Newly diagnosed

[Itsbac]

Hi

Just back from hozzy with bilateral PE.

Totally out of the blue..no surgery no travel etc. Going to have loads follow up appts. Now on Apixaban.

Feel really down and weepy at the mo, is this normal?

When do i go back to work? Work in an office but as leader can get up and about as i please.

Im normally a confident person but this has really knocked the crap out of me. Haven't even been able to get a bath without a really breathless episode.

Any tips or advice on getting back to normal, or a new normal

[daisyd]

You have been through a horrible experience it will take sometime to get over it, mentally as well as physicality, I am sure your breathing will improve over time just take it in stages,as for work discuss this with your GP, don't be in too much of a hurry to get back to work, ? Just a few hours but talk to your Doctor

Hope this makes sense I have Hughes syndrome, sticky blood, so my brain doesn't always work but I know how you feel

You are now on treatment so that's good.

Wishing you well

[Itsbac in reply to daisyd]

Thanks daisyd

Not seen gp yet as all my notes are slow getting there following the cyber attack! Having a chat with HR from work later to see what options they come up with. We get paid sick at managers discretion so fingers crossed as that would take a load off my mind.

Mentally this has knocked me for six, i think because i didnt realise just how ill i was

[AlisonClark]

Hi, I went through all the same emotions as you. I too had unprovoked bilateral PE. I am now on Warfarin.

It will take time to get back to normal. I think I was off work for a couple of weeks then had a phased return. I found that it really knocked the wind out of my sails, both physically and emotionall, and it did take time geting back on my feet.

Slow and steady wins the race, as they say!

Hope you feel better soon

[Itsbac in reply to AlisonClark]

Aww thanks.

Luckily manager has agreed to pay me so thats a worry less. Im on Apixaban now. Its making me feel a bit sick but am hoping that will pass. Just had a chat with HR and been told to put my energy into getting better. They good at work really will sort stuff to make it easier for me.

[Hidden in reply to Itsbac]

Sorry did not see post above, apixiban made me feel sick and gave me a horrendous headache for the first few days, now no problems at all. Glad work is being kind, mine were too which helped.

[Hidden]

Hi, it's crap isn't it and yes it is normal to feel down, my GP said it was completely understandable, a blood clot is a big deal. I had a DVT in December, from knee to groin, but no PE. Like you was really upset and felt really down, both with the pain and the thought of taking blood thinners. I also work in an office. I took the week off as could not really walk, felt like a lead weight attached to my leg. I did walk about, I did try to do everything normally. I expect being in the lungs is a lot more difficult. I was given injection in stomach for 3 days then 5mg apixiban twice a day. I have been on them now for 5 months, may be able to come off soon, but to be honest feel safer on them. I have had the usual little cut and scratch without any problem.

[Itsbac in reply to Hidden]

Im on 10mg twice a day for 7 days then down to 5.

Everything is an effort at the mo. Had a little walk along the street today am absolutely knackered now. Going stir crazy in the house

[Wittycjt]

Did they say why you had the PEs. What diagnostically caused it? I looked at your profile, it doesn't say where you are. May I ask where are you from?

[Itsbac in reply to Wittycjt]

Im in Staffordshire UK. No idea what cause was so they going to investgate. Not travelled had surgery or anything

[Wittycjt in reply to Itsbac]

Well at least you can find a specialist there, I think, they are posted in the upper right hand corner on this page? If they find you have Hughes disease. Good luck and keep us updated how things go😉

[Itsbac in reply to Wittycjt]

Have found these pages really useful. Also the support from everyone has been great.

Be good to find cause as i have 22yo twins who will need the info for their futures. I have remembered that my mum was on warfarin for years so it may be a family thing

[Hidden in reply to Itsbac]

Hi, like you no cause was know. I had been on HRT for 10 months and they assumed it was that. Cancer was mentioned but no tests offered, I have made a nuisance of myself at GP's as just been left to deal with it, no repeat tests, no appointment with haematologist nothing. So have insisted on scans as am struggling to get cancer out of my mind, my bloods are all normal and I had a breast and routine smear test 6 months before DVT so all clear there. Have a son due to go to Uni in October and just need to get myself in a better place before he goes so that I can be there for him. I did have a phlebitis and cellulitis in the same leg a few years so leg is quite veiny and we had spent a lot of time in the care doing the Uni runs, so so hoping it is something to do with that.

[janetythomas1950 in reply to Hidden]

Hi tareena. ..I've had repeated episodes of thrombo-phlebitis since my daughter was born 38 years ago and docs believe that was the cause of my DVT and subsequent PE. What caused my last bout of thrombo-phlebitis in November 2016 was simply wearing a pair of socks that were too tight around the top....acted as a tourniquet and set off my iffy vein...ridiculous to think something as simple as that could lead to something as serious as this so a lesson for everyone out there. ..DON'T wear socks with a tight band around the top!

[Hidden in reply to janetythomas1950]

Hi, I kept going to GP with hot area on calf and swollen ankles with lines socks had been but they dismissed me, then DVT happened. I am having the same again 6 months later so will be going to GP just in case this is the start of another one.

[janetythomas1950 in reply to Hidden]

Let's hope they listen to you this time...you've got your DVT to throw at them now! Good luck. X

[kazmoonpepper in reply to Hidden]

Know how you feel the last dvt I had whilst on warfarin and it took me insisting I had a clot to doctors at first they didn't believe me however I was proved right. My inr then was 2.6 now I on warfarin for life at 4'4.5 inr. My problem is hereditary. I have 2 genes that cause blot clots I got 1 from mum and 1 frozen dad so had my son tested and fortunately he only has 1. It is scary and I suffer from depression as now am virtually house bound as can't stand for any length of time without pain as have post thrombotic syndrome so spend my time in constant pain I have to keep leg elevated as much as possible for pain is less. Now having a tribunal for esa as no one really understands the chronic pain I suffer 24/7. I'm 50 now this all started when I was 22. I worked for many years but now am virtually house bound. In time you think about it less I promise

Karen

[Motty in reply to Itsbac]

I was the same, had ct scan on chest, stomach, pelvis, mammogram, blood tests, just waiting for results now. No idea where it came from, scared the life out of me

[Hidden in reply to Motty]

I am waiting for CT scan results from last Tuesday, thinking that as they have not called good news, but them they may be busy and need to make appointments. I go from happy to sad and in between. It is my 58th birthday tomorrow, hope I do not get a bad call to spoil it. Take care

[janetythomas1950]

Hi itsbac...can't give you any answers about the future as I'm newly diagnosed myself but can totally recognise myself in your anxiety and loss of confidence. I've always been the strong one who battles through everything but I currently dissolve easily into tears, fear for the future and haven't had the confidence to drive my car yet even though I've been told I can. However I feel proud of myself that I've taken my little grandson for a walk in his pushchair today...just a short walk but "slowly slowly catchee monkey"! Also I ploughed through my ironing on Saturday...took 5 sessions of ironing a few items then sitting down but I got there. It's knowing how much to do without over-exerting and feeling that little bit stronger every day and with that hopefully my confidence will return. Good luck with your recovery.

[Itsbac in reply to janetythomas1950]

Good luck to you too.

Have ventured out in the car but hubby doing the driving on our hols.

Still getting worn out but not as breathless thank heavens

[Hidden]

Hi I had a DVT review today and am now on apixiban 2.5 twice a day rather than 5mg so that is good. I saw my CT scan results on the screen that was done 2 weeks, I had not been brave enough to call about them. Consultant said nothing to worry about, I have small para aortic nodes not enlarged by CT criteria and thickening of stomach wall? When I google it all says cancer. I am so fed up of docs saying all ok, and google saying different. I am going to see own GP next week and ask him to explain properly.

[Itsbac]

Good news on the thinners. Ive not seen a consultant yet but ended up in a &e today. Pain and breathless again . All seems ok though well at least until i get all the results back. Know what you mean about Google perhaps better we don't look!!!!