Posts Tagged ‘Emory University Hospital’

Parading down Peachtree!

July 11, 2010

I’m heading back to Atlanta!

And no, this is not for my usual check-up – though I will have one of those in August. This time I’ll be heading down on Halloween Weekend for the American Heart Association’s annual Heart Walk! Emory University Hospital is putting a team together for the walk and my docs in the Adult Congenital Heart Defect Clinic are gathering a “Mini-Team” of their patients. So I was asked if I could attend and unless something comes up, I AM IN!

Good medical care by Adult Congenital Cardiologists is so very important to someone with a Congenital Heart Defect (CHD).” Regular” Adult Cardiologists can’t handle us: they are trained to take care of patients with clogged arteries, too much Cholesterol, or recovering from heart attacks. We need a Cardiologist who is trained to take care of an adult with a CHD, and Emory is one of the few places in the United States that offer this service.

So if you are an Adult CHDer in the Atlanta area (or about to become one!) register for the heart walk and join us at Turner Field on Saturday, October 30, at 8:00 AM!


February 24, 2010

It always seems to take longer to come back home than it does to go to Altanta. The situation was aggrivated by the weather today – cold and windy with rain (and a snowflake or two spotted while passing through Monroe, Georgia!)

My appointment went very well! My pump is pumping, my pacemaker is pacing, and all is right in my world. Once again, it looks like the best thing that could have happened to me was not getting the Fontan. Everything is funtioning quite well without it.

We’ll talk more later, right now I am road weary. So I’m calling it a night!

Road Warriors

February 22, 2010

NEWS: Zeb has to have surgery (the Ross Procedure) on Friday, February 26. His Mom, Rhonda, is a friend of mine and reader of the Funky Heart!, so I would appreciate it if my readers could help me keep an eye on Zeb!

I am packed for the trip to Atlanta – it can be a pain traveling to Atlanta for my Cardiology appointments, but it’s all a part of having an unusual Chronic Illness. You need expert medical care, and I feel that the team at Emory are some of the best.  As I’ve said before, the expert you need will not be found in a town of 5,000 people. These folks get to be experts by using their skills, and there just isn’t enough medical traffic in smaller cities. So you have to find a big hospital that sees lots of patients, and has a lot of experience to draw on. (There are exceptions to every rule, and two of the best known exceptions in Medicine are The Mayo Clinic in Rochester, Minnesota and Duke University Hospital in Durham, North Carolina.)

A recent study reports that there are only 72 Adult Congenital Heart Defect programs in the United States. So it looks like Heart Warriors will be Road Warriors for some time to come.

We do what we must do to defeat the evil that lives within us.

Just a little news!

January 26, 2009

Communicated with a Heart Mom on Twitter last night and today – she had mentioned that her son was due for a cardiology appointment today. Since I have Monitter (a program that allows you to monitor Twitter for certain words) I dropped her a note wishing her luck. Got back a tweet later that said he had a “stellar” appointment!

Kim (Owner of The CHD Blog) and I are both going to be at Lobby Day 2009, and we’re working out plans to cover the event. Nothing in concrete yet, but we have ideas. We’re open to your ideas, also, so please leave a comment if there is something you really want to know or see.

If you get your Funky Heart updates by e-mail, you will want to actually visit the site on February 10th. I’m not sure if you’ll get an email with one entry (the first one of the day) or a dozen short entries, so to make sure you don’t miss anything it might be best for you to visit the website.

Not only is Beja out of surgery, a jailbreak occurred! She’s back home from her surgery after being a patient at Emory!

Your nose over your toes!

January 23, 2009

Do you know how to stand up?

I’m serious. Tell me how you stand up from a sitting position.

I had to be taught how to  stand up from a chair after suffering a stroke. I don’t know it is was a TIA, a “real” stroke (thankfully a small one) or just stroke – like symptoms, but I had one.

I had developed Congestive Heart Failure (CHF) while on vacation and hospitalized after I returned home, then transferred to Emory University Hospital where my cardiologist worked. The people at the small community hospital where I had been hospitalized had mentioned that a pacemaker may be part of my treatment plan, but my defective heart is so unusual that I wanted my regular cardiologist to examine me before a final decision was made. He agreed, and in fact felt like things were to the point that a pacer was inevitable. So the pacemaker was installed and I was in the recovery room the next day.

“Do you want to get up?” the nurse asked. Might as well say yes, because you are going to get up… mobility helps the healing process. I still had wires and tubes attached to me, so with the help of two nurses I got up, managed to turn around, and sat in a chair next to my bed. The community TV was on The Montel Williams Show. So I blame Montel for what happened next.

I was sitting in my chair with my foot twisted under me at a sort of funny angle. It didn’t hurt but I did, so I saw no reason to rock the boat by trying to move it, and eventually my foot fell asleep.

A nurse walked by my bed, stopped, and said “Smile at me!” It isn’t that often that a young lady asks to be smiled at, so I did.

“You need to be back in bed,” she said, and before I knew it she flung me back into the bed, hit the call button, and asked for neurological assistance STAT. In moments there was a guy looking in my eyes with his penlight and I was on my way to the MRI scanner.

In an hour or less my right side had just… switched off, for lack of a better term. For three days I was in the ICU with no movement of feeling in the right side of my body. And then suddenly, it just switched itself back on.

But that doesn’t mean that I was able to hop out of bed and dance the Rumba. I had no control, and my body didn’t seem to want to do what I told it. I got enough Physical Therapy in Atlanta to be able to do basic things, and then continued the therapy locally after I was discharged.

But there is a proper way to stand up from a chair. You do it every day and never even think about it. I’m recovered so much that I don’t even really think about it anymore. Try it the next time you stand up, and see if you don’t follow these steps:

1) Slide to the edge of the chair.

2) Place your feet shoulder width apart.

3) Place your nose in a direct line over your toes.

4) Push upward, using your thigh muscles.

Now, do that 99 more times and then we’ll move on to something else!

Physical Therapy hurts! You’re moving muscles that don’t want to move or haven’t been moved in a while, and they are complainin’! When you finish, you’re not sure if you’ve been to a rehab session or if you’re a hockey player who keeps getting slammed into the glass. But some pain now for a larger payoff later… today, you wouldn’t even know I had a stroke unless I told you. So if you know a Physical Therapist, shake his hand or give her a hug. Your patients don’t like to see you walk in the door, but we are so glad you did!

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 forms 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.

News and Notes

September 13, 2008

A very short post tonight, as I’m pretty busy, but I did find several articles that you will find interesting: There’s yet another report showing that Adult Stem Cells taken from heart muscle can regenerate damaged hearts. But this time the news is even better: Doctors have found a way to boost their effectiveness.

A member of the Adult Congenital Heart Association is once again in the news, as Jim Langill took on the Boston Heart Walk today (September 13, 2008). I hope it went well, Jim!

Has your doctor ever described you as a “difficult patient”? That’s a good thing!

And finally, things are really happening down at Emory University Hopsital, where I go for Adult Congenital Heart Defect care.  Emory is one of only ten hospitals nationwide that is testing a new procedure to insert heart valves without cutting the chest open!