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Post by fattynnc on Apr 1, 2013 19:27:06 GMT -5
Months ago my cardiologist told me to have the DS and get over that surgery, then get rid of my Mirena (due to a PE). He told me to stop taking my warfarin after the Mirena was removed. Tonight will be my last dose of warfarin. I have weaned down to 1 mg per day and this will be my last pill.
I don't remember what he told me to do next and it probably doesn't matter because y'all guys and girls know the DS and he doesn't.
I think the answer is an aspirin a day to help avoid clotting. Is it okay for DSers to take an aspirin a day? Do any of you do this? Do you take a full aspirin or a baby aspirin? Is it a special type of asprin (buffered or any special kind)?
TIA
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Post by Deleted on Apr 1, 2013 20:01:48 GMT -5
If I were to take aspirin it would be only enteric coated. I think you need to talk to your cardiologist about whether you should take it, though, since you are under the care of such a specialist.
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Post by Paula on Apr 1, 2013 21:43:22 GMT -5
I had a PE myself 2 years before I had my DS revision. I did 6 months post PE warfarin therapy and then was taken off of it by my former PCP. My current PCP wanted to investigate what the cause of the DVT might have been. I tested normal for all the clotting disorders (like Factor V Leiden, etc), but no smoking gun was found. Only thing I tested for was compound heterozygous for the MTHFR mutations, but none of my medical people are calling that a definitive smoking gun either.
Since no smoking gun was found, I was put back on lifetime warfarin by my hematologist. I started back on it in the hospital when I had my revision and Ive been on ever since. Do they know the cause of your PE? If they aren't sure, I'd be leery of going off warfarin personally. Surviving one PE is miraculous...no sense tempting fate when we don't have to. Just my personal opinion of course. Not a medical professional by any stretch
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Post by Becky on Apr 1, 2013 22:35:16 GMT -5
I am homozygous for the MTHFR mutation, but I've never had a clot or any sort of issue relating to it (that I know of). I take a low dose aspirin every day. I wouldn't give you any advice though because I'm not in any shape or form a medical professional... just letting you know that I do take aspirin to prevent clots post DS. I haven't had any issues with it.
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Post by fattynnc on Apr 1, 2013 22:38:14 GMT -5
Paula, like you my PE was idiopathic. There was no evidence of a DVT nor any clots that broke off from my abdomen. My heart is fine. It didn't cause the clots to be thrown. The experts believe my clots actually formed in the lungs rather than hitting my lungs from elsewhere. The only thing anyone could come up with was the cardiologist suspecting the Mirena. There have been hundreds of PEs suspected from the Mirena. I am leery of going off of the warfarin too. My hematologist said lifelong warfarin. My PCP said warfarin for one year. My cardiologist said get off the warfarin after the Mirena was removed. I am taking a leap of faith and hoping that I am making the right choice going with the 2/3 majority on this.
EN, you are right. I am just being lazy. I am supposed to see my cardiologist for a follow up appt in May. I should go ahead and get it moved sooner and talk to him about it again.
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Post by fattynnc on Apr 2, 2013 14:44:17 GMT -5
Paula, I have been thinking it over since I read your message yesterday. I think you are right and it was probably a mistake to go off of the warfarin. Afterall, I do have an INR machine at home so it is easy enough to keep my levels stable. I am going to start back on it tonight and keep on keeping on. I have an 8 year old autistic son and I HAVE to be here to raise him and be here for him as long as possible.
I also have "giant platelets" and this is a very rare disorder. My hematologist doesn't think the giant platelets are related to the PE but what if it was related to that instead of the Mirena?
I think the best plan is just to stay on the warfarin. I have been very concerned and panicked about this since last night and there must be some reason my body is feeling tense about this change. I am going to trust my body and it seems to be telling me that it is uncomfortable with me going off of the warfarin.
Thanks for the advice Paula!
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Post by ms2mrsmyers on Apr 2, 2013 15:53:30 GMT -5
I think you should be following up with your physicians and following their advice rather than making your own decisions about what medications you should take or not since you aren't a physician, that is my opinion and it sounds like you have some complicated health issues.
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Post by fattynnc on Apr 2, 2013 16:35:14 GMT -5
ms2mrsmyers. You are right but there is no consensus in the medical community on this issue and no consensus with my doctors. I have 2 that say get off of warfarin and 1 that says stay on it for life.
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Post by hilary1617 on Apr 2, 2013 19:23:50 GMT -5
I just found out my long and sordid history with deep vein thrombosis and pulmonary emboli was caused by a rare cancer, glucagonoma, which is a type of pancreatic neuroendocrine tumor (carcinoid / islet cell cancer). I mention this only because I too had no smoking gun when my blood was tested up and down over the years to find some sort of factor which would predispose me to clotting. Further, Dr. K published a study indicating a higher incidence of carcinoid cancers detected in WLS patients... Glucagonoma has been reported in multiple SMO individuals, though it commonly thought of to be associated with weight loss once it is advanced. It is very slow growing and usually not diagnosed until very late in progression - after many, many years. Other symptoms include mild/borderline type II diabetes, depression and a persistent rash. Of these, I only experienced the first. Might be something to ask the doctors about if any other symptoms exist beyond unprovoked/unexplained DVT and PE.
Since the tumor was deemed the cause and has been removed (along with half my pancreas and some other bits and bobs), I am now off of warfarin.
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Post by Paula on Apr 2, 2013 20:09:21 GMT -5
When you have something happen that kills people, I'm all for questioning the medical advice given when there is no consensus on the correct course of action. I make no apologies about that because subsequent PEs increase the risk that that PE could be the one that sends you into cardiac arrest. If the DS has taught me anything, it's that I alone am ultimately my best health advocate. And what I said to fattynnc is to question if going off warfarin after an idiopathic PE is ultimately the best decision for her and definitely something to discuss with her medical team.
Take me, for example. First PCP said all was well and took me off warfarin. And I was off for nearly 2 years. But my new (now current) PCP, hematologist, and cardiologist all went WTF and wanted me on for life because of the unknown reason for the PE in the first place. Since I'm fond of living and death by PE is no picnic, I'm all for asking for more opinions from other medical professionals to make sure going off warfarin is a good idea. My INR is monitored and my warfarin schedule are handled by my local hospital's anticoagulation clinic in connection with my PCP, cardiologist, and hematologist.
I by no means am advocating self medicating or anything like that. What I am advocating is making sure that I am entirely comfortable with the decisions being made about my medical care by my medical team.
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Post by fattynnc on Apr 2, 2013 20:51:35 GMT -5
Wow Hilary, that is a very rare cancer. I appreciate the information and I will research those symptoms. I hope you are feeling better now.
Regarding my warfarin adjustments, I have self-medicated with warfarin with physician supervision for over a year now since I have a home PT-INR machine. I am going back on the warfarin tonight and will check my levels often as I get everything back into range.
Thanks to all for your good advice.
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Post by ms2mrsmyers on Apr 3, 2013 8:33:18 GMT -5
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Post by pattyl1 on Apr 3, 2013 9:08:10 GMT -5
I take an aspirin every day. Just a plain old aspirin. But that's just what *I* do. Probably done this for at least 20 years.
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