Archive for the ‘blood’ Category

Just in case…

August 26, 2010

I was very pleased – to say the least! – about my exam at the Emory Adult Congenital Heart Center yesterday. An Echocardiogram showed that my Left Ventricle is 6 Millimeters smaller than the original Echo done there in 2002. It was 82 Millimeters across in 2002; it is now 76. And in my case, a shrinking heart is a 100% Official Certified GOOD THING!

If there is trouble in the future, if my PulseOx numbers were to start dropping and I was feeling worn out all the time, there are a few options that we could try to help get me back on an even keel. A couple of them are invasive but do not involve heart surgery… surgery can be a risky (and quite possibly fatal) proposition for me.

First things first, remember that 1) I am not a doctor; I’m just trying to explain it to you as it was explained to me. 2) This applies only to my heart and my health situation. Every heart defect is different, and what works for me may not be such a good thing for you… and vice versa.

The general plan for me would be to increase the blood oxygenation… but when you do that, the heart is naturally going to work harder. The trick is to find a happy balance between a decently high PulseOx and the amount of work that the heart can do. Right now my PulseOx is in the low 80% range and I have that happy balance.

The first option I would have (and all this is way in the future, if at all!) is based on my unusual anatomy. Like many reading, I have the Glenn Shunt. But mine was done in 1967, and is a completely different operation. Let’s review the difference:

The Bi-directional Glenn Shunt, the operation usually performed today: The Superior Vena Cava is cut where it joins the heart and is sewn into the Pulmonary Artery. They usually try to sew it as close to the T formed by the Pulmonary Artery to deliver an equal amount of blood to both lungs.

The Classic Glenn Shunt, performed on me in 1967: The Superior Vena Cava stays where it is. Instead of being cut, it is sewn closed. The right branch of the Pulmonary Artery is cut and sewn into the side of the Superior Vena Cava, which means that all of the blood from the Superior Vena Cava is sent into the right lung.

Now in my case, the Vena Cava wasn’t sewn completely closed. I don’t know if that was an error or if a small opening was left to relieve pressure that got too high, but a small amount of blood gets through the chokepoint and into the Right Atrium. If I were to start having problems they could use a Catheter to plug that small hole. That would cause my PulseOx to climb but shouldn’t increase the heart’s workload too much, and would probably be my best option.

The second thing they could do would be to create a fistula in my right arm. Basically, they would “short-circuit” the circulatory system by connecting an artery directly to a vein. My blood would head down my right arm as usual, but would “turn around” and head back toward the heart before it normally would. (Don’t worry,there are lots of of arterial branches and veins…. my arm wouldn’t rot and fall off!) That would increase the PulseOx numbers… but would also increase the heart’s work load. It is probably my second best option.

The third option would be a combination of medications that could reduce the natural resistance inside my body. Part of the heart’s work comes from how far the blood travels – if you could take all of the blood vessels out of an average human child and place them end to end, you’d have about 60,000 miles of blood vessels! Part of the heart’s work is because of resistance – your blood also has to turn corners and flow through organs (“Scuse me! Comin’ through!”). The medication would “grease” my blood vessels and make the blood flow through them easier. This would cause my PulseOx to rise… but not as much as any other option. My heart would also work harder. With more effort but not as many benefits, this is my third and least attractive option.

But getting a good report now gives me something better than all three of these possibilities: time. Nothing has to be done now, nor for the foreseeable future. And if I do reach the point where something needs to be done, delaying it now means that another optionĀ  could be developed that might be even better than the three ideas currently on the table.

All part of the master plan to keep pushing that final day back!

UPDATE: See Heather’s comment below for a good laugh! šŸ™‚Ā  Thanks, Heather!

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!

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.

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.Ā  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 blockĀ  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.

“Low Sodium” Salt – coming soon!

March 24, 2010

A big announcement came out of a PepsiCo investors meeting yesterday – the company is working on a “Low Sodium salt.” Now I know a bunch of my readers just shouted “There ain’t no such thing!” at their computer screen, so I will try to explain.

PepsiCo’s new salt is designed differently. When you eat a potato chip, only 20% of the salt (if it is “normal salt”) dissolves on your tongue and gives you the salty taste. You chew and swallow before the rest of the salty flavor has a chance to kick in.

PepsiCo’s new salt is shaped and sized to allow more of the salt to dissolve in your mouth – consequentially, they can use less of it. This is also a part of PepsicCo’s plan to cut the amount of sodium in its food products by 25% over the next 5 years. The new low-sodium salt chips will be introduced in a few days.

This could be great news for those of us with Congestive Heart Failure (CHF). When the doctor tells you that you have Heart Failure and puts you on a low sodium diet, the snacks go out the window… at the very least, they have to become an occasional treat. A very occasional treat. Perhaps now we can have a chip or two without worrying if we are bumping into our daily sodium limit.

But this is Pepsico’s newest Secret Weapon (not only against Sodium, but all the other snack producers) so we don’t know what is in their formula. If it contains a lot of Potassium Chloride (a popular “Salt Substitute”, just replace the Sodium Chloride with Potassium Chloride) then it won’t do CHF patients any good. Potassium can affect any number of our drugs. And if you are on Warfarin, then you really need to avoid Potassium Chloride. Potassium is Vitamin K, which causes blood to clot. Warfarin reduces the ability of the blood to clot, and the two substances almost cancel each other out.

Reducing your salt intake is a good choice, especially if you have Heart Failure. It remains to be seen if the new “Low-Sodium Salt” is a step in the right direction or much ado about nothing.

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 Ā£4.20 per day for Dabigatran, and about Ā£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.