was distributing the shot a few days before and meant to ask about it. The nurse said that they were recommending them, AND had a supply reserved for the Congenital patients, so I signed the formsĀ and got my shot!

Then my doc comes in and examines me. He always has permission to bring some of his students, so usually he enters the room with three or four young people in tow. Today is no different. I actually enjoy his teaching sessions; he switches back and forth between English and med-talk enough that I’m getting an education, too!

This has changed over the years, too. It used to be that a doctor would ask if he/she could bring a medical student into the room because “We don’t see very many cases like you.” Now he’s bringing in students because the students are choosing Adult Congenital Cardiology. And even if they don’t go that route, studying people like me will help that one day in the future when a sick kid comes into the Emergency Department and no one can make heads or tails of what’s going on. Hopefully that former student will be able to say “Wait a minute, I’ve seen something like this before…”

And although I was nervous – scared to death, actually – everything went great! I’m due back in 4 months. I will see my doctor at the Adult Congenital Heart Association’s (ACHA) Lobby Day 2009 in Washington, DC, and I hope to interview him for the Funky Heart blog. I’m sure that if I had asked today he would have sat down with me right then, but I hadn’t set anything up in advance. And to take up an extra 30 minutes of his time that I didn’t need would not be fair to his other patients, so I’ll do the interview another day.

Tonight’s musical selection is Tom Petty’s Won’t Back Down. I heard this when we stopped at a store on the way to Atlanta; I hadn’t heard it in a while and had almost forgotten how good a song it is. I hope you enjoy it too.