I had a c section three months ago, 7 days after the surgery I started sweating,b p high, racing heart rate and cough began... I knew it was a clot, was scanned and they found clots in my left lung..was already on clexane through pregnancy so after being in ER they put the dose up to therapeutic level, I’m only on clexane,inject twice a day..the symptoms subsided although just before my shot I’d often feel the shortness of breath and constricting feeling in my chest..about a week ago the shortness of breath,pressure/pain in my chest returned..it felt unbearable and of course I thought it might be another PE, went emergency they checked my heart ect but put it down to a cold/flu,anxiety and the clots they know I already have.. but they can’t discount more clots without a scan which they don’t want to do because I’m still being treated and it’s radiation..they put my clexane dose up slightly and the last few days I’m feeling better..so my question is do others with PE experience symptoms coming and going from existing clots and why is the medical profession so shocked by someone with a PE being “anxious” about the symptoms and why can’t they just say that the clots don’t actually dissolve with treatment and the clots can still cause symptoms instead of putting it down to anxiety and also saying it’s unlikely another clot has formed!! I’m not sure iv had another clot but I wouldn’t be surprised considering the clots I have formed while on clexane although not at treatment levels. Iv chosen not to go on warfarin and my specialist plans to rescan my legs at three months and if clear stop treatment... I want off the clexane although I feel a sense of security on it, my episode had a few high risk factors so I’m hoping to get off it but very nervous about it to.
I’d love to hear from anyone who is going through this and share their thoughts and feelings and particularly I’d like to know how long they experienced symptoms and did they ever come and go.. my understanding is the clots don’t dissolve quickly so it makes sense to me the symptoms would take time to go and may return now and then. It’s a real mental struggle dealing with this condition so would love to hear your thoughts.... so sick of people not understanding the normal anxiety you feel when you think about having a PE and the long recovery!
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Sorry to hear what you are going through. I know that, speaking for myself, I *do* get very anxious when I have symptoms and worry that there is a new clot or existing ones are making a nuisance of themselves. And while I'm sure this is possible, I also know I'm mostly much better, and it is unlikely....
It took about 9 months before I became aware that I was feeling better, but yes, my symptoms do come and go rather. As I said, I rather suspect it's mostly being worried... it happened once, it could happen again! Only unlikely, as I'm on maintenance rivaroxaban. I see the consultant again in September, but I know I could easily ring up if I were worried before then.
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I think it took me about 2 months to feel better.
I am worried about getting another clot as well but one of my friends tells me I am in a better place now than I was before the clot as when I had it happen I didn't know it was happening and she says how now I know my enemy and the signs and symptoms should anything happen and I will act accordingly.
I ended up discharged from the chest clinic after I went to see them back in April which was a relief.
I said how I was frightened to the healthcare staff and they had asked why?
Surely being healthcare staff they should understand that when patients are ill or injured that they get frightened as they don't know what's going to happen to them and what can be done for them and if it will hurt.
I have just changed surgeries after having been ill treated by the previous one as what they did was they did things without explanation like when I was poorly after a pe and had gone for a sick line the doctor had gone and filled out the blood test form for a kidney function test didn't explain what it was and why it was needed no just gave me the form to give to the receptionist in the way out for an appointment with the phelbotomist who to be fair was nice and put me at ease but that's not the point.
At no point did that doctor ask me was it OK to go ahead with the test or anything which at a and e they had explicitly asked for consent which shows respect for the patient and I was upset. Blood test was fine though no problems but that's not the point.
Then I was shouted at by a male doctor there which was most unprofessional all because I had said I would think about putting advice about mindfulness into practice and I was shouted at don't think about it just do it! At this point I didn't fight back as I wasn't very well as it had been just a couple of weeks since I had by pe but that's not very nice shouting at poorly people!
Then I had received a rude phone call off their receptionist saying that the nurse wanted to see me and I had asked what did an anticoagulant review involve and got told I don't know you have to ask her that! Again no explanation of what they would be doing and why which isn't very nice in my view! I booked the appointment with the nurse who was nice and said how I was terrified of anything medical and how when things aren't explained it upsets me.
About a month ago I went to the pharmacy to pick up my prescription only to be told then the doctors had refused to issue it as I was to go for a blood test. Again no explanation or anything it was just sprung on me and I had stood my ground and had refused to be treated like that and the pharmacist had rung the surgery and had demanded that they issue me with the item so they backed down and then put a slip on the prescription saying I needed to go for a blood test and no prescriptions until I was seen and the pharmacist had explained that I was terrified but they had taken no notice so I wrote some rude words on the slip and tore it up and threw it in the bin as no I wasn't going back to that rubbish surgery and never did either!
I spoke to my friends about this and they had said did they know that you are terrified of medical things and I said yes I had explained but they had took no notice and perhaps I should explain again and they said sod them and go somewhere else which I did do!
I feel that the old surgery did me a favour when they tried to spring that test on me as it took me to counselling which I have found very helpful and you can say anything you want there and it's nice and private which isn't guaranteed with good friends or family.
I found the psychological side of things harder to cope with than the physical side and when I refused to be bullied about by that surgery it was a good sign that I was better!
Good riddance to bad rubbish with them and best of luck with your recovery.
Jo you have been through a lot and I can totally relate to your experience with drs and 100 percent relate with the fear of anything medical, I have that too now,I’m completely traumatised..I’m seeking help too because the psychological aspect is so full on and often I feel I’m not actually being taken seriously which makes me feel worse... before I had my c section I asked my ob about how he would manage bleeding/clots and he pretty much dismissed my question and said they will handle it as they are the experts... well he didn’t “handle it” because both happened and both maybe? Could have been prevented....I am so grateful to be alive!
I had rung up the hospital to cancel an appointment with them as I couldn't face going there and had been asked on the phone may I ask why did I want to cancel so I had said that I didn't want to go but had rung them to tell them so they could offer the slot to another patient rather than just not turning up as its manners to ring and cancel even if the reason is a lie!
I think lots of patients don't turn up for appointments without ringing to cancel because they are terrified.
One of my friends said how the healthcare staff need to show more compassion towards terrified patients.
Hi I’m off clexagan , after 44 days , that was injections. Now I’m on epixaban 2 mg tablets a day . Taken for 7 days . I get shortness of breath , now have a awful cough . I had DVT in left leg, and PE mass on lungs . I asked about when they would go . My answer was , they might never, but blood thinners will stop new ones. Also I was told to e Mail the doctor , and they will get back to me. I think because I’m 67 , they think I’m old etc . I hope you get better . I know how you feel
I’m on 90ml of clexane twice a day, how much were you on and did you find your symptoms come and go? I’m hoping to get off clexane and not continue with any blood thinner but will see,it’s nearly been three months and I’m still unwell so will probably stay on the clexane another three months...it really sucks but I’m hoping to fully recover and wish that for you also
I was on 100mg . No I’m not right . I have a good day, then I’m worn out, and all I’ve done is a bit of hoovering . It’s not me . Let’s hope we all get well soon .
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