Advice on anxiety and returning to normal??

Hi Cathy

I could almost have written your post when I was 7 weeks on from my PE, (mine is thought to have been long haul flight related tho).  I am now 4 months post diagnosis of a large, saddle PE.  Seven weeks is still quite recent in terms of recovery from what I gather from reading of other people's experiences.  I too have had panic attacks - both of which ended up with me in A & E.  I find I get more stressed and anxious late at night when there are no distractions to take my mind off things.  I still get chest pains, SOB and palpitations now but tend to accept that this is quite 'normal' and try not to dwell too much on it.  After my last panic attack and admittance to hospital I did have another load of tests, ECG, chest Xray, 3 day heart trace, blood tests, (including for tropical diseases!), and I was reassured that there was nothing to worry about.  The lack of post diagnosis advice is something that most of us have experienced I'm afraid which is why forums like this are so useful.  If you are at all worried I would suggest that you make a nuisance of yourself and keep going back to your GP.  Are you not being followed up at all by a PE specialist?  Are you on some form of anticoagulation meds?  Warfarin perhaps?  If so they seem to recommend that women have no more than 2 units of alcohol per day so I still enjoy my 2 glasses of vino each evening, (*cough*...sometimes a little more).

Don't know is any of this is of any help to you but at least you will know that you are not on your own.  I am sure other peeps will be along with more constructive advice shortly.....

Hi Cathy,

i am 12 weeks post bilateral PE, and still get stressed and frightened.

I was of work 8 weeks. I still get chest pain, SOB and anxiety. I had a IVC filter inserted and am due to have that removed in about a month which i am very frightened about and I am on warfrin for life.  

My doctors also don't know why I got these clots. He recommended that I now walk at least 30mins everyday from now on to assist circulation and improve respirations.

I have found it very difficult to get information and support from the medical people. I am unsure about alchol because I haven't asked.

Just remember we are not alone

Hi Both,

Your replies have really helped and it is the first time I can compare my experience with someone else, so thankyou. The panic attacks are awful and landed me back in A and E also and like you I am trying to understand and reconcile the fact that these symptoms are panic/anxiety although very scary when they happen! Yes I have an appt early june with the Haematologist to investigate furtehr (bit nervous about that ) and am an Warfarin and go to weekly clinics there so I guess everything is being done, I just want to get better as soon as I can and in the right way?! I think I may continue with my glass of red wine a night then as its something to look forward to! I am trying to walk 30 mins a day but sometimes it feels too much and get chest tightness but will keep going!

Can I ask what SOB is?

Thanks again x

Sorry Cathy, SOB. - shortness of breath

I developed a blood clot in my lung after surgery, as I am asthmatic I mistook the symptoms as a asthma attack, luckily a scan confirmed a PE, perhaps you returned to work too early, I too worry about it returning and am on blood thinning tablets for six months, there doesn't seem to be a lot of information on this subject, either from doctors r hospitals, I was just told it happen, just unfortunate it happened to me, what happens at the end of six months ?? I am 75 so am retired. Surely someone can give. You some reassurance, try not to worry too much, take it a day at a time.

 

Hi there,

Im glad to see you are all on the mend it does get easier but it does take alot of time i had pnemonia and a pulmonary embolism feb 2014 the pain was unbearable i was left for 2 weeks as sent away from hospital saying just take codeine, finally got diagonsed put on warfarin for 6mths, up until 4 weeks i still had the pains in my back shortness of breathe etc just thought it was the healing process, my gp sent me to see a new lung constulant as she wasnt happy had a vq scan so he could see what happened last time to be told have clots in both my lungs at the moment so back on clexane injections for 6 mths! It seems it never ends no medical reasons for them just one of them things, take things easy and just get them to scan your lungs to make sure they are totally gone but you stop meds, scar tissue causes the same sort of pain too!

Hope you all get better soon

amanda x

Yes, one of my concerns is that they will stop the treatment without knowing if any additional clots have formed. Will try and get another scan if possible I think? Feeling very sick and dizzy today....another new symptom. X

I had multible clots last year and after a few weeks had a really a bad time with post traumatic trauma which GP said is normal very scary I thought I was loosing it I was sleeping in my cloths I am now still on tablets but still 

not back to normal and on warferin for the rest of my life I am 71 x

Hi Cathy

Sorry to hear you too have PE. I had DVT & multiple PE in 2003, put on warfarin for 6 months and from then on had to have heparin injections when I flew. I had no further problems until I had an op on my foot in Dec 14. I was given 3 weeks heparin injections instead of 2 because of my history. 5 weeks in I found I was getting palpitations & out of breath....I had bilateral blood clots in the main pulmonary arteries. I was put on warfarin again but over the last 6 weeks my INR has slipped out of the therapeutic zone, I also started to feel different in my chest so went to A&E on Wednesday- my left artery is enlarged & my clots have either not settled or they have returned.

Sorry to waffle... But each time I've listened to my body...unfortunately the doctors are right. I've been taken off warfarin now and put on rivaroxaban. I'd started to do mild exercise but have stopped again, just for a while.

I

When I had my foot op and this diagnosis I was off work for a total of 3.5 months. I've been back 5 weeks now. There was no way I was ready before this.

I'm still trying to work out what is normal & what is dangerous...unfortunately until I learn the NHS will see a bit more of me.i don't like it but there isn't much else we can do. I'm in rivaroxaban for life now so I have to learn what to look out for.

Hopefully we'll get used to it soon. Hopefully you'll be taken off the tablets after 6 months. It will get easier- it did for me last time- but honestly the best thing you can do is listen to your body you know it better than anyone.

Take care x

Cathy, Like you I had a PE which came out of the blue on Jan 17th with no obvious risk factors - they found multiple infill emboli  in upper /lower lobes in my left lung after I woke  up with pain in my shoulder and rib cage when I breathed in. I thought I had pulled a muscle and  I left it for a day before my wife insisted that I went to local A&E (she thought i was having a heart attack) . A chest x ray and d -dimer test confirmed I had an  'idiopathiic PE ' and was put on Rivaroxaban. Over the following  4 weeks I underwent blood tests,  prostate (psa levels ), chest, abdomin and pelvic CT scans , echo cardigram and a cystoscopy of my bladder  all checking me for occult maliginancies somewhere in my body and they found nothing. As an FYI , I was told by the consultant that approx 10% of idiopathic PE's are cause by maligancies somewhere in the body that haven't been diagnosed yet and that which scared the sh*t out of me.  Anyway the pain from my PE was completely gone within 3 days but the whole episode including all the tests  they gave me was a huge wake up call because no one could tell me why it happened to me.  So i took it on myself to change my diet, I reduced my calorie intake , upped my exercise regime  and doing 10-15 miles /day on my bike for 4- 5 days /week. I'm now 4 months on from my PE and I've lost 1.5 stone and I feel really great now both mentally and physically - but I still have that constant  nag in my mind as to why it happened to me. I have come to accept that whatever will be , will be and I just need to get on with my life now.          

PS - Im 59 , never smoked , not overweight,  active and have led a healthy life stye and never been in a hospital utill I developed a PE -