Posts Tagged ‘stroke’

Give them a break

April 1, 2010

I heard it again last night!

Every so often I’ll hear (or read on a blog) frustration or anger aimed at the American Heart Association. “The American Heart Association only allocates 2% of its funds (or 3%, or 1%… the number always seems to change) to Congenital Heart Defect research! This is a shame and disgrace!”

Umm… I hate to be the bearer of bad news, but that is not their job. As proof, I offer the Association’s own Mission Statement, copied from their website:

The American Heart Association is a national voluntary health agency whose mission is: “Building healthier lives, free of cardiovascular diseases and stroke.”

In fact, the American Heart Association deserves a pat on the back – even though they normally only work to eliminate cardiovascular disease and stroke, for many years they were the only Heart Advocacy group around. Because of this, their website maintains several good pages about Heart Defects (look HERE and HERE for two examples; there are other pages as well ); they offer a 64 page booklet titled If Your Child has a Congenital Heart Defect, and also has a good webpage for Adults living with a Heart Defect.

The American Heart Association controls the Legacy of Life Endowment, a national campaign to raise one million dollars for Congenital Heart research. Florida also has the American Heart Heroes, an Association program that helps sends kids with Heart Defects to Camp Boggy Creek, a camp for seriously ill children north of Orlando. Broken Hearts of the Big Bend, the great CHD Support group located in Tallahassee, works closely with the American Heart Heroes program. And you can designate a donation to the American Heart Association for CHD causes, with the assurance that is where it will go. Just write “For Congenital Heart Defect causes” or “Legacy of Life Endowment” on the memo line of your check.

Traveling the extra mile

October 13, 2009

So where do you get your medication?

Heart Parents and Heart Warriors know our pharmacy like we know the backs of our hands – it seems that we almost live there! It seems no matter how hard we try, there’s just no way to get everything coordinated. Everything runs out at different times, and with eleven different drugs, it seems that I am at the drugstore two or three times a month. So you may be surprised to learn that I travel 68 miles (one way) to fill my prescriptions.

That’s a pretty nice trip, and yes, there are drug stores that are closer. As you may guess, there’s a reason I travel that far.

In the summer of 2002 I was a patient at Emory University Hospital after having a pacemaker implanted. I had been in heart failure at my community hospital, they had admitted me and placed me in the ICU until I stabilized. Four days later, things were getting worse and I was moved to Emory. So now I was in Emory’s ICU recovering from the pacemaker implant when I had a small stroke.

They had gotten me up and sat me in a chair, and since I was less than 24 hours post surgery, I wasn’t sat the top of my game. My foot fell asleep; but I figured it was just twisted under me at a bad angle. I certainly didn’t feel like moving it around. A nurse walked by and stopped, looking in my little cubicle. “Smile at me,” she said.

The next thing I know this five foot tall nurse was throwing me back in the bed. “I think you need to lie back down,” she said, and a moment later someone was checking my eyes with one of those little flashlights.

My right side “turned off” for three days – and that is the best way to describe it. I couldn’t feel or move anything on the right side of my body. I didn’t “fight back” – I really couldn’t get my head around it. Stroke? Couldn’t be… all that I knew was that my foot had fallen asleep. I hadn’t felt anything else, no problems breathing, didn’t feel any heart pain or funny beats. Nothing.

Then as suddenly as it turned off, my body turned back on. My doc asked me to squeeze her hand on the fourth morning, and without thinking my brain sent the proper signals to my right hand. And this time it worked!

“Whoa! Do that again!” I could move, I felt pain… it was working but it was like my system had rebooted. Everything worked, but my right side wasn’t following orders. I was assured that this was pretty normal and that good Physical Rehabilitation could get everything back in working order. I did a week of rehab at Emory- their plan was to get me started on the path to getting better, once that was established I could be transferred to a facility closer to home to continue my rehabilitation.

That day quickly came. I was able to stand and walk just a couple of steps (with help) but they helped me out of the wheelchair and into our van. Emory’s Rehabilitation Unit and one of their “Ambassadors” (Social Workers) had been in contact with The Big Rehabilitation Hospital close to home, and they had my records, knew that I was “medically fragile”, and were prepared to evaluate me and make a rehab plan. I’m only going to identify them The Big Rehabilitation Hospital (TBRH) and that’s all – you’ll see why in a moment.

We got to TBRH and dad dropped me and mom off – he was going home and make sure all was ok, and check on our house and the pets before returning to pick us up. The nurse who met us was friendly and things were going well until she said “Let’s get you to your room.”

Whoa! Timeout… on our end in Atlanta, we were under the impression that there was going to be an evaluation and then the plan would be decided. No one had said anything about being admitted as soon as we arrived.

“Oh, we received your records and looked them over, it’s all planned out!” At the same moment she’s pushing my wheelchair towards my room. Hold  on, wait just a moment… you guys understand that my docs want –

“We’re TBRH, we cure everybody! You’ll be in good hands!”

We wanted her to slow down, take a breath, listen to us – we had been told about this evaluation (which we assumed that we would be a part of and have some input into) and told to take it nice and slow until the pacer incisions were healed, and this nurse was talking about hitting the ground running. And her response to everything seemed to be “We’re TBRH, we can cure anybody!”

“Wait just a damn minute!” – that had come out of my momma’s mouth! “We want to talk to a supervisor.”

The nurse looked a bit miffed but did as we asked, and it wasn’t very long before the supervisor appeared. He listened, but I had already been evaluated – sight unseen. As soon as my medical records had come in, they had put me on a rehab track –

That’s it, I said. My voice wasn’t working very well because of the stroke, and it took me a long time to say even a simple sentence. It sounds like I’ve been placed on a preplanned course of treatment. That worries me.

Well, you don’t have to stay here if you don’t agree with our policies, he said.

That’s what we’ll do. When my dad gets back we’ll go home, and I’ll call my Cardiology team. If my doctors say this is OK with them, we’ll come back here.

Well, you can’t come back tomorrow, he said, no one will be in the front office. You can lose track of time in a hospital pretty quickly; it took me a moment to realize that the next day would be July 4th.

We figured a little over an hour for dad to get home, about 30 minutes to check everything and feed the animals if they needed it, and an hour back. During the time he was gone, the nurse brought dinner in for my almost-roommate.

“Since you aren’t a patient here, we don’t have anything for you,” she said. That very well could have been the rules or a TBRH policy, but the way she said it sounded a lot like two can play this game, bub. Or I could have just been overly sensitive after the “evaluation” confusion.

Dad got back and we told him the entire story. “Do you know if he has had his evening medications?” Dad asked the nurse.

She shook her head. “TBRH does not provide drugs to non-patients.”

The next thing I know, I’m back in the van and we are burning rubber for a big box retailer about a mile away. I didn’t even get out of the van – how could I, I was barely moving – but my parents rushed in and got to the Pharmacy counter about 3 minutes before closing time.

“I need to get fourteen different medications for my son, who was released from the hospital today. Can you help me?” (I wrote eleven at the top of the page; thankfully I’ve been able to drop a few since this happened).

“They didn’t prescribe the drugs?” the Pharmacist asked, incredulously.

“Not their policy,” Daddy said, skipping the long explanation.

“No problem,” the druggist answered, even though she was just moments from the end of her day. And that is why we travel almost 70 miles to fill my prescriptions… because they were willing to help when I needed them.

I debated if I should write this post or not – it’s human nature to present yourself in the best light possible, especially if you are the one telling the story.  We don’t look very good, and neither does TBRH. I could have been confused , tired, still not thinking right because of the stroke, or just plain wrong. Maybe a little of each. It’s been seven years and I still don’t know.

But the Pharmacy did go Above and Beyond the call of duty, and it is really appreciated. Thank you for helping a customer!

Your nose over your toes!

January 23, 2009

Do you know how to stand up?

I’m serious. Tell me how you stand up from a sitting position.

I had to be taught how to  stand up from a chair after suffering a stroke. I don’t know it is was a TIA, a “real” stroke (thankfully a small one) or just stroke – like symptoms, but I had one.

I had developed Congestive Heart Failure (CHF) while on vacation and hospitalized after I returned home, then transferred to Emory University Hospital where my cardiologist worked. The people at the small community hospital where I had been hospitalized had mentioned that a pacemaker may be part of my treatment plan, but my defective heart is so unusual that I wanted my regular cardiologist to examine me before a final decision was made. He agreed, and in fact felt like things were to the point that a pacer was inevitable. So the pacemaker was installed and I was in the recovery room the next day.

“Do you want to get up?” the nurse asked. Might as well say yes, because you are going to get up… mobility helps the healing process. I still had wires and tubes attached to me, so with the help of two nurses I got up, managed to turn around, and sat in a chair next to my bed. The community TV was on The Montel Williams Show. So I blame Montel for what happened next.

I was sitting in my chair with my foot twisted under me at a sort of funny angle. It didn’t hurt but I did, so I saw no reason to rock the boat by trying to move it, and eventually my foot fell asleep.

A nurse walked by my bed, stopped, and said “Smile at me!” It isn’t that often that a young lady asks to be smiled at, so I did.

“You need to be back in bed,” she said, and before I knew it she flung me back into the bed, hit the call button, and asked for neurological assistance STAT. In moments there was a guy looking in my eyes with his penlight and I was on my way to the MRI scanner.

In an hour or less my right side had just… switched off, for lack of a better term. For three days I was in the ICU with no movement of feeling in the right side of my body. And then suddenly, it just switched itself back on.

But that doesn’t mean that I was able to hop out of bed and dance the Rumba. I had no control, and my body didn’t seem to want to do what I told it. I got enough Physical Therapy in Atlanta to be able to do basic things, and then continued the therapy locally after I was discharged.

But there is a proper way to stand up from a chair. You do it every day and never even think about it. I’m recovered so much that I don’t even really think about it anymore. Try it the next time you stand up, and see if you don’t follow these steps:

1) Slide to the edge of the chair.

2) Place your feet shoulder width apart.

3) Place your nose in a direct line over your toes.

4) Push upward, using your thigh muscles.

Now, do that 99 more times and then we’ll move on to something else!

Physical Therapy hurts! You’re moving muscles that don’t want to move or haven’t been moved in a while, and they are complainin’! When you finish, you’re not sure if you’ve been to a rehab session or if you’re a hockey player who keeps getting slammed into the glass. But some pain now for a larger payoff later… today, you wouldn’t even know I had a stroke unless I told you. So if you know a Physical Therapist, shake his hand or give her a hug. Your patients don’t like to see you walk in the door, but we are so glad you did!

Keepin’ the Beat!

October 3, 2008

It’s the 50th birthday of the Implantable Pacemaker! Check out the first one produced by Medtronic – scroll down to see how big it really was – and read the obituary of the first man to receive an implantable pacemaker. (Thankfully, more than 40 years passed between that first pacemaker and the obituary!)

What if there was a new MRI-type Imaging System that could be built with electronics that you can buy almost anywhere? There is! (And take a look at the quality of images it can produce!)

Well, this isn’t good. Be sure to warn your doctor if you have a family history of stroke.

“That blood vessel is too small for a stent.” Not any more.

Pfizer’s throwing in the towel.

Panasonic has a new computerized handheld tablet for hospital use, used for updating medical records. It’s based on the Panasonic Toughbook. Despite the new tablet, Electronic Medical Records still have a long way to go. Kevin is not a fan; and it makes one of his fellow doctors shout “I want my paper records back!”

Where you live does matter when you are seriously ill! Go here for the full report and a national map. More charts are available at the bottom of the page.

A new Stem Cell Therapy is entering the trial phase. Non-controversial, too, as the stem cells are taken from the patient’s thigh. I’m keeping an eye on this one!

Remember how the ACHA was campaigning for the Social Security policy team to allow adults to submit Pulse Oximeter readings rather than Arterial Blood Gas test results? Here’s why.

Better Hospitals equal Better Care

September 3, 2008

I was already in the hospital when I had my stroke. I had been admitted to Emory University Hospital suffering from Congestive Heart Failure the day before, and a pacemaker had been enplanted to regulate my heartbeat. The nurses had been really good about letting me rest during the night, but now it was time for me to get up.

If you’ve had a major operation, you know that you just don’t “hop up.” Scratching my nose hurt, so why in God’s name should I even think about getting out of bed? But if you lay around too long fluid begins to collect in your lungs, and you’re on your way to pneumonia. So let’s get moving, young man!

It’s actually a bit easier than it used to be. When I was at the University of Alabama/Birmingham in 1977, they kept the fluid out of your lungs by coming to your room twice a day and slapping your back a couple of dozen times, then making you cough until you spit up into a cup. Today’s heart shaped pillows and cough bears are so much better!

So they sit me up, and slowly help me turn until my feet are hanging off the bed’s edge. Because of all the wires and tubes I have coming out of my body, this is more complicated than it sounds. There are two, and sometimes three, nurses involed in this operation: one to hold your arm and give you someone to brace against, and the others positioned behind you to keep all your wires and tubes from getting tangled. I ease myself up, take two steps, turn slightly, and settle into the chair.

The nurses turned on TV, so I wouldn’t have to just stare at the wall. The Montel Williams Show was on, so I blame him for what happened next. Apparently I am allergic to Montel Williams.

I was sitting there when my foot fell asleep. I didn’t even notice it at first, but when I did I didn’t give it much thought. My foot was under me at a funny angle, and I didn’t feel like wiggling and working it out. So I just let it ride.

A nurse walked by my cubicle and wished me a good morning, and I said good morning in return. She slammed on the brakes and looked at me and said “Smile for me.” I’ve never turned down a request for a smile from a young lady, so I gave her my best smile.

“We need to get you back in the bed right now,” she said, and rather than taking it slow and easy, that 100 pound nurse yanked me up, spun me on her finger, and slam dunked me in my bed. In a minute there was a doc leaning over me, flashing a little light into my eyes.

“So how we feeling?”

“I had a pacemaker put in yesterday, so I’m tired and sore. Other than that, pretty good.” Obviously, I wasn’t getting it. A few moments later, I was on my way to a CAT scan and my parents were being called. When they arrived, they were told that I had had a stroke, but it didn’t appear to be major. As for me, it seemed that my right side had just “turned off.” And within the hour, I was moved from recovery down to the ICU Unit.

There is a small community hospital near my home (not the one where I get my blood drawn). They seem to take a “weekends belong to us” approach: Just a few weeks ago a friend of mine became suddenly ill on a Friday afternoon. She was taken to the Emergency Room of this community hospital and admitted. Her doctor ordered some tests to determine the problem, but none of the tests were performed until Monday morning… when all of the regular staff got back from enjoying their weekend. It seemed to me that if something serious had happened to her over the weekend, she would have just had to cool her heels until 9:00 AM Monday morning.

My stroke happened early on a Sunday morning, yet the response to my needs was instantaneous. The nurses were on the ball, the CAT scanner was warmed up and ready to go, and the Neurologist was in the building. The patient (me) didn’t have to wait on anything.

When an ACHDer (when anyone, actually) begins thinking about what hospital to use as their primary care facility, they need to consider such things as weekend staffing. Do they seem to be “Open 24 Hours” or do they work bankers hours? Talk to your friends who have been a patient there over the weekend. If you happen to know someone who is on staff at the hospital, speak to them. Because health emergiencies don’t follow the clock.

MARK YOUR CALENDAR: ACHDer’s in the New York City area, there are two meetings coming up that will be on of interest to you: The first is an Educational Meeting on Heart Failure and Adult Congenital Heart Defects at 6:00 PM on September 9, 2008, at the New York Presbyterian Hospital/Columbia University Medical Center, in Room 213 on the 7th floor of the Milstein Building. The Milstein Building is located at 177 Fort Washington Avenue in New York City. If you’re coming, you are asked to bring a snack to share if possible.

Also, there will be an informal dinner with Maggie Lichtenberg, author of “The Open Heart Companion,” at the Viceroy Restaurant on September 17 at 6:30 PM. The Viceroy is located at 160 8th Avenue in New York City. Each attendee will pay for their own dinner.

For more information or to RSVP, e-mail Heather at