ACHA & EACH

About two years ago I decided to participate in Atlanta's annual Heart Walk which took place in Centennial Park. I don't know why this heart walk doesn't occur at the same time as the National Heart Walk but I have a feeling it has to do with the weather (breathing becomes quite the task when it's hot and humid). The event is pretty big consider all the range of  interest groups (insurance companies, hospitals, etc.) that participate in it along with the large number of patients that suffer from a wide range of heart ailments, their families and friends. One of these interest groups is EACH (Emory Adult Congenital Heart Center) the only adult congenital heart disease (ACHD) program in the state of the Georgia and it is the group I had joined to participate in the walk with.

Before the walk started, a young lady approached our table and asked what EACH was and what it did. After she received the information from one of the specialized nurses the young lady said: "I have a congenital heart disease and I did not know that these type of groups existed". My first thought was "Thank God she founds us" because I too had been in her shoes and I remember the amount of relief I felt when I discovered that there were organizations that focus specifically on the disease one has.

Now, I did not know about these groups and organizations until I was in my early forties so I'm hoping that the following information will help individuals with Adult CHD get answers to the endless questions sooner.

• ACHA (Adult Congenital Heart Disorder) is a national non-profit organization that seeks to extend the quality of life and lives of patients with congenital heart defects. There is no cure for CHD but much can be done to make the life of the individuals with CHD a better and productive one. http://www.achaheart.org/

• EACH (Emory Adult Congenital Heart Center) - I live in Atlanta and am fortunate to have a group that specializes in Adult CHD nearby. If you are not near a congenital heart center, ACHA has great Directory that lists all the centers in the USA - You can get it from their website for a price (cheaper if you're a member). They also have an electronic (PDF) version for free.  http://www.emoryhealthcare.org/congenital-heart/

• INTERNATIONAL SOCIETY FOR ADULTS WITH CONGENITAL HEART DISEASE (ISACHID) - I lived in Guatemala for over 30 years and would have loved to have known about the existence of this organization. http://isachd.org/

Getting Started

Ok...this is my second attempt to write a blog. Please forgive me if I get overly excited with this activity and then suddenly drop from the face of the blogosphere. Having Congenital Heart Disease plus PHA (Pulmonary Hypertension) has always motivated me to try to do many things possible because as the New York Lotto slogan says "Hey, you never know" and in my situation I really don't know what the next hour or day will bring so I want to try everything. Having said this I have had a pretty normal life and thankfully been able to do so many things that even healthy people have not been able to do.

Things are slowing down for me, so I want to see if I can stick to writing this Blog thingy in hopes that I can provide some helpful and usual information to those that suffer the same ailments that I've suffered since I was born. I'm going to try to write a bit here and there about my experience with CHD (Congenital Heart Disease) in hopes that others who are going through some of the things that I'm going through (especially now) will provide some comfort in knowing that they are not alone. Yes, this illness sucks. Yes it limits a lot of what I can do. But I also think I've had some amazing experiences and I have met some wonderful people that otherwise would have never met.

So I try to make the best of it. I do what I can and agree with myself that it's OK to have limitations; it's OK to not have to prove to everybody that one is normal (one of my constant struggles), it's OK to let go. I've been, however, practicing this mentality only in the last 10 years and I must admit that therapy helped me reach this mindset.

I'm going to be writing about what it has been like to live with CHD and what it's like now. I decided to do this now, at 55 because my health is deteriorating and before I'm more limited as to what I can do. I also want to share what it was like going through the system in order to get disability in Georgia, one of the toughest states to get disability in. I worked all my life until one day I finally decided to take care of myself and come to terms that I no longer had the energy to do a lot of things I used to do. This decision came a few years ago after I was diagnosed with PHA adding another hick-up to my lifestyle. Although I got SSDI ipso facto, there were many things about my specific condition that made it possible for me be approved for SSDI so quickly.

Well, I'm exhausted, so I'm going to take a break. My intention is to add thoughts, information, snippets of everyday life for all to read. So until the next post....ta ta.