Thursday, October 11, 2012
Status Update: Oct. 11, 2012 (Blood Thinner Protocol)
Hello everyone. Today's topic is blood clots and blood thinner protocol and here's why...
When you're a 'normal' person with a backache/pain you assume you have a strained muscle. When you're a 'normal' person with a cough you assume you have a cold. When you're a cancer-survivor with these things, you might have a strained muscle, and you might have a cold, but you and your doctors start thinking about how those symptoms, singly or combined, might mean something else. This is what happened to me during September.
I wrote about the back-pain incident in a prior post - where we went from assuming a pulled muscle to speculating about kidney stones, to speculating about PE's (pulmonary embolisms) because some of the symptoms of the first could translate to the second. Kidney stones were eliminated (my kidney numbers looked great) and that lead to speculation about the potential for PE's, because they share some common symptoms and I've had them before. Summarizing that post - they couldn't get a yes/no answer to PE's because my veins wouldn't cooperate with a power-push for a CT scan, but the back-up nuclear medicine test (VQ) was negative so they ruled them out, leaving us back where we started, with a strained back muscle.
Being a cancer survivor means things take on layers of meaning, and you have to consider them all, not just the first, obvious thing. It can be a pain in the butt.
Okay, so now skip forward a couple of weeks, to when I started to have some symptoms of a cold. This cold was sort of severe in its symptoms (dizziness, shortness of breath, strong cough which resulted in a few abdominal aches and pains). Just a strong cold for a 'normal' person, especially one used to Arizona weather and now going through the Minnesota fall, but not to a cancer survivor, especially not if they experience chest pains, like I did one day (unfortunately the day of my niece's wedding!). It was a Sat. and I went into the ER and they immediately brought me in and started an EKG in case I was having a heart attack. The heaviness in my chest had lasted no more than an hour, and the EKG was normal, but it was still enough to set off a new round of tests, since PE's can cause chest pain.
The docs admitted me to the hospital, and sent me for yet another CT scan. This time, after a few tries, they got a good vein for the power injection of the contrast, however during the injection (20 cc's in 4-5 seconds) the line slipped out and the contrast infiltrated my arm rather than the vein, so no CT scan could be run - again! So they sent me for another VQ test - again!
Here's the problem with the VQ test. While the CT test, when run with contrast, can give a pretty definitive Yes/No answer to the PE question, the VQ test can only give a probability - low/intermediate/high, etc. There's no certainty to the test. The first VQ test had been negative, and even though the D-Dimer blood test had been slightly elevated (0.53 over the 0.49 high limit for normal) they concluded the overall result was negative. The same two tests a few weeks later were 0.65 for D-Dimer (still not really high, but slightly higher than before) and Low on the VQ. I asked the doc three questions (which I already knew the answer to):
1. What's the treatment if you diagnose PE's? Ans: Blood thinner (Cumaden/Warfarin).
2. What's the risk of not using blood thinners if you have a PE? Ans: Bad - PE's can kill people if left untreated.
3. What's the risk of using blood thinners if you don't have a PE? Ans: Low - a potential for bleeding if you're not careful.
I told the doc that since they couldn't definitely say whether I had a PE or not, I would by far prefer they assume I did and treat for it, rather than assume I didn't and risk the consequences. The docs came to the same conclusion, and using both the minor D-Dimer and VQ test results, gave a diagnoses of 'Intermediate chance of PE' so they could start me on the blood thinner protocol. This is a great example of how fairly common symptoms for a 'normal' person take on bigger impact for a cancer survivor. We just cover more bases in general, on every little thing. Most of the time it's probably over-kill, but you don't want to miss that one time when it isn't.
At the end of this post, I'm going to include the details of the blood thinner protocol for those interested, but there's still a bit more of the diagnosis labyrinth that occurred as a result of this (alleged) cold.
After the second attempted CT scan, the blood work taken in the hospital that night showed elevated liver enzymes (there are several numbers, but two, which were supposed to be below 40, were in the mid-300's! The last time those numbers had been tested was in June, and they were completely normal. Since then, they've retested my liver enzyme numbers twice; the first time they were either in the normal range or just above, and the second time they were all normal. This set off a round of 'what happened between June and September?' questions.
I couldn't think of anything at first, but then I remembered a plumbing problem that had occurred in August, and googled mold and it's health impact. The info was interesting - the symptoms ranged from low (allergy-like) for healthy (i.e. 'normal') people, to severe for people with sensitive or compromised immune systems. Let's count off who falls into this category: young children, old people, people with autoimmune disorders, and people who have had a bone-marrow or stem-cell transplant and therefore have a new immune system - like young children. For these people the problems can be more severe, up to and including liver damage.
So yup, you guessed it, two additional appointments are made for me; an allergist to test for mold, and a GI specialist to scrutinize the subsequent ultrasound done on my liver. My personal feeling is that the high reading came from my system having to metabolize the contrast that infiltrated my arm, rather than going in the vein, during the failed CT scan (since the blood draw took place a few hours after the test), but by now you know the drill - the numbers are normal and that would probably be the end of it for a 'normal' patient, but not for a cancer survivor.
So, GI specialist in November, and Allergist yesterday. The Allergist ran both a pulmonary function diagnostic test and the normal allergy scratch tests. The results? Good pulmonary function, and no allergies. The doc's thoughts:
1. I could have had a virus (virus cause colds!) - often the cough outlasts the actual virus by some weeks.
2. I could have on-going acid reflux problems - 20% of adults who do have only a cough as a symptom.
I told her the cough seemed to be diminishing, so she said we'd wait a few weeks to see if it went away. If it did, the odds were I simply had a viral infection - a cold. If not the acid-reflux option would be investigated, and luckily I already had a scheduled appt. set up with the GI for Nov., so the timing was perfect.
As of today, my cough is just about gone, I'm going to guess the reality is actually #1 - I had a cold virus! Look at all that transpired for (hopefully) such a simple thing: Two attempted CT scans, two VQ nuclear medicine scans, two chest x-rays, an EKG, a Doppler analysis, a night in the hospital, an ultrasound, quite a few blood tests, and an allergy review, with a GI review still waiting, with so far the result being an intermediate possibility of PEs and a very likely possibility of a viral cold. Oh yeah, and the blood thinner protocol implemented on the off chance that the 'intermediate probability' result is an actual positive and not a false positive.
None of these tests would have been done with a 'normal' person who had those symptoms - it takes a cancer-survivor status to set off such a round of tests. Lucky me! Oh well, better safe than sorry, I guess, which brings me back to the issue of blood thinner protocol for blood clots.
Blood Thinner Protocol:
Blood clots form in the legs, where the vascular system is complex and the veins are small. Generally they form because for whatever reason (and there are many) some people's blood is lacking in sufficient anti-coagulant factors Sometimes these clots break loose and travel through the vascular system toward/to the heart, lungs or brain. Pulmonary embolisms are blood clots that settle near the heart and/or lungs. Clots may be found in your legs by a simple Doppler test (like an ultrasound) but this test doesn't work in your core area (heart, lungs, etc.), thus the need for a CT scan or an alternate nuclear medicine test, like the VQ.
If your blood has anti-coagulant factors, your body can normally do the job of 'eating up' these clots. However if your anti-coagulating factors are low, the clots can grow bigger faster than they can be consumed. This is when they become dangerous and can potentially block a vein, causing lack of blood (and therefore oxygen) and severe damage or death. Blood thinners provide anti-coagulant factors that push the see-saw in favor of the body's ability to consume the clot, rather than letting it grow bigger. They don't cause the clots to dissolve, they just allow the body to do this naturally.
The normal medicine for people with blood clots (either in their legs or higher up) is Cumaden (aka Warfarin). However it takes a few days for these pills to build up the anti-coagulant factors in your blood, so at first sub-cutaneous shots are given to provide these factors directly. The patient will often give themselves these shots, and I can tell you that it's really no big deal at all. The syringe's come loaded with the correct dose. You clean a spot on your belly, pinch the fatty tissue together, plunge the needle in and push the meds. It doesn't hurt at all, although I suppose that may not be the case for people who fear needles. Still I imagine the pain is more anxiety for them, than actual physical pain, because seriously, it doesn't hurt at all. The shots are discontinued once a certain INR level is reached.
INR - International Normalized Ratio - measures the time it takes for blood to clot as compared to the average. A 'normal' person without blood clots will have an INR of 1.0, which DOES NOT mean that an INR of 1.0 means there are no blood clots! However people with blood clots will often have an INR of less than 1.0. My INR was at 1.0 when it was measured in the hospital, but given the other uncertain tests, they still decided to proceed with the blood thinner protocol. The target INR while on blood thinners is between 2.0 and 3.0. Less than 2.0 means the clots may continue to grow bigger rather than being consumed by the body, and greater than 3.0 means that the patient has a chance for uncontrolled bleeding.
When you first start this treatment you will go in to a clinic often (4-5 times per week at first) to have a blood draw to test INR. Some clinics use a finger-prick test, but these results are less accurate and more variable than a blood draw. Later in the day a nurse will call with the INR result and tell you the dosage of Warfarin to take. Pills come in various levels (5.0 and 10 mg, etc.) and are different colors so you know which dosage they are at a glance. They are easily broken in two for 2.5 and 7.5 mg. dosages. The patient takes both the shots and the Warfarin until their INR is 2.0 or greater for two days in a row. Once this happens they can discontinue the shots. I took 5 shots and then was able to stop.
Right now, almost 2 weeks after I started the protocol, my IRN is 2.9, so they've cut my dosage a little. I suspect I will end up at about a 5.0 dosage for most of the week, with maybe a day or two at 2.5 mg. dosage occasionally. Right now I'm having my INR tested every 4 days or so, and if it stays stable it will eventually go to once a week, once every two weeks, and then once a month. It's a little irritating, but the test is fast and my care-provider has a great system set up at clinics all over so I can go close-by and be in and out in no time.
People with blood clots in their legs are often put on a blood thinner regime for 6 months. They use a Doppler test (it's like an ultrasound) to see if you have blood clots in your legs. I had this done in the hospital and it was a negative. They'll use blood thinners for 12 months if the clots have moved to the lungs or heart area. Some people, who have weak anti-coagulants, may stay on a blood thinner regime their whole life. But again, the good news is that the risk is low, the potential gain high, and the whole thing isn't too inconvenient, once they've set the right level.
One thing to be aware of when on blood thinners; different foods and meds can affect your INR, which is why there is sometimes some fluctuating results. For example, leafy greens are high in vitamin K, and these foods (kale, spinach, collard greens, etc.) can cause your INR to fall, thus increasing the chance for clots. You can eat these foods, but if you're going to, it's best to eat them regularly, so that your Warfarin dose can be set a bit higher to compensate. Consistency in your diet, exercise and meds is the key. If you vary these things too much, your INR will vary, and you'll end up going in for blood draws more often, with frequent changes to your daily Warfarin dose.
My summary for this post:
1. Cancer-survivors and their health-care providers scrutinize their health issues closely. It can be irritating, but better safe than sorry!
When you're a 'normal' person with a backache/pain you assume you have a strained muscle. When you're a 'normal' person with a cough you assume you have a cold. When you're a cancer-survivor with these things, you might have a strained muscle, and you might have a cold, but you and your doctors start thinking about how those symptoms, singly or combined, might mean something else. This is what happened to me during September.
I wrote about the back-pain incident in a prior post - where we went from assuming a pulled muscle to speculating about kidney stones, to speculating about PE's (pulmonary embolisms) because some of the symptoms of the first could translate to the second. Kidney stones were eliminated (my kidney numbers looked great) and that lead to speculation about the potential for PE's, because they share some common symptoms and I've had them before. Summarizing that post - they couldn't get a yes/no answer to PE's because my veins wouldn't cooperate with a power-push for a CT scan, but the back-up nuclear medicine test (VQ) was negative so they ruled them out, leaving us back where we started, with a strained back muscle.
Being a cancer survivor means things take on layers of meaning, and you have to consider them all, not just the first, obvious thing. It can be a pain in the butt.
Okay, so now skip forward a couple of weeks, to when I started to have some symptoms of a cold. This cold was sort of severe in its symptoms (dizziness, shortness of breath, strong cough which resulted in a few abdominal aches and pains). Just a strong cold for a 'normal' person, especially one used to Arizona weather and now going through the Minnesota fall, but not to a cancer survivor, especially not if they experience chest pains, like I did one day (unfortunately the day of my niece's wedding!). It was a Sat. and I went into the ER and they immediately brought me in and started an EKG in case I was having a heart attack. The heaviness in my chest had lasted no more than an hour, and the EKG was normal, but it was still enough to set off a new round of tests, since PE's can cause chest pain.
The docs admitted me to the hospital, and sent me for yet another CT scan. This time, after a few tries, they got a good vein for the power injection of the contrast, however during the injection (20 cc's in 4-5 seconds) the line slipped out and the contrast infiltrated my arm rather than the vein, so no CT scan could be run - again! So they sent me for another VQ test - again!
Here's the problem with the VQ test. While the CT test, when run with contrast, can give a pretty definitive Yes/No answer to the PE question, the VQ test can only give a probability - low/intermediate/high, etc. There's no certainty to the test. The first VQ test had been negative, and even though the D-Dimer blood test had been slightly elevated (0.53 over the 0.49 high limit for normal) they concluded the overall result was negative. The same two tests a few weeks later were 0.65 for D-Dimer (still not really high, but slightly higher than before) and Low on the VQ. I asked the doc three questions (which I already knew the answer to):
1. What's the treatment if you diagnose PE's? Ans: Blood thinner (Cumaden/Warfarin).
2. What's the risk of not using blood thinners if you have a PE? Ans: Bad - PE's can kill people if left untreated.
3. What's the risk of using blood thinners if you don't have a PE? Ans: Low - a potential for bleeding if you're not careful.
I told the doc that since they couldn't definitely say whether I had a PE or not, I would by far prefer they assume I did and treat for it, rather than assume I didn't and risk the consequences. The docs came to the same conclusion, and using both the minor D-Dimer and VQ test results, gave a diagnoses of 'Intermediate chance of PE' so they could start me on the blood thinner protocol. This is a great example of how fairly common symptoms for a 'normal' person take on bigger impact for a cancer survivor. We just cover more bases in general, on every little thing. Most of the time it's probably over-kill, but you don't want to miss that one time when it isn't.
At the end of this post, I'm going to include the details of the blood thinner protocol for those interested, but there's still a bit more of the diagnosis labyrinth that occurred as a result of this (alleged) cold.
After the second attempted CT scan, the blood work taken in the hospital that night showed elevated liver enzymes (there are several numbers, but two, which were supposed to be below 40, were in the mid-300's! The last time those numbers had been tested was in June, and they were completely normal. Since then, they've retested my liver enzyme numbers twice; the first time they were either in the normal range or just above, and the second time they were all normal. This set off a round of 'what happened between June and September?' questions.
I couldn't think of anything at first, but then I remembered a plumbing problem that had occurred in August, and googled mold and it's health impact. The info was interesting - the symptoms ranged from low (allergy-like) for healthy (i.e. 'normal') people, to severe for people with sensitive or compromised immune systems. Let's count off who falls into this category: young children, old people, people with autoimmune disorders, and people who have had a bone-marrow or stem-cell transplant and therefore have a new immune system - like young children. For these people the problems can be more severe, up to and including liver damage.
So yup, you guessed it, two additional appointments are made for me; an allergist to test for mold, and a GI specialist to scrutinize the subsequent ultrasound done on my liver. My personal feeling is that the high reading came from my system having to metabolize the contrast that infiltrated my arm, rather than going in the vein, during the failed CT scan (since the blood draw took place a few hours after the test), but by now you know the drill - the numbers are normal and that would probably be the end of it for a 'normal' patient, but not for a cancer survivor.
So, GI specialist in November, and Allergist yesterday. The Allergist ran both a pulmonary function diagnostic test and the normal allergy scratch tests. The results? Good pulmonary function, and no allergies. The doc's thoughts:
1. I could have had a virus (virus cause colds!) - often the cough outlasts the actual virus by some weeks.
2. I could have on-going acid reflux problems - 20% of adults who do have only a cough as a symptom.
I told her the cough seemed to be diminishing, so she said we'd wait a few weeks to see if it went away. If it did, the odds were I simply had a viral infection - a cold. If not the acid-reflux option would be investigated, and luckily I already had a scheduled appt. set up with the GI for Nov., so the timing was perfect.
As of today, my cough is just about gone, I'm going to guess the reality is actually #1 - I had a cold virus! Look at all that transpired for (hopefully) such a simple thing: Two attempted CT scans, two VQ nuclear medicine scans, two chest x-rays, an EKG, a Doppler analysis, a night in the hospital, an ultrasound, quite a few blood tests, and an allergy review, with a GI review still waiting, with so far the result being an intermediate possibility of PEs and a very likely possibility of a viral cold. Oh yeah, and the blood thinner protocol implemented on the off chance that the 'intermediate probability' result is an actual positive and not a false positive.
None of these tests would have been done with a 'normal' person who had those symptoms - it takes a cancer-survivor status to set off such a round of tests. Lucky me! Oh well, better safe than sorry, I guess, which brings me back to the issue of blood thinner protocol for blood clots.
Blood Thinner Protocol:
Blood clots form in the legs, where the vascular system is complex and the veins are small. Generally they form because for whatever reason (and there are many) some people's blood is lacking in sufficient anti-coagulant factors Sometimes these clots break loose and travel through the vascular system toward/to the heart, lungs or brain. Pulmonary embolisms are blood clots that settle near the heart and/or lungs. Clots may be found in your legs by a simple Doppler test (like an ultrasound) but this test doesn't work in your core area (heart, lungs, etc.), thus the need for a CT scan or an alternate nuclear medicine test, like the VQ.
If your blood has anti-coagulant factors, your body can normally do the job of 'eating up' these clots. However if your anti-coagulating factors are low, the clots can grow bigger faster than they can be consumed. This is when they become dangerous and can potentially block a vein, causing lack of blood (and therefore oxygen) and severe damage or death. Blood thinners provide anti-coagulant factors that push the see-saw in favor of the body's ability to consume the clot, rather than letting it grow bigger. They don't cause the clots to dissolve, they just allow the body to do this naturally.
The normal medicine for people with blood clots (either in their legs or higher up) is Cumaden (aka Warfarin). However it takes a few days for these pills to build up the anti-coagulant factors in your blood, so at first sub-cutaneous shots are given to provide these factors directly. The patient will often give themselves these shots, and I can tell you that it's really no big deal at all. The syringe's come loaded with the correct dose. You clean a spot on your belly, pinch the fatty tissue together, plunge the needle in and push the meds. It doesn't hurt at all, although I suppose that may not be the case for people who fear needles. Still I imagine the pain is more anxiety for them, than actual physical pain, because seriously, it doesn't hurt at all. The shots are discontinued once a certain INR level is reached.
INR - International Normalized Ratio - measures the time it takes for blood to clot as compared to the average. A 'normal' person without blood clots will have an INR of 1.0, which DOES NOT mean that an INR of 1.0 means there are no blood clots! However people with blood clots will often have an INR of less than 1.0. My INR was at 1.0 when it was measured in the hospital, but given the other uncertain tests, they still decided to proceed with the blood thinner protocol. The target INR while on blood thinners is between 2.0 and 3.0. Less than 2.0 means the clots may continue to grow bigger rather than being consumed by the body, and greater than 3.0 means that the patient has a chance for uncontrolled bleeding.
When you first start this treatment you will go in to a clinic often (4-5 times per week at first) to have a blood draw to test INR. Some clinics use a finger-prick test, but these results are less accurate and more variable than a blood draw. Later in the day a nurse will call with the INR result and tell you the dosage of Warfarin to take. Pills come in various levels (5.0 and 10 mg, etc.) and are different colors so you know which dosage they are at a glance. They are easily broken in two for 2.5 and 7.5 mg. dosages. The patient takes both the shots and the Warfarin until their INR is 2.0 or greater for two days in a row. Once this happens they can discontinue the shots. I took 5 shots and then was able to stop.
Right now, almost 2 weeks after I started the protocol, my IRN is 2.9, so they've cut my dosage a little. I suspect I will end up at about a 5.0 dosage for most of the week, with maybe a day or two at 2.5 mg. dosage occasionally. Right now I'm having my INR tested every 4 days or so, and if it stays stable it will eventually go to once a week, once every two weeks, and then once a month. It's a little irritating, but the test is fast and my care-provider has a great system set up at clinics all over so I can go close-by and be in and out in no time.
People with blood clots in their legs are often put on a blood thinner regime for 6 months. They use a Doppler test (it's like an ultrasound) to see if you have blood clots in your legs. I had this done in the hospital and it was a negative. They'll use blood thinners for 12 months if the clots have moved to the lungs or heart area. Some people, who have weak anti-coagulants, may stay on a blood thinner regime their whole life. But again, the good news is that the risk is low, the potential gain high, and the whole thing isn't too inconvenient, once they've set the right level.
One thing to be aware of when on blood thinners; different foods and meds can affect your INR, which is why there is sometimes some fluctuating results. For example, leafy greens are high in vitamin K, and these foods (kale, spinach, collard greens, etc.) can cause your INR to fall, thus increasing the chance for clots. You can eat these foods, but if you're going to, it's best to eat them regularly, so that your Warfarin dose can be set a bit higher to compensate. Consistency in your diet, exercise and meds is the key. If you vary these things too much, your INR will vary, and you'll end up going in for blood draws more often, with frequent changes to your daily Warfarin dose.
My summary for this post:
1. Cancer-survivors and their health-care providers scrutinize their health issues closely. It can be irritating, but better safe than sorry!
2. Blood thinner protocol is used by many people for many different reasons. Consistency in diet, exercise and medications is key to keeping your results stable and your treatment low-maintenance!
And a couple of personal notes: It's beautiful in Minnesota right now - autumn is gorgeous here. For a week the leaves were blazing green, gold, orange and red, and now they're falling, but still bright. We're having wonderfully cool nights - perfect sleeping weather - and beautiful days in the 50's and 60's. It's my very favorite season! I hope you're all having a wonderful fall wherever you are (or spring if you're in the southern hemisphere, of course!).
I'm currently on the 14th (14th!) draft of my novel. It's about 25% complete so far. I'm really satisfied with Act 1 right now, but need to trim 20-40 pages from Act. 2, and 5-10 pages from Act 3 to have it in shape for the Agenting process. I'm hoping to get the final rewrite done this month and start that next step quickly. Fingers crossed!
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