I am wondering if there is anyone who might be able to make me understand a bit more about marfans.
My husband to be has been diagnosed with marfans and has suffered through alot in his lifetime, Not all of which I completely know about.
His family have been through a terrible ordeal with him as well.

Today he went in to have a basic battery change for his pacemaker and they found that he had wires attached to scar tissue and ribcages and the whole lot.

I did not go to the hospital with him today. His mom took him and his younger brother was there with him this afternoon. I was too scared. I did not want to deal with it all I did not know how to deal with it.

He is my world and I do not want him or his family to hate me for not going today but I could not bring myself to do it.

We are immigrating to Canada next week and I fear the worst that something will happen and I wont be able to cope or that he might feel as if I am not strong enough.

We are due to get married next year and have already had a miscarriage. I want to have a family with him but I can not even cope with a simple battery change, because nothing is every simple with any surgery.

I don't know much about marfans or what he has been through because I moved to england to be with him not knowing about his condition at all (even though I was with him for 8 months in canada) and since then he has stopped taking his medicine (once) he has had pains and had very low INR levels (once) and now this....

He is stubborn and I just don't know how to make him listen that he needs to take care of himself the best that he can so he will be around longer. I know that sounds selfish but I just can not bare the thought of losing him!

Are there people who a partner can speak to in Canada? Primarily Toronto? As this is where we are moving too in the first instance.

Thanks

Do you know much about marfans? Having marfans can be scary but its possible to live a happy normal life with it.

Your boyfriend needs to keep on top of his health. He needs to get yearly cadio checkups with an echocardiogram. There is new reaserch for Angiotensin II Receptor Blockers(ARBs) in the reduction of Aortic root size. I myself have shrunk and stabilized my aortic root using ARBs. HE needs to make sure he is taking his medications and not doing things to hurt his health further.

If you are planning to have a family you need to think about possibly passing marfans down to your kids. There is a 50% chance your kids could get it. I believe there is now fertility treatments that allow you to test for marfans in your boyfriends sperm and then select the "non marfan" sperm to fetilize the egg. But I just remember hearing that in passing. I dont' know much about it. Passing marfans down to your kids is a real issue and you need to discuss it with your boyfriend.

I suggest doing some research on marfans. I've always found knowledge to be power. The more I know about marfans the less scary it is. Again, people with marfans can live normal happy lives. They just have to take care of themselves and know about their condition since most doc don't.

Good luck and just try and be there for your boyfriend. Being scared and not being there for him is worse then actually dealing with it. Its not a scary as you think it is

I"m not in toronto but if you want to chat you can use MSN. My email for that is This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

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