Today was my last (hopefully) follow-up doctor's visit related to the Sept/Oct. issues. I met with a GI specialist to review my liver enzyme numbers and the ultrasound. It went very well. He didn't believe there was any reason to schedule any intrusive tests at this time, and only had blood drawn to recheck the numbers. If they're good, he says I probably don't need to see him again for 2 years.
The abrupt spike in my enzyme numbers cannot be accounted for with certainty, however he is leaning toward the presence of a PE setting them off, which is adding to the building evidence that I indeed may have had a PE that set off everything, even though we couldn't confirm it with absolute certainty. The liver has a wrappng around it (think of cellophane) and a PE blocking the blood supply could have caused it to become inflamed, which would have spike the enzyme numbers. My TSH numbers were also wonky during those early blood tests, and this makes it difficult to analyze the liver enzyme numbers. But a PE could also have accounted for the wonky TSH numbers.
I began blood thinner protocol back in Sept., right when the numbers came in, and those numbers were all normal within 9 days. As long as they look good now, the GI doc is going to assume the problem was a singular event, which is now over. The story is beginning to look pretty cohesive, at any rate.
So long story short, no more tests needed unless the numbers are unusual.
Thursday, November 8, 2012
Thursday, November 1, 2012
Status Update: Nov. 1, 2012
Hi everyone!
This update (unlike the last one) will be pretty short - it's actually a continuation/update of the last one, on the blood thinner protocol.
I have now been on blood thinners for a full month. My INR has been firmly in the 2.0 - 3.0 range for all that time (after the first 5 days, when I took the shots to boost my numbers up). At first I went in for a blood draw more than once a week, then shifted to a once/week reading, and now am at the once every 2 weeks schedule. My INR is at 2.7 as of yesterday's reading, and will be read again in 2 weeks. My dosage schedule is 5.0 mg 6 days a week, and 7.5 mg once a week (on Fridays), so it's very easy to remember and manage. If I had a PE (which we still don't know for sure), it's likely diminished quite a bit over the last month. Certainly the risk of a problem from a PE is significantly reduced by now, if not eliminated altogether. I imagine I will soon be on a once/month schedule for testing INR - yay!
My next appointment is with the GI specialist, to take a look at the liver issues. Those numbers have returned to normal, but a more in-depth evaluation is warranted. That takes place in a week, on Nov. 8, so I'll probably update again after that.
Re my book - I'm essentially done with 3/4ths of the current (hopefully last) draft - yay! I had to rewrite the last chapter of Act 2 completely, and will need to rework/rewrite the chapters of Act 3 as a result (especially the first two of the seven), but I can see the light at the end of the tunnel. It's possible that the first chapter of Act 2 can be eliminated altogether, but this will probably be the last decision I make, once the full edit is complete. I've learned a lot in doing the multiple drafts on this book - the manuscript as it exists now is dramatically different than the first draft. The story is the same, but the telling of it is very, very different. I also went from 8 to 6 to 5 key characters (1 primary protagonist and 4 supporting protagonists) during the course of these numerous drafts, each time learning a lot about how to refine a story while keeping in all the crucial elements of drama and plot.
During this last draft I began to really follow a more disciplined approach to ensuring that the crucial elements of drama were not only present, but in the right place (in terms of an Act 1, Act 2, Act 3 dramatic breakdown). Balancing those parts has been a great learning experience for me, and I think it will make the writing of the last 3 books of the series much easier (and faster) , with a much better output product overall! I think another week or so will be enough to finish that last 25% (Act 3), so I'm very excited.
If all goes well I will begin the agenting process by the middle of the month - fingers crossed, guys!
This update (unlike the last one) will be pretty short - it's actually a continuation/update of the last one, on the blood thinner protocol.
I have now been on blood thinners for a full month. My INR has been firmly in the 2.0 - 3.0 range for all that time (after the first 5 days, when I took the shots to boost my numbers up). At first I went in for a blood draw more than once a week, then shifted to a once/week reading, and now am at the once every 2 weeks schedule. My INR is at 2.7 as of yesterday's reading, and will be read again in 2 weeks. My dosage schedule is 5.0 mg 6 days a week, and 7.5 mg once a week (on Fridays), so it's very easy to remember and manage. If I had a PE (which we still don't know for sure), it's likely diminished quite a bit over the last month. Certainly the risk of a problem from a PE is significantly reduced by now, if not eliminated altogether. I imagine I will soon be on a once/month schedule for testing INR - yay!
My next appointment is with the GI specialist, to take a look at the liver issues. Those numbers have returned to normal, but a more in-depth evaluation is warranted. That takes place in a week, on Nov. 8, so I'll probably update again after that.
Re my book - I'm essentially done with 3/4ths of the current (hopefully last) draft - yay! I had to rewrite the last chapter of Act 2 completely, and will need to rework/rewrite the chapters of Act 3 as a result (especially the first two of the seven), but I can see the light at the end of the tunnel. It's possible that the first chapter of Act 2 can be eliminated altogether, but this will probably be the last decision I make, once the full edit is complete. I've learned a lot in doing the multiple drafts on this book - the manuscript as it exists now is dramatically different than the first draft. The story is the same, but the telling of it is very, very different. I also went from 8 to 6 to 5 key characters (1 primary protagonist and 4 supporting protagonists) during the course of these numerous drafts, each time learning a lot about how to refine a story while keeping in all the crucial elements of drama and plot.
During this last draft I began to really follow a more disciplined approach to ensuring that the crucial elements of drama were not only present, but in the right place (in terms of an Act 1, Act 2, Act 3 dramatic breakdown). Balancing those parts has been a great learning experience for me, and I think it will make the writing of the last 3 books of the series much easier (and faster) , with a much better output product overall! I think another week or so will be enough to finish that last 25% (Act 3), so I'm very excited.
If all goes well I will begin the agenting process by the middle of the month - fingers crossed, guys!
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!
Saturday, September 22, 2012
Status Update: Sept. 22, 2012
I had my six-week flush (of my porta-cath) this last week, and also saw my Oncologist. We reviewed the two major events that had occurred since I'd seen her last; my trip to Mayo Clinic and the recent test protocol for pulmonary embolisms that turned out to be nothing more than a pulled muscle in my back.
I relayed the Mayo physicians recommendation that nuclear imaging tests be reduced and my Oncologist was in full agreement for two reasons: 1) Since I'm just about at the 2 year mark, reduced testing is justified unless anything unusual occurs, and 2) It's best to limit radiation exposure, especially in patients who have had a lot of chemo or radiation as part of their treatment.
So the good news is that I won't have to have any special tests in October at the 2-year post-transplant mark. Since I had a PET scan in June, she suggests we do the next one a year from then, with periodic blood work now and then as required. Since I have to have a flush of my porta-cath every six weeks, they'll draw blood every third or fourth time for general maintenance testing. I also will no longer be getting a bone-marrow biopsy as a diagnostic test (unless there's some medical reason that warrants it).
The negative is that I passed on a flu shot when I saw my general practitioner last month, thinking I'd get it during the October protocol - and I forgot to mention it to my Oncologist. So not only did I not get a flu shot when I could have, but now I've been feeling like I'm coming down with a cold/flu. Today while working on my computer, I wore my headphones, and noticed something I hadn't before - there's some settling in my chest. Headphones let you hear the internal echo of your breathing - try it!
Since I had pneumonia quite a few times in the early years of my illness, I've grown really good at keeping an eye out for early signs of congestion. When I heard that rasping I immediately pulled out my trusty Voldyne 5000 volumetric spirometer.
This is a plastic device with two channels with floaters, and a breathing hose. The purpose of it is to help people gain lung power after a respiratory illness. It's also excellent for getting your lungs open if you start to feel congestion. Pneumonia is caused by water in your lungs. When it first appears it's usually at the bottom of the lungs, and causes the tissue there to stick together. If the water remains trapped there, or increases, little by little your respiratory power will decrease until you have pneumonia. Using the spirometer even just a few times a day can force your lungs open, right down to the bottom, and give your body the opportunity to drain that liquid. I'll give you a couple of websites in case you want to check it out further. The first one shows what the apparatus looks like while the second site explains how it works. I'll summarize those instructions below.
1. http://www.hudsonrci.com/Products/product_indiv.asp?catalog=1&PageID=10&prod_cat=28&prod_subcat=&keywords=
2. http://wiki.answers.com/Q/How_do_you_use_the_voldyne_5000
INSTRUCTIONS:
1. If you look at the apparatus in the first addy, you'll see the two channels and floaters. Seal your lips around the mouthpiece and breathe in slowly.
2. Try to keep the floater on the left in the best box (from top to bottom it's Good, Better, Best, so you're trying to keep the floater low and steady).
3. While keeping the left-hand floater low (in Best) try to get the right hand floater as high as possible.
4. There's a slider on the outside of the right-hand channel and you can position it for your high-point or your target high point, and increase it as your lung power increases. The scale goes from 0 to 5000 ml. (inspired volume). When I was given this device years ago (I was in the hospital with pneumonia) I could barely pass 500. Today I have the slider set for 1500, because the congestion has brought my respiratory rate down.
Do it in sets of 10 breaths once an hour, or a few times a day - it can make a big difference. I can do it much longer if I'm surfing the web and not typing. It can really make a difference quickly.
When you first start out, you can also just try to get the right-hand floater high with hard, deep breaths out, while ignoring the left-hand floater. This can help open your lungs to clear congestion. Ideally you should try to do both. Doing both ensures that you take long, deep breaths that fill your diaphragm, and not just your upper lungs, so that you can force your lungs open completely, and keep the tissue open/separated long enough to start your body's natural fluid-draining process.
Arizona's air is much dryer than Minnesota's, so the extra water in the air is a reminder for me to keep on top of these respiratory exercises. It's good for any respiratory problems (like a collapsed lung, pneumonia, congestion, low respiratory due to being out of shape, etc.). It's amazing how quickly you can cut short a respiratory problem if you recognize the symptoms early and keep on top of it. Get one of these handy-dandy devices, but remember that, for good hygiene, only one person should use it.
It's a real autumn day here in Minnesota, although it's officially still summer. It's a little chilly today, but it looks like we'll have a week of Indian summer next week, which is great since my niece is getting married next Saturday. Fall has always been my favorite season in Minnesota, so I'm enjoying it. I hope you're all having a great September where ever you are!
I relayed the Mayo physicians recommendation that nuclear imaging tests be reduced and my Oncologist was in full agreement for two reasons: 1) Since I'm just about at the 2 year mark, reduced testing is justified unless anything unusual occurs, and 2) It's best to limit radiation exposure, especially in patients who have had a lot of chemo or radiation as part of their treatment.
So the good news is that I won't have to have any special tests in October at the 2-year post-transplant mark. Since I had a PET scan in June, she suggests we do the next one a year from then, with periodic blood work now and then as required. Since I have to have a flush of my porta-cath every six weeks, they'll draw blood every third or fourth time for general maintenance testing. I also will no longer be getting a bone-marrow biopsy as a diagnostic test (unless there's some medical reason that warrants it).
The negative is that I passed on a flu shot when I saw my general practitioner last month, thinking I'd get it during the October protocol - and I forgot to mention it to my Oncologist. So not only did I not get a flu shot when I could have, but now I've been feeling like I'm coming down with a cold/flu. Today while working on my computer, I wore my headphones, and noticed something I hadn't before - there's some settling in my chest. Headphones let you hear the internal echo of your breathing - try it!
Since I had pneumonia quite a few times in the early years of my illness, I've grown really good at keeping an eye out for early signs of congestion. When I heard that rasping I immediately pulled out my trusty Voldyne 5000 volumetric spirometer.
This is a plastic device with two channels with floaters, and a breathing hose. The purpose of it is to help people gain lung power after a respiratory illness. It's also excellent for getting your lungs open if you start to feel congestion. Pneumonia is caused by water in your lungs. When it first appears it's usually at the bottom of the lungs, and causes the tissue there to stick together. If the water remains trapped there, or increases, little by little your respiratory power will decrease until you have pneumonia. Using the spirometer even just a few times a day can force your lungs open, right down to the bottom, and give your body the opportunity to drain that liquid. I'll give you a couple of websites in case you want to check it out further. The first one shows what the apparatus looks like while the second site explains how it works. I'll summarize those instructions below.
1. http://www.hudsonrci.com/Products/product_indiv.asp?catalog=1&PageID=10&prod_cat=28&prod_subcat=&keywords=
2. http://wiki.answers.com/Q/How_do_you_use_the_voldyne_5000
INSTRUCTIONS:
1. If you look at the apparatus in the first addy, you'll see the two channels and floaters. Seal your lips around the mouthpiece and breathe in slowly.
2. Try to keep the floater on the left in the best box (from top to bottom it's Good, Better, Best, so you're trying to keep the floater low and steady).
3. While keeping the left-hand floater low (in Best) try to get the right hand floater as high as possible.
4. There's a slider on the outside of the right-hand channel and you can position it for your high-point or your target high point, and increase it as your lung power increases. The scale goes from 0 to 5000 ml. (inspired volume). When I was given this device years ago (I was in the hospital with pneumonia) I could barely pass 500. Today I have the slider set for 1500, because the congestion has brought my respiratory rate down.
Do it in sets of 10 breaths once an hour, or a few times a day - it can make a big difference. I can do it much longer if I'm surfing the web and not typing. It can really make a difference quickly.
When you first start out, you can also just try to get the right-hand floater high with hard, deep breaths out, while ignoring the left-hand floater. This can help open your lungs to clear congestion. Ideally you should try to do both. Doing both ensures that you take long, deep breaths that fill your diaphragm, and not just your upper lungs, so that you can force your lungs open completely, and keep the tissue open/separated long enough to start your body's natural fluid-draining process.
Arizona's air is much dryer than Minnesota's, so the extra water in the air is a reminder for me to keep on top of these respiratory exercises. It's good for any respiratory problems (like a collapsed lung, pneumonia, congestion, low respiratory due to being out of shape, etc.). It's amazing how quickly you can cut short a respiratory problem if you recognize the symptoms early and keep on top of it. Get one of these handy-dandy devices, but remember that, for good hygiene, only one person should use it.
It's a real autumn day here in Minnesota, although it's officially still summer. It's a little chilly today, but it looks like we'll have a week of Indian summer next week, which is great since my niece is getting married next Saturday. Fall has always been my favorite season in Minnesota, so I'm enjoying it. I hope you're all having a great September where ever you are!
Friday, September 7, 2012
Status Update: Sept. 7, 2012
So the week around Labor Day weekend were interesting, but before I give the details, I'll give the conclusion - everything is fine!
The problem started out on Wed. Aug. 28th, with severe spasming and pains along my lower back on the left side, and wrapping up around my ribs on the side. I couldn't really move even a little without that area going nuts (okay, not a medical phrase, but you get my drift). Although I couldn't figure out how it had happened, I assumed I had pulled or strained a muscle. The spasming pain continued on till Friday evening and then began to subside a bit, but when it did I was left with this dull, radiating ache on the left side of my back, mid-way down.
Now as I've indicated in earlier posts, it takes 1-2 years for a new immune system to grow after a bone-marrow or stem-cell transplant, and after about 18 months almost all of my numbers were back in the normal range except for the Creatinine, which is a measure of kidney function. The desired range is 0.5 - 1.5 and I was high throughout that time. Everytime I saw a summary of lab work they would describe the status of that outlier number as 'chronic kidney failure,' which always scared the crap out of me because it sounds so bad. When I asked what it meant, though, they said it's just how they describe the kidney function in that area outside of the range. They also said it could stay the same, get worse, or improve, and since I felt good, I left it at that. With this dull ache in the area of my left kidney, however, I got a little anxious.
Unfortunately by the time I started transitioning my thoughts from 'pulled muscle' to 'kidney problems' I was into the holiday weekend. The pain had diminished, even though it hadn't gone away, though, so I decided to wait it out until Tuesday to see a doctor rather than going in to the emergency room. For a day or so over the weekend, I also experienced a burning sensation upon urination, and began to wonder if perhaps it wasn't actually a third option - kidney stones.
On Tuesday I was able to get an appt. with the doc. She agreed it could be a general kidney issue, or kidney stones, but also, since I had some shortness of breath, that that symptom, along with back pain, could suggest pulmonary embolisms. Now I've had pulmonary embolisms and it didn't feel like that to me, but you don't want to mess with that potential, so she included a test for it. They collected blood and urine for three tests, two for the kidneys and one for a test called the D-Dimer for a clue as to the PE condition.
The urine test came back with no blood traces, which generally eliminates kidney stones - yay!.
The second blood test came back with great news - for the first time since the transplant my creatinine level was in range (1.3 in the 0.5 - 1.5 range) - yay!
The third blood test, the D-Dimer, was going to take a bit longer to read, and she sent me home with the understanding that if it came back with an elevated reading she would be sending me to the hospital for a CT scan. I'd barely pulled into the driveway when I got the call and the news that the test result was indeed out-of-range high, although only slightly so (the desired range is 0.0 - 0.49 and I was at 0.53). So we didn't get out of the car, but instead went on to the hospital - No Yay!
Before I get to the next part, I have to explain that while at the docs, the technicians had had trouble accessing a vein for a blood draw. They'd managed to get into several veins, but couldn't get a blood draw-back. They finally managed it in my hand and recommended that I drink more water as vein problems can be caused by dehydration. This was pretty ironic considering that my last entry, about my mother's health, involved what we finally determined to be dehydration and I've been harping at her ever since to drink more water each day.
How does this fit into the CT scan? To see pulmonary embolisms from a CT scan, they need to power-inject a contrast dye just seconds prior to the scan. The injection is about 20cc's, and it power-injects at a rate of about 5cc's per second. To do this safely you have to have a good vein, or risk blowing it out. Well, they couldn't get a good vein, so they called in a nurse who specialized in IV's. She couldn't get a good vein, so they called in another nurse who was part of their 'flying vascular' team. She used an ultrasound to look for good veins, but was also unsuccessful. After about 10 attempts over the course of 2 hours I was feeling almost faint with the adrenaline response of the deep needle probes that were near a few nerves and arteries, and they gave up.
But they had a backup plan. The other way to assess the potential for pulmonary embolisms is via a nuclear medicine protocol, which involves a regular IV (without a power-injection), a different scanning device, followed by a chest X-Ray. This is a less effective test, but was the only remaining option available. The last vascular nurse had left an IV in my hand for this test.
So off I went to admissions again (they needed to re-admit me to the Nuclear Medicine department). It took a while because that department isn't open 24/7, so they had to call in a technologist from home to run the test. Here's how it works.
1. You lay on a narrow movable tray that slides into/under a scanning device that looks like a cross between a CT scan donut and an X-Ray machine. Before they do the scans you have to breathe in a radioactive mist for about 8 minutes (with your nose plugged and your mouth sealed around the breathing tube so none of the radioactive material gets out of your lungs to contaminate the exterior of the test equipment.
2. After the 8 minutes, they take four scans of your lungs. Each picture takes about 4-6 minutes.
3. After the first set of pictures, they inject a nuclear dye, and remove the IV.
4. The next step is to repeat the 4 scans, although these take place a little bit faster than the first set. Then two sets of images shows the difference between oxygen in and oxygen out of your lungs, and any irregularities that might indicate blood clots there.
5. The last part of the protocol is two chest X-Rays, front and side. I had to go back up to the radiology and imaging department to have these done.
I'd gone in to see the doctor at 2 pm, and by now it was almost 9 pm. At that point I had to wait there until the doctor on staff at the hospital had reviewed the scans, and called the results in to my doctor. Luckily this happened within about 15 minutes of finishing the chest X-Rays. My doc called me and said the tests did not indicate pulmonary embolisms so I could do home.
So, long story short? I spent 7 hours in the doctors office and hospital, with resultant heavy-duty black and blue marks all over my arms and hands, all over what appears to be a strained back muscle. Oh well, at least I learned that my kidneys had finally fallen into the normal, in-range level.
And in summary, my advice is the same as I gave in my last entry - Dehydration Bad! Water Good!
The problem started out on Wed. Aug. 28th, with severe spasming and pains along my lower back on the left side, and wrapping up around my ribs on the side. I couldn't really move even a little without that area going nuts (okay, not a medical phrase, but you get my drift). Although I couldn't figure out how it had happened, I assumed I had pulled or strained a muscle. The spasming pain continued on till Friday evening and then began to subside a bit, but when it did I was left with this dull, radiating ache on the left side of my back, mid-way down.
Now as I've indicated in earlier posts, it takes 1-2 years for a new immune system to grow after a bone-marrow or stem-cell transplant, and after about 18 months almost all of my numbers were back in the normal range except for the Creatinine, which is a measure of kidney function. The desired range is 0.5 - 1.5 and I was high throughout that time. Everytime I saw a summary of lab work they would describe the status of that outlier number as 'chronic kidney failure,' which always scared the crap out of me because it sounds so bad. When I asked what it meant, though, they said it's just how they describe the kidney function in that area outside of the range. They also said it could stay the same, get worse, or improve, and since I felt good, I left it at that. With this dull ache in the area of my left kidney, however, I got a little anxious.
Unfortunately by the time I started transitioning my thoughts from 'pulled muscle' to 'kidney problems' I was into the holiday weekend. The pain had diminished, even though it hadn't gone away, though, so I decided to wait it out until Tuesday to see a doctor rather than going in to the emergency room. For a day or so over the weekend, I also experienced a burning sensation upon urination, and began to wonder if perhaps it wasn't actually a third option - kidney stones.
On Tuesday I was able to get an appt. with the doc. She agreed it could be a general kidney issue, or kidney stones, but also, since I had some shortness of breath, that that symptom, along with back pain, could suggest pulmonary embolisms. Now I've had pulmonary embolisms and it didn't feel like that to me, but you don't want to mess with that potential, so she included a test for it. They collected blood and urine for three tests, two for the kidneys and one for a test called the D-Dimer for a clue as to the PE condition.
The urine test came back with no blood traces, which generally eliminates kidney stones - yay!.
The second blood test came back with great news - for the first time since the transplant my creatinine level was in range (1.3 in the 0.5 - 1.5 range) - yay!
The third blood test, the D-Dimer, was going to take a bit longer to read, and she sent me home with the understanding that if it came back with an elevated reading she would be sending me to the hospital for a CT scan. I'd barely pulled into the driveway when I got the call and the news that the test result was indeed out-of-range high, although only slightly so (the desired range is 0.0 - 0.49 and I was at 0.53). So we didn't get out of the car, but instead went on to the hospital - No Yay!
Before I get to the next part, I have to explain that while at the docs, the technicians had had trouble accessing a vein for a blood draw. They'd managed to get into several veins, but couldn't get a blood draw-back. They finally managed it in my hand and recommended that I drink more water as vein problems can be caused by dehydration. This was pretty ironic considering that my last entry, about my mother's health, involved what we finally determined to be dehydration and I've been harping at her ever since to drink more water each day.
How does this fit into the CT scan? To see pulmonary embolisms from a CT scan, they need to power-inject a contrast dye just seconds prior to the scan. The injection is about 20cc's, and it power-injects at a rate of about 5cc's per second. To do this safely you have to have a good vein, or risk blowing it out. Well, they couldn't get a good vein, so they called in a nurse who specialized in IV's. She couldn't get a good vein, so they called in another nurse who was part of their 'flying vascular' team. She used an ultrasound to look for good veins, but was also unsuccessful. After about 10 attempts over the course of 2 hours I was feeling almost faint with the adrenaline response of the deep needle probes that were near a few nerves and arteries, and they gave up.
But they had a backup plan. The other way to assess the potential for pulmonary embolisms is via a nuclear medicine protocol, which involves a regular IV (without a power-injection), a different scanning device, followed by a chest X-Ray. This is a less effective test, but was the only remaining option available. The last vascular nurse had left an IV in my hand for this test.
So off I went to admissions again (they needed to re-admit me to the Nuclear Medicine department). It took a while because that department isn't open 24/7, so they had to call in a technologist from home to run the test. Here's how it works.
1. You lay on a narrow movable tray that slides into/under a scanning device that looks like a cross between a CT scan donut and an X-Ray machine. Before they do the scans you have to breathe in a radioactive mist for about 8 minutes (with your nose plugged and your mouth sealed around the breathing tube so none of the radioactive material gets out of your lungs to contaminate the exterior of the test equipment.
2. After the 8 minutes, they take four scans of your lungs. Each picture takes about 4-6 minutes.
3. After the first set of pictures, they inject a nuclear dye, and remove the IV.
4. The next step is to repeat the 4 scans, although these take place a little bit faster than the first set. Then two sets of images shows the difference between oxygen in and oxygen out of your lungs, and any irregularities that might indicate blood clots there.
5. The last part of the protocol is two chest X-Rays, front and side. I had to go back up to the radiology and imaging department to have these done.
I'd gone in to see the doctor at 2 pm, and by now it was almost 9 pm. At that point I had to wait there until the doctor on staff at the hospital had reviewed the scans, and called the results in to my doctor. Luckily this happened within about 15 minutes of finishing the chest X-Rays. My doc called me and said the tests did not indicate pulmonary embolisms so I could do home.
So, long story short? I spent 7 hours in the doctors office and hospital, with resultant heavy-duty black and blue marks all over my arms and hands, all over what appears to be a strained back muscle. Oh well, at least I learned that my kidneys had finally fallen into the normal, in-range level.
And in summary, my advice is the same as I gave in my last entry - Dehydration Bad! Water Good!
Tuesday, August 14, 2012
Status Update: Aug. 15, 2012 (Mom's Health)
Since I'm getting caught up, I decided to make a related medical post - this time about my mother. I figure it will give an update to any family reading this, and is medical in nature, so fits generally for everyone else.
(Note: mom gave me permission to put this post up.)
For the last few months my mother has been experiencing some respiratory issues. She was getting winded very easily, appeared a bit unsteady on her feet (and shaky even when sitting), and was losing weight. This last part is pretty critical since her top weight in the last few years was 105. The condition escalated slowly for some weeks, until it reached a point two weeks ago where she couldn't walk more than a few feet without sitting down, and climbing stairs caused her quite a bit of respiratory stress.
I insisted she go to the doctor. You can't imagine the drama this caused. My mother is 76 and NEVER goes to the doctor! She also takes no medications. Considering she's been a heavy smoker for 60 years, she's generally quite healthy. Most of this 'good health' has to be attributed to her good genes, because she smokes, drinks Pepsi, eats very little, and she NEVER drinks water! It's amazing, all things considered.
At any rate, drama aside, I insisted and dragged her to urgent care, since she had no primary care physician. They did an EKG, chest x-ray, and blood work. The doctor thought she could hear a slight heart murmur, but otherwise couldn't see anything obvious, except for the respiratory distress symptoms, which still persisted. What worried me was her weight - 93 pounds. All of this was worrisome to them, of course, and they sent her to the ER. You can only imagine the argument she put up over that, but I insisted yet again.
Once at the ER they repeated those tests, and said they wanted to keep her in the hospital for some additional ones. A few of these were the Pulmonary Function Diagnostic, CT scan and echo/ultrasound (I describe these tests in my pre-transplant and milestone test pages). A bunch of specialists came in over the course of the evening and the following morning as the tests were being run, and here were the results:
1. Blood work all normal except for a high creatinine level, which indicates kidney issues.
2. Lungs clear except for 1 nodule (they want to do another CT scan in 3 months).
3. Normal pulmonary function (?!)
It was all very odd. They finally were left with the by-default conclusion that 60+ years of smoking was taking its toll and she could be showing the preliminary signs of Emphysema/COPD. However one thing I noticed was that the symptoms were diminishing during her hospital stay. She thought it might mean that she had an animal allergy (she lives in close proximity to a dog and 3 cats now, when she didn't before) while I thought perhaps the IV fluids they'd given her had corrected some dehydration.
We scheduled a visit with a primary care physician for a week later, but during that week I asked her to do three things:
1. Cut down on smoking.
2. Start drinking water.
3. Eat more high calorie foods.
Amazingly enough she did all of these things. She cut her smoking more than in half (to half a pack a day - still way too much, but an improvement), and started drinking 30 oz. of water daily. She fills a 30 oz. container at the start of the day and keeps it with her. Because of this fluid intake, she's almost quit drinking Pepsi, although she still drinks 1-2 cups of coffee a day.
Here's the thing about dehydration that I've learned during the course of my own illness: Only water counts as water. Non-water beverages, almost without exception, have chemicals that have to be processed differently through your digestive system and kidneys. Water, on the other hand, flushes out your digestive system and kidneys so that it can do its job easier. A healthy intake of water for any person daily should be the equivalent of half their weight in ounces. Since mom weighed 93 pounds, she should be drinking around 42 ounces of water a day. She's not there yet, but 30 is a big improvement over zero!
The other thing about non-water beverages and dehydration is that for every cup of these chemically-laden or dehydrating beverages (caffeine and alcohol are dehydrating to your tissue) you should drink two extra cups of water to flush it through your system. So since she drinks 2 cups of coffee a day, she should probably be drinking at least 42 + 16 oz. of water daily, for a total of 58. She's only at half of that, but it's a start.
And the result?
She hasn't had a bad bout of respiratory distress since then, although she does get short of breath pretty easily. I think the correct conclusion is that she may indeed be exhibiting the early stages of emphysema/COPD, but the symptoms were severely aggravated by dehydration. Since she began drinking water she says she's hungrier and has gained weight - she's almost up to 100 pounds now. If I can get her back to 105 or 110 that would be fantastic. She's trying to continue to cut down on cigarettes, and that's particularly amazing because she's never shown the least inclination to do that in the past. If she can stay at half or less for now, that's good, but I'd love to see her get down to at least 1/3rd of her peak consumption. Zero would be best of course, but baby steps...
So the lesson learned? Don't smoke and drink lots of water! I know, I know, it's pretty self-evident, isn't it?
(Note: mom gave me permission to put this post up.)
For the last few months my mother has been experiencing some respiratory issues. She was getting winded very easily, appeared a bit unsteady on her feet (and shaky even when sitting), and was losing weight. This last part is pretty critical since her top weight in the last few years was 105. The condition escalated slowly for some weeks, until it reached a point two weeks ago where she couldn't walk more than a few feet without sitting down, and climbing stairs caused her quite a bit of respiratory stress.
I insisted she go to the doctor. You can't imagine the drama this caused. My mother is 76 and NEVER goes to the doctor! She also takes no medications. Considering she's been a heavy smoker for 60 years, she's generally quite healthy. Most of this 'good health' has to be attributed to her good genes, because she smokes, drinks Pepsi, eats very little, and she NEVER drinks water! It's amazing, all things considered.
At any rate, drama aside, I insisted and dragged her to urgent care, since she had no primary care physician. They did an EKG, chest x-ray, and blood work. The doctor thought she could hear a slight heart murmur, but otherwise couldn't see anything obvious, except for the respiratory distress symptoms, which still persisted. What worried me was her weight - 93 pounds. All of this was worrisome to them, of course, and they sent her to the ER. You can only imagine the argument she put up over that, but I insisted yet again.
Once at the ER they repeated those tests, and said they wanted to keep her in the hospital for some additional ones. A few of these were the Pulmonary Function Diagnostic, CT scan and echo/ultrasound (I describe these tests in my pre-transplant and milestone test pages). A bunch of specialists came in over the course of the evening and the following morning as the tests were being run, and here were the results:
1. Blood work all normal except for a high creatinine level, which indicates kidney issues.
2. Lungs clear except for 1 nodule (they want to do another CT scan in 3 months).
3. Normal pulmonary function (?!)
It was all very odd. They finally were left with the by-default conclusion that 60+ years of smoking was taking its toll and she could be showing the preliminary signs of Emphysema/COPD. However one thing I noticed was that the symptoms were diminishing during her hospital stay. She thought it might mean that she had an animal allergy (she lives in close proximity to a dog and 3 cats now, when she didn't before) while I thought perhaps the IV fluids they'd given her had corrected some dehydration.
We scheduled a visit with a primary care physician for a week later, but during that week I asked her to do three things:
1. Cut down on smoking.
2. Start drinking water.
3. Eat more high calorie foods.
Amazingly enough she did all of these things. She cut her smoking more than in half (to half a pack a day - still way too much, but an improvement), and started drinking 30 oz. of water daily. She fills a 30 oz. container at the start of the day and keeps it with her. Because of this fluid intake, she's almost quit drinking Pepsi, although she still drinks 1-2 cups of coffee a day.
Here's the thing about dehydration that I've learned during the course of my own illness: Only water counts as water. Non-water beverages, almost without exception, have chemicals that have to be processed differently through your digestive system and kidneys. Water, on the other hand, flushes out your digestive system and kidneys so that it can do its job easier. A healthy intake of water for any person daily should be the equivalent of half their weight in ounces. Since mom weighed 93 pounds, she should be drinking around 42 ounces of water a day. She's not there yet, but 30 is a big improvement over zero!
The other thing about non-water beverages and dehydration is that for every cup of these chemically-laden or dehydrating beverages (caffeine and alcohol are dehydrating to your tissue) you should drink two extra cups of water to flush it through your system. So since she drinks 2 cups of coffee a day, she should probably be drinking at least 42 + 16 oz. of water daily, for a total of 58. She's only at half of that, but it's a start.
And the result?
She hasn't had a bad bout of respiratory distress since then, although she does get short of breath pretty easily. I think the correct conclusion is that she may indeed be exhibiting the early stages of emphysema/COPD, but the symptoms were severely aggravated by dehydration. Since she began drinking water she says she's hungrier and has gained weight - she's almost up to 100 pounds now. If I can get her back to 105 or 110 that would be fantastic. She's trying to continue to cut down on cigarettes, and that's particularly amazing because she's never shown the least inclination to do that in the past. If she can stay at half or less for now, that's good, but I'd love to see her get down to at least 1/3rd of her peak consumption. Zero would be best of course, but baby steps...
So the lesson learned? Don't smoke and drink lots of water! I know, I know, it's pretty self-evident, isn't it?
Monday, August 13, 2012
Status Update: August 14, 2012 (Mayo Clinic)
I actually had my scheduled consultation at Mayo Clinic on July 24th, but I'm behind on my blog so I'll try to catch up now.
First of all, it's likely that most of you have heard of the famous Mayo Clinic, founded by brothers William and Charles Mayo. There are several associated clinics now, with a secondary, large one in Scottsdale, AZ, but the original and largest facility is in Rochester, Minnesota. Rochester is about a 2-1/2 hour drive directly south of the Twin Cities. My maternal grandmother's family is from southern Minnesota, a little north and west of Rochester (near Mankato, Minnesota). More on that later.
My mother and I drove down the day before. We stayed with a cousin, and he and his wife drove us into Rochester the next day (he's familiar with the facility). The complex is huge, with quite a few buildings in downtown Rochester. The information packet you receive prior to your appointment has a map that will lead you to the correct building, and shows all adjacent parking ramps, etc.
The first thing you notice at Mayo is the efficiency. When you walk in your building there is someone right at the elevator helping you get where you need to go. When you make an appointment at Mayo, a lot of information is taken over the phone and then an information packet is mailed for you to fill out. Some of it gets sent back ahead of time (insurance information), and some you are asked to carry in with you for your physician. This is important because it means that when you reach the floor and service station given in your information packet they are ready for you. I brought a summary of my case written by my transplant physician, along with CDs of all my PET scans, and a copy of the recent lab work my Minnesota Oncologist had done the month before. The receptionist took this info to send to my physician and I took a seat.
I only had to wait for a few minutes before I was called in but while I was waiting it was fascinating to watch the assortment of people there, many clearly from different regions of the world. It really is an international facility with amazing credentials.
My doctor was one of three transplant physicians at the clinic. She started out by reviewing my case history to make sure she had the chronology correct. I was amazed at how extensive it was and at how she'd absorbed that information in so short a time. She reviewed my lab work and did a quick but thorough physical exam. When she was through here were her thoughts and recommendations:
1. She said I seemed to be doing very well post-transplant.
2. She suggested I stop taking the Acyclovir. This is an anti-viral drug used to prevent shingles, and is important during the regrowth of a new immune system. My transplant physician had originally planned to keep me on this for the first year post-transplant, but at the end of that first year extended it to the second year. She said she normally wouldn't keep a patient on it for even a year, and that all my numbers looked good enough to warrant stopping it. This was great news as it was my last transplant med.
3. My blood work was all in order, with the exception of the Creatinine level, which is and has been high ever since the transplant. They watch this number because it can indicate a problem with the kidney functions. My number is high, and could remain high or get worse, but could conversely come down as my new immune system settles in. She didn't appear too worried about it.
4. She suggested reducing the level of some on-going tests. I'd been having a PET scan 4 times a year in the first two years post-transplant, and they were going to reduce that number to 2 or 3, but she thought once a year would be adequate unless I noticed any masses. She suggested eliminating the bone-marrow biopsy all-together. I probably only would have gotten that done twice more, once at the 2-year and once at the 5-year mark, but was very happy to eliminate it. She said that was something they could run if other tests indicated a need, but that the need was not present at the time.
5. She suggested I have my porta-cath removed. I liked this idea a lot, since it requires maintenance every 4-6 weeks, but it also worried me; it's nice to have this in case you need access to your veins quickly and there's a problem with your arms, etc. She said that was normal for most patients, but since foreign bodies could present dangers of coagulation, and since I was doing so well, I should consider it. She suggested waiting until the 2-year milestone tests were completed, and if they were all clear, to do it then. I'm definitely going to talk about this with my Oncologist in the Cities and do it at the two-year mark if everything looks good.
6. She said the neuropathy in my feet would probably be permanent since it hadn't gone away yet. This results in a tingling sensation in the balls of my feet up to the toes, especially when I stand after sitting, and can sometimes result in some balance problems. Sometimes the sensation is stronger, like a stinging instead of a tingling, but overall I can live with it.
7. She knew who my Oncologist in Minneapolis was, and said there was no need for additional medical support at Mayo at this time. She had a full file now prepared for me, and would consult with my Oncologist as needed, and I could come back to Mayo if I experienced any problems, however.
The consultation took about 40 minutes, and was so efficient and thorough. When I left they gave me back all the materials I'd brought, because they'd already made copies for my file, and then I was sent to another station to do a flush on my porta-cath (since it was the 6-week maintenance mark). This only takes a few minutes, and very quickly thereafter we were on our way north again.
So long story short, the Mayo Clinic more than lived up to its reputation as a world-class medical facility with amazingly good customer service and quick, efficient and highly trained doctors and staff. It was quite an experience.
My next appointment is at the beginning of Sept., when I'll have my porta-cath flushed again and see my Oncologist. No doubt we'll set up my two-year milestone tests at that time for Oct. Fingers crossed that everything goes well for this important 24 month marker!
First of all, it's likely that most of you have heard of the famous Mayo Clinic, founded by brothers William and Charles Mayo. There are several associated clinics now, with a secondary, large one in Scottsdale, AZ, but the original and largest facility is in Rochester, Minnesota. Rochester is about a 2-1/2 hour drive directly south of the Twin Cities. My maternal grandmother's family is from southern Minnesota, a little north and west of Rochester (near Mankato, Minnesota). More on that later.
My mother and I drove down the day before. We stayed with a cousin, and he and his wife drove us into Rochester the next day (he's familiar with the facility). The complex is huge, with quite a few buildings in downtown Rochester. The information packet you receive prior to your appointment has a map that will lead you to the correct building, and shows all adjacent parking ramps, etc.
The first thing you notice at Mayo is the efficiency. When you walk in your building there is someone right at the elevator helping you get where you need to go. When you make an appointment at Mayo, a lot of information is taken over the phone and then an information packet is mailed for you to fill out. Some of it gets sent back ahead of time (insurance information), and some you are asked to carry in with you for your physician. This is important because it means that when you reach the floor and service station given in your information packet they are ready for you. I brought a summary of my case written by my transplant physician, along with CDs of all my PET scans, and a copy of the recent lab work my Minnesota Oncologist had done the month before. The receptionist took this info to send to my physician and I took a seat.
I only had to wait for a few minutes before I was called in but while I was waiting it was fascinating to watch the assortment of people there, many clearly from different regions of the world. It really is an international facility with amazing credentials.
My doctor was one of three transplant physicians at the clinic. She started out by reviewing my case history to make sure she had the chronology correct. I was amazed at how extensive it was and at how she'd absorbed that information in so short a time. She reviewed my lab work and did a quick but thorough physical exam. When she was through here were her thoughts and recommendations:
1. She said I seemed to be doing very well post-transplant.
2. She suggested I stop taking the Acyclovir. This is an anti-viral drug used to prevent shingles, and is important during the regrowth of a new immune system. My transplant physician had originally planned to keep me on this for the first year post-transplant, but at the end of that first year extended it to the second year. She said she normally wouldn't keep a patient on it for even a year, and that all my numbers looked good enough to warrant stopping it. This was great news as it was my last transplant med.
3. My blood work was all in order, with the exception of the Creatinine level, which is and has been high ever since the transplant. They watch this number because it can indicate a problem with the kidney functions. My number is high, and could remain high or get worse, but could conversely come down as my new immune system settles in. She didn't appear too worried about it.
4. She suggested reducing the level of some on-going tests. I'd been having a PET scan 4 times a year in the first two years post-transplant, and they were going to reduce that number to 2 or 3, but she thought once a year would be adequate unless I noticed any masses. She suggested eliminating the bone-marrow biopsy all-together. I probably only would have gotten that done twice more, once at the 2-year and once at the 5-year mark, but was very happy to eliminate it. She said that was something they could run if other tests indicated a need, but that the need was not present at the time.
5. She suggested I have my porta-cath removed. I liked this idea a lot, since it requires maintenance every 4-6 weeks, but it also worried me; it's nice to have this in case you need access to your veins quickly and there's a problem with your arms, etc. She said that was normal for most patients, but since foreign bodies could present dangers of coagulation, and since I was doing so well, I should consider it. She suggested waiting until the 2-year milestone tests were completed, and if they were all clear, to do it then. I'm definitely going to talk about this with my Oncologist in the Cities and do it at the two-year mark if everything looks good.
6. She said the neuropathy in my feet would probably be permanent since it hadn't gone away yet. This results in a tingling sensation in the balls of my feet up to the toes, especially when I stand after sitting, and can sometimes result in some balance problems. Sometimes the sensation is stronger, like a stinging instead of a tingling, but overall I can live with it.
7. She knew who my Oncologist in Minneapolis was, and said there was no need for additional medical support at Mayo at this time. She had a full file now prepared for me, and would consult with my Oncologist as needed, and I could come back to Mayo if I experienced any problems, however.
The consultation took about 40 minutes, and was so efficient and thorough. When I left they gave me back all the materials I'd brought, because they'd already made copies for my file, and then I was sent to another station to do a flush on my porta-cath (since it was the 6-week maintenance mark). This only takes a few minutes, and very quickly thereafter we were on our way north again.
So long story short, the Mayo Clinic more than lived up to its reputation as a world-class medical facility with amazingly good customer service and quick, efficient and highly trained doctors and staff. It was quite an experience.
My next appointment is at the beginning of Sept., when I'll have my porta-cath flushed again and see my Oncologist. No doubt we'll set up my two-year milestone tests at that time for Oct. Fingers crossed that everything goes well for this important 24 month marker!
Friday, June 22, 2012
Status Update: June 22, 2012 (PET Scan Results)
I finally got the results of my 20 month post-transplant PET scan - mostly clear, although the hot spot on my shin is still there. It showed up last fall, and after a long series of biopsies, tissue removal, tests and re-tests, they determined that even though it had some lymphocyte cells (what they look for in lymphoma masses) they were insufficient for a positive result. That spot on my shin aches a lot, and I get muscle spasms in that area, so I have no idea what it is, but since it doesn't appear to be getting worse, and other hot spots aren't appearing elsewhere, I guess I'll just think of it as an anomaly for now.
My next test is in Oct. and there will be quite a few, since that will be the 2-year post-transplant milestone evaluation, and it's considered significant.
My next test is in Oct. and there will be quite a few, since that will be the 2-year post-transplant milestone evaluation, and it's considered significant.
Wednesday, June 20, 2012
Status Update: June 20, 2012 (20 month post-transplant PET scan)
I saw my new Oncologist - Dr. Mehrotra - Monday, and she scheduled me for a PET scan today (done this morning). The Humphrey Cancer Center is very nice in that it is right across the hall from an Imaging department that has a PET scan device. In Arizona I used an independent company (Radiology Limited). They had quite a few imaging centers in Tucson, but only 2 of them had PET scan equipment. If they had trouble accessing a vein to inject the glucose solution for the test, you'd have to reschedule and go to your Oncologists office first to have your port accessed, then return their after, to have it de-accessed.
They had trouble accessing an arm vein today, but I just had to go across the hall to have my port accessed. There was a mix-up on the order and my sedative wasn't included, but I managed it okay without it - I think I've learned enough coping skills to get through that hour in the tube, also their PET scanner was designed a little differently (shorter, wider tube) and that seemed to help reduce claustrophobia as well.
Generally I have 3-4 PET scans a year, but my last one was in Jan. so I'm late on this one. The next one will be during my 2-year post-transplant milestone testing in Oct. I should get the results for today's scan from my Oncologist tomorrow or Friday, and will post an update then.
They had trouble accessing an arm vein today, but I just had to go across the hall to have my port accessed. There was a mix-up on the order and my sedative wasn't included, but I managed it okay without it - I think I've learned enough coping skills to get through that hour in the tube, also their PET scanner was designed a little differently (shorter, wider tube) and that seemed to help reduce claustrophobia as well.
Generally I have 3-4 PET scans a year, but my last one was in Jan. so I'm late on this one. The next one will be during my 2-year post-transplant milestone testing in Oct. I should get the results for today's scan from my Oncologist tomorrow or Friday, and will post an update then.
Wednesday, June 13, 2012
Status Update: June 14, 2012 (limb transplants via stem-cell transplant)
I heard something interesting recently. Apparently researchers are working on limb-transplants using an autologous stem-cell transplant to avoid tissue rejection. Take it with a grain of salt, because I've seen no verification of this, but here's how it would work in theory.
Say a soldier loses his arm in combat (and the lost limb cannot be reattached), and a recently-deceased person has left their body for medical research and/or organ donations. Transplants like this have not been done in the past because the chance that the recipients body will reject this foreign tissue is almost 100%. Apparently they are now working on this very scenario, but with a follow-up treatment of an autologous stem-cell transplant. The assumption in the technique described below is that the limb transplant is done first, followed by the stem-cell transplant.
As I discussed in my transplant basics page, an autologous stem-cell transplant is when the transplant recipient is their own donor. This is the kind of transplant I had. The recipient receives two kinds of injections for several days and these injections do 2 things: 1) Accelerate the growth of stem cells in your bone marrow, and 2) Allow the stem-cells to release from their bone-marrow mooring and make their way into your blood-stream in their immature, stem-cell state (i.e. before they become white blood cells, red blood cells and platelets, etc.).
After about a week of these injections an Aeferesis line (aka Hickman port) is installed in your chest leading into a major vein. Two ports reside outside the chest, for withdrawal of blood and simultaneous return of it. Kidney dialysis patients use a system like this. During a 4-hour visit to the Red Cross, the Aeferesis line is used, in conjunction with a centrifuge, to withdraw blood, separate out the heavier stem-cells, and return the rest. One session may be enough to collect the necessary amount for a stem-cell transplant, although in some cases two or more sessions may be needed. The collected stem cells are refined and processed, then frozen for use during the transplant.
The next step is to expose the patient to high-dosage chemo and radiation, in order to kill off their existing immune system. When that's complete, the stem-cell transplant takes place. The stem-cells are thawed at the patient's bedside and reintroduced by infusion through an IV drip. This generally takes no more than 2-3 hours.
For cancer patients, the killing off the immune system is necessary to erradicate the existing blood or auto-immune disease (like leukemia or lymphoma). This is not why it's done for limb transplants, though. The old immune system would see the transplanted limb as foreign tissue and send out anti-bodies to fight it, resulting in tissue rejection. The new immune system, however, may see the already attached new limb as not foreign - since it's been there 'all along' (from the point of view of the new immune system).
I'm not sure where they are in this research, but I'll be watching to see if there are any new updates in this new technology. It's a very interesting, idea, though, and takes stem-cell usage up to a whole new level.
Say a soldier loses his arm in combat (and the lost limb cannot be reattached), and a recently-deceased person has left their body for medical research and/or organ donations. Transplants like this have not been done in the past because the chance that the recipients body will reject this foreign tissue is almost 100%. Apparently they are now working on this very scenario, but with a follow-up treatment of an autologous stem-cell transplant. The assumption in the technique described below is that the limb transplant is done first, followed by the stem-cell transplant.
As I discussed in my transplant basics page, an autologous stem-cell transplant is when the transplant recipient is their own donor. This is the kind of transplant I had. The recipient receives two kinds of injections for several days and these injections do 2 things: 1) Accelerate the growth of stem cells in your bone marrow, and 2) Allow the stem-cells to release from their bone-marrow mooring and make their way into your blood-stream in their immature, stem-cell state (i.e. before they become white blood cells, red blood cells and platelets, etc.).
After about a week of these injections an Aeferesis line (aka Hickman port) is installed in your chest leading into a major vein. Two ports reside outside the chest, for withdrawal of blood and simultaneous return of it. Kidney dialysis patients use a system like this. During a 4-hour visit to the Red Cross, the Aeferesis line is used, in conjunction with a centrifuge, to withdraw blood, separate out the heavier stem-cells, and return the rest. One session may be enough to collect the necessary amount for a stem-cell transplant, although in some cases two or more sessions may be needed. The collected stem cells are refined and processed, then frozen for use during the transplant.
The next step is to expose the patient to high-dosage chemo and radiation, in order to kill off their existing immune system. When that's complete, the stem-cell transplant takes place. The stem-cells are thawed at the patient's bedside and reintroduced by infusion through an IV drip. This generally takes no more than 2-3 hours.
For cancer patients, the killing off the immune system is necessary to erradicate the existing blood or auto-immune disease (like leukemia or lymphoma). This is not why it's done for limb transplants, though. The old immune system would see the transplanted limb as foreign tissue and send out anti-bodies to fight it, resulting in tissue rejection. The new immune system, however, may see the already attached new limb as not foreign - since it's been there 'all along' (from the point of view of the new immune system).
I'm not sure where they are in this research, but I'll be watching to see if there are any new updates in this new technology. It's a very interesting, idea, though, and takes stem-cell usage up to a whole new level.
Tuesday, June 12, 2012
Status Update: June 12, 2012 (Robin Roberts)
This isn't about me, but it is about the transplant process. Many if not most of you have probably seen the news story this week about the journalist and Good Morning America Anchor, Robin Roberts, who was treated for breast cancer and as a result of that treatment, developed a secondary disease called Myelodysplastic syndrome (MDS). This is a disease of the blood and bone marrow that used to be known as preleukemia and like all other related blood diseases affects your immune system.
What many people don't realize is that cancer survivors often die from another form of cancer, and often that cancer occurs as a result of their previous cancer treatments. For example, getting high doses of radiation to kill a mass tumor cancer can result in skin cancer. Sometimes these secondary diseases happen shortly after the treatment, sometimes they take decades to manifest themselves. If you're a cancer survivor who experiences this secondary disease decades after your original treatment, during your older years, you're lucky.
Robin's MDS appears to have manifested itself pretty quickly after her breast cancer treatment. Apparently her immune system was negatively impacted by the original treatment she received and is now comprised. To fix this problem they're going to kill off this faulty immune system and attempt to give her a new one. The method they're going to use to do this is a bone-marrow transplant. If you read the Basics page of my blog, I'll have discussed this in detail, but to summarize: Stem-cell and bone-marrow transplants are two different methods which accomplish the same thing - kill off a blood-related disease and regrow a new immune system.
Because Robin's immune system is already compromised, she will need a donor with an uncompromised immune system. Luckily her sister is a perfect match, so that the chance for tissue rejection is very low. The immune system is the organ of your body that recognizes which pieces belong and which don't. If it sees something 'foreign' to it, it sends out antibodies like white blood cells to attack the foreign object (like killing a virus).
Robin's sister will undergo an in-patient treatment under general anaesthesia where they will remove 1-2 liters of bone marrow (generally from her hip bones). The bone-marrow fluid removed will be refined and processed and then frozen for Robin's transplant. Directly after this step, Robin will undergo high dosages of chemo and/or radiation to kill off her immune system and the MDS inhabiting it. When that is complete, her sister's donated fluid will be put into Robin by a simple transfusion. The frozen bags will be thawed at her bedside and then infused via an IV drip.
The actual transplant process will be done in 1-3 hours in all likelihood. The stem cells from the refined bone-marrow donation will find their way back to their homebase (into the bone marrow) where they will begin to rebuild a new immune system, maturing into white blood cells (to fight infections), red blood cells (to transport oxygen) and platelets (to clot injuries). In 2-3 weeks, if all goes well, Robin's blood numbers (done via a CBC - comprehensive Blood Count - test) will rise from zero (in most cases) to their healthy levels, indicating the growth of a new immune system is underway. This process will take 1-2 years to be completed, just like with a new infant, however once the CBC numbers are high enough, the rest can take place as an out-patient.
In a perfect world this treatment would work and Robin's MDS would be irradicated. Hopefully that's the case. Unfortunately Robin will have to undergo additional chemo and/or radiation during the transplant, and that's another dangerous link in the chain. Who knows what the future holds in her particular case, but hopefully it will be a good outcome. The one thing we do know is that the medical community has made big advancements in the diagnosis and treatment of various forms of cancer and auto-immune disorders in the last century, and will continue to do so during this one. I have no doubt that the risks associated with bone-marrow and stem-cell transplants will continue to diminish as science advances and medical researchers identify new treatments and focus in on ideal mixes and doses. My thoughts are with Robin as she enters this new phase of treatment.
What many people don't realize is that cancer survivors often die from another form of cancer, and often that cancer occurs as a result of their previous cancer treatments. For example, getting high doses of radiation to kill a mass tumor cancer can result in skin cancer. Sometimes these secondary diseases happen shortly after the treatment, sometimes they take decades to manifest themselves. If you're a cancer survivor who experiences this secondary disease decades after your original treatment, during your older years, you're lucky.
Robin's MDS appears to have manifested itself pretty quickly after her breast cancer treatment. Apparently her immune system was negatively impacted by the original treatment she received and is now comprised. To fix this problem they're going to kill off this faulty immune system and attempt to give her a new one. The method they're going to use to do this is a bone-marrow transplant. If you read the Basics page of my blog, I'll have discussed this in detail, but to summarize: Stem-cell and bone-marrow transplants are two different methods which accomplish the same thing - kill off a blood-related disease and regrow a new immune system.
Because Robin's immune system is already compromised, she will need a donor with an uncompromised immune system. Luckily her sister is a perfect match, so that the chance for tissue rejection is very low. The immune system is the organ of your body that recognizes which pieces belong and which don't. If it sees something 'foreign' to it, it sends out antibodies like white blood cells to attack the foreign object (like killing a virus).
Robin's sister will undergo an in-patient treatment under general anaesthesia where they will remove 1-2 liters of bone marrow (generally from her hip bones). The bone-marrow fluid removed will be refined and processed and then frozen for Robin's transplant. Directly after this step, Robin will undergo high dosages of chemo and/or radiation to kill off her immune system and the MDS inhabiting it. When that is complete, her sister's donated fluid will be put into Robin by a simple transfusion. The frozen bags will be thawed at her bedside and then infused via an IV drip.
The actual transplant process will be done in 1-3 hours in all likelihood. The stem cells from the refined bone-marrow donation will find their way back to their homebase (into the bone marrow) where they will begin to rebuild a new immune system, maturing into white blood cells (to fight infections), red blood cells (to transport oxygen) and platelets (to clot injuries). In 2-3 weeks, if all goes well, Robin's blood numbers (done via a CBC - comprehensive Blood Count - test) will rise from zero (in most cases) to their healthy levels, indicating the growth of a new immune system is underway. This process will take 1-2 years to be completed, just like with a new infant, however once the CBC numbers are high enough, the rest can take place as an out-patient.
In a perfect world this treatment would work and Robin's MDS would be irradicated. Hopefully that's the case. Unfortunately Robin will have to undergo additional chemo and/or radiation during the transplant, and that's another dangerous link in the chain. Who knows what the future holds in her particular case, but hopefully it will be a good outcome. The one thing we do know is that the medical community has made big advancements in the diagnosis and treatment of various forms of cancer and auto-immune disorders in the last century, and will continue to do so during this one. I have no doubt that the risks associated with bone-marrow and stem-cell transplants will continue to diminish as science advances and medical researchers identify new treatments and focus in on ideal mixes and doses. My thoughts are with Robin as she enters this new phase of treatment.
Wednesday, May 16, 2012
Status Update: May 16, 2012
Finally arrived in Minn. a few days ago. Our stuff will be here on Sat. but getting settled in a bit. The incisions from the appendectomy are fairly healed, and I've now got appointments with a new Primary Care Physician (Friday), Oncologist (June) and at the Mayo Clinic with a Transplant Physician (July). I did lose 20% of my health insurance when I left AZ and am keeping my fingers crossed that Mayo has a program that can cover that for me. My AZ Oncologist thinks there's a chance for that since I have a rare cancer and they might want to follow me and my progress. Let's hope so - do not want to have to pay 20% of my medical expenses!
Health Care providers who underwrite for Medicare may or may not be required to offer supplemental gap insurance for the final 20% depending on each individual state's regulation. In AZ they didn't require them to offer gap insurance to those under 65 so even though I could have afforded it, I couldn't get it. Luckily I was covered for that piece under a special AZ state exemption program. They don't have anything I'm eligible for here in Minn. though, so now I have to see if there are Health providers who offer Supplemental insurance to under 65, and calculate if the expense will be more or less than my actual 20% costs. It costs a LOT more to get that final 20% than it does for the initial 80% if you have a serious pre-existing condition!
I so wish we had a public option for health insurance that would force commercial businesses to compete rather than collude!
Health Care providers who underwrite for Medicare may or may not be required to offer supplemental gap insurance for the final 20% depending on each individual state's regulation. In AZ they didn't require them to offer gap insurance to those under 65 so even though I could have afforded it, I couldn't get it. Luckily I was covered for that piece under a special AZ state exemption program. They don't have anything I'm eligible for here in Minn. though, so now I have to see if there are Health providers who offer Supplemental insurance to under 65, and calculate if the expense will be more or less than my actual 20% costs. It costs a LOT more to get that final 20% than it does for the initial 80% if you have a serious pre-existing condition!
I so wish we had a public option for health insurance that would force commercial businesses to compete rather than collude!
Friday, April 27, 2012
Status Update: April 27, 2012
Well it never rains but it pours. I had my appendix removed yesterday - quite unexpectedly, and just under 2 weeks before we're set to drive across the country. I'd noticed some tenderness the day before, and it felt like I'd overeaten, only I actually hadn't eaten much of anything that day. Also the tenderness was located in the lower right of my abdomen. By the morning of the 26th it was still there, and I started to wonder if indeed it was my appendix. I managed to get a doctor's appt. for 11:40 am that day and he sent me straight on to the emergency room - he knew they would scan the area (CT Scan).
They did the scans, and it was indeed the appendix, and they removed it that night (last night) via laproscopic surgery. They needed to use 4 ports instead of 3, but they're all small of course. My blood count was good today so they released me and I'm home now at 6:00 pm. I will see the surgeon right before we leave for Minnesota to make sure everything's fine. Now I have to wonder whether this was just a normal occurrence or if the damage was aggravated by chemo. I'll ask both the surgeon and oncologist during my last meetings with them here in Arizona.
Another rains but it pours detail: On the way to the doc yesterday, I saw that I had both the oil and engine lights lit on my dash. We detoured from the ER to do an oil change and when they opened the hood there was a big old pack rats nest there. Apparently they can build them in hours. Of course there was wiring damage. While I was in the hospital my car was in the shop - my mom picked it up right after I got back from the hospital. So good news/bad news - both the car and my appendix issues were resolved (hopefully) before we hit the road, but there was an extra expense not anticipated. Murphy's Law strikes again.
ETA: The day after we picked up the car the engine light was back on! So it goes back in on Monday - fingers crossed hopefully for the last time!
They did the scans, and it was indeed the appendix, and they removed it that night (last night) via laproscopic surgery. They needed to use 4 ports instead of 3, but they're all small of course. My blood count was good today so they released me and I'm home now at 6:00 pm. I will see the surgeon right before we leave for Minnesota to make sure everything's fine. Now I have to wonder whether this was just a normal occurrence or if the damage was aggravated by chemo. I'll ask both the surgeon and oncologist during my last meetings with them here in Arizona.
Another rains but it pours detail: On the way to the doc yesterday, I saw that I had both the oil and engine lights lit on my dash. We detoured from the ER to do an oil change and when they opened the hood there was a big old pack rats nest there. Apparently they can build them in hours. Of course there was wiring damage. While I was in the hospital my car was in the shop - my mom picked it up right after I got back from the hospital. So good news/bad news - both the car and my appendix issues were resolved (hopefully) before we hit the road, but there was an extra expense not anticipated. Murphy's Law strikes again.
ETA: The day after we picked up the car the engine light was back on! So it goes back in on Monday - fingers crossed hopefully for the last time!
Tuesday, April 24, 2012
Status Update: April 24, 2012
Moving along on transferring medical stuff from Arizona to Minnesota. Arranged the following today:
Timing is good on the schedule. I see my new Oncologist in mid-June, just when it's time for my porta-cath to be flushed, then I have the Mayo Consultation about 5 weeks later in July - perfect time for the next flush as well. If they do a full screening then, that will put me 3 months out from my 2-year milestone evaluations, so July will hopefully include my third quarter 2012 tests.
Okay, here's something that's really funny. The person scheduling me at Mayo gave me a choice of three docs who work with transplants, and I chose Mikhailef Ivanova because in my new book I have a character I named Mikhaila Ivanova! Strange, huh? Or maybe not so strange... dundundun ;>
- Copy of medical records from my transplant team (will pick up Friday)
- CD copy of all scans (PET, etc.) from Radiology Limited (also will pick up Friday)
- Consultation at Mayo Clinic in July (yay!)
- Prescriptions picked up for the next 30-90 days, and refill scripts issued by my current primary care physician to cover me until I get a new PCP in Minnesota.
Timing is good on the schedule. I see my new Oncologist in mid-June, just when it's time for my porta-cath to be flushed, then I have the Mayo Consultation about 5 weeks later in July - perfect time for the next flush as well. If they do a full screening then, that will put me 3 months out from my 2-year milestone evaluations, so July will hopefully include my third quarter 2012 tests.
Okay, here's something that's really funny. The person scheduling me at Mayo gave me a choice of three docs who work with transplants, and I chose Mikhailef Ivanova because in my new book I have a character I named Mikhaila Ivanova! Strange, huh? Or maybe not so strange... dundundun ;>
Status Update: April 18, 2012
I'll be moving back to Minnesota, which means I need to find a new slate of doctors. I think I've located an Oncologist. I was actually looking for a doctor my current Oncologist knew who practiced in Minnesota, but he was no longer with the group originally listed. I took an appointment with another doctor in the group, and then went online to check her out. I found that recently she had focused on head/neck cancers and lung cancers, but that she had a specialty background in non-hogkins lymphoma - so it looks like an excellent fit. Since I have a porta-cath and need to have it flushed and lab work done every 4-6 weeks, I moved up my appt. with my current oncologist to two days before I move, then made another appt. with the new doc 6 weeks out.
Now I'm looking for a new team to provide my 2- and 5-year milestone tests (the 2 year evaluations are coming up this Oct.). I'm checking at both the Mayo Clinic and the University of Minnesota, which is an excellent research medical university. Something good will hopefully pop up in one of these spots.
The last thing to do is find a new primary care physician and I think I'll let that go until I'm in Minnesota.
On the book front, I'm working on the last draft (hopefully last draft) of the first book of one series, and have started the first draft of the first book of the series that is its prequel. The first series is a middle grade science fiction/fantasy, written in the third person and is positioned for Harry Potter meets Percy Jackson. The prequel, however, takes place 300 years before that series, and is a young adult action/adventure written in the first person and positioned for Indiana Jones meets Hunt for Red October. Originally I had planned to do the sequel last (for many reasons) but now I'm looking at reversing that order (also for many reasons).
Despite the differences in style and setting, there's a strong connection between the two series and I really like them both. The first person narrative voice is working really well for this second book but strangely enough I think the third person narrative is best for the middle grade series (although I may reconsider that as I get further on with the second one). Writing in first-person is a first for me, but I'm enjoying it a lot, although every now and then one sentence or paragraph will suddenly appear in the third person. I'm going to have to really scrutinize this during the editing stage! I'm about 1/3rd done with the new book and it's really coming along fast - probably because I have it outlined in detail chapter by chapter. I've already modified some things that will have to be changed in the middle-grade sequel for historical continuity, so this joint prequel/sequel strategy is turning out to be helpful overall.
Wednesday, April 18, 2012
Sunday, March 25, 2012
Milestone Tests: 5 Years
If you safely pass this milestone, your transplant team will begin to feel cautiously optimistic about a full cure.
Lab Work: See Qualifying Tests page for the details on this test.
Lab Work –
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Type
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Rating
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Duration
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Tourniquet
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Insert Needle to vein
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Collect Blood
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PET Scan: See Qualifying Tests page for the details on this test.
PET Scan –
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Type
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Rating
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Duration
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Tourniquet
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Insert Needle to vein
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Inject Glucose Tracer
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Wait Time
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Upper Body Scan
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Lower Body Scan
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Bone Marrow Biopsy: See Pre-Transplant Tests page for the details on this test.
Bone Marrow Biopsy –
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Type
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Rating
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Duration
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Locating Test Site
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Numbing Test Site
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Inserting Collection Needle
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Needle through bone
| |||
Bone Marrow Sample Collection
| |||
Bone Collection
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Pulmonary Diagnostic Function: See Pre-Transplant Tests page for the details on this test.
Pulmonary Function Diagnostic –
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Type
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Rating
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Duration
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Arterial Blood Collection
| |||
Pulmonary Function
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Additional Tests for 5-Year Milestone Review (make notes here or in Journal):
Results per 5-Year Milestone Review (make notes here or in journal):
Action Items per 5-Year Milestone Review (make notes here or in journal):
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