New member with multiple PE , intro and questions

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Hi there , so I am new , 42 year old chap in the uk , with factor v Leiden and 11 days ago I went to a & e with chest and shoulder pains and shortness of breath , with a cough , and they basically didn't let me leave !! My d dimer score was in excess of 6000 and I was told I was to sit on my backside in hospital and be monitored , and even walking across the ward took my sp02 levels to 82 from 93 . Anyway make a long story short I am home now , just basically instructions on how and when to take my rivaroxeban and to go steady . I was signed off work , due to go back next Monday. A few questions as doctors just say everything is normal and leave you to it.

I have a dry cough which leaves me light headed and dizzy , asked doctors who said its to be looked at in 4 weeks unless it goes away?

I am quite heavy at 270lbs or 19 some odd stone, but this has made me think I must do something about it , but no idea if or what I can or should do?

Should I bother the doctor if I get any little chest or leg pain , or are there best things to look.for ?

I am reading through the forums , but any help would be great , when consultants say life threatening and lucky to be here you tend to freak out and want to do things right !!

Thanks

James

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  • Posted

    James,

    I wouldn't worry too much about some of the posts.....not all of them are rational. Most on here are great...just the odd one.

    It will take a while to adjust to your new self and new regime and yes, you will get coughs, aches and pains. If any pains are severe, go to A&E.  In the words of my local A&E "that's what we're here for". Same with medication - if you are having problems, seek help.

    Now they have caught the fact that you have factor v leiden, you should be fine. If you decide you want to slim down too, there is every likelihood you will be fitter than when you went in. Very much a personal choice though.

    All the best Peter

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  • Posted

    Thank you all , I am reading the sparse info there is about pe aftercare , seems to be mainly walk a lot and talk to your doctors if anything happens !! I need to slim down , I am going to be doing a slimming world plan with the Mrs , need to lose at least 4 stone / 56lbs to be healthy ish weight of 15 stone 5 , for a 6 feet 2 inch guy should be reasonable !

    So now how to exercise without doing too much exercise , and not throwing clots around everywhere ?!

    Thank you so much all , this forum needs promoting as its the most helpful resource I have found so far !

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    • Posted

      Hi Jimmyb5374,

      If i were to have clots from fresh, with hindsight, I would do nothing for the first three months, just drink more water, vitamins etc and good diet - calorie in - calorie out. Start normal walking, no weight assisted, rucksack etc...for one year.

      Year two - do lights resistance band exercise - tone up....This will allow, diet and medication to do its work....So after 18months, you could gently increase muscle density/mass - and burn more calories at rest...

      Then after medical checks, lift or push light to heavy to strengthen your central nervous system...or where ever you want to take it- You cant go wrong walking...

      I keep forgetting i have had strong internal and external pain thresholds...ulcers, sprains &  bone breaks.... when younger - like a rugby player...

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    • Posted

      Thank you for that , I was when younger kind of like that , broke both bones in right leg , recovered very quickly , played football , tennis , cricket and badminton till mid to late 20's, but I think age has caught up with me in a big way !! I smoke , well now trying to knock it on the head totally , have an e cigarette now, got to be better for me , diet needs major sorting , so I guess the advice online is right , walk everywhere as much as possible and go from there !

      Maybe this sounds odd but it's not like being ill physically , there is nothing to see , it's all just listen to your body I think and see what occurs .

      Again thanks , it's an unsettling time , I'm coughing about every 30 seconds , sometimes enough to feel hot and space out dizzy, the doctors didn't seem concerned in fact said i need to see how it progresses for a couple of weeks before they look into it so I guess it must be " normal"

      See how it all goes I guess !!

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    • Posted

      i used to think I had pound for pound training potential when younger, had the clots and then went through mid-life rebound -

      i'm older now, and suffered because of my own nature and lack of information plus load of other things....if you have it in you to be sporty.., you always will. Just take five years +/- out... and carry on there after...

      up to you.

      take care.

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    • Posted

      Thanks for the advice , I am going to do slimming world diet , unlimited fruit and veg " free" towards aim, lean meat and fish, no fatty meats , very minimal bread intake , new potatoes and wholewheat pasta . I hope this will help on weight and circulatory aims, have multi vitamins to hand the one a day type, need to kill all cups of tea and coffee apparently , no fizzy drinks just mainly water fruit juices !

      It's going to be a big change from your average middle age office management type routine but I can't fail the penalty is potentially much to high , I need to see grandchildren yet !!

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  • Posted

    And another worry to add, is that I have a android smartphone, and downloaded a heart rate monitor app.

    I have a previous diagosis/condition - an irregular heartbeat from when I was in my teens. My medical records should verify,...you get used to it.

    Since having vte, my resting pulse rate over a period of days & day to day life is anywhere from 50-100+ BPM!

    You can't make it up, and it's real, disorienting AT REST!, you can lose your balance, and become withdrawn and isolated again, it happened to me as early as last week!, after I got a phone call from Health watch.

    I obviously go straight to A&E if/when things get on top of me...

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  • Posted

    Had trouble with my last post...it seems not to have posted. I am in the US and it is interesting to read about the different treatment I have received than most of the posts I have read.

    ​I had bilateral PEs after a surgical fusion. When I was diagosed the care I have received has been exceptional. I saw my pulmonologist (asthmatic) once a month for three months and now every three months. I see a hematologist every month for extensive blood work. I was originally diagnosed with a CT scan and have since had another. I had a VQ scan four months post diagnosis because I was so short of breath.

    ​My hematologist said he gets frustrated with doctors because they don't take it seriously enough.

    ​I at first felt so great to be alive. Then the anxiety and depression hit. Just out of the blue. Like waves. This was two months post diagnosis. Apparently that is not unusual. i ended up gettig on an anti-depressent because I was having a hard time coping.

    ​My dad died 25 years ago of them after surgery. Now I have them and all the genetic tests are negative. In his case, the nurse didn't tell the doctor he had coughed up blood and then he died the next day. In my case the nurse didn't give me my blood thinner soon enough after surgery. But apparently it is very rare to get PEs from a cervical fusion.

    One thing I learned with all my health issues of late is that we need to be our own advocates. Gone are the days of the family doctors who know us and take time with us. Who really truly cares about us as people.

    ​I am so fortunate to have a top pulmonologist. She was the one who sent me to the hematologist. She gets all my blood work and test results.

    ​Be proactive. Ask questions. Try to relax and rest as much as possible. It's taken me almost 6 mos to start feeling better.

    ​Take care.

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    • Posted

      I think what you said about being your own advocate is so important.  When I had my PE I knew nothing about it and the doctor did not tell me anything,  I was never sent to a pulminolofist, or a hemotologist and have been breathless for years.  The hospital and doctors should give you print outs of information on PE and tell you to become famliar with all aspects of your condition.  You were fortunate in having a pulminologist and the hemotologist .   Everyone who has had a PE should be

      referred to these specialists.  I am also in the US   

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  • Posted

    Hi all a little update , went back to work for 3 days , was getting exhausted straight away, and coughing so much I was retching every time . Spoke to doctors and he said I am lucky to be recovering as looking at my scans they are " fairly spectacular bilateral clots" in his words , and I need more time to let lungs recover .

    I feel like a bit of a fraud as nothing outwardly wrong with me , and I am hoping I can be back on my feet soon , got a review in 10 days .

    I know we are all different but how long did people take to be back to work and fully functional , or have you not get there yet ??

    Thanks all

    James

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    • Posted

      Hi James,

      Sounds similar to mine - I had a lot of large clots in both lungs. Months 1-3 my breathing wasn't brilliant, but OK. Oxygen sats were always 98%+ though. After 4 months (almost to the day), I felt a significant improvement over a week long period. After 6 months I thought I was back to normal.....until I climbed a hill. So still a bit to go, but I guess progress is good. 

      In my view, you are way to early to be looking for anything approaching normal. Best thing for me was gentle exercise (walking) and don't push past comfort level.

      All the best

      Peter

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  • Posted

    Hi James

    I too was told I was lucky to be alive after a large saddle embolism.  It was about 3 months before I was anything like fit enough for work.  My pulmonary specialist said to expect 6 months to get back to full fitness but my GP said in his experience it would be more like 18 months.  The GP was right!  I'm now 15 months on and still don't feel right yet.  Sorry, I don't think this is what you wanted to hear!!!  But, as you say....we are all different.

    Best wishes

    Alex x

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  • Posted

    After my TPA (the clot buster) in the hospital I felt really good and normal. It was only after a year or so that I began to feel breathless and that breathlessness has continued and gotten worse.
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  • Posted

    I had a conversation with my wife tonight , and the realisation I am actually lucky to just be here kind of hit me , and that this isn't quite the " well that has happened now back to normal" that I think I had fooled myself into believing it was .

    Feeling a bit despondent now , as someone who has worked about 15 hours a day for the last 3 plus years , caring for others less fortunate than me it's very odd to have to be doing nothing much , and that actually I am in a worse state than most people I cared for .

    Makes your mind so funny things I guess , must be another phase of the whole thing

    Thanks all for your replies and information it's slowly helping me make sense of all that's happening

    James

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    • Posted

      James,

      That is also normal and (I think) happens to most people post PEs. I believe one of the symptoms that happens at/before PE is acute anxiety and it seems to stay around for a while afterwards in less acute form. 

      Believe me, it will disappear after a bit.

      You really are in a good place now, as the medication will keep you safe. Honest guv :o)

      All the best

      Peter

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