Yeah, that's a tough one. It took my husband a while to kind of get it. I mean, we're surprised by how long it takes to recover, so imagine how surprised it is for our love ones.

With my husband, it did put some strain on us, but I think he eventually just picked up on how tired I was after going back to work, like zonked out. I think for him that was an indication I was still not a 100%, that and me going to the ER a couple of times for fear I was having another PE.

I just tried to keep the lines of communication open, tried to talk to him at times in a rational, direct manner and to let him talk too. I mean, this affects everyone, not just us, so there may be things he needs to express as well.

I do recall too not always trying to explain everything to him to get him to understand. I mean, after a while, why am I doing that to myself. I just went about my business, took care of myself, met my own needs and at some point things worked out.

If your doc is supportive of you, it may help to ask your doc or a nurse talk to your husband.

HI, it's not a husband who doesn't get it but an entire family! I'm sure my 5 kids (all adult and away from home except-thankfully my 20 yr old daughter) thought that coming home after 2 weeks in hospital meant that I was well.
I just have to keep telling them how sick I am, still. I had bi multiple PE's in early July and some days I feel much worse than when diagnosed.
I tell them about support groups, how we are called survivors, in the hope that they might research. I also post important stories and pictures on my facebook page.

I did but didn't get hubby fully on board. He has asthma so he can relate to the chest pain, sob,etc. But I think he has forgotten it takes a while to recoup from this.

I am raising a 6 yr old and now a 5 mo old girls plus I work part time. I thought being a mom meant being tired but this really tops it! I try to rest when I can but that doesn't always work out. My PE's were the end of May 2013.

I know it scared my kids ( 22,20) at the time but they think mom is all better now. HA HA! I am a lot better then I was to be sure. I just finally gave up trying to make people understand how I felt and why.

You look fine on the outside so you must be okay is what a lot of people think. We may look fine but it does take time to get back to "normal" or a new normal depending on things.

Sorry I didn't really give you any helpful ideas as to how to get your husband on board. You are far from alone in all of this although there may be days it feels like that. Hang in there!

I would recommend seeing a therapist once or twice on your own and then going together as a couple. Sometimes if you are able to talk your concerns over with someone else who doesn't make you feel wrong for having them then they can help you know how to have a conversation that works with your partner. Sometimes just having a mediator there helps because they can guide the dialogue in a way you may not be able to see from inside the situation.

That may seem like a big step for this point, but it really is better to know how to talk and listen to each other now because it won't get easier by putting it off.

I had the same issues with my husband and also with my parents. None of them understood at all because it was just so unexpected. They all seemed to think that once I left the hospital, as long as I took my medicine there as nothing else to deal with. They just didn't get how hard it was to breathe for months. They didn't get the exhaustion that comes from your body trying to heal something so major and also the worry that wears you out.

It felt a lot like mental illness because physically, to others, it didn't seem like anything was wrong. I wasn't bandaged, I had no new scars anyone could see, no stitches, no casts, no canes, no wheelchairs. People who didn't know me would never had known anything had happened so people close just thought it was over when I released from the hospital. I think struggling with this was the hardest thing for me on my road to recovery because I tried too hard too fast to be okay, because I couldn't see anything wrong either.

I had the opposite problem with my husband. He has become very over-protective. Not wanting me to go anywhere and actually thinking I needed to have someone "babysit" me for lack of a better word. After 35 years of marriage I hate to admit it but it was pretty special to find out just how much he did love me. Family, friends and his co-workers have all told me he was a mess. But that has turned into him holding the reins pretty tight. I am trying to handle this by just trying to be as patient with him as I am with myself at this point. I know I scared the heck out of him and he needs to realize I'm not going to just drop dead in front of him.

In some ways I think a PE (like any illness) is harder on the family than the patient. I had no idea how close I was to death but the doctor told my husband I had a 10% chance of survival. I believe that some husbands try to act like nothing happened because that is the way they want it to be, like nothing had ever happened. Have patience with them but communicate your needs to them. That's all you can do.

Yeah, I had both. Husband didn't get it, and yet he was extremely overly protective for quite a while, like always wanting to drive me to work, and if I were late coming home from work, grilling me why I didn't call. Made me CRAZY since this was never our dynamic before the PE. But that got better over time too. Yet even now so many years later, he sometimes gets concerned. Last winter it was damp so we always had this glaze of black ice on the sidewalk. I'm a walker. I walk everywhere, so I'd be out taking the dog for a walk just wipe out. So I'd get home sometimes pretty banged up, scraped up and my husband would be all YOU HAVE TO BE MORE CAREFUL SINCE YOU'RE ON WARFARIN. Appreciate the concern but sheesh I'm human. I have a life to live here.

Seldom does do our own family realize what we are going through. This is even more true within the general public. For the most half, people know we are hospitalized for a few days then sent home. No biggie right; wrong answer......

http://patientblog.clotconnect.org/2012/02/28/psychological-impact-of-having-a-blood-clot/

Now you have your families members who feel think what you have gone through is nothing mature because they don't know the potential outcome that could have happened. They don't understand that you are truly a survivor. Borrowing from Clot Connect:

"One person is diagnosed with a blood clot every minute. One person dies from a blood clot every six minutes"

More people die from blood clots annual than from Automobile Accidents, Breast Cancer, and AIDs "combined". Yet those causes of death have a much more visible and successful patient awareness campaign. Though the month of March is DVT Awareness Month it receives relatively no attention, even less now that the creators of that month (Sanofi-Aventis Pharmacetical - makers of Lovenox) invest less money to maintain their DVT Coalition who puts forth the public service annoucements for the March Campaign. Our patient organizations are not funded to take on such an endeavor due to restricted grants and the pharmaceutical companies who could provided unrestricted grants are focusing their $$ on Atrial Fib rather than VTE as a whole (since more Atrial Fib patients are life long anticoagulant patients than DVT/PE patients).

R/Tom

RetNav said:

"More people die from blood clots annual than from Automobile Accidents, Breast Cancer, and AIDs "combined". Yet those causes of death have a much more visible and successful patient awareness campaign. Though the month of March is DVT Awareness Month it receives relatively no attention, even less now that the creators of that month (Sanofi-Aventis Pharmacetical - makers of Lovenox) invest less money to maintain their DVT Coalition who puts forth the public service annoucements for the March Campaign. Our patient organizations are not funded to take on such an endeavor due to restricted grants and the pharmaceutical companies who could provided unrestricted grants are focusing their $$ on Atrial Fib rather than VTE as a whole (since more Atrial Fib patients are life long anticoagulant patients than DVT/PE patients)."

That's rotten! But to be expected since, after all, they ARE in the business of selling drugs.

I also have Lyme disease, which doesn't kill as profusely as PEs, but makes you feel like you're going to die so much of the time and has more reported cases than WNV. Just look at this graph:

http://www.lymedisease.org/resources/handouts4.html

Back to PE----- I wonder how many people are on life-long anti-coag drugs that have 'just had PEs' vs those with AF. Anyone done any gathering of statistics? Real numbers?

Put another way----CC said:
""One person is diagnosed with a blood clot every minute. One person dies from a blood clot every six minutes""

If one person is dx'd with a clot every minute,how many are dx'd with AF every minute? I'm not putting this very clearly, but I hope you catch my meaning.

It's still rotten!

It is a tough time what we have all gone through and we need to have all the support we can get. I am very Blessed to have a husband and kids who understood what I was going through and have been there every step of the way. To help me get through this I also went to a Counselor to talk about what happened and how I was feeling about things. This was recommended by my Primary Care Doctor and I am so happy she suggested it. It was determine that I was going through PTSD (Post Traumatic Stress Disorder). It made a lot of sense I had PTSD. Sometimes it helped just talking to someone else about things. Just keep the communication going. He's probably still scared about what happened and it's easier to not talk about it. Good luck to you!
God Bless.

Huge thank you to you ALL. Just reading your responses has made me feel so much better that I am not alone in this. I will continue to keep hubby in the loop and I think feed hime some URL's...subtle hints....
I am so glad I found this support group/site!!!