Archive for the ‘MUSC’ Category

Miracles

September 27, 2010

If only you believe in miracles, baby (like I do)
We’d get by

Miracles, Jefferson Starship (1975)

I was concerned about traffic (traffic in downtown Charleston,¬† South Carolina can be a nightmare; almost every street is One Way) so I intentionally planned to arrive at the Palmetto Hearts Pediatric Cardiology Reunion early. A little too early, as I was the first CHDer on the scene… oops! But the wait wasn’t long, and before I knew it the entire museum was full of Cardiac Kids and Heart Parents. The oldest CHDer I met was a 16-year-old with HLHS (I never got your Facebook Friend request, Johnathan! Try it again, please!) but most of them were under 10 years old.

When you are that young, your heart is roughly the size of your fist. Imagine operating on an organ no bigger than an infant’s fist, cutting it open to find and repair a hole that isn’t supposed to be there. Imagine finding two blood vessels that are measured in millimeters – these blood vessels are connected to the tiny heart but they are in the wrong place, and it is your job to cut them, switch them, and sew them into the tiny hole where the other vessel was.

Imagine looking into the chest of an infant with part of his heart missing. It’s supposed to be the size of a walnut, but part of it is missing, so there isn’t even that much. As my grandma used to say, “There’s not enough space in there to change your mind.” No, there isn’t enough space to change your mind – but there is plenty of room to screw up, to shatter an already broken heart, to ruin a life and a family forever.

I didn’t talk to many of the children – If you were a child, which would you rather do: talk to the adult you don’t know or play with all the cool stuff in a Children’s Museum – but I did talk to a lot of their parents. I heard tales of living in the waiting room.

Staying by the bedside.

Waiting for a miracle.

That’s what I saw at the Pediatric Cardiology Reunion I attended Saturday night… miracles. A lot of them. Walking, talking, miracles.

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What you need in a hospital

September 16, 2010

In an earlier post I discussed what we need in a Congenital Heart Surgeon. Reader Heather let the cat out of the bag by mentioning that wasn’t all you needed… you need a good hospital, too.

How true, how true. As I have said many times before, the doctor you need does not practice in a town of 5,000 people. There aren’t enough patients in the community to allow him or her to sharpen their skills. Skill partially depends on volume – you do something often, you do it right, and you evaluate your results (and you keep evaluating them, constantly). That’s the only way to improve. You learn from someone who is experienced, then you do it yourself, knowing that anything less than 100% is unacceptable. As you gain skill, you learn how to do it better and faster.

That same fact applies to the hospital. You can have the best surgeon that ever put on a mask; but if the hospital you are in has very little experience with caring for post surgical patients, there could be problems. That applies to the type of surgery you are having, not to all surgeries. Caring for someone who just had heart bypass surgery and someone who just had congenital heart surgery is a lot different. Studies prove that the more experience a facility has, the better the outcome.

I love my community hospital. We have about 150 beds and I’m on a first name basis with a lot of the people there. I know the doctors and the nurses not only from the hospital, but I see them in the community. I saw one of my favorite nurses in the grocery store just last week. But that doesn’t mean I’m going to let them do heart surgery on me – they don’t have the skills. They are well-meaning people and I am sure they would do their best, but if I had surgery there, I’d probably come home in a box. We can’t have that, I’m claustrophobic!

A few months ago there was a plan being considered by England’s National Health Service to consolidate the number of Pediatric Heart Hospitals. A good number of people were understandably upset but the reasoning is logical: some of the units performed a relatively small number of surgeries. Consolidating the number of centers may make it inconvenient for some, but it will make the overall results better.

For us here in the States, that probably means a trip to a large city hospital. There are exceptions – Durham, North Carolina¬† (the home of Duke University Hospitals) is fairly small and Rochester, Minnesota (Home of the Mayo Clinic) is also a small city. But in most cases, we’re heading to The Big City – New York, Los Angeles, Nashville, Boston, Birmingham, Kansas City, Denver, Atlanta. These are only some of the destinations whenever the Heart Warriors I know head to the doctor. “Medical Tourism” is all the rage right now, but to us its old news. The average Heart Warrior is also a Road Warrior; we’ll go to where the best hospitals and doctors are.

And in the words of that great philosopher, Bruce Hornsby – That’s just the way it is.

Pediatric Cardiology Reunion

September 10, 2010

Palmetto Hearts, the South Carolina based Congenital Heart Defect (CHD) support group, will be holding their Pediatric Cardiology Reunion September 25, 2010. This event will be held at The Children’s Museum of the Lowcountry in Charleston, SC, and I will be attending!

This is not a CHD Conference, but rather a party/get together of Cardiac Kids who had their Congenital Heart Surgery at the Medical University of South Carolina (MUSC). Even though MUSC is based in Charleston, it is the only Congenital Heart Surgery center in the state. So Palmetto Hearts has members from across South Carolina. I’m not planning a presentation and there won’t be any informational sessions, so I’m not planning to live blog. This is just a group of friends with common experiences getting together.

I’m an MUSC “Alumni” too – after Dr. Richard Rowe left Johns Hopkins Hospital, we decided to find a Pediatric Cardiologist closer to home. But I was seen at MUSC in the early 1970’s, long before these Cardiac Kids (and perhaps their parents) were born! I’m a walking, talking history book… when I was young, the different hospital departments didn’t work together as well as they do now. Often the right hand didn’t know what the left hand was doing. But that was OK, because the left hand didn’t seem to know that there was a right hand!

Life as a CHDer back then really was an adventure!

This place is a zoo!

August 22, 2010

Yes it is! It was designed to be!

I was recently invited to be a part of a Congenital Heart Defect (CHD) Conference scheduled to be held at Riverbanks Zoo in Columbia, South Carolina! I haven’t said anything yet because it is still in the planning stages, but they have the date set: February 26, 2011!

I accepted – the zoo is only about 70 miles from my home. So no flights, and no Baggage Claim! I’m planning to stay away from any Baggage Claim area for a little while!

This will be fun, since I haven’t been to the Zoo in quite a while. Since I was there last (escorting a church youth group in the mid 1990’s) they have added a Botanical Garden and changed a lot of the exhibits. I do hate to see that the polar bears are gone. When I was in grade school we’d take a field trip to the zoo at least once a year, and the Polar Bear exhibit featured a large pool. I’m sure the bears appreciated it, since they are a little overdressed for South Carolina. They also had an underground cavern where you could watch the Polar Bears swim around through a huge plate-glass window in the side of the pool. The cavern always seemed to be closed; they had problems with the window leaking. But I looked at a map of the Zoo and the Polar Bears have been replaced by Grizzlies. I hope they have a pool and a window, for old times sake.

I took my oldest niece to the zoo when she was young, and like a good uncle I tried to convince her that I always thought my brother (her dad) was born in the Monkey exhibit. For some reason she didn’t believe me! Just to make sure, we studied the Monkeys for quite a while but didn’t see him. She said he was at work, but I think he was hiding in the shadows.

Being serious again, the Zoo will be fun, and I’ll get to hang out with a bunch of Cardiac Kids and their parents. We’ll have a blast together…. and if you are visiting Riverbanks Zoo that day, you’ll probably never know any of us are sick kids. We’ll look like a big group just out having fun, just like so many other groups that visit the Zoo. In most cases, a CHD is an invisible disability. You can’t tell we’re sick, and for the most part we adapt well. CHDers learn at an early age that we have to do things a little differently, take it just a step slower, and pace ourselves. We don’t want to be different, but as my father says, “You play the hand you were dealt.” This is the way it is, and we deal with it.

The conference is going to be sponsored by Palmetto Hearts, and you’ll see more details as they become available. If you are a heart family in South Carolina, plan to attend!

Look! Up in the Sky!

April 12, 2010

Remember Zeb? He had Heart Surgery on March 2, 2010.

I am happy to report that after a short break, Superman is back on the job!

Super Zeb!

Click above to see a better photo of the Man of Steel!

GO TIGERS!

November 2, 2009

Boy, I bet some of my close friends just fell out of their chairs. Clemson University (Home of the Tigers) are the arch-rivals of the team I support, the University of South Carolina. But it is only fair to give credit where credit is due: Clemson is going to be the home of a new research facility that will develop a center for Tissue Regeneration. Researchers from the University of South Carolina and the Medical University of South Carolina (MUSC) will collaborate. The University has also landed a grant to study reconstructive breast surgery Рusing artificial tissue that is resistant to cancer!  Hopefully when that breast cancer raises its head for the second time, this new tissue will slap it right down!

Clemson’s Department of Bioengineering began in 1963 and has provided the building blocks for engineered knees, hips, tissue, and hearts. From what I understand (and I do not understand this science very well at all!) they take small samples of real tissue and grow it in a controlled environment. They can use artificial tissue as a “framework” to make it grow into a certain shape and/or enhance the growth rate in some fashion.

Perhaps the day will come when our weak hearts will contain a patch of bioengineered tissue that would make it strong again. And if that were my heart, I wouldn’t mind one bit if that patch had a little Tiger Paw logo on it somewhere!