Posts Tagged ‘Travel’

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.

“Houston, we have a problem!”

June 20, 2010

We’ve run into a little problem with the Hearts Re-United event (.pdf file) in Houston. Not really a problem, but rather an inconvenience.

The meetings are not being held at the host hotel, but at two separate venues. No problem there. But one venue does not have Wi-Fi. The other one does, but it is a private system for employees only. So live blogging the event may not be possible.

I do enjoy reporting the event as it happens (and readers seem to enjoy following along) but if that is not possible, I’ll switch to Plan B. Plan B is simple – a pencil and notebook (the paper kind). I’ll take good notes and write a blog post later. A lot of information is discussed at these Congenital Heart Defect (CHD) Conferences and hopefully some of it will be useful to you.

My presentation takes place on Saturday July 24, followed by a question and answer session with adult survivors. I’ll post a copy of my presentation online after I give it.

Houston in July could be just a bit warm (YA THINK?) and I am glad to say that I have a new hat! My old hat is still in Durham, North Carolina, as far as I know. I packed my suitcase after the Saving Little Hearts/Mended Little Hearts CHD Symposium last year and completely forgot about my hat as I checked out… total bummer! It probably went to the hotel Lost and Found, but hopefully by now someone has given it a good home.

I am looking forward to the trip and to meeting a new group of Cardiac Kids and their parents! Will I meet you there?

Heading to Houston!

May 27, 2010

Get Heart Force One ready to fly, the Funky Heart is heading to Houston, Texas to participate in Hearts Re-United 2010, sponsored by Hypoplastic Right Hearts!

A medical conference and family vacation for families coping with Hypoplastic Right Heart Syndrome, Hearts Re-United 2010 will be held July 23 and 24, 2010. Attendees will be housed at the Hyatt Regency Houston. Medical Presentations will be featured Friday and Saturday mornings with group activities during the evening, including the option to attend a Houston Astros baseball game!

Also, I will be making a Presentation Saturday morning and will also be part of an Adult Survivors Panel later that day. As always I plan to live blog the event, so you can “look over my shoulder” as the day goes along. The hotel has Wi-Fi, but the medical meetings are being held in other locations that might not have internet access. As always, if there is no internet available I will take notes and post that night.

I enjoy meeting other members of the CHD family, and I think they enjoy meeting me. When people (especially young parents) learn that I am 43  and doing well, they seem to be reassured that their child can make it; he or she does have a good chance to grow up and have a wonderful life. And get this – I am a little bit shy when I first meet you, but I warm up pretty quick! And when I start talking about beating CHDs, you almost have to put tape over my mouth to get me to be quiet!

So I think it’s going to be a lot of fun in Texas, meeting Heart Moms and Heart Dads and hanging out with the Cardiac Kids. I’ll post regularly, as always, but why don’t you make plans to join us? They say that Texas is a friendly place, I’m sure they’ll be happy to set a place at the table for you!

See you there!

At Your Service

May 14, 2010

I’ve been writing Adventures of a Funky Heart! since July of 2008, and during that time I have had the honor of meeting numerous Cardiac Kids, Heart Warriors and Congenital Heart Defect (CHD) Families.

It has been my honor to share some of their stories with you. Hopefully I’ve been able to show you that you are not fighting your heart defect by yourself. No matter how good or poor your heart health may be or how dark the day looks, someone is in (or has been in) the same situation.  Draw strength from that knowledge; when I was growing up we hardly knew there were other people just like us out there. And without a convenient communications system like the Internet to bring us all together we all thought we were the only ones with this  problem.

And that makes beating your CHD so much harder.You need to know there are others out there going through the same thing that you are. And if you are a young parent, meeting an adult with a similar problem as your child’s may be just the boost you need to keep going.

If your CHD Support/Advocacy group is planning a weekend event – a symposium, a conference, an extended meeting – please keep me in mind. If your group wishes, I will be happy to come and speak at your event at no cost to the organizing group.

I have my laptop computer with me when I travel, and if there is an internet connection available I will “liveblog” the event, reporting on the speakers and their presentations. This will introduce your group to a worldwide audience. (If there is no internet connection I will take notes and report on the meeting that night.)

All I ask that you check the schedule first. I’m not wealthy, so I can’t afford to travel every weekend. My health is good and I am always looking forward to the next adventure, but sometimes the budget says “No!”

Also, remember that I am not a doctor and that I speak from my own experience. What works for me may not work for you, and I can’t (and won’t) diagnose you or give you medical advice.

If you wish to contact me – for a speaking engagement or just to drop me an email –  you can find my address in the About the Author link.

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.

Travelin’ Heart!

September 17, 2009

Living with a heart defect is a 24 hour, 7 day a week job. You don’t get a vacation… even when you are on vacation.

My parents used to take a week’s vacation every summer when I was growing up. They (later we, but at first I was too young to worry about such things) were pretty conscientious about at least knowing where the nearest hospital was, just in case. No one expected anything to happen while on vacation – if someone wasn’t feeling well, we wouldn’t go – but it was good to know about the local medical options, especially for me.

Our favorite vacation spot was a bit worrisome: Judging by what we could observe, the hospital was exceedingly average. Injuries or illnesses you might have in a vacation spot they could handle, since they saw them every day. But they didn’t have a great Cardiac program. If something had happened, that local hospital probably could have stabilized me, but we’d be going somewhere else for major care. Even today when I travel I keep in mind where I would go if a problem developed: Heading to Atlanta to see the Braves play? No brainer, I’m heading to Emory University Hospital; that’s where I go for Congenital Cardiac Care anyway. Flying to Washington, DC for an ACHA Lobby Day? Children’s National  Medical Center is the best option. A couple of Children’s National  Cardiologists are ACHA members and would probably be around!

A recent article in USA Today highlights the fact that hospitals located near popular travel destinations aren’t always that good. Back when we were vacationing every summer, we pretty much had to check out hospitals the old fashioned way: word of mouth from our doctors and asking the locals. The local residents are great sources of information: You want a great place to eat that isn’t overrun by the tourist crowd, ask someone who lives in the area. They can also tell you a lot about the local medical scene – but take everything with a grain of salt. Ask someone about a local hospital’s heart unit, they’ll probably assume you want information about how they handle a heart attack. Good to know, but not what I need.

It’s easier with the Internet. If you need specilized care (like an adult Congenital Cardioligst) the Adult Congenital Heart Association (ACHA) has a directory of Adult Congenital Heart programs. Paper copies are available and there is also an online database of programs. The US Department of Health and Human Services department has a webpage dedicated to comparing hospitals. The Association of Health Care Journalists also has a page dedicated to tracking hospital quality organized by state. It’s just another thing to add to your list of Stuff to Do before you travel: stop the mail, ask a neighbor to keep an eye on the house, and check out the hospitals close to your destination.

I’ll be seeing you

May 26, 2009

Written at 10:02 AM:

I don’t like to say goodbye.

I usually don’t, especially to my friends who also have heart defects. Things can happen suddenly, and it is possible that my “goodbye” could be a permanent thing. Since starting Adventures of a Funky Heart! I’ve come to realize just how close most of us have come to shuffling off this mortal coil. And at times the danger is still there, lurking.

I wear my heart on my sleeve; I’m sitting in a shuttle bus heading towards the Denver airport trying not to crack up in front of my fellow passengers. It’s difficult, because when I think of some of the things my friends have overcome, I want to scream THAT’S JUST NOT FAIR! No one, friend or foe, should have to endure the things we put up with. If you are a regular reader of this blog you know of the various procedures and surgeries I have had. Some of them hurt. But nothing hurts like the pain of seeing your healthy friends do things and knowing that you have to say “I can’t.” That, in a nutshell, is the reason I came – to get rid of those two words.

But as I leave, I’m taking a camera full of photographs and wonderful memories. I saw my friend Heather Magee; she flew in for the event and seems to be doing well. A friend who is 60+ years old and had her first operation in the late 1940’s. She went in for a procedure just two years ago, came through with flying colors and said it was “just a tune up.” She walked the entire Bolder Boulder course! A doctor who has fought both his heart defect and cancer, and won. A young lady with Hypoplastic Left Heart Syndrome (HLHS) who is in her early 20’s. And my “boss”, the organizer of the ACHA Bolder Boulder team. I can’t – and I won’t – forget these people.

I do not like to say goodbye, but I must leave Boulder and these wonderful friends. I’m a long way from home; and it is always possible that my travels may never bring me back here. But I’m taking your spirit, your never give up attitude, and your friendship home with me.You have my friendship in return.

And I’ll see each of you somewhere down the road, hopefully soon.

News of the Day

March 5, 2009

Blog Carnival: The Blog Carnival is on! If you wish to participate, please write a post on the subject “The gifts and challenges of a Congenital Heart Defect.” Post it on your blog and send me a link at ! The final day for submissions is March 21, 2009.

There is positive movement on the Congenital Heart Futures Act! As you may remember, members of the Adult Congenital Heart Association (ACHA) and other CHD groups lobbied Congress for sponsors for the Act, and we may have some positive movement on the issue! However… I gave my word that I wouldn’t write anything until it was official, so I can’t tell you yet. But I will as soon as I can!

Light the fires and kick the tires! The Funky Heart is traveling again! The trip is still in the future (and in the planning stages) so right now I’ll just give you little hints: Horace Greeley told me what to do, and I’ll be in John’s old stomping grounds. If I get to see some baseball, perhaps I’ll get lucky and see some good pitching. I’d love to see a pitcher get ten strikeouts! Any guesses? (Some of you know, so your guess doesn’t count!)

Former First Lady Barbara Bush had Aortic Valve Replacement surgery today and at last report is doing well. President Bush (#41) had some snappy comments at the press conference today but nearly broke down when talking about the surgical team. Like him or loathe him, it’s easy to see that President Bush loves his First Lady.

Robin Williams will also need to have his Aortic Valve replaced. Best of luck to ya, Robin. May you bounce back quickly and make us all laugh again very soon!

We’ve talked before about USB- based Electronic Health Records (EHR), but it looks like they may be out the window. Some medical facilities have even blocked their computers’ USB ports, in an effort to prevent forgetful staff from accidentally plugging one into the system. Running around the hospital sticking little plastic plugs into every USB port you can find… I wonder if that pays well? *sigh* I’m so used to carrying my USB that I feel naked without it, but it looks like it is back to the drawing board.

Medical Tourism

September 18, 2008

You might have heard of Medical Tourism by now. I don’t know who coined the phrase, but basically it refers to someone who is willing (and often does) travel to obtain medical care.

Travel the world! See the sights! Get your appendix cut out! — Now there is a thought. It’s a bone jarring statement, but it is happening more and more. Usually the reasoning behind Medical Tourism is cost: The cost of a medical procedure in some locales is so low that it actually justifies the travel expenses. It’s becoming a big business; India is expecting Medical Tourism to grow and Taiwan is beginning to prepare for it as well.

The reverse side of Medical Tourism is the number coming to the United States. The cost may be cheaper overseas, but we’ve got the best medical care in the world. When someone wants top-notch care, they come here.

[IMPORTANT NOTE: Some of the links I have added lead to sites promoting Medical Tourism. I know nothing about these sites, the quality of care offered, or the complications that could ensue. I’m not a doctor, and I’m certainly not your doctor. It’s up to you to discuss any medical option with a qualified medical professional.]

As someone with a Congenital heart Defect (or their parent), you are already a medical tourist… once again, we’re leading the pack, the rest of the world is trying to catch up with us. The simple truth of the matter is that if you have a Funky Heart, your local community hospital is not going to be able to provide the care you need. My local hospital has about 150 beds and is pretty modern, but the original wing – which has only an enclosed toilet and sink in the patient’s rooms – is still being used. Obviously, that wing is only for low risk patients who aren’t having any complications, but it was quite surprising to see when I visited a friend that had a broken leg. Two rules apply here: 1) Not every hospital offers Congenital Heart Defect/Adult Congenital Heart Defect care; and 2) Of the ones that do, not all of them are good at it. So bite the bullet, gas up the car, and pack a bag. You’ll almost certainly have to hit the road.

If you happen to be a native of a heavily populated area with a large medical facility, you’re probably in luck. Big city facilities obviously see a lot of patients, and if you are lucky they have a well trained, experienced Cardiac Care program. It’s no fluke that most of the better heart programs in the country are located in large urban areas.

There are a few exceptions, the biggest one being Mayo Clinic in Rochester, Minnesota. The city of Rochester has less than 100,000 people, but since it is home to Mayo Clinic (considered by many to be the best hospital in the world) nearly everything revolves around it. Rochester has an International Airport (unusual for a city of its size) and the city bus system caters mainly to Mayo Clinic patients.When the Clinic closes early (Christmas and New Year’s), the bus system shuts down early.

No one said having a Funky Heart was easy… or cheap. But we can overcome this challenge, too!