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About Michy’s CTEPH & CHF

CTEPH is the acronym for Chronic Thromboembolic Pulmonary Hypertension. To break this down, I’ll simple tell you what this means: Chronic means that it’s long-standing or lasting and oftentimes means it’s worsening too. Thromboembolic has to do with blood clots moving in the body, usually from the legs through deep vein thrombosis (blood clots in the big, deep veins of the legs) and moving through the body to the heart and/or lungs. This often results in death, especially when the clots are large and they lodge in the valves of the heart, blocking blood flow and causing the heart to arrest. Those who are lucky enough to survive a pulmonary embolism will end up with the clots going through the heart into the chest, the lungs, where they lodge against the side of the lungs, sometimes causing infarction (muscle death–no infarction doesn’t means heart attack–but one type of a heart attack is a heart infarction), which is said to be one of the most painful things a person can experience. If you ever watched HOUSE on TV, the thing that caused his leg to be messed up was an infarction in his leg. Muscle death is bad, bad, bad. Now, for the last part, the pulmonary hypertension part, I’ll have to go a bit more in depth.

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He’s the pulmonologist, not the endo… not sure why, but hopefully I’m not breathing through my thyroid gland now. That would sort of suck!

 

PULMONARY HYPERTENSION

I’m sure you’ve heard of hypertension before, which is simply high blood pressure. It can be deadly in the veins and arteries, silently killing a person by causing subtle changes in the body to the veins, arteries and heart. Pulmonary hypertension though is quite different. It’s still high blood pressure, but it’s specifically located in one place only–the pulmonary artery. The pulmonary artery is the one that basically connects the lungs and the heart, where the blood travels to be oxygenated and then out on into the body. Without oxygen, organs die. Without oxygen, the body decomposes. Without oxygen, bad things happen. Pulmonary hypertension causes a person to do something call desaturation, which basically means the body isn’t getting enough oxygen in the blood to supply the organs what they need to function. These organs, my friends, include the kidneys, liver, stomach, digestive organs, and yes, absolutely, even the brain.

Long-term low oxygenation of the body can lead to a host of problems and long-term low oxygen to the brain leads to foggy thinking, memory loss, loss of cognitive function and so much more. Low oxygen to the body causes organs to fail before they normally would. Nothing works right.

But that’s just part of the problem.

There are several types of pulmonary hypertension. All types of people can get pulmonary hypertension. It happens to the young, the elderly, the thin, the fat, the tall, the short, doesn’t discriminate much. There are some risk factors that make one more likely to have it, but ultimately, there’s nothing that can be done to prevent it, and they aren’t entirely sure why it happens sometimes. It’s rare, and because of that, there isn’t a lot of research and dollars going into finding a cure for it or even researching why it’s happening. It does seem to be somewhat under diagnosed, and that’s a shame, because for certain types, catching it before there is any damage to the body means leading a relatively normal (with treatment and modification) life.

CTEPH

The type I have, CTEPH, is the rarest of the types of Pulmonary Hypertension, and it is also considered either the best or the worst kind you can have. It’s the best, because there is a potential cure for my type of PH and it’s the worst because, if one is not eligible for that cure, then CTEPH is a terminal disease. That is, if I can’t have the cure surgery or if the cure surgery doesn’t work, this disease is going to kill me. Average lifespan, with treatment and early intervention, is about 6-10 years from diagnosis, and without proper treatment or without early intervention, is as few as three years from diagnosis. I’m currently one year from CTEPH diagnosis and almost two years from PH diagnosis, but mine was caught early and I’ve been treated from the beginning. So we’re hopeful.

CTEPH is really the only type of pulmonary hypertension they know the cause for, though they don’t necessarily know what causes the cause. That is, CTEPH is caused by the thromboemolisms traveling through the body, into the heart, perhaps damaging the heart (mine did take a hit, more on that later), and then, instead of going all the way through the pulmonary artery, the clots lodge in the artery, blocking the free flow of blood and oxygen and stuff from the heart to the lungs. This causes pulmonary pressure to increase, to try to help things flow, which results in breathlessness, desaturation of oxygen levels and pressure back onto the heart. That pressure back onto the heart then causes the heart to try to beat stronger, faster and better to get the blood and oxygen flowing properly, which eventually causes enlargement of the right heart chamber, which eventually leads to heart failure. In fact, from what I’ve read, people really don’t die from pulmonary hypertension, but rather, they die because the heart simple can’t keep up any more.

CONGESTIVE AND DIASTOLIC HEART FAILURE

For me, the problem is compounded: the clots that passed through my heart didn’t kill me, and I’m very thankful for that, but they did dilate my heart valves, and that has caused a flap to not seal properly and a valve to regurgitate or leak. Neither of these are good things. I have another rare condition because of this, known as diastolic heart failure, which is causing congestive heart failure, along with the pulmonary hypertension that will eventually damage the right side of my heart too.

Fortunately for me, my heart is still strong and mostly healthy. We caught this early and I am still considered quite young when it was diagnosed (I was 40 at the time of diagnosis, and PH usually hits people in their 60s, not always, but more often). My doctor told me that my heart is strong, but it’s not resting between beats. That means it’s working harder than it has to. We’re doing everything we can now to protect the heart. Ultimately, protecting that heart is what is going to keep me alive the longest.

To that end, I take medications to combat the heart failure: Lasix, 100mg twice per day to keep the fluid accumulation down. This is a big one for me, because the fluid can build up quickly if I’m not watching it. I have to limit my fluid intake to 1 1/2 liters of fluid total per day. Think about that–it’s not a lot. It’s essentially a little over four cans of soda per day, at least, in size. I don’t drink soda any more, because I want good stuff in my body when I’m limited to so little. So I drink mineral enhanced water or ice water, real cranberry juice, or a type of electrolyte drink with magnesium, potassium and and such in it for my 1 1/2 liters per day.

THE DRUGS

Because of the high doses of Lasix, I have to take potassium, 40meq per day. Which actually is quite a lot compared to what most take, but when I only took 20meq, I was always low. Potassium is essential to heart function.

I take metoprolol, which some people take as a blood pressure medication. I actually do not have high blood pressure, but because my heart doesn’t rest between beats, when I stand up and move around, my heart rate goes through the roof when the pulmonary pressure pushes back on it. So to fight that heart rate increase, I take metoprolol, to reduce the heart rate. This one medication has made me feel better than any medication I’ve taken. When my heart rate stays in the normal ranges, I can breathe better, feel better, be more active. This one has helped a lot.

I take enalapril, another blood pressure medication. It’s a very low dosage. My ejection fraction on my heart is good, but they are worried about the PH remodeling the veins around the heart/lungs something or another… I forget right now, but the point is, I take the enalapril in order to keep that remodeling from happening.

Because I usually have normal to low blood pressure, though, the two blood pressure meds I have to take to help my heart be healthy usually result in my blood pressure being too low, so I have to prop up at at least at a 35 degree angle at night, or else I drop into the 80/40 ranges on BP, and that makes me feel just rotten. I also have to sort of stay active and moving some, so I’m always stretching and doing isometrics.. When blood pressure is super low, I find it’s harder for my body to remove the fluid from my legs and abdomen and flush it out, so I’m always doing leg stretches and isometrics and stretching. I’m considering trying some very simple beginner’s yoga too. When my back (which has severe scoliosis and disc degeneration–yes, I’m a mess!) can tolerate it, I walk for a few minutes on the treadmill. It’s safer for me than walking anywhere else right now, because I definitely AM a fall risk, having falling three or four times in the past year, once quite serious. The treadmill is padded, has an auto-shut-off and has arm and hand rails I can use for support. I don’t stay on long, but I do what I can.

I take prednisone for an autoimmune response (adrenal insufficiency), hashimoto’s autoimmune thyroiditis as well, and for the pain in my back, as well as being adrenal insufficient. We’re not sure why I’m adrenal insufficient, but the docs don’t seem to care about that right now, with all the other stuff going on, so they give me the prednisone, it takes cares of more than one thing, and everyone is happy. I have to watch my levels, though, because too little and I get really sick and too much I get fluid overload and get really sick.

I take Armour Thyroid, because I am hypothyroid. We suspect that a medication I took in 2007 in the hospital actually destroyed my thyroid, because best we can tell, it doesn’t work at all any more. If you want to know more about Armour Thyroid, the dessicated thyroid, you need to read Stop the Thyroid Madness. My world changed drastically when I was finally able to convince my endocronologist to switch me to the Armour and I will never, ever, ever go back now. If you or someone you know or love has hypothyroidism, please read the Stop the Thyroid Madness website, learn about Armour and natural dessicated thyroid supplements, about adrenal stress and more. This will change your life if you do. I promise. Myself, my best friend and my son are all hypothyroid–and the Armour is making a huge difference, when levothyroxin did nothing.

I take a baby aspirin every morning. I’ve never asked why, only do it because my doctor prescribed it. Perhaps I should ask why.

I take coumadin/warfarin and I will for the rest of my life. This drug is a ‘blood thinner’, but in reality, it doesn’t thin the blood. It actually works on vitamin K to prevent blood from clotting, or at least, it’s supposed to. I have to have PT/INR tests to ensure the blood clotting time is in the right limits. It was weekly, but now it’s once per month. Eventually, it’ll be once every three months, but I will be on coumadin for the rest of my life. My target range is 2.5-3.5, which is a little higher than most, but I’ve had additional pulmonary embolisms (at least three other rounds of clots were caught thrown while on treatment in therapeutic ranges) while on coumadin, so they want me a little higher to try to prevent that.

I take a Ubiqunol/CoQ10 supplement daily. This is for heart health and electrical heart energy. Hey, Dr. Oz says it’s good, but mostly, the book: Success with Heart Failure: Help and Hope for Those with Congestive Heart Failure, also said it was a good idea and it doesn’t interact with any of my other meds, so I figured, Why not?

I take gabapentin for nerve pain, caused by my back. This isn’t really part of my normal meds for the PH, so those of you without this nerve issue won’t probably have heard of this. For those who know the brand name, it’s Neurontin. It’s amazing how well it works on sciatic pain for me. So when sciatica acts up, I take gabapentin for a few days, and it goes away until I can stretch it out and get rid of the pain on my own.

This list is drastically scaled down from last year, when I had five additional medications on the list three or four times more per day, so I am very happy to see that. I was able to get off some medications, which makes a huge difference in my pocketbook and in my health, I think. Even so, the medications cost me about $200 per month, every month, without fail.

OXYGEN, THE BREATH OF LIFE

In addition, I’m on supplemental oxygen–I wear an oxygen canula, usually 24/7, but some days on a good day I can take it off for a few hours without desatting. Some days, I can’t. That’s okay–I feel better wearing it, so I don’t mind it so much. Cleansing, good, oxygen through the lungs. I do breathing exercises in the morning with my meditation. The concentrator costs me to rent. They also say I have sleep apnea, but we’re having issues with the CPAP–so I’m sure you’ll read about my struggles with that on the blog too. The oxygen setup isn’t cheap, and for portable oxygen, it’s worse than the concentrator at home, but it makes such a huge difference for me, so I try not to complain too much. It makes getting out and about hard to do though, but we’re working on a setup that will allow me some more portability. Once I have Medicare kick in, I should be able to get some portable liquid oxygen for the portable rebreathing unit a friend of mine on FB was kind enough to donate to me. Bless her!

ENOUGH OF THIS MEDICAL STUFF!

I think that’s all for now. It’ll give you a general idea of what CTEPH is for me and what we’re currently doing medical-wise to treat this condition. But I would be remiss if I didn’t let you know I’m doing everything in my power to get better, to get well, to find a cure for this for me–or if no cure, a miracle that makes it all just go away. I would have no problems at all if the universe wanted to heal me and have the docs simply shake their head and wonder if maybe they diagnosed me wrong all along.

To that end, I’m seeking, researching, studying and trying holistic, meditative and EFT tapping for healing as well. I’m working on a nutritional basis, herbal and natural medicinal basis, and visualization. I’m looking into Eastern philosophy and medicine, while adding in the proper but only necessary Western medicine. It’s going to be a long road, but the fact the road is long means I’ll be alive and kicking for it, and as someone living with a terminal illness, alive is always a good thing.

 

 

 

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