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.
So Monday I was told that because there is no known cause for the PE on my lung that I should take the Coumidan/Warfarin from here on.
This all came from some intensive blood work done when I was first diagnoised. I didn't know what some of it met so my GP broke it down for me. The one I was not sure I wanted to hear but knew what it met was "This patient is heterozygosity for Factor V Leiden R506Q mutation." I do not understand how this could be. I have had many surgeries over the last six years and never had a problem with clotting. So I am not understanding. I guess these are not test you do unless symtomatic.
I don't know how I feel about this. The worse thing is the report goes onto say there may be a 50% chance of this being passed onto my kids. Okay so in itself I know they can be tested and educated. However my worries come into play with health and life insurance for our younger kids. Our oldest son is fine with insurance but our younger son is going back to school now and has an individual policy. If our daughter is tested and positive she will be told no birth control pills. She will be 19 next month and is taking them to regulate her cycles and eventually may need them later.
Grrr sometimes things just make me want to scream. So who else is going to be taking the mesd from here on in? If you don't sharing your thoughts on this - please.
Jen
This all came from some intensive blood work done when I was first diagnoised. I didn't know what some of it met so my GP broke it down for me. The one I was not sure I wanted to hear but knew what it met was "This patient is heterozygosity for Factor V Leiden R506Q mutation." I do not understand how this could be. I have had many surgeries over the last six years and never had a problem with clotting. So I am not understanding. I guess these are not test you do unless symtomatic.
I don't know how I feel about this. The worse thing is the report goes onto say there may be a 50% chance of this being passed onto my kids. Okay so in itself I know they can be tested and educated. However my worries come into play with health and life insurance for our younger kids. Our oldest son is fine with insurance but our younger son is going back to school now and has an individual policy. If our daughter is tested and positive she will be told no birth control pills. She will be 19 next month and is taking them to regulate her cycles and eventually may need them later.
Grrr sometimes things just make me want to scream. So who else is going to be taking the mesd from here on in? If you don't sharing your thoughts on this - please.
Jen
Fortunately I had life insurance and medical insurance in place prior to diagnosis, however travel insurance is annual but being on Warfarin has not affected the premium (and yes I did tell them about it).
As for getting on with life, apart from having to take warfarin everyday and have regular INR tests I don't really let it affect me, I still ride a motorbike, I ski and do whatever else I feel like doing, I do however take whatever precautions I can to mitigate risks and I self test so that I don't have to take time out of my life to get a blood test.
I've found that the anti-coag clinic tend to want you to do nothing and be wrapped up in cotton wool, they even get very nervous of me playing golf so I don't tell then and just get on with it.
The reality is your odds of getting hurt are no more or less than they were before it's just means it can get a little more complicated if you do get hurt, so you have a choice wrap yourself in cotton wool, or take what precautions you can and enjoy life, I'm just finishing up a 13 week ski trip!!
There is some intriguing stuff about the mutation. FVLHet is a condition shared with about 6% of the caucasian population. The further north the european ancestry, the greater the prevalence. FVL is rare among asians and africans. Much is still being learned about it, in part given that it was not even discovered until 1994 in Leiden, The Netherlands.
A fortunate majority of heterozygous "mutants" never see any ill effects, with the lifetime risk of PE being 10%. Overall risk of venous clots is 7 times higher than the general population (but still rare), whereas homozygotes run an 80-fold risk. Probably there would be little impediment to insurance while asymptomatic. Amazingly, FVL appears to have negligible influence on risk of heart attack or stroke, given the different ways that blood clots in arteries vis-a-vis in veins.
Nonetheless, once a runaway venous clot situation has occurred, the residual damage and roughing-up of the vessel walls makes fertile ground for re-clotting, thence the long term anticoagulation therapy for those once stricken. Heterozygotes may be pulled off of Warfarin in some cases, but homozygotes likely would not.
I am now about a month past the news. It has not been easy getting reconciled to Warfarin for life, but there are people out there who have lived with it for 30-40 years. My one surviving parent and one full brother have been informed of the news so they can get tested, or just be informed of the risk.
I expect that over time, knowing what nature delivered will at least bring the comfort of knowing it was probably not something I did or anything about the way I lived. As for staying on the meds for the duration, if it were not for such pharmaceuticals that have been developed in the last few decades I would not be sitting here now.
I'm in the club too.
I'm not an expert, so I'm just throwing out some ideas here that you can ignore if you wish...
Is your youngest son able to get a group policy through the college/university? I'm just wondering if that would make it less expensive than an individual policy and less likely to have pre-existing condition clauses.
As far as your daughter, I was told that pregnancy holds the same risk as BC pills so this is something for her to consider eventually. I know you said she is using them to regulate her cycle now. There are some on this board that would recommend against that, but I would suggest she talk to her doc about the least risky options.
It was something I was asking about for my sister. My hematologist wants my sister to be tested but she hasn't been yet.
Check out the other discussion "Got the Results" for more info on a similar topic...
Markarina: You are an inspiration. I don't intend to let this alter my life much. Since I am in the begining stages of this I still have to get the INR checked frequently and thankfully only a finger stick. Take my meds as prescribed (still in the trying to see what does works stage). I will also continue to listen to my body and take action if indicated. I mean yes we have to be a litle more cautious but enjoy life while doing so.
More2be: I think I was tested because as they did the blood draw one tube had began clotting before it got to the lab. They had to draw this tube three times to be able to run the specifc test. Chest x-ray was I think routine for chest pains but it all led to the CT with contrast and that's when I was told there were a few small clots in my left lung. I am always used to going home from the ER but not this time. It was three days of gourmet food and blood draws and nurses and boredom. Once admitted they did an ultra sound of my legs and no clots. So that when they decided thed more detailed blood work (which was sent out) would be in order.
My understanding is that not all people that test positive for this will develope it.
Beecute: Actually he already has the individual policy in place (he has had it for over a year) so if he is tested and found to be positive for the gene I think he would be safe with his insurance. Since he is going back to school (because he can not find a job) I am hoping after school he gets into a group plan through an employer then it would not matter. When he was in school the school insurance had limited coverage so I am not sure this would be better then what he has. However now he is no longer a dependant on for us so he may be eligiable for state health care which is for those who have been turned down before or who are eligiable income wise.
I was planning on checking with her GYN (we go to the same practice) to see about her options. Since I just found out I wanted to talk to my oncologist first. I was sad to hear that he wanted my GP to follow this and then return to him in 4 months. So no help there. She is on a low dose pill and it's not Yaz. I am going to check out the other thread and see if that can help any.
At this point it has not been recommended for the kids to be tested or not tested. It will be a choice for them to make to have done or not. I just told the two older boys this evening and will tell my daughter soon. I think they need to know because it could affect them. It sure would be nice to have that crystal ball about now.
Hi, I had been off the Coumadin to have the genetic blood work done -no clot on ultrasound eaither- then got the everything is coming back negative, then got the -wait a minute-you have not only 1, but 2 genetic mutations -so how do you feel about being on coumadin for life? I am homozygus (2 genes -1 from each parent) for mthfr677 and pai-1 4g/4g. One makes me clot easier, the other makes me not able to break down clots as easily.
My children are all afflicted with at least one of each "bad" gene for the 2 mutations -from me. I was told not to have them tested until they were older -I see your children already are older - because of the possibility of insurance problems in the future -especially if they have 2 of the genes for each. My brothers and sisters all looked at me like I was speaking greek when I told them they should be tested -none of them have been so far. My Dad -who had a PE about 3 months before me- won't get tested either -he was only on coumadin for 3 months, and he couldn't drink his blessed beer -so he doesn't want to know if he is at risk -da-yes you are- he is a true stubborn italian.
Eventually -just like anything else in life-it will become a part of your routine - I am thankful that there is something out there to help prevent this from happening again.
Blessings to you and your family, Teri
Genetics of thrombophilia:
http://stoptheclot.org/natt_publications/genetics_thrombo.pdf
Info on Women's Health (Pregnancy and Birth Control):
http://stoptheclot.org/Newsletters/FINAL_Spring%20Summer%2008%20Nwsl_WEB.pdf
And for other information:
http://stoptheclot.org/learn_more/learn_more.htm