My story is pretty similar, I had a post chemo CT scan and the doctor on duty came out of the CT suite looking very grey and worried, he "said I had multiple bilateral PE's and it wasn't safe for me to go home", I was then escorted to the ER. Apart from the CT scan I also had no symptoms my O2 when I was triaged was a 100% on room air.

For me I pretty much carried on as normal I didn't change anything, I still rode my motorbike, I still ski, I didn't change my diet, I never drank much so haven't changed that.

The main thing to is to try and keep a fairly consistent lifestyle and diet, the odd blip is not going to cause a problem just don't binge on any one thing. Your coumadin dose should be modified round your lifestyle and not your lifestyle round your coumadin dose. The thing that will help you the most is if you can get on to a self testing program and have your own INR meter gives you that bit more freedom and piece of mind.

You had me googling on cardiolopin antibodies as that was the first I had heard of that term. I have bilateral emboli too which are embedded and I think we all worry about getting another one, even with the coumadin.

If it were me I'd make a list of questions for the Dr and ask to be tested for the other conditions mentioned with those antibodies - just for my own peace of mind.

I would also ask for Xanax, or some other anti-anxiety medication. I know I had to and it helped a lot. I even learned to sleep again. Anxiety is so common with PEs in any event.

I also wonder if your traveling brought the second episode on. Both of my Drs were very firm about no traveling of any kind, especially flights of course. I miss seeing my grandson but I'd miss a lot more if I threw more clots in the wrong direction.

It's been 9 months for me. I'm so glad you were in the right place with the second PE and it used to annoy me when the Drs and nurses told me how close I was to not surviving the first clots but I know they were right. I'm not always good at following orders but I sure have improved since dealing with the danged PEs.

Hope you keep the board posted. Good luck and hugs. Cindy

Good evening Soulnik,
Sorry to hear that you've been hit again. Given your only 2 weeks out, its pretty normal too feel pretty awful. While everyone is different, you should see gradual improvement over time..you just have to be patient.

On the bright side, even though you feel like you've been hit by a truck, you have good reason to be hopeful that you'll recover well and be able to do everything you used to do. Being on blood thinners for life is not all that bad...consider it a safety net for preventing future clots.

I think the whole diet thing is overblown. As others have mentioned, the important thing is relative consistency in what you eat/drink rather than what it is.

At this point, I think you're initial focus should be on resting and recovering and getting your INR into a stable range. After that, consider trying to build your lung capacity and fitness back by light to moderate exercise. Obviously, you'll need to listen to your body to judge what you can handle.

I also travel a fair amount for work and currently don't give it a second thought. While it is always advisable to takes breaks for stretching, etc., your on blood thinners so you are probably less prone to clot than the average person.

From a mental standpoint, events like this can be a wake-up call and source of inner strength if you can get your mind to look at it that way. You have twice survived a life-threatening illness. It is clearly not your time to "check out".

Make the most of what you've got and best of luck!
Robert

I have SO been where you are! Sounds like how I felt after my PEs in January. Just crazy and feeling sort of overwhelmed and unable to really concentrate on anything for more than a minute or two. I've had two clotting episodes in the past (both DVTs) and handled those OK but my PEs really threw me for a loop mentally and physically! I wasn't expecting it, really...

Right now, your PEs are being taken care of. You're on warfarin and (I assume) have a therapeutic INR. For the moment, keep a steady and simple diet. You can adjust that later when you are more focused.

Right now, your focus really needs to be your mental state. Being anxious and exhausted will make everything else so much harder. Even the simplest situation can seem overwhelming if you don't have enough sleep and can't relax.

I have battled with insomnia for the last 12 years or so. Life is incredibly difficult and challenging when you are sleep-deprived for any long period of time. It drains your reserves and gets you questioning everything that goes on around you.

My insomnia came back full-force (I had it under control for a year or so) when I got my PEs and I am still working to control it now. My doctor gave me anti-anxiety meds (Ativan short-term and Lexapro long-term) to help me start to relax. She told me she would "be surprised" if I *wasn't* anxious after the PEs. I also saw a therapist for a couple of months who specializes in traumatic situations and health issues. That helped too.

When I was two weeks out from diagnosis, I couldn't even try to sleep if I was in a room by myself. It has taken a while to work past that, but IT DOES GET BETTER.

Once you start getting some sleep and calming your anxiety, then everything else will start to fall into place and it will be easier to deal with.

Some of the other posters are right, make a list of questions to ask your doctor about some of these things. He can give you help on working with anxiety, insomnia, how much travelling to do, and etc. In the meantime, take it easy on yourself and post as much as you want! Keep us posted!

It is scary! I am so sorry about your second bout. My personal advice on this is to take a day at a time. Every day, do what you can, without pushing yourself too far. You will get better bit by bit. Yoga, mindfulness, mediation all can help with anxiety if you want to give them a try. You can't exercise heavily right now, or diet extremely, but you can eat healthier today. Cut something out, that isn't good for you, I looked up exercises you can do in bed while I was recovering and did those. Don't overwhelm yourself with the future, just take of the here and now. Be kind to yourself...
Jo

Hi,

I'm a warfarin lifer too because I had a PE/DVT and then 6 weeks after coming off warfarin, another DVT. It does get easier over time to manage everything.

So, my advice would be, and I think it echoes everyone else, is take one day at a time, one thing at a time. Focus first on your recovery, taking it easy, resting. Eventually, you will find more and more physical and emotional strength to deal with the other stuff. I tried to compartmentalize things after a while just to not feel so overwhelmed. Also, I think hanging out on this forum helps. Because doctors and nurses really don't get post PE recovery, not at all.

As for food, eat what you normally eat. Let the docs figure out your warfarin around your diet. Just try not to binge foods high in vitamin K.

Also, after my PEs, I felt really panicked and scared. I saw a counselor briefly and it was a tremendous help for me. A lot of anxiety can cause similar symptoms to a PE (SOB, fatigue, etc).

Take it easy, be kind to yourself and really, just hang on. It really does get better.

Rachelle

My comment about food is with regards to managing your INR. I know you may need to make dietary changes for your other issues, but don't let your INR get in your way of making healthier choices.

I also had a saddle PE on July 16th. I travel for work extensively and was hit when I stepped off of a plane. My risk factors were Arthroscopic surgery in May, Estrogen therapy for 15 years, and air travel; this is called "Virchow's Triad". Like you, the ER doc said that she was surprised that I was alive. Very comforting. I'm still having similar symptoms that you are. Since my hospitalization, I have been on a 2Gm Sodium, Low Fat, Vegetarian diet, drinking LOTS of water, doing yoga, and walking. My husband has become a master vegetarian cook, thanks to "Vegetarian times" magazine, and we have enjoyed the meals quite a bit. I have been working at home, haven't traveled anywhere yet, but I've been told no flying until cleared by pulmonologist in January. My primary wanted me to be off work for 6 months, but we compromised on this.
I understand your anxiety; I still get some chest pain, SOB, and fatigue. I have been back to ER once since the initial diagnosis, and told that I had pleurisy.
I've started getting massages again, I walk daily with my husband, and I try to manage my pain. My docs have given me Ultram, NTG, and ER gave me Morphine for extreme pain (haven't touched the morphine yet!). I usually get by with a couple of tylenol, and take an Ultram if the tylenol doesn't work. I am very conscious of my oxygen levels, if I go close to feeling the way I did in July I pay attention.
It's a difficult thng to move forward, but I try to live life day by day. You are suffering from what I like to call a form of PTSD. It takes time to heal, and you have give yourself the time that you need. You have been through major trauma, and this makes you feel depressed, anxious, and all those things; and contributes to a lot of sleepless nights. I wish you well, and hope that you can find needed support here and at home! Keep us posted on your progress.

Thank you all for your feedback. It's just nerve wracking. I'm trying to do the "one day at a time" thing. I can't help but also feel a little silly though. I feel like I SHOULD be more "together" and not so distraught. It's just so ridiculous to get out of breath when I walk and talk at the same time or to feel tired and anxious all the time. I already take meds for depression so I'm reluctant to ask for anything for anxiety and sleeplessness.

Anyway, I'm working on it. I'm trying not to overload myself with too much information or too much stuff to do. I'm trying to remember that it will take some time to get it all together.

So thanks!