I am so sorry to hear about what happened to you and your husband. I can only imagine how horrid and surreal the last month has been for you both.

But thank goodness they figured it out and he seems to have come through unscathed. I mean, recovery is a beast, for sure, but at least he's here to recover.

I remember my first night out of the hospital, I slept like a rock. Don't even really remember lying down, just passed out. The next night, I woke up about two in the morning and felt like the clots were moving around in my chest. (Totally imagine that, wasn't happening). That was the last good sleep I got for probably eight months or so. I was convinced that if I went to sleep I would never wake up. I couldn't even try to sleep if I was alone in a room for like two months after diagnosis.

I mean, PEs are exhausting and after everything you guys have been through, I imagine you're even more exhausted on top of that. Not sleeping won't help and stressing about not sleeping will just make it worse.

I wish I had some good ideas to make everyone relax and be able to sleep, but it really will just take time. The anxiety and fear after an event like this are sky-high. Really, I had never experienced anything like the anxiety I had after my PEs. It pretty much took over my life.

I finally did some therapy, spent a LOT of time on this chat group, took anti-anxiety meds for a couple years, and also practiced some light meditation at home. It still took months for me to start to feel comfortable in my own skin again.

Hang in there! Spoil yourselves a little bit and give yourselves permission to feel scared and anxious ... you've got to feel those things to get past them. Once this all starts to seem more normal and everyday, you'll start to get your feet back under you. But it does take time. One thing that is the same about PE recovery for everyone is that it ALWAYS takes longer than we want it to and we think it will.

Hang in there, both of you and the rest of your family. Best wishes and keep us posted!

Thank you so very much for the reply. It really helped a lot. I just read it to my husband. He actually listened! He has changed so much. If you don't mind if I ask, would you please tell me about your experience? How did you find out you had a pe? What happened?

I am sorry to hear that your experiences have been so extreme. I got off easy with my recent DVT / PE experience. It was traumatic for my husband and I, but mine was caught early. By the time we learned how life-threatening a PE could be, I was already being treated and my life was no longer in danger.

We try to talk about how the experience impacted both of us. We were both filled with confusion and fear, but in slightly different ways. He felt helpless in a lot of ways because he didn't know what he could do to help. In my eyes he was the strong one. When the pain started, I was confused and in denial. I didn't think I needed to go to an emergency room. He insisted. He didn't have the denial that I did and could tell that something was very wrong.

In the days that followed, he came with me to all of my appointments. It was important for him to hear the doctors instructions too and be able to ask his own questions.

I had knee surgery 3 weeks prior to my DVT/PE diagnosis, so he was already acting as my care taker. It's been great, but for the last month we have been spending every day together, all day. The only time I had gotten out of the house without him, I was escorted by my sister. It hasn't been bad in any respect, but people need a little independence.

It was a huge step yesterday to finally be able to drive myself to my INR lab test and to go grocery shopping on my own. Soon I will start going back to my office for work (I've been working from home for the last month...when I could work). My office is 20 miles away. It seems like a simple drive, but I know we will both be nervous to have me be that far away from home.

My only advice is that you are allowed to have your feelings, and they will change (possibly many times a day). Be there for your husband, but work toward returning to a "normal" level of independence.

With regard to sleep, my biggest issue was pain when I was laying down. I spent the last week sleeping propped up. This helped me a lot. I was able to get several hours of good sleep in. For some reason, I often wake up at around 3 am. Sometimes I go back to sleep or I stay in bed to pet the cats. One night I got up at 3 am and started a blog to write down my thoughts.

I wish you and your family the best of luck!

I'm really sorry what you and your husband are going through, I know how scary and confusing it all is.
I'd felt unwell for a couple of days but I also have alveolitis and had visited a friend with parrots so assumed my shortness of breath was down to that. Monday I felt what I can only describe as a feeling of doom, my husband came home from work and phoned an ambulance. I had steroids via a drip and fluids as I was dehydrated, it wasn't until late tuesday night they decided to do a ct scan on me.

I knew nothing about clots so when they told me I had a massive saddle embolism I was like "ok how do we get rid of it" They said I needed an emergency treatment called thrombolysing but they didn't do it at that hospital so transferred me to another. 3 hours later I was all wired up and set to go, my heart was enlarged on the right side and they said if I didn't agree to be thrombolysed I probably wouldn't survive. The actual treatment carries a lot of risks too but I didn't really have an option.

My parents and husband came just before the treatment started, I remember thinking it was almost 4am and they should all be in bed, weird what goes through your mind. It wasn't until a few days later that I realised they were maybe there to say goodbye. I honestly think it was harder for them than me at the time. Anyway to cut it short this was almost 4 years ago. I'm on warfarin for life, I get lots of chest infections now and still have a lot of palpitations but the fear of not waking up has now gone.

It's very early days for both of you and the fear is completely natural. Your husband's body has gone through a hell of a lot and the "what ifs" really do mess with you emotionally. I have a great counsellor who I was able to talk things through with. Counselling isn't for everyone but maybe it's something to think about. I wish you both well and hope you get some comfort from this group (they helped me lots in the early days!)

@libbylaz4

Compared to your story, my diagnosis was pretty much an easy-peasy walk in the park.

I'd been having what I thought were minor "asthma" attacks for about three weeks. Didn't think much of them, but I knew my inhaler wasn't working. Finally got up one Sunday morning and about half an hour later, I got really bad shortness of breath (SOB). I toughed it out for most of Sunday, just figuring it was my asthma. You could hear my SOB from everywhere though ... sounded like I'd been running laps even when I'd been on the couch all day.

Went to a minor emergency clinic that night and they told me my asthma was uncontrolled and to go home, take Benadryl and go to sleep. Next morning, I got up and called my doctor. Saw her that afternoon and she wasn't sure what it was. She bounced me to my asthma doctor (right across the street; their offices were about 100 yards away) and he decided to send me to the ER 'just in case."

I walked into the ER and a couple hours later(after some debate) they scanned me and discovered multiple bilateral PEs. They were shocked. The doctor told me they weren't expecting to find any clots. I was in the hospital for about 24 hours and sent home. No heart damage at all.

The thing was, I had two previous clotting incidents ... DVTs in 2005 and 2009 ... and still no one (myself included ... I was in total denial) really thought I had clots. I became a lifer at that point and I'm really fine with that. I was probably not in the hospital very long because my husband and I have plenty of experience giving the shots at home. No reason to stay.

But my previous clots did not prepare me for the stress I had with the PEs. The clots in my leg never seemed life-threatening ... just painful. The PEs freaked me out on every level and I was not prepared for the emotional fallout afterward. I spent time with a therapist who specialized in people who have survived traumatic experiences and that was really helpful.

One other thing ... we really don't know why I clot. I've been tested twice for all clotting disorders and right now I don't have any of them. They told me in the hospital that I might just have something we can't test for yet. So, that is a possibility for you two ... you might not be able to figure out why your husband clotted. I hope you do -- answers are great -- but you might not.

Hang in there!

I am very sorry for what you and your husband have gone through and what you'll still go through during recovery. I had the PE, so I was trying to get better physically, but I do remember the worry my family went through as well. I think for at least 6 months they were certain I'd drop dead at any given moment. All the while I kept saying, I'm fine, I'm fine, quit babying me. My recovery was actually very difficult, I had massive PE and a lot of heart involvement. Almost all of the time I was in the hospital (which wasn't near as long as your husband) I spent in the cardiac intensive care unit. When I first got home I did almost nothing but sleep for several weeks. Honestly I couldn't do anything else. I wasn't even all that heavily medicated or anything, my body just needed lots and lots of rest, and I honestly was incapable of doing pretty much anything at all for the first few weeks. Fortunately for me, and I don't know why because it seems like this is different than most people, I didn't feel a lot of the anxiety that might keep many awake after the experience. However, further into recovery, after I got over the months of sleepiness and as my body began to recover, I had major problems sleeping, for months and months. And my doctors still didn't think it was an emotional issue, but ultimately I don't know what it was. I was physically exhausted since I wasn't sleeping, so some of the time I would just lie quietly in bed, figuring at least resting was still somewhat helpful, the other half of the time I just went ahead and tried to do something semi-productive (for me that was knitting or doing other crafts, or writing emails to friends), just something to kind of keep me from getting stressed out about not sleeping. Personally, I found knitting really helpful, because it took enough concentration that I wasn't consumed in thinking about my health, but it was also repetitive and relaxing, I would often do that until I got sleepy enough to actually sleep. So either of you might try a similar type activity to kind of distract your mind from worrying. Try not to get bogged down in thinking about things way down the road - what things will be like years from now, just try to take each day and be thankful for the good things in it, deal with the trials one step at a time, and just try to feel confident that you've already made it through this horrible thing together, whatever else comes up, you'll manage to find the strength you need for that too. Try when you can to give yourselves a break emotionally from it all. I know that's hard, but sometimes the simplest things really do help. In the beginning when I could't really do anything, I'd just take a long bath (which was also physically helpful for me) - I'd close myself off from my husband and sons and just spend however much time I needed in there to relax. As I physically improved, I still couldn't do much but sometimes I'd go to the library and just sit and read, or eventually I'd go for slow walks around my neighborhood. Having those times alone were for me a tremendous help.

I wish you both the best. Recovery for him probably will not be quick, but things will get better and better over time, so just try to remember that when you get to feeling down.

@libby,
What a horrible time your husband and you went through! (Understatement of the year). I can only hope that things will stabilize and that this 'new life' will become as normal as it can.

What others have written in reply to you is pretty much what I would say. I do know that hearing what others have gone through helps me a lot (I'm a lifer). Venting is helpful also. (grin)

I was misdiagnosed in the weeks preceding my first PE and I'd barely heard of pulmonary emboli so didn't know enough to ASK. (And why, oh why should I have to ASK if I had a PE----- isn't that what doctors are for? But that's another story)

I finally was so short of breath (and scared) that I called the ambulance and the ER people knew right away to test me for emboli. All quandrants in my lungs lit up like a Christmas tree (their words!).

I was in the ICU for 4 days before they released me, had to continue to give Lovenex shots myself but I was lucky---- my INR stabilized fairly quickly and I took warfarin for the 6 months.

After being off warfarin for maybe another 6 months I was back in ICU with more emboli! Supposedly I don't have any genetic factors for PE. So, as said before by TnT---- no one really knows (yet) why some people clot and some don't.

About sleeping------ would he be more comfortable sleeping more upright? Under some conditions doctors will authorize a hospital bed at home that will allow him to have his head elevated.

The message I want to send to you----- is always question! Always double check what even a doctor has told you! Make the Internet your best friend---but learn how to 'read' on the Internet because it's both the best souce and the worst source of information.

Support groups are important also. They're great for er, support. (grin) Not so much for science, but it sounds as if you need more support and you'll get it here.

Please stay in touch and let us know how he's doing. And how you're doing.

Dear Everyone, I cannot thank you enough for all the posts. I have read every single one and they have helped so very very much. A lot of the questions I have had have been answered. I am doing my best not to baby him. He is doing some things alone. Like he went to the store alone. the thing that is scary is when he wakes up so abruptly I keep thinking he is having a problem. I have read all comments and it seems like sleep disruption is not uncommon. I promise to answer everyone as soon as I get some rest myself. I am so grateful to everyone who took the time to tell me about your stories. I wish everyone all the best and thank you very much for your support. I will post a picture tomorrow that I took of us yesterday. Again all my thanks. xxx Beth

I had extreme difficulty sleeping for at least the first month on warfarin but it did settle with time, however 3 mths out I still find I wake up after 6hrs sleep most nights and am tired the next day due to lack of sleep. I have always been a 12hrs sleep a night person, so I definitely suspect warfarin is effecting my sleep patterns. My husband had a lot of trouble with the fact that i game so close to death, but he even makes death related jokes now, so give yourself time to come to terms with the awful ordeal you have been through, you will both heal from these emotional scars.

Good Morning everyone. Last night was very hard. We had to go to A and E. Thankfully after a thorough check over it was only a UTI. He had a lot of pain in his kidney, fever sweating. He is on antibiotics and hopefully that will help. I guess we kind of went into panic mode. Everything that happens to him seems scary and magnified in intensity. I am so touched by all of your stories. I am reaching out and giving hugs to you all. Please do remember this is very hard on the people that love you. I know it is much harder on those of you recovering from this. I had a question. Do any of you have sleep apnea? Because my husband does and refuses to wear his CPAP. He is booked for an appointment Tuesday to address this. Another question. Wht happens to these sub massive bi later Pulmonary emboli? Do they go away? At what point is he likely to have another scan? And do all of you know why you got your PE? I know a large percent are from DVT. But we still dont know for sure. Again thank you all, God bless you all. And I hope everyone is recovering at a rate that is pleasing. Sorry one more thing. If there is anything as a spouce that I should not do, other than baby him, I would like the advice ( itf there is anything specific) xxxx Thanks again. Greatly appreciated and very helpful

Hi there

I hope the antibiotics kick in soon and your husband starts to feel a lot better. I think many of us had a return visit to A&E, sometimes there was a reason (like your husbands uti) but other times it was because our bodies are healing and doing things that we're not used to. I know that for several weeks I was paranoid over every palpitation, it does get easier with time though.

I have severe sleep apnoea, my cpap machine is an absolute godsend. I know it takes a while to get used to the mask but it's so worth it. Sleep aponea puts a lot of strain on the heart which is reason enough to stick with the mask but it causes other issues too. As my consultant said to me, people brush it aside but it's actually a serious condition. There's nothing wrong with looking like Darth Vader for a few hours at night anyway

There was meant to be a smiley face at the end of my last post but it seems to have been eaten!

Glad you got that UTI figured out. Make sure they're keeping a very close eye on his INR with those antibiotics. Antibiotics always seem to make my INR jump around. He'll start to feel better soon, I can imagine. Most of us have a done a few repeat trips back to the hospital ... it is kind of a rite of passage.

As for the PEs, the body has to dissolve them. Sometimes it is quick (a few weeks) and other times it can take months. Not everyone get a repeat scan, just because the radiation is intense and once you hit the six month mark, any remaining clots aren't really that dangerous anymore anyway.

Keep us posted!

Just addressing the sleep apnea question:

I probably have sleep apnea. But I've refused to take the overnight sleep test (for reasons of my own).

I would NOT mind using a cpap and know I'd get adjusted to it.

But for people that just won't use it but could probably benefit from more O2---- printing out this article and presenting it to the doctor might give him/her a safe (doctor) 'out' from insisting on a cpap.

http://ajrccm.atsjournals.org/content/176/2/194
"A Nasal Cannula Can Be Used to Treat Obstructive Sleep Apnea"

My doctor always treat by Evidence Based Medicine. That means something that has been published in respected peer reviewed journals. But if I give him an alternative (also published in peer-reviewed journals) he'll almost always o.k. my suggestion.

When he wanted me to have an overnight test and I demurred I gave him that article and he was fine with just the overnight nasal cannula treatment.

I don't know if that would work with your husbands doctor or not. Some doctors that are joined at the hip with the hospital that make a lot of $$$ from those sleep tests won't budge.

Also, if your husband doesn't want a cpap he might not want the nasal cannula----- but the cannula is certainly a lot less noticeable and more comfortable to wear.

Good advice about being careful of the INR while on antibiotics because I've also been told they're some of the worst for making the INR change, but usually whoever is dosing his coumadin can anticipate the change if they know what antibiotic he's on, so they can preemptively adjust his dose of coumadin to avoid any huge swings.

I'm glad he's going to the doctor to talk about the use of the cpap, because if he's got sleep apnea, I would think that now of all times is the most important to use it. I've actually seen a study (which if I have time to look it up later I'll try) that links sleep apnea with an increased risk of blood clotting, some doctors thinking it not only contributes but can be a primary cause, as well as what was mentioned before that it causes stress on the heart. I wonder if the doctors might think his sleep apnea could have contributed to his SAC?

In terms of emotionally what you should do for you husband, in my opinion as a patient, I would say just try to follow his lead. And what he wants might even change from one moment to the next. For example, most of the time I just wanted to get back as quickly as I could to normality, but I had my moments when I felt down and I needed them to recognize those times too. My husband and I were vastly different in how we handled things emotionally - I needed to talk about it, and he didn't want to even admit there was any real problem. Now, it wasn't because he didn't recognize how bad off I had been, it was just how he emotionally deals with things, to kind of ignore bad stuff. It took us a long time and a lot of work to kind of heal that rift that my illness created. So I'd say try to talk about it if he wants to, or if he doesn't then try not to force the issue either. Of course, this is not to put his feelings above yours, because you have your own emotional experience which you need to deal with as well and I hope that he can recognize that (unfortunately many patients seem to not recognize what their families are suffering). One thing that I'd say is that it's a tough balance for the family of someone recovering, because while I tried so hard to do everything as normally as I could and I accepted very little help, the truth is (and I can recognize this now looking back) that I wasn't well enough to do everything I was trying to do. In fact, we're pretty fortunate nothing terrible happened, considering I was caring for myself and my children who were newborn and 3 years old at the time. I used to tell my husband that a successful day for me was that everyone was alive when he got home from work, and that wasn't hyperbolic. So while it's good to try to let him do the things he can, I don't think it's a bad thing to intervene if you see him going beyond his physical abilities either. But I think the best thing you can do for him is just make sure he knows beyond a doubt how much you love him, and that you're so thankful that he made it through this and that you'll stand by him whatever it takes during recovery. I dealt with (and still do deal with at times) guilt over the things which I couldn't do, or feeling like I was a burden to my family. I actually felt guilty that I had survived and had imagined that their lives would have been easier if I had just died. My husband was very kind and patient when I had those moments and just assured me that losing me was an option he couldn't even consider and always pointed out all the good things I could still do even if I wasn't the same as before.

And really just try to stay as close to each other as you can, have faith that things are going to get better. Because they will.