New member with multiple PE , intro and questions

Chest and lungs
1

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

2

Hi there

Sorry to hear about you being so ill. I too am on rivaroxaban for life now and have been since January when had my large saddle pe. I am still off work after 3 months. I still cannot do much exercise as I get breathless and as my job is physical, I can't go back just yet. I nearly died as a result of mine and am still trying to get my head round this. It is life changing - I have changed my whole diet as a result as I was quite heavy. Losing weight is helping and I feel better in myself.

I hope your still not getting too much pain. I do now and again in my leg where the dvt was and in my chest but my consultant said that being on Rivaroxaban the chances of another clot is highly unlikely which made me feel better as any pain I had I would panic.

If you have any worries at all then don't hesitate to go to your docs. That's what they are for - to help you.

I hope this helps and you feel better soon

Carol smile

3

James, Hi.

I'm sorry to hear you had multiple PE's. Mine were found five weeks ago. I thought I'd go back to work shortly afterwards but I decided to take a bit of time off to help my body recover.

I still haven't gone back yet but I,am looking to do so in a couple of weeks. If you are able to take more time off I would advise it. Everyone's position is different and I know not everyone can. In my case, having the extra time off has been useful as my employer has actually realised I was very ill...

My PE's have taken a while to shift but I have noticed improvements in the last week. I also have a clot in my calf which doesn't seem to want to unblock.

I have found that getting as much information as possible about my condition has really helped me deal with it mentally as well as being able to have confidence about physical exercise.

I think you should have been referred to a haematologist or a clot clinic. It might be worth asking your doctor about this. I would pester my doctor a bit.

if you can work out why you had your PE's then you are more able to reduce the risk in the future.

and yes, go to the doctor whenever you are worried.

you mention leg pain, did you also have any clots in your leg? If so you may have to change your exercise to cater for this.

 

4

Hi both of you , thanks for your advice and concerns , I have no follow up appointments booked until 3 months rivaroxeban check. I have no pains anywhere at the moment , and apparently having factor v Leiden makes me more susceptible to clots so may be on it forever . Just want to gauge what normal is and find out as much info as possible

Thanks again

James

5

Hi James

So glad you found us....I have found this site and its members a great source of support and info since I had my DVT/PE just over a year ago.  I'm now a lifer on Rivaroxaban and I'm finding that it makes me light headed and dizzy at times tho my consultant says that it is not a recognised side effect, (my GP disagrees tho as does a lot of research that I have undertaken myself!).  I still get chest pain and leg pain even after a year but hey ho...I'm still here!  The best advice I can give is...not to be afraid to make a nuisance of yourself and get checked out if you are at all worried about any symptoms you have....it's not an easy path us clotties tread.  In the meantime try and keep as active as you can without pushing yourself to extremes.  It's probably gonna take time to get back to anything like normal so be kind to yourself!

With best wishes

Alexandra x

6

Hi Steve

I think your advise to go to a  haematologist or a clot clinic is excellent.  I wish someone had told me to do that when I had my first clot and certainly when I had my second one.  I don't even know what  or where  a clot clinic is but it sounds like great advise

What I do know is when this happens to someone they should be very proactive and  be their own advocate.  

 

7

Hi James,

I would be careful when coughing and being dizzy. Your a big fella, falling or stumbling over is best avoided, you might squash someone, or twist your ankle or hurt yourself whilst breaking the fall.

I ain't a dietician, but you can't go wrong drinking more water and veggie soup (if you can take vegetables- research vitamin k & your meds).

I have high internal & external pain thresholds, which maybe out of sync with what my heart muscle and lungs can reasonably withstand.

You can not use pain as a lead indicator for asking for help. Any pain, in you leg or chest, strange thoughts & experiences, within the first 3-6months or upto two years, go and see your doctor, get it checked out, and insist your doctor send someone that 'knows about living with clots' round to talk.

Every year in the UK up to 60,000 people die from clots, 20,000 in hospital. We are amongst the survivors. It is not a simple case of being in serious trouble one minute, and the next, all is fine.

Once you have a clot, the chain of events is predictable (human nature + physiology + pharma), I would say almost guaranteed paths & outcomes.

So health and safety first, stay hydrated, take it steady, let the medicine do what is intended, monitor side effects (I bleed at the gums- so constantly reminded about blood!) & follow the clot recovery plan/guidance. Go to your gp + A&E, whenever you feel unwell- you could be as tough as nails, and clots will still get the better of you.

Trust me, I know what I'm talking about.

For what its worth, it's taken me more than two xmas's for clots to really sink in, I'm not looking forward to the next one.

8

Once again thanks for all your help , it's quite strange as I woke up this morning with a cough so bad it made me retch, and a small chest pain , probably from coughing so much ! The cough is like an always there tickle if that makes any sense , but got very irritating first thing today.

I guess in my head I should be worried , but I am kind of almost in denial, almost like okay that's the drama over back to normal ho hum feeling in my head , and I'm not sure if that's a good or bad thing !!

Certainly makes your head all over the place let alone heart lungs etc etc ..

Not sure I am dealing with this well , or right if there is a right way, just all seems very strange and as if it didn't happen now even after 2 weeks nearly.

Am I over thinking this ?? How do all of you actually think or feel?

9

James, where in the UK are you? I'm in Essex and the A+E and hospital care was extremely poor. I was turned away from both A+E, the hospital and my doctors several times and it was only when I collapsed that I finally got a CT scan. It sounds like your experience in A+E was better.

I also have Factor V Leiden and a fairly poor family history. 

I'm on the tablets for life as are both my sons. 

I do wish you well with your recovery. 

Rest, eat sensibly and exercise as much as you feel able.

There is a UK Factor V Leiden Face Book site which I have found useful and there is information on the Thrombosis UK site.

let us know how you recovery goes and as the others say - stay with us 😀

10

Jimmyb5374

if you are really bad, you wouldn't be writing stuff about your health, heart lungs or your head.

11

I don't get you ? You mean I am not that bad or what ? I don't feel that bad , just the cough and the dizziness , which I am guessing lungs working harder and side effects of rivaroxeban ?

I am just trying to make sense of feeling okay but having had a life threatening situation less than 2 weeks ago , ( consultants words not mine) like I said does a bit of a number on your head !

I hate the Internet sometimes it's very difficult to make out someone's tone if you know what I mean

12

jimmyb5374

you've got to try and restrain your emotions. You'll be reading & watching all sorts of stuff on the internet; even the smartest doctors know the interweb wasn'nt invented yesterday.

And so, curiosity about your condition is understandable and predictable. Doctors get it wrong and also right. That's why employees at the NHS & Private medical are covered by insurance. It could be construed, the insurance companies support and possibly fund NHS support services such as PALS/PETS and Healthwatch (i may be wrong- i apologise).

The public national insurance NHS policy could even underwrite the terms, conditions and remits of each NHS employee's role, upstream and downstream of the CEO, his/her responsibilities, with strict adherance to NHS founding principles, and trust bestowed upon them upholding their Royal appointment.

We are afterall subjects, commoners and privileged persons. Let's not forget one in four people die from either a stroke or heart attack. This will be a headache for number crunchers - especially those that have never had a heart attack or stroke.

Moreover, there should be proactive research into DVT/PE/VTE this condition as each positive nugget of information could save lives and keep NHS staff in their jobs.

Try not to hate anything, there's more to life than hate & other emotions. Looking forward to Easter Holidays.

 

13

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

14

Hi James, I still had a cough while convalescing in the first couple of weeks. I also had a cough for two months before being diagnosed. I think it was my body reacting to the clots in my lungs. Like yours it was a dry cough (the doctor termed it "unproductive"wink 

Don't forget that your Rivaroxaban does not clear the clots - it just stops you getting new ones. Your body will deal with the clots and that could take a little time. It was only two weeks ago that you were in hospital. Your body will take some time to recover.

As for how I feel? I've gone through the whole emotional spectrum, from being elated for still being alive, through to being quite depressed that I'm still ill and that I may never get back to my previous fitness levels. I feel more mortal than I did.

All I can say is that today I feel really well, I haven't got a headache and my cough is infrequent. I don't feel ill after eating and I can bend over and pick things up off the floor without feeling ill. I'm walking up the stairs without effort and although I worry about my leg, my energy levels are improving and so is the weather. I went out and watched all the runners finishing our local half marathon this morning. A few of the runners were quite inspiring and obviously dealing with their own health issues

Stay positive. I find it useful to remember how ill I felt when it was really bad. It reminds me how far I've come and keeps me exercising and eating healthily 

Steve 

15

You know I never knew that my old clots might not have gone away.

When I was it the hospital they did a Bust clot infusion on me and I thought that eliminated the existing clot or clots.  Immediatly after the bust clotting procedure I felt 100% better.  Before they gave it to me I couldn't even drag myself out of the bed to get on the gurney to be taken for tests.  at first they thought I might have been having a heart attack.  The second time I was in the hospital for another clot they did the bust clot rapidly and the 2nd time they told me I would have to stay on  coumadin probably permanently.  Now this new doctor, who is  a Cardiologist and a Pulminary Hypertension Specialist thinks that my breathing problems is from a risidual  clot or a scar from the clot on my lung.  He will be doing a Lung Scan to try and verfy that.  He is discussing a Vacumn procedure that goes down into the lung and removes the clot or the scar by vacuming it into the  Vacumun instrument and breaking it up and  removing it by vacumuning it out,

16

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 !

17

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...

18

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 !!

19

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.

20

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 !!