Archive for the ‘Drugs’ Category

Balance

November 14, 2010

My Congestive Heart Failure (CHF) is worse.

I think the problem is correctable. When I was having the Gout flare-ups a few months ago, my Cardiologist took me off of one of my Diuretics. One of the side effects is that it can cause Gout, and I haven’t had very many problems with the Gout since.

But recently I’ve noticed swelling in my ankles, a constant cough, and I feel run down most of the time. So I asked my Cardiologist for permission to start taking that drug again… every other day. That ought to be frequently enough to help me, without causing the Gout.

With a heart defect everything seems to be a balancing act. We discontinued the drug to keep the Gout at bay, but it seems that I’m feeling worse. So I’m taking it again – at half the dosage I was originally taking it. So if my self-diagnosis is correct and resuming the drug will straighten me out, it will take twice as long for it to work (since I’m taking half the dose). If it doesn’t seem to be the solution, I’ll have to talk to my Cardiologist again, and we’ll have to figure out a Plan B. And there is always that thought in the back of your mind: What if Plan B doesn’t work? Plan C might, but even if it works wonderfully, that’s one more option off the table.

Stay hydrated… but with your CHF, don’t drink more than 2000 millilitres (2 liters, or 67 US liquid ounces) per day. Normally that’s more than enough to drink, but what if I pick up a stomach bug that keeps me in the bathroom constantly? Then you can break the 2000 ML rule – but be careful! We don’t want to start having too much fluid in you. You also need to limit your salt intake to no more than 2000 milligrams per day. But when you get that stomach bug, Oral Rehydration will help tremendously… and Oral Rehydration is mainly (you guessed it!) water mixed with sugar and salt.

The goal is to try to keep everything in balance, to give your medications the best opportunity to help your body. If your doctor says to exercise, do so. (I’m one to talk! I have walked very little since hurting my knees in my July fall.) Don’t just fill a new prescription, question the doctor about the medication. What is it supposed to do? How will it help me? And what side effects should I look out for?

And be sure to ask the most important question: What can I do to help myself?

On the cutting edge

November 5, 2010

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.

A new blog!

October 19, 2010

Mary Knudson is a health journalist, good enough that she has been a writer for The Baltimore Sun and teaches science and medical writing to grad students at Johns Hopkins University. Her new blog about living with heart failure opens with the sentence:

I got to know something about heart failure the hard way, by having it.

Heart failure affects millions of Americans, including me. The odds are that you (or someone you love) will have to deal with it, eventually. But as grim as it sounds (Oh my God, Heart Failure! My heart has failed!) it is survivable and you can live with it. Mary is – and she’s learned enough that she’s written a book, along with Johns Hopkins Chief Cardiologist. The blog is an offshoot of her book.

The first entry is a story that many Congenital Heart Defect patients and their parents are familiar with: a misdiagnosis and a roller coaster ride to figure out what is really going on. Mary’s heart failure blog is the feature today and will move into the blogroll tomorrow.

Exhausted

October 9, 2010

By now you have heard or read of the unusually high number of Congenital Heart Defect (CHD) deaths during the past week. There have been at least six (some have stated that at least ten have passed, but I personally know of six. I’m not certain of the others.)

I’ve become e-mail friends with Joshua’s mom. Joshua was born August 16, 2010 and departed October 6. His mother was by his side practically the entire time, but what’s more, Joshua was never stable enough to travel. He never saw the world outside of the hospital.

52 days of hospitalization, two major heart operations…. the costs are going to be enormous. Joshua’s family is certainly physically exhausted, and before all is said and done they’re going to be fiscally exhausted.

When I was in the Intensive Care Unit after my first surgery in 1967, the cost was $66 per day. After I had a stroke in 2002, Intensive Care was $2200 per day. Note that in both cases the price quoted is basically a “rental fee”. It pays for the right to lay in the ICU bed for 24 hours. It does not include the cost of seeing a doctor, specialized nursing staff, drugs, or monitoring devices. I’ve stayed in hotels that cost $66 per night, but I have never stayed in a $2200 per night hotel. I doubt that I ever will.

The “average” Congenital Heart Surgery and hospitalization could easily cost $100,000. Where is a young family supposed to get that kind of money?

TELL HIM WHAT HE’S WON!

August 30, 2010

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!

Three Ghosts

July 14, 2010

The Ghost of Heart Defects past….

I am beginning to feel a little better about him now, but he is still on the critical list….He will have to be operated on again, but unless it is a case of having to have the surgery as soon as possible, it should be several years. We have been here a long time and it seems like we have a long time to go. Keep writing when you get a chance because it does us good to get mail from home. (Copied from a letter to my grandparents from my parents, February, 1967)

The Ghost of Heart Defects present….

Things with Isaac’s recovery have gone very well. In April, his cardiologist told us that Isaac was doing great and for the first time he told us that Isaac had “no restrictions”. I couldn’t believe it… I could go on all night raving about how wonderful he is, but the real point of this is to let all of the other heart families out there know that there is hope for your child as well. Isaac only uses 1/2 of his heart since his Fontan and yet no one even knows he is sick. (Copied with permission from the blog of a Heart Mom, July 2010)

The Ghost of Heart Defects yet to come…

It was amazing, Dad. Little Freddy was so blue when he came out. They slapped him on the bottom and he didn’t really cry, he just gasped for breath. They strapped him down to this little board – strapped him down so tight that he couldn’t move – and the first thing they did was jab a needle right into his chest. That made him pretty mad, and it didn’t do me any good either. If that wasn’t bad enough, they followed that up with another injection, and they put Freddy’s umbilical cord in a sterile container and one doctor left the room with it. They told me later that the first injection was stem cells, and they injected them directly into the heart. The next injection was either genes or entire cells, I’m not sure which, but the doctor called it “NRG1”. They say that the stem cells will repair his heart very slowly, and the NRG1 will help speed things up. They say that Freddy is going to need a heart valve, so they took his umbilical cord. They will harvest the stem cells there and build one in the lab for him. And when they replace it, the doctors won’t cut him open – they will put the valve on the end of a little tube, and push that tube through his blood vessels to his heart. Then they will just pop it into place. (E-mail that will hopefully be sent at some time in the future; all of these technologies are being developed today.)

Let’s do it again!

June 24, 2010

“All this has happened before; and it will happen again.”Battlestar Galactica

I’ll give you three guesses to figure out what I have been doing today.

Today, I went to the doctor’s office to have blood drawn; I bought medication;  and I bought groceries. The groceries I don’t mind – we all have to eat, of course. But since I am on a blood thinning medication (Warfarin) I have to go in every so often and have my INR number checked. Warfarin is a delicate drug – it’s really rat poison – and it seems to be able to go up and down on its own. Tie your shoes, the number goes up. Cross your legs, it goes back down. It seems like anything can affect it.

So you must have your Prothrombin Time (PT) checked. The results are given as the INR Number (which stands for International Normalized Ratio.) If the INR falls within you Therapeutic Range, everything is good. If it doesn’t… your doctor is going to adjust your medication and you’ll have to have a retest, usually in two weeks. My INR number has been riding a rollercoaster lately, and I’m feeling like a pin cushion.

If you are lucky, you can do the test at home. You test your blood much as a diabetic would, only you are looking for the INR number, not a Blood Sugar level.  I haven’t been lucky – My hemoglobin is too high, and it makes the testing machine go crazy. So I have to drive 20 miles for the privilege of having a needle stuck in my arm.

My medications tend to make my head spin, too. I take 14 different medications a day, and if I could figure a way to get the same amount of pills for each prescription, I think I could figure a way to refill them all at once. But no – some of them are 30 day prescriptions; a couple are 60 day; and a few are 90 day prescriptions. I think I go to the Drug Store every two weeks! It’s not difficult (if you keep close track of when you need refill and prescription renewals) but is sure is inconvenient!

This probably sounds like a whine, and it very well could be – it seems that as soon as I get through one “cycle” of refills or blood draws, it’s time for another. And my heart problems aren’t going away, so I’ll be doing this forever. But doing these things are extremely important, and they allow me to live my life. I enjoy life – I just get frustrated at the repetition.

But it is an important part of not giving up. These drugs and the blood tests allow me to do things like go to Houston for Hearts Re-United 2010. I recently got a new laptop bag, and one of the things that was important to me was to get one that had plenty of room for medication. The old one didn’t, and trips longer than 4 days required some creative packing on my part. (NEVER pack your medication in your checked baggage if you are flying. If you go to Detroit and your bag goes to Dallas, you’re in trouble!)

So yes, I’ll whine a little about blood tests and prescription refills – but I’ll still do it. I’m having too much fun to let my bum heart win!

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.

It isn’t working

April 11, 2010

Durn it!

Dronedarone, the Atrial Fibrillation drug that has been highlighted here before, isn’t living up to the hype. It was already known that it is not as effective as Amiodarone, but it doesn’t have the side effects that drug has. The hope was that if you developed A-Fib at an early age, or have a milder form of A-Fib, you could be switched from Amiodarone to Dronedarone. Amiodarone is an effective suppressor of A-Fib but the side effects can be terrible.

In fact, the last time I wrote about Amiodarone, I was accused of using “scare tactics” to get my point across. I wouldn’t do that – Heart Defects are  scary things; As any parent/CHDer knows. I’m not going to add to the hysteria. Behind every link on this blog is more information about a subject; click and read for yourself. HERE is the link I used the last time, it’s written by a Cardiologist. Obviously, he knows more about this drug than I do, and he isn’t a fan of Amiodarone, either.

Further testing has shown that Dronedarone is only half as effective in humans and doubles the rate of death! Dronedarone is recommended only as a second or third choice for people who can’t tolerate Amiodarone. Britain’s National Institute for Health and Clinical Excellence (NICE) gave the drug its approval after originally turning it down, based on its limited effectiveness and its price.

So while Dronedarone doesn’t look like it can be the answer everyone was looking for, perhaps it does have a place in the “medical toolbox”. For right now, the first drug of choice is still Amiodarone, and Cardiac Ablation is still an option.

And other researchers will continue to search for better answers.

The Other Side of the Coin

April 7, 2010

Despite the fact that the overall time doctors and patients spend discussing medication is going down, there are still doctors out there that will go to bat for their patients. When you find one, grab on and don’t let go… an intelligent, proactive patient coupled with a doctor who goes above and beyond the call of duty are hard to beat!

That’s one reason I love my Adult Congenital Cardiologist and his team at Emory University Hospital. There have been some changes recently that make it a little harder to get in touch with them than in the past, but these all seem to be because more and more patients are being seen. (That’s great news! More and more of us CHDers are hanging around!) But they will get back in touch with you, especially if it seems that a problem is developing. I’ve had the Nurse practitioner that works with my doc to call me at 8:00 PM at night – say, don’t you people ever go home?!?!

Laurie Edwards knows just how important it is to have a doctor who is on your side, and she give us a good example – not by bragging on a good doctor, but by showing us the exact opposite. In this case, Laurie has to hold her tongue while a friend lives the nightmare.

The Professional Patient has a good post titled Accepting that you might be like this forever. “Congenital” means occurring at birth, so someone with any kind of congenital problem needs to drop the word “might” from that statement. Even if you have a corrective procedure, you’ll probably have residual effects and need to be monitored all your life. A doctor/advocate can help you not only with your general health and medications, he can go to bat for you when questions arise about your health status. For example, try to apply for any kind of medical coverage with a pre-existing condition! Even if you are successful, there are going to be forms to fill out and examinations, and someone is going to want to look at your medical records. It is going to be a pain in the *ahem* – but having a medical professional who will handle their part of the paperwork quickly and efficiently will make the road a little smoother.

When you find a good doctor – grab him and don’t let go!