Posts Tagged ‘INR’

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!

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.

“At Night I’m a Junk Food Junkie…”

October 26, 2009

I have to go to the doctor’s office today to have my Prothrombin level checked, and I have a feeling that I’m going to be changing the amount of blood thinner I take. But overall, I think it is a good thing.

When you give the blood sample to have your anticoagulation level checked – a measure of the ability of your blood to clot – the results are your INR level. INR stands for International Normalized Ratio. At one time, there were many different systems and math formulas used to check anticoagulation, and lots of different results: This testing service may give you a result of 1.4, another might give a result of 73. It was too difficult to figure out if the systems were compatible, so finally the World Health Organization stepped in. A standardized system was determined along with a standard scoring system (the INR level). So now a reading of 2.6 means exactly the same thing, no matter if you have you test done in rural Virgina or downtown Toronto.

The rate at which your blood clots can depend on a lot of different factors: the availability of Vitamin K or Potassium are two of them. So when you start your anticoagulation therapy, they tell you to watch your intake of both and above all, be consistent.

I’ve been breaking that rule. Whoops!

All my life I have been a “Junk Fook Junkie”! That changed when I went on the low salt diet for Heart Failure, but I still ate poorly (Nutrition wise – it all tastes pretty good!) . I’ve recently decided that while I probably can’t just change completely, I can at least improve my diet.

So it’s been a bunch of little steps – and I’m a fan of the Eat This! Not That! series of books. They occasionally bump into my Low Sodium restrictions, and when that happens, the heart wins. Don’t take them as gospel, but rather as a guideline, and you’ll make better decisions. There are some Rules for Eating Well online at Everything Health that also make a lot of sense:

  • If you aren’t hungry enough to eat an apple, then you aren’t hungry!
  • Avoid snack food with the “OH!” sound (Doritos, Fritos, Cheetos…).
  • It’s easier to pay the grocer than the doctor.
  • Never eat something pretending to be something else (fake meat, fake butter, chocolate flavored drink…)
  • Make your own lunch whenever possible

But since I’m working on eating better, my diet is nowhere near consistent, and I have no clue how the Vitamin K and Potassium levels are doing. One thing you are told it “Try to eat about the same amount of green leafy vegetables that you usually do – big swings can mess up your INR.” Well I am not doing that, I am trying to increase the amount!

But they’ll just tell me to change the dosage of Warfarin that I take, and besides – you can’t really give a fellow a hard time for trying to take better care of himself, can you?

Moving Your Valves Around

September 29, 2009

Don’t be surprised to hear about more CHDers having the Ross Procedure to repair a damaged Aortic Valve. Invented by British surgeon Donald Ross in 1967, the Ross procedure is performed on roughly 1500 patients each year.

During the Ross Procedure, both the Aorta and the Pulmonary Artery are clamped and cut near the junction with the heart. The damaged Aortic Valve is then removed and discarded. The Pulmonary Valve is then removed and sewn into the Aortic Valve’s place. A frozen Pulmonary Valve (previously removed from a cadaver) is then reanimated and sewn into the opening left by the original Pulmonary Valve. In the final step, the Aorta and the Pulmonary artery are then sewn back into place. If this is a little confusing, here’s a helpful diagram.

It does seem a little strange – if you recall our memory trick for remembering the proper order of the valves, it’s “Three People Might Agree” – blood flows normally through the Tricuspid Valve, then the Pulmonary Valve, out to the lungs and back to the heart; through the Mitral Valve, and finally through the Aortic Valve and out to the body. T – P – M – A, or Three People Might Agree. If you follow the route after a Ross Procedure, you go through the Tricuspid, Pulmonary, Mitral, and another Pulmonary… Three People Might People! That makes no sense! But it works.

New research has shown that the Ross Procedure has a high survival rate, and the cadaver valve works well – after 20 years, 80% of Ross patients did not need replacement of either Pulmonary Valve. The operation also has the advantage of growing with the patient (great for children!) and no need for anticoagulation… Goodness knows, I wish I didn’t have to have an INR test ever few weeks!

New Blood Thinners!

September 28, 2009

The European Society of Cardiology held its annual big meeting recently, and the major news revolved around some new blood thinning medication coming to the market.

The two major blood thinners available now are Plavix, manufactured by Bristol-Myers and the second best selling drug in the world, and Coumadin, also known as Warfarin, which has been available for at least fifty years and is considered the “Gold Standard”. If you need to take a blood thinner, odds are you are on one of these two pills.

The new drug Pradaxa was compared to Warfarin and the results were roughly equal, with Pradaxa being slightly better. One advantage to Pradaxa is that the dosage is based on weight, not monthly blood tests, and there are fewer interactions with other foods and drugs. Not getting those pokes would be great!

Brilinta, another new anticoagulant, was tested gainst Plavix and found to be better at reducing heart attacks, strokes, and death. The study also found there were less bleeding problems with Brilinta.

A third drug, Dabigatran, was tested against Cumadin. In that study, Dabigatran seems to outperform Cumadin at higher doses and be roughly equal in lower doses.

All of these drugs are still in the testing phase – so it may be a while (quite a while!) before your doctor offers them to you for your anticoagulation needs.

What do you think you are doing?!?!

January 15, 2009

You know it had to happen. Especially right after I had written about volunteering at a training school.

I was scheduled for a Prothrombin test today, so I dutifully appeared at the doctor’s office, filled out the form, and waited my turn. It wasn’t long before my name was called and I went into the examining area.

The first unusual thing to happen was when we reach the cubbyhole they have set aside for bloodwork, and the nurse grabs my left wrist, searching for my pulse.

“You aren’t going to be able to find it there,” I tell her. “Use my other arm.”

“Oh, I usually don’t have any problems,” the nurse says. Ut-oh. Attitude alert!

After a few moments she admits, my pulse is hard to find. “I have a shunt on that side of my body,” I said. “The pulse isn’t readable on my left side.”

My answer earned me a Why didn’t you tell me that? glare. The next thing was the blood pressure – that was also new – and then she pulled out the lancet for a Prothrombin test via finger stick.

By now I have already rolled up my sleeve. “The finger stick test doesn’t work on me,” I tell the nurse, but I’ve got a feeling about what will  happen next.

“Why?”

I’ve tried to use one of the home test machines, but my Hemocrit is so high that the machine just reads error code number 5. So they have to do the blood draw from my elbow joint.”

“Let’s try it anyway,” she says, and snaps my finger with the lancet. In a few moments my blood is transferred to the reader; it whirrs and clicks and reports ERROR CODE 5.

Another glare for me. And to make it even better, my sleeve is still rolled up. Yes ma’m, I’ve done this test before!

While it’s true that you have the medical knowledge, I’ve been fighting this illness all my life. I know my body. And I’m familiar with most of the diagnostic tests that I may have to have. Just take a moment to slow down and listen to what your patient (in this case, me!) is saying. We’re not just another sample, another form to be filled out, another person to get a medical history from.

We’ve figured out a lot about how to live with whatever we are fighting. And we’ll usually share what we know… if you just take a moment and ask.

Not on MY life!!!

October 9, 2008

This is unreal.

My hospital is not going to be doing the prothrombin test anymore: That’s the test of the Warfarin level in my blood that gives me my INR number. And it isn’t really their fault — their accreditation agency told them to stop offering the test. Apparently, if your Hemocrit is above 55%, they have to hand-calculate the results to determine the correct INR. The hand calculation means they can not guarantee the accuracy of the results, and so they ordered the hospital lab not to offer that test anymore.

I’m not mad at the lab techs. They are some of the nicest people I’ve met, and always bend over backwards to help me out or to hurry up the process if I ever need a test rushed. And they can still do the CBC test for me. But I’d really like to talk to someone from the accreditation agency. if you aren’t offering this test to people with a Hemocrit over 55%, what about the patients in the hospital? And if you suddenly can’t speak for the accuracy of the results, then what about all my previous results? I’ve had that test done once a month for SIX YEARS; are those results suddenly no good?

But like I said, I’m not mad at the hospital lab. I’m not mad at the accreditation agency, though if I sat down and asked them some questions, I’d probably be steaming before we were through. You are about to meet the people I am really mad at.

Before I even knew there was a problem, my doctors and nurses in Atlanta learned about it and were trying to work out the problem. One of my Nurses Googled my area and found this group of doctors, who have an office about half a mile from the hospital. She called them, explained the situation, and asked if they would be willing to do the prothrombin test for me.

Now don’t let the fancy name fool you. They aren’t a state agency, what they are is a group of 24 cardiologists who, along with their Nurses and Nurse Practitioners, work at five offices spread throughout the middle part of the state.  So my Nurse asks if they are set up to do a prothrombin test on a patient with a Hemocrit above 55%.

Certainly! came the answer.

Can you do it for a local patient of ours, and forward the results?

Absolutely not.

Before they will do a lab test for me, I would have to transfer all of my cardiac care to them. Look down their list of doctors — there is not a Pediatric Cardiologist in the entire group, much less an Adult Congenital Heart Specialist. But they are arrogant enough to demand that I leave the doctors and nurses that I trust, and who specialize in care for my heart, before they would stick a needle in my arm.

I’ll answer them with the same answer they gave my nurse: Absolutely not.

South Carolina has the highest death rate from heart disease in the country. Heart disease – the problems you have when you age, nasty stuff builds up in your arteries, and you have heart problems because of that. If you have a heart attack followed by a bypass, these are the guys for you. Congenital Heart Defects are pretty consistent throughout the population: 1 in every 125 people have a CHD; slightly more in some areas; slightly less in others. The composition of their staff shows that they are not interested in dealing with Congenital Heart Defects; I guess it just isn’t a “growth industry.”

And that is why I am miffed. They have offices in the larger cities, but they also have some offices in smaller areas. It would be the perfect situation for them to hire a Pediatric Cardiologist and move him/her between these smaller offices, providing good health care to sick kids (and adults) in the rural parts of the state. But it seems that they are chasing the dollar bill. Maybe that heart on their sign should be green, not red.