Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hello all! Well, I am just as confused as ever!! :o)
I had my repeat genetic testing for clotting disorders 3 weeks ago and got the call today from my hematologist with the results. Apparently I was "abnormal" for 3 disorders. One, anticardolipin, which is the first thing they told me when orginally hospitalized with PE's. However, I was borderline apparently. Then, (whilestill in the hospital) a second test came back elevated. For the life of me I cannot remember which it was, nor can I remember the ones I just found out about other than the anticardiplipin. (will be getting them in 2 days so I will know what the heck I am talking about LOL). I do know it was not factor V, that one I am at least semi familair with.
So when orginally in the hospital, and this test came back, they had all indicated I would b on coumadin for life. That however was not the cae and have been off for a month now.
Today, when my doctor called, with again 3 abnormal results, he told me I needed to be retested. Usually he said, you wait 12 weeks or so in between tests. I told him I could not do that as I am out of health coverage at the end of the month. So, he told me to go back an retest at the end of next week.
I can't say that I really even have a question here! LOL I am just sort of freaking a bit (especially since I am not feeling well at all). And all sorts of things are runing through my head, the first of which is could my kids have any of this???? If I do have more than one actual genetic factor, shouldn't I be on meds??? One is bad enough, but three????? Just to give a brief history to those who may not know me, or have not seen my posts, my only other risk factors included smoking, sleep apnea, and little exercise.
So yes, another situation of the "perfect storm", I agree. BUT, 3 genectic factors???? Dose me up already!!!!! LOL
I had my repeat genetic testing for clotting disorders 3 weeks ago and got the call today from my hematologist with the results. Apparently I was "abnormal" for 3 disorders. One, anticardolipin, which is the first thing they told me when orginally hospitalized with PE's. However, I was borderline apparently. Then, (whilestill in the hospital) a second test came back elevated. For the life of me I cannot remember which it was, nor can I remember the ones I just found out about other than the anticardiplipin. (will be getting them in 2 days so I will know what the heck I am talking about LOL). I do know it was not factor V, that one I am at least semi familair with.
So when orginally in the hospital, and this test came back, they had all indicated I would b on coumadin for life. That however was not the cae and have been off for a month now.
Today, when my doctor called, with again 3 abnormal results, he told me I needed to be retested. Usually he said, you wait 12 weeks or so in between tests. I told him I could not do that as I am out of health coverage at the end of the month. So, he told me to go back an retest at the end of next week.
I can't say that I really even have a question here! LOL I am just sort of freaking a bit (especially since I am not feeling well at all). And all sorts of things are runing through my head, the first of which is could my kids have any of this???? If I do have more than one actual genetic factor, shouldn't I be on meds??? One is bad enough, but three????? Just to give a brief history to those who may not know me, or have not seen my posts, my only other risk factors included smoking, sleep apnea, and little exercise.
So yes, another situation of the "perfect storm", I agree. BUT, 3 genectic factors???? Dose me up already!!!!! LOL
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Medical tests (and I'm assuming genetic ones are in the same boat) can vary widely depending on the lab doing them, the 'kits' they use, the 'robot testing machines' they use now in most medical labs.
"Kits"----- if the same lab changes their 'kit' the results can vary. Sometimes kits are changed to get a better one. Sometimes so they can get a cheaper one. :(
Tests are now often done via a computerized 'machine'. Those probably have tons of fail-safes in them to eliminate errors. If the lab just recently bought a new one, or re-calibrated the existing one----- maybe a difference. (Just guessing here, but it's happened)
And I do know for a fact that many medical labs now are hiring a cheaper level of help rather than a medical tech with a degree. That's a fact.
About your kids-----that can certainly be a worry for you----- but to look on a possible bright side---forewarned is forearmed. I think it would be better to know in advance rather than have a nasty problem pop up 'out of nowhere'. Just sayin'.
I'm going to start a new thread about saving medical records/tests etc. NOT a judgement against you, Jean---- but some people don't do that.
Addressing you. Jean----- I'm not sure if you live in the U.S. and what the difference might be if it's UK etc but----- I (in the States) ask for a copy of my medical tests to be sent directly to me so I get them sometimes even before the doctor has time to read them.
I also get a CD of any medical procedure, like the ultrasound for clots, MRI's or anything procedure. If I ask for them at the time of the procedure I just sign the release form and they have the CD waiting for me upon check out.
If you ask for it after the fact there could be a charge.
Some offices and some labs might have rules against that, but they're getting much rarer now. (I used to have to write on my lab requistion, myself, copy to patient and put the doc's initials under that. I no longer have to be afraid to answer my door since freedom of information has become a right. LOL)
I'm a little concerned that she's not pushing the testing. I like to read about everything... Sometimes this isn't a great thing. If I have a clotting disorder, I feel like I want to know. When I asked her to clarify she said ultimately it's my decision. She did want me to consider what I would do IF I have a clotting disorder. Would I want to be on warfarin for life? Would it be a constant source of stress and worry? And I may be deemed uninsurable. Shes also quite confident my PE was brought on by my smoking and the birth control pill. What do you think?
eec.... personally, I would insist on the testing. I understand what she is saying in what will you do if you find out you do in fact have a disorder, but, for me, I would feel more comfortable knowing (despite what I ranted about above lol). The not knowing,,,, about everything involved with this whole PE thing... is what stresses me more. Sounds perfectly reasonable to me that smoking and BC caused your clots, but I would still like to know if there was another factor thrown in there.
I plan to address this again with a second opinion from a hematologist in April.
If they still refuse to do it, then I am going to suggest that I stay on a low dose of warfarin for a while longer. I am just not willing to play with my life this way, you know?
I am too scared to take the risk of going off of warfarin.
Who knows.
Yeah, I am feeling very limited on what I can/can't do. It feels a lot like, "Go off of warfarin after 6 months. Then, well...we will just see."
It's very scary. That's probably scarier to me that anything else.
That's also what I'm waiting for as my risk factors for any other cause are very low... bit like my INR...
(Surely after this long it should be going up... My PEs were mid Jan and I've not gone above 1.7 since. They keep slowly increasing the dosage, but it's having no effect!!)
Apart from the INR tests which are taken by a practice nurse and the dosage letter they send after, I've had no contact from the hospital and have been left in limbo. All I know is that I'll be tested eventually.
Is that the same for everyone in the UK??