Posts Tagged ‘doctors’

A new Christmas carol!

September 7, 2010

“On the seventh day of September, various doctors gave to me….”

One Prothrombin Time test;

A magnesium level request;

Could you check your BMP…..

After your Physical Therapy,

Your Orthopedic doctor should be seen;

And before you’re through get this year’s Flu Vaccine!

Six different items scheduled on four different days… Posting might be a little slow this week!

On today’s agenda: Vision 2020

April 23, 2010

I hold in my hands the future of Adult Congenital Cardiology: the Adult Congenital Heart Association’s (ACHA) Vision 2020 Phase 1 Report. The long-term goal of Vision 2020 is to make Adult Congenital Cardiology an established, recognized field that will deliver quality care to adults with Congenital Heart Defects throughout the United States.

Begun as an initiative of the ACHA in December of 2008, the goal of Vision 2020 is to ensure that every Congenital Heart Defect (CHD) Survivor be able to receive life long Adult Congenital Cardiac care after they turn eighteen. This care will be 1) High Quality; 2) Age Appropriate; 3) Research Based; 4) Coordinated and Integrated; and 5) Available in all regions of the country.

Although over one million adults in the United States live with a Congenital Heart Defect, it is estimated that 50% to 90% of them are not receiving regular care by an Adult Congenital Cardiologist. To reduce this number, four working groups have been created:

1) Program Accreditation - dedicated to creating policies and procedures that will create a legitimate credentialing systems for Adult Congenital Heart Defect (ACHD) programs.

2) Regional Care – will focus on determining the total number of Congenital Cardiology assets in a region of the country and determine the best way to transition a patient living in that region from Pediatric care to Adult care.

3) Workforce – tasked with determining and creating the educational and experience criteria needed to be certified to provide Adult Congenital care.

4) Business Model – most, if not all, Adult Congenital Heart Defect Programs will be part of a larger institution or hospital. The Business Model Working Group will help determine the best ways the ACHD program can contribute top the overall financial health of the larger institution.

It is an ambitious document, and the obvious question is – will it work? In its original form, almost certainly not. No plan is perfect from the outset, it will almost certainly be rewritten as time passes and new challenges emerge. Reality  2020 may very well be much different than what the Vision 2020 plan envisions.

But the number of adults with a CHD grows about 5% per year. There is already Adult Congenital Cardiology training going on, but almost all of it is informal. The doctors who have served us over the years are guiding younger Cardiologists who have shown an interest in Adult Congenital Cardiology. So with the patient population growing and informal training already taking place, it is only a matter of time before a medical school begins to offer specialized courses. And when you have formal medical training, you’ll soon have a specialty. And then you’ll need someone to decide what exactly makes a doctor a specialist; and how many specialists and what kind of services need to be offered to be accredited.

And in the long run, this isn’t really for adults. The story is told of the Country Music Superstar who was approached by a songwriter with a nifty little Christmas tune. At first he turned it down flat, but then his wife said “Have a heart, this song won’t make much money but just do it for the children.” So he called the songwriter back and made the recording. The singer was Gene Autry, and the song was Rudolph the Red Nosed Reindeer.

This isn’t for us -  it’s for the future generations. At Lobby Day 2010 yesterday, one of our older members (early 60′s) told a twenty-something year old CHDer “Remember what you have seen here today. One day, it will all be up to you.”

Maybe it IS too much…?

June 30, 2009

Dr. Wes (God love ‘em, he writes some great stuff; I’m glad I found his blog!) takes a look at all the paperwork and electrons generated by his colleagues and himself and wonders if maybe it IS too much. Perhaps the fresh paperwork is just paperwork showing that the original paperwork was properly noted.

Just one big electronic Circle of Paper.

Hearts on the Night Shift

June 21, 2009

We’ve got to answer the call again, my friends. I was just informed that Shelby is scheduled for surgery Monday morning, a planned Glenn Shunt. Trouble is an associated Ventricular Septal Defect (VSD) is VERY large and could cause some serious problems. So if any of the Funky Heart readers are minding the store at this time of night, go to Shelby’s web page and let her parents know that you are holding them close. They will appriciate it!

Cyst la vie! (That’s life!)

December 10, 2008

Yes, the misspelling is intentional – read this post to learn why!

There are THREE new Cardiac Kids in the blogroll -LukeNathan and Casey! I’ve also put a link to my interview of Adult Congenital Heart Association (ACHA) President Amy Verstappen in the blogroll – I posted it on October 1st, so it has been off the front page for quite a while now. But it is the most popular post I’ve ever written by far, and probably the most important – for both Heart Warriors (Adults with CHD) and Cardiac Kids. It seems someone clicks on it every single day, so I’ve linked it to the front page to make it easy to find. Also, be sure to check out the blogroll links marked RESEARCH for the latest in CHD news and clinical trials!

It was a Sunday morning. I had been in the hospital almost all summer with Endocarditis, which is not a fun way to spend the summer! Nobody knew then – and we still don’t know – how I got Endocarditis. One of the most common ways for a heart patient to get it is through dental work without taking the prescribed antibiotics, but that didn’t apply to me since I hadn’t had any dental work done recently. No matter how I got it, the cure was six weeks of IV drip antibiotics. *sigh* So there I was, in the hospital with a needle in my arm, for SIX WEEKS.

Thankfully, I was stupid. I had no idea that Endocarditis can do strange, unusual, and occasionally fatal things to your body! If the Endocardits attacks and damages one of your heart valves (one of their favorite places to lurk) you could need surgery to get it replaced. It can – I learned later, thankfully – kill you. And a certain percentage of patients may develop a cyst in their brain.

Guess who got the cyst.

The treatment for that is surgical removal of the cyst, followed by six more weeks of IV antibiotics. I was not pleased at all, but what choice did I have? The brain operation was “simple” as far as brain operations go. Usually you hear of people having brain surgery being kept awake, but that wasn’t so in my case. They just knocked me out, took out the cyst, and sewed me up. The surgeon started at 3 PM and was home for dinner.

Six weeks does not fly by while you are in a hospital, that’s for sure. But I was out, back home, my hair was growing back, and all was well in the world. It was a Sunday morning and I had just stepped out of the shower, and was leaning against my dresser as I put on my underwear.

And I woke up in an ambulance?

The doctors determined that I had a seizure – brought on by the removal of that cyst. It’s a possible side effect; the scar tissue in my brain basically causes me to “turn off” at times. I don’t show the symptoms of a typical Grand Mal seizure, I usually just pass out. The doctors set me up with a prescription of Dialantin to control the seizures.

Dilantin requires you to take a pretty sizable “loading dose” to get things started, and after that, the doctors have to fine tune it to your system. You obviously need enough to help you, but not so much that the side effects start kicking in. They warn you to stay alert, this could happen again.

It did. I happened to be squatting down looking into an open storm drain at the time… and instead of falling forward (which the laws of physics and gravity should have caused) I fell backwards. I like to think my Guardian Angel gave me a little shove!

But ever since I got my Dilantin regulated, I haven’t had a seizure… it’s been 10 years plus! In fact, a Neurologist said that if I wanted to, I could quit taking the Dilantin and “see what happened.” Ummm… no, thanks. I’m not big on taking medication unless I have to, but I’ve seem what might happen. So I’ll stick with my Dilantin.

Tell you what, doc: You pass out and ricochet off a dresser and a chair as you fall, and get back to me on that idea!

“Like sands through the hourglass…

December 4, 2008

… so are the days of our lives.”

Ever notice that the sand in the hourglass on the daytime show Days of our Lives never runs out? It just keeps going forever and ever and ever…

To bad it has nothing to do with reality. There was a very alarming report in the Boston Globe that states the bad economy could drain Medicare part A pretty quick. When that money runs out… it’s gonna get nasty. Doctors are already upset; the government is running them out of business. Some doctors are doing their own laundry to save money and others can’t afford to replenish their drug supplies. It’s getting scary out there, folks.

If I were a doctor I’d probably be looking for something else to do. Some of them are, and others are changing their mind about going into medicine in the first place. The Association of American Medical Colleges (AAMC) recently did a study that showed the numbers are dropping as the demand is rising. Massachusetts is already getting slammed. The Canadian system isn’t the answer, either. USA Medicine is ahead in technology, but the men and women of the Maple Leaf have better office systems. An alliance is looking pretty good right about now.

Dr. Wes bemoans the fact that healthcare costs are climbing more than inflation. Health Insurers are willing to forget about pre-existing conditions (Yay!) and insure everyone if the Government does certain things. (Now wait a minute… where’s the money coming from?) And whatever happened to all that savings that was supposed to occur if we switched to generic drugs?

We need to close the bar and then check ourselves into rehab.

What’d I Miss?!?!

October 11, 2008

This is a pleasant surprise!

Usually weekends are pretty quiet on the Funky Heart blog. Hits tend to be down; I figure all of you are  enjoying the weekend, just like I am doing. But today was one of the higher visitor days of the week. Is the weather keeping everyone in today?

Occasionally CHD patients get asked if they are angry or upset because they have missed out on some of the things that normal people get to do.  If you’re feeling a little sarcastic, throw the question right back at them by asking exactly what makes a person “normal”? You can make a good argument that George Washington, Wyatt Earp, or Jim Lovell never led a normal life!

But am I angry or upset that I never got to do things that the other kids did? No way! Yes, you are correct, I never played high school football. Never came to bat with two out and the game on the line. (Actually, I did play softball in a church league while in high school! I never struck out, but my batting average was terrible. I always seemed to hit the ball right at someone!)  Nope, never got to do any of that fun stuff.

But… I’ve been to some of the best hospitals in the world. I’ve been treated by some really good doctors and some of the kindest nurses around. A few of them aren’t just my doctor/nurse, they’re actually my friends!

I’ve met the fantastic people who make up the Adult Congenital Heart Association (ACHA)… there isn’t a wet blanket in the group! If you’re having a hard time or your heart has you feeling “whupped” (that’s a Southern word, it means “tired and depressed”) they’ll buck you up. Ive been to Washington DC with the ACHA to pound on my legislator’s desk, and was thrilled to be asked to speak to them – and our doctors! – at the last ACHA Convention. And when I was asked to speak for them at the Social Security meeting in Baltimore a few weeks ago, I felt so honored.

So add it up. Take out the things I never got to do because I have a heart defect, but remember to add in the things that have happened because I did have one. No, I never did any of that “normal” stuff… but I’ve done other things!


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