Archive for the ‘Blood Test’ Category

Heart Defects and the 2010 Midterms

November 8, 2010

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

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Dabigatran approved!

October 21, 2010

For the first time in nearly 50 years, patients with Atrial Fibrillation (A-Fib) have a new blood thinning option: Dabigatran. The talk is already starting about how this could replace Warfarin (which is really RAT POISON… we’re just given it in doses too small to kill us!)

One can hope, but there is still a lot that we need to learn about the drug. The US Food and Drug Administration has approved it only as a preventive for stroke caused by A-Fib. Will it even work for anything else? The odds are that it will, but it still needs to be tested. How are people with mechanical valves going to react to it? Somebody’s going to have to take a deep breath and test it. Yet another problem is the cost. Dabigatran is estimated to cost $8 to $12 per day; Warfarin has been around so long that the cost is a pittance. But that is just the cost of the drug – with Warfarin, you also get the required monitoring, in the form of the INR Test. Dabigatran doesn’t require monitoring. Does the cost of Warfarin plus the cost of the test plus supplies make its cost roughly equal with Dabigatran?

There’s another major drawback for certain CHDers: Dabigtran is currently not recommended for “patients with the presence of a severe heart-valve disorder.” That sounds like Tricuspid Atresia patients, Hypoplastic Left Heart Syndrome patients, and those with several other defects are out of luck. Perhaps it is not for us because of lack of testing; if that is the case, the recommendation may change in the future.

At the moment, Dabigatran looks like a drug with a limited potential. Hopefully real world experience will change this.

Replace the PulseOx test for CHD!

September 30, 2010

Just a few weeks ago the Pulse Oximetry test (also known as PulseOx) became part of the Newborn Screening Uniform Panel. In a post on this blog, we discussed how the PulseOx was a good test, but not perfect.

But what if we could discard the PulseOx, in favor of a better test?

Hot off the press – really, it hasn’t even been printed yet, it was electronically published before a print version is available – is a study by the University Medical Center in the Netherlands. Appearing in the European Journal of Clinical Investigation is a study (CLICK HERE to read the abstract) showing that certain biological markers do show up more often in children with Congenital Heart Defects! In the study, higher concentrations of S-adenosylmethionine, S-adenosylhomocysteine, and folate RBC were observed in children with heart defects.

(Don’t ask me to explain all that; it’s DNA and Molecular Biology with a little Chemistry thrown in for good measure!)

Could this test replace PulseOx? Perhaps… but not tomorrow. The study was a relatively small study, with only 329 children participating. (143 CHDers with 186 heart healthy children as a control group) The researchers themselves even stress that more research needs to be done.  But we could very well be looking at the first steps to a foolproof, 100% accurate “GOTCHA!” test for heart defects. And by studying the DNA changes that occur with a CHD, we could unlock the secret to how heart defects occur… and stop them before they begin!

Special thanks to Amy Basken for bringing this research to my attention. Amy is tireless, working for several different CHD groups. Today she represents Mended Little Hearts!

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!

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!

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!

Pulse Oximetry explained

March 30, 2010

A Pulse Oximeter (PulseOx) is a useful tool, but exactly how does one work? Obviously, it’s not magic, though it might as well be. Very few people can tell you what happens in the couple of seconds that occur after you place it on your finger.

Pulse Oximeters were invented in the 1940’s by scientist Glen Milliken, who published his ideas in a research paper titled The oximeter: an instrument for measuring continuously oxygen-saturation of arterial blood in man. But it looked nothing like the Oximeters we have today: those wouldn’t appear until the Japanese refined the technology in 1972.

But the average person still wouldn’t have been able to purchase a Pulse Oximeter. Biox made it into a commercial product in 1981, and it was the late 1980’s before they really began to catch on in the United States.

So how do they work? A Pulse Oximeter emits light from two different sources: a red light that you can see, and an infrared light that you can’t see. As the PulseOx is placed on your finger or ear the lights activate automatically.

The red light (which has a wavelength of 660 nm) shines through the finger and is absorbed by hemoglobin. The problem is, everything else in the body absorbs light, also. So the infrared light is used too – it has a higher wavelength and is absorbed at a different rate than the red light. A receiver picks up the light waves from both sources as they leave the body, and the Oximeter’s computer chip compares the two. The comparison values are entered into a mathematical formula (CLICK HERE and page down to see the formula that makes Pulse Oximetery possible) and the answer is displayed on the screen – all in a matter of moments!

If I had to do the math to figure out the Oxygenation level, It would take all day to get one reading!

Oximetery does have its limitations: while most people think it is a beat to beat accurate measurement, it is not. It is an average over time. Another big drawback is that it can be fooled by Carbon Monoxide poisoning. hemoglobin mated with Carbon Monoxide responds like oxygen mated Hemoglobin, so a patient dying of Carbon Monoxide poisoning will give a PulseOx reading of 90% or higher.  Also, dark skin could cause inaccurate readings. This 2007 report contends that it does; later reports either report no effect or draw inconclusive results.

New Pulse Oximeter receives FDA Approval

March 28, 2010

There’s a new Pulse Oximeter available that has just received approval from the Food and Drug Administration (FDA). It not only measures the amount of oxygen in your blood, but your pulse rate, hemoglobin level, and your blood glucose level!

Released in March 2009, the NBM-200MP accomplishes all this through blood flow occlusion – using a small ring like device to temporarily block  blood flow – to produce more accurate results. And what a lot people don’t know is that PulseOx readings are wildly inaccurate when the patient has low blood oxygen.

But that problem won’t affect this new Pulse Oximeter. A Clinical Trial showed that the NBM-200MP continually gave accurate results even when a standard Pulse Oximeter couldn’t. The standard PulseOx couldn’t even give a reading more than half the time. A second Clinical Trial (It’s on the same page as the first Clinical Trial; just page down) showed that in cases of low blood perfusion, the NBM-200MP gave accurate results 100% of the time while the brand of Pulse Oximeter normally used by the participating hospital continually gave a false reading or no reading at all.

It ain’t over just yet!

March 25, 2010

Guess who’s back in town?

Guess who never really left?

H1N1 is on the upswing again in the state of Georgia, reaching their highest level since September 2009. The good news (if there is any good news to be found in H1N1) is that while hospitalizations are up, there has only been one H1N1 related death in the past week. This follows reports of regional and localized H1N1 activity in eleven States and Puerto Rico.

A Replacement for Warfarin?

March 22, 2010

A lot of people dislike Warfarin. Also known by its brand name Coumadin, it is the most prescribed anticoagulant (Blood thinner) in North America. If you can get past the fact that you are taking something that is also used as rat poison, the constant monitoring and dosage adjustments are a pain in the butt. Every six weeks you must have a blood test, and it reacts with nearly everything. Other medications and even your choice of foods can make the drug more or less effective. This requires you to adjust your medication and have another blood test. It’s enough to make you yell!

But there are two new anticoagulants being developed that could replace Warfarin. The first is Dabigatran, which is marketed in Europe as Pradaxa. Dabigatran was approved for use in Europe and Canada in 2008 and is currently being considered here in the United States by the Food and Drug Administration.

Dabigatran has all the appearances of a wonder drug. It has done well in scientific studies: the RE-LY clinical trail shows that it performs better than Warfarin at some dosage levels; the RECOVER study proves that there is no need for the constant monitoring and no food/drug interactions.

If you’re waiting on the other shoe to drop, here it comes: Dabigatran is expensive. Great Britain’s National Health Service pays £4.20 per day for Dabigatran, and about £1 per day for Warfarin.

Ugh. Now that’s a problem.There are several theories that the cost difference can be recouped not only through the savings in monitoring costs, but the costs associated with stroke recovery. The simpler a medical therapy is to use, the more likely someone is to follow the instructions and benefit from it. Warfarin is difficult to maintain, while Dabigatran wouldn’t be. Just take your pill and go about your business.

The other new drug is Betrixaban, which is still being developed. It’s a joint venture between Merck and Co. and Portola, and like Dabigatran requires no monitoring and has almost no interactions. But it is still in Phase 2 testing, a long way from public use. Also, Portola is developing an “off switch”; another drug that can be administered in case of a heavy bleed and deactivate Betrixaban.

The potential market for any company that can develop a Warfarin replacement that has less interaction and less monitoring needs is wide open. Hopefully market forces will not only benefit the companies developing new drugs, but those of us who rely on them.