Posts Tagged ‘blood’

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!

“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?

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.

Click-Clack!

December 29, 2008

As usual, I’m cold!

Forget the fact that it’s 60 degrees outside, I’m still cold. That’s a verb I can conjugate pretty easily: I am cold, I have been cold, I will continue to be cold… It happens because of my Cyanosis, I know. Add in the fact that I’m on a bloodthinner, and that just makes it worse.

There’s a lady at my church who came in one cold Sunday morning and decided to have a little fun by touching my cheek. I just smiled and touched her cheek! She jumped back about three feet and hasn’t tried that trick again!

Strong One, who blogs over at My Strong Medicine,  also has problems with hot/cold temperature extremes. He’s not cyanotic; some of the areas he works in are intentionally kept warmer (or cooler) than normal. The rapid temperature exchange bothered him, too, until a co-worker gave him the answer. Now he’s the Strong One who Doesn’t get too Cold or Hot.

I’ve got to go to town tomorrow to run some errands, and I intend to try his solution. Hopefully in a few days I’ll be able to give you a update and tell you if it is worth your time and money. UA is a bit more expensive, but Strong One says this is a good example of getting what you pay for.

Hopefully I won’t be walking around screaming “I must protect this house!” at the top of my lungs.

Basic Cardiology: How the Heart Works

December 14, 2008

95% – perhaps more – of Heart Moms and Dads have no medical training. You probably have a normal, non medical job, and never really thought about the heart until that fateful day when a doctor sat you down and said “We think there could be a problem with your child’s heart…”

If you want to try to stay one step ahead of a Congenital Heart Defect, you’d better learn all you can about a complex organ in a very short time. It can difficult, especially when you are under pressure – how many times have Heart Parents asked their doctor to hold on just a moment and explain what he’s saying? You’d be surprised at how much heart parents without medical backgrounds know about the human heart, but when you are trying to learn so much as rapidly as possible, you get swamped. It can feel as if you are trying to trying to drink from a fire hose.

So let’s slow down, and take a walk through a healthy human heart. First, here’s a nice diagram we can follow. If you have an engineering background, or a chart just makes more sense, you might want to look at this schematic. (You can click this chart and make it bigger!)

The heart is not a pump. It’s actually two pumps fused together – The right side pumps blood to the lungs and back; the left side of the heart pumps blood through the body. Blood that has already made the trip through the body flows through the Superior Vena Cava and the Inferior Vena Cava into the Right Atrium. This blood has little oxygen. The Atrium contracts, squeezing the blood through the Tricuspid Valve into the Right Ventricle. When the Right Ventricle contracts, the blood is squeezed through the Pulmonary Valve into the Pulmonary Artery, and then to the lungs.

There are two large blood vessels on top of the heart. The Aorta rises out of the Left Ventricle, loops downward and carries blood to the lower half of the body, which makes it look like an upside down U. The Pulmonary Artery splits just after it leaves the heart, taking blood to the right and left lung. This makes it look like a T, and it is tucked neatly into the arch created by the Aorta.

The Pulmonary Artery is also misnamed. Every artery in the body carries blood with a high oxygen content… except the Pulmonary Artery. Yes, it sounds strange, but it matches an older definition of arteries and veins: Arteries move blood away from the heart, veins move blood towards the heart.

In the lungs carbon dioxide is exchanged for oxygen and the blood returns to the heart, arriving in the Left Atrium. The left Atrium contracts, and blood flows through the Mitral Valve into the Left Ventricle. When the Left Ventricle contracts, blood flows through the Aortic Valve into the Aorta, and out into the body.

You’ll notice that while the Right Ventricle is larger, its heart wall is not as thick. The Right Ventricle is not a very strong pump, but that’s ok… all it has to do is move the blood to the lungs and back. The Left Ventricle is just a little smaller but the heart wall is thicker. It’s the heart’s main muscle, delivering a powerful squeeze to send blood throughout the entire body. This is one of the main reasons why right-side heart defects (like Tricuspid Atresia) have been survivable for some time while left-side defects are much more difficult. As I’ve mentioned before, Hypoplastic Left Heart Syndrome (HLHS) was almost 100% fatal until the mid 1980’s, and the oldest HLHS survivors are just reaching adulthood.

I hope this basic look at a heart has been helpful to you. Some of Funky Heart‘s readers learned all this long ago, and they may find it a little boring. But in the United States, someone  is born with a Congenital Heart Defect every fouteen minutes. There is always a need to review the basics!

2001: A Link Odyssey

November 7, 2008

Our first link was e-mailed to me by Madison’s mother, and it is an audio webcast of a program titled “Under-recognized Complications of Adult Congenital Heart Disease”. Be patient, the site takes a moment to load, but when it does you can choose to download the file as a MP3, listen to it as streaming audio, or request a transcript. This is worth hearing as preparation for when your Cardiac Kid grows up! After all, 90% of children having heart surgery today will survive to adulthood, so you might as well be ready!

In an e-mail I received earlier this week, Adult Congenital Heart Association (ACHA) President Amy Verstappen said that the “standard number” of new Congenital Heart Defects cases each year is 1 in 120. The number is based on birth incidence,  and since not every Heart Defect is caught at birth, that number may be a little low. But 1 in 120 is a good starting point.

Kevin, MD notes that trying to save your money could cost us all. Bummer!

Blood is like milk! Thankfully you can’t buy a gallon at the corner market; I’m sure Dracula is disappointed.

Your mother was right! And if you ask”How long?” the answer is “As long as it takes to sing a verse of Happy Birthday!”

Taking Plavix? CHECK YOUR OTHER DRUGS!

Wash your food before eating, or else you might have this problem. (That can’t happen… can it?)

North Dakota is a rural state with two seasons: Winter and July! But they have some of the best health care in the nation. How do they do it?

Dr. Rob reminds you that “You can cry in front of me.”

And we close with another gem from Dr. Rob, who describes a pediatric heart exam with wit and humor!

Brrr!

October 20, 2008

Dad-gummit, I hate cold weather!

After I got up this morning and ate breakfast, I checked the thermometer before going outside to walk. The temperature was 48.

Now I know some of you are gonna laugh and even might be saying “The guy is a WIMP!” I’ll admit to it. I do not like cold weather. Some of it is Cyanosis, but it never really hit me until after I started taking Warfarin.

Warfarin is an anticoagulant, which means it slows down the clotting agents in your blood. One of the side effects is a tendency to feel cooler, so when it starts getting cold, it takes me a couple of days to get used to it. My joints tend to creak and hurt for a day or so, so I just take it easy until I get used to the cooler weather. And actually, I don’t think that’s caused by my heart. A few years ago I fell flat on my back on a cement surface.  I hit the ground so hard my teeth rattled, and I’ve had little aches and pains when the weather turns cold since then. I think all my bones got rattled that day.

Back to Warfarin… Warfarin stands for the Wisconsin Alumni Research Foundation, who helped develop the drug, and you may know it better by the brand name: It is usually sold as Coumadin.

It was discovered in the 1920’s completely by accident. Cattle were suddenly dying… a small injury would cause a tremendous amount of bleeding, and the animal would bleed to death. Even stranger, a healthy cow would just suddenly fall over dead, and when they cut him open to try to find the problem, they discovered that the cow had massive internal bleeding. Finally, it was determined that all of the sick cows had eaten a certain type of sweet clover. Cows had been eating clover since there was clover, what was causing the problem?

It was determined that the problem wasn’t the clover itself, it was storing it. Clover that had been stored under the right conditions developed a mold. The mold itself wasn’t poisonous, but it prevented blood from clotting when eaten.

It took nearly 30 years for all this to be figured out, and at first, it was sold as rat poison. But then someone attempted suicide by ingesting the stuff, but they recovered. After this, studies were done to see if it could be used on humans as a blood thinner, and Dwight Eisenhower was one of the first patients to use it.

Warfarin can be some wicked stuff, and you have to be tested to make sure your dosage isn’t too high or too low. Usually your test is once a month, but if the dose has to be changed, you could need to get tested once a week until the new dose takes effect. Don’t panic, you probably aren’t going to cut your finger and bleed to death, but injuries have to be dealt with right then. More than once I’ve nicked myself while shaving and had to clean up a mess. (If you switch to a “three floating head” type of shaver, shaving cuts shouldn’t be a problem anymore.) Warfarin allows you to live an active healthy life, but the line has to be drawn somewhere. If you’re on a high school football team when you are prescribed the drug, you’ll almost certainly have to turn in your pads. You will bruise too easily. I carry an older cell phone that no one makes a holster any more, so it’s in my pocket. One of my personal signs of too much Warfarin is a bruise where that phone taps my leg as I walk. So you can see it is a powerful drug.

Vitamin K affects and is affected by Warfarin, so you have to be careful about your leafy greens. Don’t stop eating them, and don’t start eating more than you usually do. You just have to learn to be consistent about it. Try to have about the same amount at about the same time each week. If you usually have a salad for lunch on Mondays, Monday just may have to become a Salad For Lunch day.

Don’t be scared of the drug, but have respect for it. Millions of people take it everyday and they live great lives. There is no reason you can’t be one of them.

If it’s Thursday, it must be Blood Day

August 20, 2008

Tomorrow, as usual, I’m heading to town. I usually get groceries on Thursdays. And while I’m in town, I’ll swing by my local hospital and have my blood checked.

It can be a pain in the neck, (the arm, actually) but if you have a CHD, you come to think of it as “one of those things.” Into every life a little blood work will fall. My local hospital is a small, 130 bed facility, that can’t handle my heart problems. Don’t get me wrong, they are good at what they do. But 90% of the stuff they see is broken legs, infections, and requests for blood work. If I have a serious enough problem to require hospitalization, I probably won’t be a patient here.

The nurses all know me; they are a fun group of people. So I’ll be greeted by name when I walk into the lab. My usual tests are a CBC – Complete Blood Count, in which the level of nearly everything you can think of is measured. Red blood cells, white blood cells, hemoglobin, and a dozen other readings are measured. If something goes wrong in your body, it will usually show itself by changes in your blood chemistry, so this is why I have this test.

I also have a test the Lab techs refer to as “protime” — at least, that is what it sounds like. I’m take a blood thinning drug, and it is monitored monthly. If the Anticoagulation Center that my ACHD doc works with determines that I need to either increase or lower my dose of blood thinner, they will call me before the day is out. I have no idea why it is called a protime test, but if being a pro means getting a needle shoved up your arm, I’ll gladly remain an amateur! As i said, it is usually a monthly test, but lately I’ve been getting that checked every two weeks. I’m changing an unrelated medication, and the change causes the protime numbers to do weird things.

The results of a protime test are reported as the INR number. INR stands for International Normalization Ratio. In the past there was no set standard for reporting the results, a test at one lab may result in a score of 75, while a test at another may score a 2.6. So they put their heads together at the World Heath Organization and decided on a standard, the INR number.

Before they stick you the Lab Tech will ask you for your name and your birthday and compare it to the form the computer just printed for them. Occasionally I refuse, saying that I tell them this every time I come in but no one has sent me a birthday card yet. You can get away with that if the Lab isn’t too busy and you have a smile on your face. Occasionally on holidays I’ll throw another answer out there (“Paul Revere, July 4, 1776!”) but when the lab tech offered to bend me over the table and take the sample from my… hip, I figured I had just about worn that joke out.

When you have a Congenital Heart Defect, it’s not really the big things that bother you. It’s understood that I might need surgery in the future, but until then, what can I do? I exercise and try to stay in decent shape; and I’ll deal with that when (and if) the time comes. I’ve found that it’s the little things that really bug me. These blood tests take about half an hour, at the most. And I work it into my usual schedule so I don’t have to make a special trip. But it is just the idea of it… I’ll be doing this once a month forever. You always have to get that blood checked. You always watch your sodium and your liquids.

If you let it get to you it gets depressing. So you look at it as a step in accomplishing your goals. If I want to stick around long enough to meet that perfect woman, I’ll get that blood test. If I want to have the house and the picket fence, I’ll turn down that awesome dessert.

I do what I have to do to defeat the evil that is inside of me.

There are NO limits!

August 4, 2008

“Young man,” the Emergency Room doctor said, “You are in Congestive Heart Failure.” (CHF)

Oh…. shoot! That is not what I wanted to hear. The last time I was in CHF, I was 5 months old and on my way to Johns Hopkins Hospital. This time, I had recently gotten back from the best vacation of my life, and for a few moments I wondered if it would be my last vacation.

I had traveled by AMTRAK to four different cities, watching Minor League Baseball at each stop. At the first stop in Charleston, South Carolina, I got caught in a rainstorm while waiting for the transit bus and got soaked, and woke up the next morning feeling like I was getting a bad cold. I may actually have had a small cold, I don’t know, but as I look back I think that the Heart Failure was beginning to show itself. When I got home, I was still feeling draggy and tired, but I thought it was a result of my trip. Steve had just had too much fun! But when I went out to sweep the carport — something I had done countless times before — I was so tired that I had to stop and rest twice. That’s when I realized that something may be seriously wrong here.

So what exactly is Congestive Heart Failure? Your heart is losing its ability to efficiently pump blood. Imagine that you buy a rubber ball. You bounce that rubber ball all day long, every day, for years. And it always bounces just as high as it did on the day you bought it — that’s the way a heart is supposed to work. Now imagine that you have another rubber ball, and you bounce it just as much as you did the first one. But after some time passes your ball begins to wear out, and it won’t bounce as well as it did when it was new — that’s a heart going through heart failure.

If you get a diagnosis of CHF, naturally you want to know everything about it. Most people are going to head for their computer and Google it. You’ll read that the average person with heart failure passes five years after the diagnosis. Don’t believe that!

That figure takes into account EVERYONE… the elderly who develop CHF late in life, people who are sick with something else and then go into CHF, and the small number of people who read “5 years” and decide their life is over. It doesn’t have to apply to you.

Your doctor will probably put you on a low sodium, low liquid diet. The diet is very simple but extremely difficult, all at the same time. My personal limits are 2000 milliliters of liquid a day, and 2000 milligrams of sodium per day.

The liquid is the easy part. 2000 milliliters is two liters, and you’ve seen a two liter bottle of your favorite soft drink. You can’t drink any more than that 2 liter bottle per day. That’s not really difficult. Summer months will tempt you to go over your limit, but you learn to space it out and little tricks such as popping an ice cube into your mouth.

2000 Milligrams of Sodium is the hard part. How much is that? Take two individual serving size envelopes of Sweet ‘N’ Low and pour the contents onto the table. That’s 2000 milligrams.

The first thing to do to get down to 2000 milligrams is take the salt shaker off the table. Get it away from the stove, also. No longer do you cook with it, nor do you wave the salt shaker over your food.

The next step is pretty intensive label reading. The first time I went grocery shopping after being put on the diet, it took an hour and a half longer than usual, and all that time was reading labels. Prepared meats (in general) are no longer on your list, and it seems that soups are loaded with sodium. (Soup is a double whammy; it counts against your sodium limit AND your liquid limit. So be careful with soups.)

Every morning, as soon as your feet hit the floor, you do two things: You go to the bathroom, and then you weigh yourself. Try not to wear too many clothes when you weigh and also try to wear about the same thing each time. Record your weight and keep track of it. Most Cardiologist tell you that if you gain three pounds or more in a 24 hour period and you don’t have a good explanation for it (Overindulged at a birthday party, for example) then you are having problems. Most of them ask that you call the office; usually they’ll just tell you to take an extra diuretic to get you through the day. But repeated weight gain is a good indicator of a problem.

The next step you can take is exercise. Get a good pair of shoes, a pedometer, and start walking. Can’t walk far? No problem, start small and ease into it. The first day that I walked I could barely make it half a mile; now I’m up to three miles, and could probably go further. I’m “training” for a trip to Boulder, Colorado next year; my hometown is about 200 feet above sea level. Boulder is at about 6,000 feet. I want to be able to breathe comfortably when I go out there, so I’m really trying to push myself.

Another thing is your attitude. A small percentage of people hear the dreaded phrase “You have CHF” and they quit. “Woe is me!”, they say, and they roll into a little ball and quit participating in life, and they are not long for this world. You need to have the attitude that this is just one of many challenges in your life. Do things! Go places! Even when you don’t feel 100%, go as far as you can and do as much as possible. Never give in!

Remember, I am not a medical professional, but do you remember at the beginning of this story when that doctor told me that I was in Congestive Heart Failure? That was in the spring of 2002! I weighed 206 pounds back then. Today I weigh 158, and other than this hernia (See previous post) I feel like a million bucks! So five years is not a limit!