Surviving After A DVT, Stroke Or Clotting Disorder
Are You A DVT, Stroke Or Clotting Disorder Survivor? I Am!
We do survive! There are thousands of us who have survived a DVT, stroke, or heart attack, and ended up being diagnosed with a clotting disorder. The one I have is called APS (Antiphospholipid Antibody Syndrome). I am positive for the anticardiolipin, lupus anticoagulant, and 2-betaglycoprotein antibodies.
Guess what? My first DVT was in 2002, and here I am talking about it!! In fact, I have had FOUR DVT's (that we know of), I had a stroke in my retinal artery in 2008, causing the loss of half the sight in my right eye, and I hit the "trifecta" in 2011 when I had a mild suspected heart attack. Well, that all sounds pretty scary, come to think about it! But yet, here I am! So that's my first and most important message to you - we can, and do survive.
I am going to give you some advice here based on my experience and taught to me by medical professionals. However that being said, I am NOT a medical professional, so please consult yours before making any changes in your health care!
I am here to tell you there IS life after DVT or the other nasties, and there are ways to learn to co-exist with the little monsters. And there are people out there to support YOU. People like me.
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Some Things That Happen After You Have A Blood Clot
A blood clot inevitably changes your life... a lot, or a little; for a short time, or forever. It just depends! But everybody experiences the same things right ar first, so we'll talk about some common stuff that happens.
If you are placed on anticoagulant therapy, usually Warfarin or Coumadin, the first thing you will learn is "What is a PT/INR?" You will hear doctors and nurses using that term a lot. The test, commonly referred to as a PT, a Protime, or an INR, measures the anticoagulation level of your blood. Why? If your blood is too thick, you will be more at risk of another clot. If it is too thin, you're more in danger of having a bleed. They will assign you a target range they want you to stay within. If your blood does not fall in the range, they will adjust your dose of anticoagulant up or down to make it fall in the range. Sometimes this happens right away; other times it can mean weekly or even more frequent blood testing until your level stabilizes where they want it. It can be an aggravating process; might as well get used to it, because there's no other way to find out the information. And not to be overly dramatic, but your INR can be a matter of life and death. If your level goes way too high, say around 6 and up, they will probably give you a medication to reverse the anticoagulation and get you back in safe range. (This would be a time to especially avoid sharp objects!!) If it's way too low, obviously you could get a clot, which can be life threatening. SO it is not a test you can ignore safely.
Another thing you may experience is the joy of compression stockings. They squeeze your legs, helping prevent clots. I've used a lot of them. The best I have found that would be nice enough to wear with a dress are called Mediven, and they are the most comfortable I have found. They have about a 3" wide band with silicone bubbles and they stay in place and don't hurt. The ones with narrow bands will hurt and move around or roll down and pinch. OW. Now if you're hanging around at home, or appearance isn't a huge issue, there are some very comfy things called EdemaWear. They come in all sizes and are a white stretchy mesh. They may even come in other colors, not sure on that. To survive the compression stockings and be able to comply with wearing them, you need a "sock putter-onner-thingy." Mine looks like a big metal paper clip about a foot high. It's called a "Butler." I'll try to snag a photo of it and put it up here. You put the sock on the device, then pop your foot into it. Cake. Without the helper device: NOT cake. Major frustration, even discomfort or outright pain. I wouldn't advise it.
You're likely to experience pain, swelling, and other weird feelings in your leg where the DVT is. My best advice - wear the stockings, keep your leg elevated to reduce swelling, take you prescribed meds, AND ask for help with pain if you need it. I have had help from warm (not hot) baths, laying a cold wet towel on my legs, etc. When they would really scream, I'd get up and walk around a bit. OR, lay down on the carpet or your bed, scootch your rear up as close to the wall as possible, and rest your legs vertical against the wall for say 15-20 minutes or more. It helps.
What's all the fuss over green leafy vegetables? They can really be confusing about that. Here's the thing - yes you CAN still eat broccoli, spinach, whatever - but you have to be consistent about it. In other words, if you normally never eat broccoli and suddenly you get a craving and eat an entire bunch of the stuff, that's what they don't want you to do. Eat your normal amount of dark leafy vegetables and you'll be fine. Your anticoagulant will be prescribed on the basis of your INR and if you eat consistently, your INR should stay consistent.
Effect of Other Drugs On Your INR
Beware that if you take a new antibiotic, it can really affect your INR. So your doctor should check your INR after a little while on the antibiotic (or any other new drugs known to affect INR) to make sure you are ok.
Going To The Pharmacy
I really love my pharmacy because they keep all my medications on file along with my medical conditions. So if I go to take a new drug and it would interact badly with say, my coumadin, it will throw a red flag and they'll figure out what to do. I really recommend telling your pharmacist that you have a clotting condition. I even more highly recommend keeping all your prescriptions at one place because it's a safeguard against errors.
New Clot Symptoms
Sometimes you will feel that certain pain in your leg and wonder, is there another clot in there? If you are wondering, you need an ultrasound. That is the advice a very good hematologist gave me years ago. The only way to rule out a clot is ultrasound. He told me I would feel like I was crying wolf sometimes - too bad. Get checked anyway.
A Thought On Protocols
There are established protocols that doctors use when a person has a DVT. If they can find a mitigating factor (like birth control pills, other hormones, lots of other reasons) that could have caused the clot, they might put you on a protocol where you take blood thinners for 6 months then take you off them. Theory being they've removed the causing factor, and you're safe. Well, that's precisely what my internist did when I had my first DVT while on hormone replacement. Removed the hormone replacement, removed the risk factor, done. Well, I had a nagging uncertainty about that. I took myself to a vascular doctor and he ran some tests on my blood. Oops! I was diagnosed with APS (antiphospholipid syndrome) and not one but three antibodies. I was a major clot risk, and for life. So much for that protocol. SO if you are at all uncomfortable, ask for clotting studies to be done. I used to run a really big online support group before MSN shut down its groups. You would not believe the number of people who re-clot after they get taken off blood thinners. I just encourage everyone to ask for the clotting studies. It's so simple. If you're fine, you can forget about it. If you aren't, you will have a plan of attack! Just my two cents worth...
My Philosophy On The Scary Stuff
"You have been given a sneak preview of how you COULD HAVE DIED, not of how you WILL die!!" ––Sheila
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What's Your Biggest Concern About DVT/Stroke Survival?
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The Big Elephant In The Room Wants To Be Fed. So Starve Him.
Welcome back to the "Real World!" So here you are, out of the hospital and back at home... you've just had a visit from the Big Scary Monster, you saw the shadow of the Grim Reaper walk by your hospital door... and keep going. Scary stuff, huh? Now you're home and you don't know quite what to think or feel. You just can't shake the feeling of how very lucky you are and what a close call you had. Your friends and family look at you like some kind of a ghost. They may ask you questions about tunnels and white lights. How close WAS it, anyway? "Did you actually DIE?" they may ask. "What was it LIKE?" "Were you SCARED?" You are now officially a source of curiosity.
Your spouse is making calls to update your life insurance policy and talking about pre-need arrangements for the first time. And is NOT talking about that retirement cabin anymore. You drive to the grocery store (wondering if it is safe to do so - you know, what if...) and you can't believe you're doing something so trivial as shopping when you have this newfound precious value to every single minute you breathe! I know this may all sound silly to the uninitiated, but anyone who's had it happen knows exactly what I'm talking about!
I know, because it happened to me in 2002 when I had a massive DVT (deep vein thrombosis) in my right leg. My life changed forever, in an instant. Boom. And no, I didn't die, see a tunnel or a white light. Yes, I was scared. I had the incomparable experience of being told by a doctor that if I moved the wrong way anytime in the next 4-6 weeks, the clot could dislodge, go straight to my lung, and in about 30 seconds, BOOM. That's close enough for me. Can you say, "FEAR?"
Is It Really A "Charleyhorse?"
Or something much more sinister?
The single thing I want people most to know by reading this lens is NOT to ignore any cramping type pains in their calf or leg!! Or sudden shortness of breath.
Most people visit an average of THREE health professionals before they are correctly diagnosed with a DVT! This is largely because the medical literature promotes the idea that a person with a DVT will come in with a red, hot and swollen leg. In my case, I had NONE of these three signs! My leg looked perfectly normal; it just HURT. My diagnosis took over 10 days and the only reason I got it was that I was persistent and refused to be ignored. I was told by the first two medical folks to put heat on it - it had to be a muscle cramp. When it got to the point I couldn't bear to walk on the leg, I started yapping loudly!
A DVT can start in your leg (or less often elsewhere) and travel to your lungs. It is a life threatening condition!! More people die every year from DVT than from breast cancer!
Please - if you have cramping in your leg for no apparent reason (you didn't hurt yourself, overexercise, etc.) insist on being evaluated. The testing is quite simple - usually a blood test and an ultrasound of your leg. It can save your life!
How Are You Coping After A DVT Or Stroke?
I'm scared to death something will happen again. My comments...
What Causes DVT?
Are You At Risk?
Sometimes when you develop a blood clot, it can be because your body is in a hypercoagulable state (meaning your blood is clotting too easily). This can be caused by taking hormones (like birth control pills or estrogen replacement (which happened to me), by many other medications, and by inherited or acquired clotting disorders (such as I also learned I have).
You can also develop a DVT from situations where you are forced into extreme inactivity (such as after a surgery or on a long airplane flight). That is why it is very important to get up and walk every hour when you are traveling. It's also why, if you have immobilizing surgery, you will probably wake up with devices on your legs that squeeze them automatically to promote circulation.
There are many acquired and hereditary clotting disorders. The one I have is called Antiphospholipid Antibody Syndrome (APS). It causes your body to be in a constant hypercoagulable state. The treatment can include drugs like blood thinners, heparin, and other drugs that affect platelet function.
In addition to DVT, these clotting disorders can cause repetitive miscarriages, strokes, and symptoms affecting virtually any part of the body.
As things stand right now, you probably won't be tested for clotting factors unless you have experienced a clotting event such as a stroke, DVT, heart attack, or many repetitive miscarriages. Hopefully in the future clotting function could be tested as routine screening in a physical examination - my personal belief is that it would save many lives! Knowledge is, after all, power.
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Have You Had A DVT, Stroke or Heart Attack?
Don't Get Scared Of "IT" Now!
It doesn't much matter whether you had a near-fatal car accident (I had one of those, too, several years back!), survived breast cancer, or had a blood clot. Since you have survived "IT," the great question eventually will arise - "What now?" Well, you'll probably have to have "The Big Meeting" with your doctor(s) to determine how to make "IT" - whatever your condition is - not happen again! You may be told you have to have new and sometimes bizarre medications or treatments for the rest of your life. Once you decide these strategies with your doctor, and you're doing all the good things the doc told you to do - you have done all you can do medically. That's fine - but how do you survive the fear?
The truth is, I'm telling you that you have NO reason to be afraid! Why? You have been given a sneak preview of how you COULD HAVE DIED, not of how you WILL die!! I know you can't come to this level of "comfort" instantly - I know I sound really offhand about such a serious topic! But it has taken me three years, one month and about 10 days and I still have to remind myself of this now and then.
It would be really interesting to read a study on a bunch of people who had a DVT/PE like I did and survived, and what eventually did them in! At least I think it would be... I am betting many of them got hit by a bus, or died in a traffic accident, or got some wicked cancer, or died from some other exotic thing.
Bottom line, none of us gets out of this game alive. We all wake up every morning (at least I do) and say "Wow cool - here I am again, another day!!" and we brush our teeth and get on with this business of living. And that, my dear reader, is exactly what you have to do. Every day you have to eat, sleep, work, love.... nothing stops.
The dark spectre of recurrence of "IT" will always be in the back of your mind. But you CAN control how often you allow it to poke its ugly head out! I probably think of it at least once a day - but I only allow myself one fleeting moment to think about it. It doesn't deserve more than that!
"BE PREPARED" - Not Just The Boy Scout Motto!
Do the "right things" (if and only if it would make you feel better) - like deciding who will take care of your kids, the pets, who gets what jewelry, the house, making a living will and a final will, planning the music to play at your funeral visitation. Write or tape record letters to everyone you love and seal them in a "to be opened at the time of my death" envelope in a safe deposit. Do whatever makes YOU feel prepared. (Be as "morbid" as you need to - but be careful about sharing it with friends and family. They may not appreciate your newfound enthusiasm and may say things like "Don't talk like that!") Then... once you are finished, once again... you have done all you can do. Forget about it, you're prepared for the worst, you've done your planning.
The Relative Unimportance of Most Stuff And The Value of "Life-Changing Things"
After my experience, when people in my family would trip out over small aggravations like spilling something on the carpet, I couldn't believe what a big deal they were making over it! "This is so... nothing" became one of my frequent phrases. That's equal to the phrase, "relative unimportance." Most things have it to some degree. Unless, that is, they are what I call "life changing things."
Letting a lot of this "minor baggage" go has resulted in a lot more time being available for me to do what I call "life changing things." Things like spending time with friends or writing this this, for example. If whatever it is has potential to change my or someone else's life in a good way, it goes to the "A" list.
I'm not going to say that your life is ever going to be easy, or that you'll never spend a frantic night waiting every second for "IT" to hit again. I have spent many such nights and I'm sure there will be a few more. But by developing these strategies for dealing with it, I have more peace in general, am more productive, less depressed about it all, and will have more of a chance to leave a good trail behind me when I do make my permanent exit!
I got the sad news this evening that a lady whom I admire and respect very much has crossed to the other side, a victim of advanced ovarian cancer. Her name is Lori Bush. She is a renowned dog portrait artist and she left such a legacy of happiness behind her to every life she touched. What a goal to aspire to!
My Strategies Coping With Long, Lonely, Scary Nights
Remind Yourself Of What You Believe
I remind myself of my personal beliefs (and you remind yourself of yours, whatever they may be). I believe that every one of us is here for at least one big reason, and about a million interactions with others that are supposed to happen. I believe there are a lot of things I am supposed to get done. In other words, I believe the universe has a plan and I am part of it. I also believe in the old saying "you won't go until your time comes" and that comforts me. I don't believe I'll leave one minute before I am predestined to.
Distraction-Your Best Friend!
At a time when you are not upset or worried, make a list of the things you really enjoy doing that seem to make time disappear. For me it is things like crocheting, reading, watching a great movie or talking with a friend. Or grooming a Schnauzer (I have six here right now so there are always plenty of dogs to groom at any given time!) The applicable song here is "Whatever Gets You Through The Night Is All Right." And now you know how old I am:)
Limit Your Worry Time
As we talked about above, are you over on your "worry minutes" for today" CAN you focus your mind on something else? Is it possible? Do you feel like trying? Sometimes it's just too overwhelming and you can not stop thinking about "IT." At times like that, resort to the following strategies:
1) Draw your worry in a picture. Almost all our worries come in "loops." Eventually you will come back to the same place/thing you were worrying about first. You will keep traveling in a big circle of worry. So - draw it out! Get a big piece of paper and make it real!
Some Helpful Information Links...
- MedicAlert Foundation
If you're on blood thinners, you need a Medic Alert bracelet!
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