Posts Tagged ‘Hospital’

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.

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You’ve come a long way, baby

August 17, 2010

Jill and Shane continue to report on Joshua. Diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), Joshua was delivered at a major medical center and was immediately sent to a Neonatal Intensive Care Unit. By contrast, I was born in a community hospital of less than 100 beds. My grandfather – only an occasional smoker – was so nervous that when I didn’t show up on time, he unwrapped the celebratory box of cigars that he planned to give away and lit up. He was chased outside (smoking was accepted almost everywhere in the mid 1960’s, but a nurse wasn’t comfortable with anyone smoking around the newborns) so he stood under a dogwood tree and smoked until he just had to find out how things were going. Then he jammed his cigar into a fork of the tree and rushed back inside. He never said anything about retrieving his cigar, so for all I know, it could still be there.

Joshua’s parents knew they would be on a roller coaster ride from the moment he arrived. I looked normal. There were no prenatal tests in the 60’s, not even a way to tell if the unborn child was a boy or a girl. Only my mother’s intuition led her to notice that something wasn’t exactly right, and she consulted a pediatrician. The pediatrician that they had used for my older brother was out of town so they talked to the New Guy.

The New Guy realized he was looking at a heart problem but wasn’t sure of the details, so he sent my parents and me to the BIG HOSPITAL 200 miles away. The Doctors at the BIG HOSPITAL figured out that I had Tricuspid Atresia… and stopped. They had never successfully treated a Tricuspid before, so they gave my folks the diagnosis and told them to take me home and enjoy the time I had. I was not long for this world.

New Guy hit the roof. BIG HOSPITAL may not be able to do anything, but he knew of places that would at least try. He found one, and to make a long story short, I was a patient of New Guy until I was 20 years old. The “new” had worn off by then, but he’s one of only two doctors to really understand what is going on inside of me – him and my current Cardiologist. I still see him around town every so often!

By contrast, Joshua was pegged as a Cardiac Kid long ago, while he was still being knit together in his mother’s womb. The moment he was born he was handed off to a skilled care unit. Their only job is to keep him stable until it is time for his repair. And while we thought 200 miles was quite a way to travel to a hospital, that’s no longer true. 200 miles is a short trip.

We’ve literally come a long way.

Welcome to the club

June 4, 2010

I read a lot of medical blogs every day looking for information to pass along to Funky Heart! readers, and when I found  StorytellERdoc he quickly became one of my favorites. There is no doubt about it, the doc can write. Today’s entry deals with children who have a Chronic Illness and their parents. StorytellERdoc has been there himself:

One of our amazing ER nurses, Kathy, the mother of a son with cystic fibrosis, said it best when Cole was first diagnosed. “Welcome to the ‘Parents-Of-A-Sick-Child Club’,” she whispered in my ear while hugging me. “It’s a club that no parent would ever want to belong to,” she continued, “but one that will change your life forever.”

No doubt about that. You wanted the 2 kids and a picket fence that is the dream of every parent. What you got was a full-scale war. You’ll have to learn skills that have absolutely nothing to do with your chosen career, take a crash course in Medicine, learn a foreign language (yes, “Doctor-talk” is a foreign language!) and unless you are lucky enough to live close to a major medical facility, you’ll have to become your own travel agent. But somehow you manage to dig your heels in and push back; you fight for what is yours and you hold on. That’s all you can do.

In the ER, when I meet the parents of an ill child, especially a prolonged, chronic illness, my utmost respect and compassion flows outward in tidal waves. I can only imagine the heartbreak and the struggles they have known in dealing with the fight for their child’s life, trying to obtain just a wee bit of normalcy.

It is a war that won’t be covered on the evening news, and can barely be put into words. Only a chosen few – members of The Club – understand. StorytellERdoc is a member of the club. Go, and read his account of one family’s  battle.

The other side of the OR door

May 31, 2010

I’ve often written of how surgery day is excruciatingly long. They may tell you that it will take four hours, but that is rarely true. And every minute seems to drag as you wait for news of your loved one. You just want this to be over – but nothing good comes of a short operation. The longer, the better – the doctors are still working, still fighting for you. A short operation could mean that the fight is over and the good guys lost.

It’s the same on the other side of the Operating Room door. When you are waiting, just standing there twiddling your thumbs, time drags. When surgery begins and everyone has a job to do, time flies. “Five people working as one unit,” Gene Hackman said in the movie Hoosiers, and a Surgical Unit is a team in every sense of the word. Everyone has a job to do, and when you work together long enough, you even begin to think together. In this article appearing on KevinMD.com, Dr. Bruce Campbell explains that time distorts in operating rooms, too. But it seems to act in reverse:

I look up at the clock. It seems like only a few minutes have passed since I had anxiously waited to begin the case. Five hours have disappeared like an instant.

Go and read Dr. Campbell’s work.

In case of Emergency, Break Glass

May 18, 2010

Note: This is the entry I posted last night. It was active for about five minutes before I pulled it down to tell you about Gabriella’s heart transplant. (She’s awake and doing well, at last report!)

The day is going normally and suddenly you (or your Cardiac Kid) have a problem. And it’s not a stubbed toe or a skinned knee, it’s a We need to go to the hospital right now problem. What do you do?

Your first move should be to grab your Heart Book. What’s a Heart Book? Glad you asked!

One of the most frustrating things about Congenital Heart Defects (CHDs) is that they affect each one of us differently. My Atrial Septal Defect (ASD) is slightly bigger/smaller, it is in a different location in the Septum… whatever. The end result is that two people with the same defect rarely have the same symptoms.

And you need to assume that when trouble happens, you’re going to be quickly overwhelmed. You’re suddenly stressed out, you aren’t thinking clearly, and if you are the patient you could be in pain. No matter why, just assume that mentally you aren’t going to be much help.

So the first thing you should do (or do after calling 911) is to grab your heart book. Since CHDs affect everyone differently, your treatment plan is going to be different – and the information your doctor needs is in your heart book.

First, your book needs to contain all your important personal information: Copies of your driver’s licence, birth certificate, insurance policies, Organ Donor Card… what ever you need to prove that you are you, that goes in the front of your heart book. If you travel internationally it wouldn’t hurt to put a copy of your passport in there, also.

Next, you need a drug chart. CHDers medications are usually pretty involved; so I’ve included one as a .pdf file in the blogroll. (or you can CLICK HERE to download it) Save a copy to your computer (you’ll need another copy when the doctor changes your meds!) print out a blank copy and fill in your medications and dosages. Keep a current copy in your Heart Book.

Have a page outlining your heart defect, the name, address and phone number of your cardiologist, and general treatment options. Also be sure to note what shouldn’t be done. Saline? Ok, but I’m on a low sodium, controlled liquid diet, so I’ll probably need an extra dose of diuretics later. Keep pumping me full of saline and things might get ugly. MRI? No way Doc, I have a pacemaker! Echocardiogram or CAT scanner for me!

Get your cardiologist to draw a diagram of your heart with all the surgical corrections. Speed may be critical when you have an emergency, so don’t make the Emergency Department doctors get an x-ray to figure out what is going on inside your chest.

You can also include EKG forms in your folder, that will be helpful. You’re going to have a strange beat pattern, so it will help if you have an EKG strip taken at a regular checkup, so they can see what your heartbeat normally looks like. Getting an EKG strip isn’t hard – the next time you have one done, just ask. Some will just run two strips and give you one, others will photocopy the original. You may have to sign a form that says you asked for it, in case there is every any question, but there shouldn’t be any problems getting your EKG. Be sure to update it occasionally and keep it current.

Now here’s the hard part – we’ve got to take this information and condense it. Remember, this is your secret weapon that you only use when there is an emergency, so we don’t want to present the doctors with a copy of War and Peace. You need to get the important information across clearly, concisely, and quickly. Ask your doctor. Better yet, catch an Emergency Department doctor when he isn’t on duty and ask him/her: If I came into your hospital with this information, would it help you do your job?

I hope this information will help you put together a terrific Heart Book that will be invaluable.

And I hope you never have to use it.

Is Robot Surgery worth the cost?

April 30, 2010

The coming thing in heart surgery – and almost any type of surgical procedure – is robotic surgery. Forget the popular image of R2D2 wearing a surgical cap and mask, there is ultimately a qualified surgeon at the controls of the robot. When you think of Robotic Surgery, you usually think of the da Vinci Surgical System, which has multiple uses in several medical fields. And just yesterday it was reported that a British citizen had an ablation using a robot to guide the procedure. And recently a computer was used to develop a model of a patient’s beating heart, which would allow a robot to perform a surgical procedure without use of the Heart-Lung machine.

But does Robotic Surgery provide better results or is it just the newest tool? The Robotic arm used in that British ablation cost £350,000. (Over $525,000 US Dollars; using today’s conversion rate) Who pays for the cost of that piece of equipment? Patients.

In a post on KevinMD’s website, Peggy Peck asks if Robotic Surgery for Prostrate Cancer offers any advantages. Disturbingly, the answer is “no”, despite claims to the contrary. In fact, men undergoing the minimally invasive procedure tend to have more problems in the long run.

The Law of Supply and Demand is a major factor in the use of Robotic Surgery options – with the patients providing most of the demand. The average Robotic Surgery costs about $2000 more than hands on surgery, but patients continue to demand it:

It’s come to a point where “patients interview you,” according to a urologist. “‘They say: ‘Do you use the robot? O.K., well, thank you.’ And they leave.”

And with healthcare finances shaky, a hospital almost has to invest in a Robotic Surgical System to keep up with the hospital across town. Patients undergoing any kind of surgery in which Robotic Surgery is an option should do their own research and determine if they would rather have all the bells and whistles or have their surgery done the old-fashioned way.

Ask Questions!

April 6, 2010

Here’s a scary report, courtesy of Kevin, MD: Patients don’t ask questions of their doctors.

While there are a precious few patients who are totally involved in their health care, the vast majority just take their doctor’s advice at face value. A 2008 study found that when 181 people were prescribed a new medication, they asked a total of 199 questions (or made a comment) about the new drug. That’s an average of 1.09 questions/comments per patient!

What’s worse, the same study showed that the doctors didn’t talk, either. The average office visit was 15.9 minutes, and the patient and doctor spent an average of 49 seconds discussing the medication. The length of discussion ranged from a high of 351 seconds (5.85 minutes) to an amazing 1.9 seconds! (What can you say in 1.9 seconds?!?!)

As noted before, patients who are more involved in their own health care ask more questions. That’s you. Having a Congenital Heart Defect means that you are, for all intents and purposes, a patient pool of ONE. Others may have the same defect that you do, but no CHD ever treats its owner like everyone else.

As I’ve written before, I have a hernia. It’s usually well-behaved, but occasionally it will get pretty angry with me. A hernia repair is a fairly simple operation these days, and usually doesn’t even require an overnight stay… except for me. My Cardiologist does not want to authorize the operation, instead asking me to just fight through the bad times by prescribing couch time and TV. “I could spend a day explaining your anatomy to the surgical team,” he has said. “And they still wouldn’t understand it.” It’s not that he can’t, my doc has a couple of teaching awards to his credit. I’m complicated.

So if you don’t know what’s going on with your body, it is time to learn. And ask questions – what is this medicine supposed to do? What are some of the side effects? What do you think would happen if I decided not to take this drug? Are there any other options available? All of these are legitimate questions – and if your doctor gives you an answer in 1.9 seconds, ask another question. You can control how long he talks to you. Conversely, you can find a doctor who will spend the time needed to help you make a good decision.

It’s your body, and the medical decisions you make affect you, and rarely anyone else.

What’s your guess?

March 29, 2010

From Dr. Wes:

“We’ve got a 40-year-old male with a pacemaker and a strange X-Ray down in Radiology. One of the interns said`Whoa!’ when he saw this but I don’t think that’s his official diagnosis. What do you make of it?”

(Hold your arrow pointer over the X-Ray for the answer.)

Change of Heart

March 26, 2010

“You can  settle for less – an ordinary life – or do you feel that you were meant for something better? Something special?”

I used to have a T-shirt that read “Change of Heart at UAB”. UAB is the University of Alabama at Birmingham, and in the late 1970’s it was THE place for Cardiac surgery in the Southeast. After my second heart surgery the staff expected you to get up and get around, and one day my “travels” took me into the hospital gift shop, where I bought my shirt. My dad contended that had to be the most expensive shirt I had ever bought (Buy a T-shirt, get a FREE Heart Operation!) but I was proud of it.

But right now, I’m going to send you on a trip. You’ll be visiting my friend Sharon, who is going to tell you the story of an event that happened last year – one year ago exactly, March 26, 2009.

“Pack a suitcase for 3 days and get here as soon as possible,” he said. I started to cry and scream all at the same time. “You’re kidding? Thank G-d!!! We have it! You’re getting the heart!!!” I still get tears when I think of this moment.

You’ve guessed it – you are going to ride along with Sharon as her husband gets a desperately needed heart transplant. You won’t find the entire story – Sharon says she was in tears as she wrote it and had to take a break. But you will see the next part when she posts it.

And I bet you’ll be in tears, also.

But for right now, GO! I told Sharon that she’s have some company today!

Click here to read Sharon and Anthony’s story!

A different way to take your pills

January 29, 2010

“Hey! Let’s be careful out there!” – Sgt. Phil Esterhaus, Hill Street Blues

You always, always, always need someone looking out for you while you are in the hospital. A trusted friend, someone who will look out for you. If you are under the influence of any kind of antistetic and not thinking straight, they can be your “second brain.” Later, when you have your higher thinking skills back, you can be your own advocate by keeping a notebook within reach and writing down the names of staff, the information they give you, your diagnosis, and any medications you receive.

The prescription process is complicated – it is designed to be, to prevent both fraud and medical errors – but mistakes can still happen. And they happen more often than you think. The experts say that on average, there is one prescription drug error, per patient, per day in US hospitals.

Let that thought rattle around in your head for a while.

But there is a simple step that you can take to lower the chances of receiving the wrong drug. Can you guess what it is?

Before I give the answer, let’s think about how you usually receive medication while in the hospital. It takes less than 30 seconds and you probably don’t even think about it – the nurse come into your room with a plastic cup containing your pills and a glass of water. You dutifully swallow the pills and follow it with the water. And you never get to see the original pill containers.

Your nurse prepares the medication at the Nurse’s Station desk, and it has been done that way for as long as I can remember. But to increase your safety, why not do it a little differently. Politely ask the nurse to bring your medication into your room in the original containers. And this is one of those time when you have to measure your words and ask politely, because if you don’t, most people automatically become defensive. I know I don’t like to be accused of doing something incorrectly. And I certainly don’t like to be told “You’re doing it wrong!” before I even get started! So this is when you need your best negotiation skills… and a little persuasion.

But you don’t have to accept a negative answer. Be polite – but firm. After all, those medications are going in your body!