Posts Tagged ‘Links’

Funky Heart PLUS!

September 13, 2010

Be sure to check out Adventures of a Funky Heart! on Facebook!

You will still be able to read Funky Heart! posts on Facebook, but the page offers something just a little bit different. I check over one hundred online resources daily searching for items to write about. I find a lot of things that are interesting, but that aren’t suitable for posting here. Usually, the reason is simple – it has nothing to do with Heart Defects.

I used to just save the links and hope I could use it in a post later; but more often than not time would pass and I would just have to erase the link. Good links are like homemade bread, they are best when they are served fresh!  So the Facebook page is sort of like “Funky Heart PLUS”… You get the “regular” Funky Heart posts and you get those non-heart related links that I think are so interesting! There’s really no rhyme or reason – you might see a link to the latest in Stem Cell news, a blog post that I liked,  or even an article about the very first Heisman Trophy winner… who gave his Heisman to his Aunt. She used it as a hat rack.

So look us up on Facebook at THIS LINK, check out all the cool links on the wall, and hopefully “Like” the page and hang around! Your coffee break conversations will become a lot more interesting!

Interviewed by a Fellow Blogger!

January 17, 2009

Here’s one of the reasons that there was not a post yesterday… I was busy participating in a “Blogger Interview”! The questions were presented by Strong One over at My Strong Medicine. His questions and my answers are posted below.

If you want to participate, it’s easy! Just follow five simple rules:

1. Leave me a comment saying, “Interview me.” Be certain that there is an e-mail address or website that I can use to contact you!
2. I will respond by e-mailing you 5 questions.  I get to pick the questions.
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them 5 questions.

Strong One’s questions are in bold text.

1. Please tell me more about your blog.

Adventures of a Funky Heart! is written from my point of view as an adult living with a Congenital Heart Defect. I was born in 1966 with Tricuspid Atresia and I have had three heart operations in an attempt to relieve it. I started Funky Heart in July 2008, intending it to be a blog aimed primarily at other adult CHD survivors. That didn’t last very long – parents of children with a heart defect were commenting and sending e-mail, all saying “Thank you! We’ve never been told anything about raising a child with a heart defect!” How can you turn your back on people who are in the same situation that your parents were in? So Funky Heart has changed – it’s still an adult blog, but I include links to research, new drugs, and try to make it applicable to Heart Moms and Heart Dads as well as adult survivors.

2. How has your Congenital Heart Defect affected your life?

Everyone was called nicknames in grade school; it’s part of growing up. My special nickname was “Blue lips! Blue lips!” I’d run off and whine to the teacher, and of course, that just made things worse. So I learned how to laugh at my defect, and at myself. It’s difficult to make fun of someone when he is laughing right along with you! So I guess my sense of humor can be “blamed” on my defect.

The most difficult part of living with a heart defect is all the problems that are associated with it. I got into a coughing fit, leaned over, and threw up blood. That lead to my second heart operation. I was a junk food junkie until the day I developed Congestive Heart Failure and had to adapt to a low sodium diet. I remember thinking “Just hand me a pistol, because I’ll never be able to do this!”It’s been seven years since that happened, and I’m still going strong. There are monthly blood tests, medication changes, I had to stop taking one drug because it made my liver enzymes go crazy, and for a while I was on Amiodarone. It’s a good drug for suppressing arrhythmia, but it can quickly damage your lungs, your eyes, or your Thyroid.

One of the good things that has happened is that I have joined the Adult Congenital Heart Association (ACHA) and gotten very involved with their programs to support adult survivors of a Congenital Heart Defect. These are some of the most positive, supportive people I have ever met… you would think that there would be someone in the group who is pessimistic about their life; if there is, I have yet to meet them! I’ve made a lot of friends through the ACHA, and they are all survivors, just like me!

3. If you were not a survivor of an Adult Congenital Heart Defect, would you still blog? And what would it be about?

Probably not – Blogging had never crossed my mind because I didn’t feel that I had anything to say. I live in a very rural area, five miles outside of a town of 450 people. I love it because it’s so quiet, but if you ask me what’s going on, “A whole lot of nothing!” is usually the answer. For ten years I worked at a local agricultural museum; I enjoyed it but I don’t see much blog materiel in that!

4. How has your cyanosis affected you professionally and/or personally?

Cyanosis, for those who may not know, comes from the base word “Cyan” and means “blue.” When a person has low blood oxygen, they often appear to have a bluish tinge around their fingertips and lips. My oxygen saturation runs about 80% normally and drops when I do physical activity, so I can’t run or exercise as much as a heart healthy person. One of the best descriptions I’ve seen was written by another ACHA member in a letter sent to the Social Security Disability Policy Committee: “The best way to explain how it feels is to run around your house while holding your breath.”

I’ve already mentioned being called “blue lips” as a child. In high school my fellow students never understood why I got to sit out P.E. exercises when I felt like it. And being honest, I got lazy and sat out when I could have kept going. No excuse, I was young and stupid. Hopefully I’ve matured some since then.

I refuse to wear a blue shirt, since it brings out my cyanosis and makes me look ill. Red is my color, it makes me look healthy. When I worked at the museum, I always had some help whenever I needed it. Nothing was ever mentioned, I think the Executive Director read my application and quietly passed the word around. We featured meeting facilities, and had to change the layout at least once a week. I was the king of moving the round tables! Just tilt them up on their edge and get them moving, didn’t even have to fold the legs in.

5. What is your secret for being so positive and proactive about your condition?

It wasn’t that long ago that there were no congenital heart defect survivors – the first congenital   operation took place in 1944. Someone born on that day is still ten months short of retirement! Until the early 1980’s Hypoplastic Left Heart Syndrome (HLHS) was an automatic death sentence, then the Norwood Procedure was developed, and the oldest HLHS survivors are just now becoming adults. Now there are new developments in stem cells, replacing heart valves without open heart surgery, and patching ASD’s through a catheter. And more is coming!

One day, there isn’t going to be a need for CHD support groups. On the day when my support group, the ACHA, closes its doors for the last time, I plan to be there. I learned how to properly fold a flag while working at the museum, and if we’re bringing it down for the last time, I’m going to make sure it’s done right!

More resources!

January 12, 2009

Did you know that the Centers for Disease Control (CDC) publishes an online assessment of Flu activity in the United States, updated weekly? They do, click here to read it. It is usually a week behind… it takes a few days for all the information to come into to CDC Headquarters in Atlanta and be compiled. The CDC Flu Report features lots of numbers, charts, and graphs, so if you tend to be a bit geeky, this is for you. (If your are female, single, and a bit geeky, feel free to contact me…!)

Google also has a Flu website, and they claim that their information is current. Their thinking is that when people begin to feel bad, they will go to their computer and enter their symptoms into a search engine, trying to determine if they really are ill. Google FluTrends is programmed to detect words used to describe flu symptoms, and it will report them both on a chart and visually. TIP: When you switch to a state view, the chart will be blank. It takes a few seconds to load the information.

Google is full of wonderful information, if you just know where to look. Typing the words “Congenital, Heart” into Google Book Search brings you a list of books about the subject, and clicking one of the links usually provides you with images of the cover and pages! Because of Copyright issues, some of the books are “limited preview”, and some are not available at all. This tool is useful for seeing what books are available on a subject.

Google Scholar is a compilation of technical works about a subject. This is where you enter can enter more elaborate terms into the search box, like Bidirectional Glenn. There are plenty of papers to study here, and the word is STUDY – these are by doctors for other doctors, with lots of medical words to slog through!

Just remember that not everything you read on the Internet is true… and it may not apply to you! If you look up information of Congestive Heart Failure (CHF), for example, most of the literature states that the average CHF patient survives for five years after the initial diagnosis. That accounts for all patients… including the ones who may already be suffering a debilitating illness and the ones who say “Oh my goodness, my heart is failing!” and just roll over and let it happen. If you change your diet, exercise, and take care of yourself, you can live well beyond the 5 year “limit”. I’m in my 7th year of CHF and doing very well!

Google Blogs will take you to a familiar website! It will also show you other blogs dealing with Congenital Heart Defects, and this may be the most useful tool that Google offers… the comfort of knowing that you aren’t alone!

Judge Tolliver Speaks

January 4, 2009

In the 1999 HBO movie The Jack Bull, John Goodman plays Judge Tolliver, one of the few honest judges in the area. Near the end of the movie he speaks with a fellow judge:

“I worry about you and me, Judge Wilkins. I swear to God I do, ’cause if this country gets ruined… it’ll be ruined by people like you and me. This is a territory of unimportant people; most folks around here can’t even write their name. You and me… we’re the important people. Trouble is, there’s not enough of us important people to go around – we’re spread thin, so sometimes, important things get ignored or don’t get said. Like… take care of the little feller; see to it that he don’t get ignored or cheated or insulted; make sure that his dignity does not get trampled on. Now you’re feelin’ bad right now, and by God, you ought to… seein’ as what just happened to a decent man. Myrl Redding did not fail the law…the law failed Myrl.”

(Special thanks to The HealthcareBS blog, The Happy Hospitalist, KevinMD, the About.com Patient Empowerment blog, DrWes, the Street Watch: Notes of a Paramedic blog, and Insureblog for the content behind the links!)

After Christmas Sale, All Links 50% off!

December 26, 2008

There is news on two upcoming events from the Adult Congenital Heart Association (ACHA). April 24-26 2009 have been selected as the dates for ACHA 09,  the Association’s Professional Development Conference. Only Medical Professionals are invited to ACHA 09.

But the ACHA’s Sixth National Conference will be held in Los Angeles in 2010! The National Conference will be open to ACHA members as well as our Cardiologists and medical staff! No dates or specific location (Los Angeles is a big place!) has been announced yet, but as soon as I hear, I’ll let you know.

Lobby Day will be held in Washington, DC on February 10, 2009. It’s hard to believe that in just a week the calender will read 2009 and that event will be just around the corner!

Trisha Torry, writer of the Patient Empowerment blog, writes that Santa is going to be working again in a few days. We all know that he usually only works on the night of December 24, but this year he’s making an exception. Trisha’s mom was one of the few people that he couldn’t visit. Best wishes to you and your mom, Trisha!

Canadian researchers are developing a better way to preserve organs for transplantation! You usually have to transport the organ before you can transplant it, and if you’re going further than the next room, it helps to keep things cool. But you can keep it too cool and damage it! But now there’s a better way to figure out how cold is “just cold enough!”

An apple a day keeps the doctor away, and a hot drink works well, too!

Read this article and you will see, no caffeine for the Mom-to-be!

There’s a new stethoscope called the VRI, and it works (kinda) like an MRI! No magnets or large tubes, though. Check it out, it’s pretty cool!

The Cardiac CT scan your doc ordered my not be the best way to go. Not only is there a good chance of a bad reading, but you also pick up a fairly high dose of radiation for your trouble. Right now, it’s probably best to stick with an angiogram.

‘Till next time!

Old McDonald had a link…

December 11, 2008

While waiting for a blood test today I was sitting next to a young mother with a newborn – and I do mean NEW! The little feller had been born this past Sunday (December 7th) and had been born a few weeks premature! As you can guess, he was TINY! Other than jaundice, he seems to be OK.

My cousin – who I consider as the sister I never had – was also born in December, a few months after me. When she calls me on my birthday she calls me “old man” because I am older than her. But when I call her on her birthday, she won’t let me call her “old woman” – she’s the same age I am!

There are some interesting items in our links tonight, not all of them about the heart. First, the Paramedic SuperMonkey says you can tell a good man by looking at his feet.

They’re patching holes in the heart without surgery in Atlanta!

Don’t believe everything you read about medical advances. Medical reporting is hard, and not many people do it well. Only you and your doctor get to decide what’s best for you. That goes for Adventures of a Funky Heart, too!

Deborah Heart and Lung Center seems to be doing things right! A big round of applause for them.

Heart Failure clinics do certain things well.

Miss-Elaine-ious, RN reminds us that strokes suck. I’ve had a very mild stroke – didn’t hurt a bit, but I was as scared as I have ever been. It’s no fun to think about life without a functional body. Learn the early warning signs and make the recommended lifestyle changes.

Researchers always thought that the heart didn’t regenerate itself. They might be wrong.

And finally, one last good post from Paramedic SuperMonkey: SuperMonkey’s brother passes the ultimate test.

Night of the Living Link

November 23, 2008

My new phone arrived this week! Thankfully, I didn’t pay that price for it, every now and again it pays to “know someone who knows someone.” Before I can even think about updating Funky Heart from the road, I’ve got to get all the internet settings right, and that hasn’t happened yet. This replaces a phone that is 10+ years old, so I’m going to be playing catch-up for a while. It’s about as frustrating as being the Commander of the space shuttle and not being able to find the ENGINE START switch!

I’m also frustrated by the fact that there have seemed to be a lot of good links for you this week, but when I click through to read the article, most of them are subscription sites. *sigh* I’ve still been able to put together some good ones, though.

Beware the Transplant surgeon who will “adjust” the statistics. And kudos to the retired hero, who strapped on his guns one more time to restore order.

Patient attacks four nurses. Nurse/Victim/Witness testifies in court and tells the Truth, The Whole Truth, and Nothing But the Truth, so help her God. The Victim Impact Statement was a real party, too: “Mr. Jailbird’s attorney stood up and started screaming something about HIPAA. The judge told her to sit down and to be quiet.

Important Safety Tip: No Porn after Heart Surgery!

Another casualty of Hurricane Ike. Sad.

The Feds are pressing doctors who accept Medicare to get with the program on Electronic Medical Records. There is even a pilot program in two states – a program with a potentially HUGE flaw. And don’t think that something bad can’t happen.

Fast food chains in the United Kingdom promise to improve their menus. Hey guys… what about us?

“The time has come to speak of many things.”

November 14, 2008

Katie’s father continues to write on her website, working through his emotions at this trying time. He’s a really good writer! I’m sure he’s not writing for style or content, but he’s very eloquent.

While not concerning Congenital Heart Defects, this is important information to have in case of a heart attack: Find out if a hospital in your area supports the STEMI protocol, and try to find out their Door to Balloon time. Then contact the organization in charge of Ambulance Services in your area and find out if and how their vehicles and First Responders are coordinated with STEMI. During a heart attack, time is muscle – the longer it takes to get quality care, the worse the damage to the heart. A properly organized STEMI response can cut that time. Here’s a good example of STEMI in action: Ambulance dispatched: 8:07; Catherization Balloon inflated: 9:08. Another example is provided by Elaine, a brand new nurse who sees a STEMI developing in the ER. The STEMI system isn’t perfect, but it is a good start. CHDer’s usually don’t have “traditional” heart attacks, but it is good to know this information, just in case a friend or family member has one.

How to help prevent medical mistakes. Also, ten questions you should ask about your scheduled surgery.

If you see an elf, blast ‘im! (Link from The LawDog Files. The title of his blog always reminds of the classic line from the movie Tombstone.)

Gene therapy for Congestive Heart Failure (CHF)! If that doesn’t work, perhaps a gas will. (Careful of that gas, though! This is not a Do-It-Yourself treatment!)

This will be great – a pacemaker powered by the heart itself! Here’s a photo. And here’s Georgia Tech’s version.

Just in case you haven’t figured it out, we’re spending a lot of money on health care for chronic diseases. How much? TOO much – just read question 1. More than half of us can’t afford what we need, but a lot of that money could be saved… both in the private sector and in Medicare costs. New MRI scanners and CT scanners add a LOT to total Medicare costs – and that’s not installation costs.

There are two ways to cut your heart attack risk – take Crestor, which cuts your heart attack risk 44% (and costs a pretty penny) or get up off your butt, lay down the smokes, and take care of yourself! Exercise even helps Congestive Heart Failure (CHF) patients, who usually show up in the Cardiologist’s office so much, we qualify for frequent flyer miles. The problem is, given a choice between taking a pill (and perhaps having someone else pay for it) and taking care of ourselves, a lot of Americans would take the easy way out. And that little fact is making The Happy Hospitalist have a 100% officially certified BAD DAY.

I tend to agree with him.

2001: A Link Odyssey

November 7, 2008

Our first link was e-mailed to me by Madison’s mother, and it is an audio webcast of a program titled “Under-recognized Complications of Adult Congenital Heart Disease”. Be patient, the site takes a moment to load, but when it does you can choose to download the file as a MP3, listen to it as streaming audio, or request a transcript. This is worth hearing as preparation for when your Cardiac Kid grows up! After all, 90% of children having heart surgery today will survive to adulthood, so you might as well be ready!

In an e-mail I received earlier this week, Adult Congenital Heart Association (ACHA) President Amy Verstappen said that the “standard number” of new Congenital Heart Defects cases each year is 1 in 120. The number is based on birth incidence,  and since not every Heart Defect is caught at birth, that number may be a little low. But 1 in 120 is a good starting point.

Kevin, MD notes that trying to save your money could cost us all. Bummer!

Blood is like milk! Thankfully you can’t buy a gallon at the corner market; I’m sure Dracula is disappointed.

Your mother was right! And if you ask”How long?” the answer is “As long as it takes to sing a verse of Happy Birthday!”

Taking Plavix? CHECK YOUR OTHER DRUGS!

Wash your food before eating, or else you might have this problem. (That can’t happen… can it?)

North Dakota is a rural state with two seasons: Winter and July! But they have some of the best health care in the nation. How do they do it?

Dr. Rob reminds you that “You can cry in front of me.”

And we close with another gem from Dr. Rob, who describes a pediatric heart exam with wit and humor!

Link, Link, Link your Boat, Gently Down the Stream….

November 2, 2008

We have a new link in the Blogroll: Congenital Heart Defect Clinical Trials. Clicking this link takes you to a list of the medical studies authorized by the National Institutes of Health (NIH) to study Congenital Heart Defects. The information can be viewed on a map (click the “Results on Map” tab) so you can choose a study taking place near you. By participating in a Clinical Trial, you can be a part of finding a cure for Heart Defects. The list changes often, so there are many opportunities to participate. (Since I’ve set the link to automatically load every study having to do with Congenital Heart Defects, click “Refresh” on your browser after the list loads. That will give you the most up to date listings.) Clicking on an individual Trial takes you to more information about that project and who to get in touch with to participate. Take an active role in fighting CHD by joining a Clinical Trial!

A basic Cardiology skill, but can your doctor do it?

Let’s encourage transplants by turning the system on its head.

Who is the world’s most kissed woman? You’ll never guess! (Hint: The rumor isn’t true)

The brains at MIT thought of this one: Repair a heart by building a scaffold.

Wheelchair backflip! With video!

AND…

Officially, you now have no excuse for not voting!