Lulled into complaceny
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MochaMixAZ
Posts: 844 Member
So... I consider myself an optimistic realist. The glass isn't always half-full to me. Sometimes - it's half empty... but at least I have half a glass.
About 6 years ago, I discovered I have a rare, genetic clotting disorder. Once diagnosed, it requires being put on warfarin, a blood thinner that is also the main component of rat poison. Scary, but true.
I discovered this diagnosis by passing out at the top of my stairs, tumbling to the bottom, and stopping breathing. I was extremely fortunate to be found before I literally died. I was taken to the hospital, found to have multiple DVT's in both my legs, and my lungs were filled with pulmonary emboli - something that is frequently a death sentence. 2 weeks later, I was discharged on the medication. At discharge, a lot changed: I have to get labs done at LEAST once a month (more frequently if my coumadin levels are off). I need to be concerned and wary of bumps, bruises, and falls... a papercut will literally bleed for hours due to the medication. I cannot get pregnant - the medication is toxic to a fetus and childbirth could cause me to bleed to death. I had to sell my Harley and stop riding motorcycles. The DVTs did permanent damage to my leg veins... and with any extended sitting or standing, I can retain 10-14 pounds (yes, pounds) of fluid in my legs.
However. I'm alive. At least there IS a medication that can help me. The labs suck and are an inconvenience, but at least science allows for a safe (or at least safer) dose to be maintained. I've exchanged Harley riding for bicycling. I take precautions, but I haven't stopped taking moderate risks.
As for my weight, I've become complacent. I had a great weight loss... and then I stalled out. I've attempted to get re-motivated, but just... haven't. My PCP is happy with my success. I was happy with my success, even though I never made it to my goal.
And then today.... I had my first appointment with my new blood doctor. Today, he told me I *might* be able to come off the blood thinners. He said after reviewing all my labs (and ordering some new ones) that he thinks I may have been misdiagnosed... but he's not positive. To find out for sure - we have to do some experimenting. I would need to be off the warfarin for 3 months and then we would need to do more labs. (Apparently the medication actually can cause an inaccurate lab reading). IF I do not have the disorder, everything would be fine, labs would be great, and I could stay off the medication. IF I have the disorder, I would have to go back on the medication... and I could develop a clot at anytime in that 3 month period... or have a stroke, or a heart attack, or another pulmonary emboli, or dvt....
So I haven't decided what to do about the experimenting yet. However, if I'm even to CONSIDER trying it, I believe I need to be in the best shape of my life. I need to reduce all risk factors that I can control, not the least of which is the extra weight I still have to lose. I need to increase my activity - that's a known way to reduce clots. All that considered, it is still extremely risky to try... of course, taking the rat poison for life isn't a picnic, either.
Anyway... I hope this can be the shove I need to get out of complacency... A chance to come off this caustic drug. It's just a maybe, but before I can even consider trying, I need to get to my goal. Time to stop futzing around - THIS is a good reason to not just be satisfied with "Being Okay."
I'm not excited, exactly. I'm not upset. I'm not quite resigned or resolved. I'm not happy or unhappy. I'm not even determined yet. But I hope I will become so. My doctor said I could try coming off the medication now, or wait another year. He said we could maintain the status quo for another year... but I requested an appointment in 6 months to try to set that timeline and goal for myself.
So - here we go. As I write this, I guess maybe I am a little bit excited. I hope this can infuse my resolve and I can FINISH this. I want this to be the catalyst to launch me out of complacency. I kinda feel like an old car motor that keeps turning over but won't quite catch and start. Hopefully, this will be what it takes to finally get me to zoom into the future!!!
About 6 years ago, I discovered I have a rare, genetic clotting disorder. Once diagnosed, it requires being put on warfarin, a blood thinner that is also the main component of rat poison. Scary, but true.
I discovered this diagnosis by passing out at the top of my stairs, tumbling to the bottom, and stopping breathing. I was extremely fortunate to be found before I literally died. I was taken to the hospital, found to have multiple DVT's in both my legs, and my lungs were filled with pulmonary emboli - something that is frequently a death sentence. 2 weeks later, I was discharged on the medication. At discharge, a lot changed: I have to get labs done at LEAST once a month (more frequently if my coumadin levels are off). I need to be concerned and wary of bumps, bruises, and falls... a papercut will literally bleed for hours due to the medication. I cannot get pregnant - the medication is toxic to a fetus and childbirth could cause me to bleed to death. I had to sell my Harley and stop riding motorcycles. The DVTs did permanent damage to my leg veins... and with any extended sitting or standing, I can retain 10-14 pounds (yes, pounds) of fluid in my legs.
However. I'm alive. At least there IS a medication that can help me. The labs suck and are an inconvenience, but at least science allows for a safe (or at least safer) dose to be maintained. I've exchanged Harley riding for bicycling. I take precautions, but I haven't stopped taking moderate risks.
As for my weight, I've become complacent. I had a great weight loss... and then I stalled out. I've attempted to get re-motivated, but just... haven't. My PCP is happy with my success. I was happy with my success, even though I never made it to my goal.
And then today.... I had my first appointment with my new blood doctor. Today, he told me I *might* be able to come off the blood thinners. He said after reviewing all my labs (and ordering some new ones) that he thinks I may have been misdiagnosed... but he's not positive. To find out for sure - we have to do some experimenting. I would need to be off the warfarin for 3 months and then we would need to do more labs. (Apparently the medication actually can cause an inaccurate lab reading). IF I do not have the disorder, everything would be fine, labs would be great, and I could stay off the medication. IF I have the disorder, I would have to go back on the medication... and I could develop a clot at anytime in that 3 month period... or have a stroke, or a heart attack, or another pulmonary emboli, or dvt....
So I haven't decided what to do about the experimenting yet. However, if I'm even to CONSIDER trying it, I believe I need to be in the best shape of my life. I need to reduce all risk factors that I can control, not the least of which is the extra weight I still have to lose. I need to increase my activity - that's a known way to reduce clots. All that considered, it is still extremely risky to try... of course, taking the rat poison for life isn't a picnic, either.
Anyway... I hope this can be the shove I need to get out of complacency... A chance to come off this caustic drug. It's just a maybe, but before I can even consider trying, I need to get to my goal. Time to stop futzing around - THIS is a good reason to not just be satisfied with "Being Okay."
I'm not excited, exactly. I'm not upset. I'm not quite resigned or resolved. I'm not happy or unhappy. I'm not even determined yet. But I hope I will become so. My doctor said I could try coming off the medication now, or wait another year. He said we could maintain the status quo for another year... but I requested an appointment in 6 months to try to set that timeline and goal for myself.
So - here we go. As I write this, I guess maybe I am a little bit excited. I hope this can infuse my resolve and I can FINISH this. I want this to be the catalyst to launch me out of complacency. I kinda feel like an old car motor that keeps turning over but won't quite catch and start. Hopefully, this will be what it takes to finally get me to zoom into the future!!!
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Replies
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Good luck. You lost so much weight already!!! Whatever the decision you make, I will be in the cheerleader squad
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Yes! Any possiblity to live without the Warfarin is worth it! You are such a strong woman. You can do this. Listen to your inner voice, exhaust all avenues, then go for it.
I'll be standing next to Yanicka :largequantitiesofflowersforyou:0 -
I'm here for you too! And next time I'm in AZ we'll celebrate how far you've come and how great you're doing!0
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Wow, that's a huge decision. I hope these 6 months are very productive for you. I'm sure you can loss the last 28 lbs on your ticker in that time if you stay focused and motivated. Hopefully, the weight loss and overall better health will have a very positive effect. It sounds like a scarey choice and I pray that you do what's best for you and all things work out for your good.0
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