DVT and Saddle PE 2 weeks ago, now scared and confused

I am very interested in your diet tips...thank you for the info.  

I have been strictly vegetarian most of my adult life and love my mature cheeses and green veggies but have read in the 'Yellow Book' that they must be taken in moderation due to the high vit K they contain.  On the other hand the Warfarin Clinic people have said just to eat normally but not to consume large amounts of the vit K containing foods.  I mostly drink coffee but I do love my red wine and have been in the habit of having 2 largeish glasses every evening or when dining out.  The book seems to indicate that 2 units of alcohol are OK though. (Might have to start using a smaller glass )  The doctors said that I should start to feel better in 2-3 weeks and they seem to be right as I'm doing more and venturing out for short walks now.  I still feel very shocked but seem to spend less time worrying now.  Still can't get my INR anything like stable but I guess it's still early days, (now 3 weeks since admission to hospital and 2 weeks since discharge)

Many thanks to you, (and to everyone else who has responded), it really does help to read your comments.  xx

I have an addictive personality, moreso when I was younger, teens and twenties. I used to drink alcohol and indulge in recreational drugs, exercise and so on...

In my late twenties, i used to reflect on why I did such things and concluded, I wanted to fill a void in my life. And so, on a conscious/subconscious level for example I chose hitting a punch bag- being a young man, wanting to get fit and strong and be able to defend myself (two birds with one stone). I reached a point where I wanted guidance and looked for a trainer....

Going back to 'the yellow book', which confirms your limits for alcohol intake. I know red wine has plenty of antioxidants, and a little drink helps you lighten up after a tough day.

I have drunk alcohol twice since May last year, and following both occasions- felt it zapped my vigor. The hangovers didn't scare me or confuse me as I am experienced in this area and just go through the motions.

Because of my addictive personality, i am still looking for something to fulfil my insatiable appetite for physical, intellectual, emitional, spiritual, financial, material etc, etc, stimulus.

However, I'm finding PE puts a spanner in the works and my perfect aspirations, best of the best can do mantra, is now somewhat changed. I now expect less, as I am fortunate to be breathing and able. Albeit with occasional discomforts. I don't go out often, and so do not have the need to meet peer group expectations.

I have chosen a steady path to recovery. Whatever will be, will qi sara sara.

Atb.

When I was in hospital in 2003 with the DVT & PE my mum was diagnosed with breast cancer. mums fine now thankfully and been in remission for years but at the time it was scary.

I live in the south of England as my parents are in the north. I couldn't travel much to see her as I had my appointments down here. However things have changed now- I was in hospital this time up north.

I was off work a total of 17 weeks as I start to suffer stress as it hit me that I could have died & my mum. When mum had her chemo I would drink. I was warned that if I binged drank I could bleed internally but having little and often was ok within the guidelines.

This time round my blood was ok to be released from hospital but had started to thicken again so that I was back outside the safe zone - yesterday I got back inside so hopefully the next test will keep me in there but I know it's hit & miss to start with.

Hopefully this time round I won't have to be off work as long. I felt awful over the weekend but am starting to feel better x

Are you comfortable in giving me/this thread the reason/s for your blood to thicken again? 

If yes, have you any idea why?

its fine.

i travelled back from the north to south- about 3 hour journey in the car. I was told I was ok to travel as long as we stopped on motorway - which we did. As I'd been on injections too they told me to stop them. Blood went from 2.3 to 2 to 1.6 it's back at 2.4 as at yesterday. 

Just shows how quick it can change depending on what you're doing.

hopefully it'll stay more stable now 

Do you know the internal mechanics as to why your blood thickens whilst driving or sitting in a car? Is it a common ailment with people that have been treated with DVT/pe?

Has it been explained to you or documented by an expert?

I'm not an expert by any means but understand my clots have been caused each time by me being inactive. First time due to long haul flight & 14 hour coach trip, this time due to op on foot & being inactive. People are different & have different triggers - that's just mine. So when we drove back to Swindon (I was a passenger due to op on foot) we had to stop so I could have a move around. I was told not to travel until doctors told me I could as all medication needed to be working... I did wait but obviously not quite long enough.

I've been told today that I can do small, gentle walks but nothing strenuous for 3 months so the clots don't break off and move anywhere else- not that it's guaranteed they would but they have to air on side of caution.

I think the anticoagulant booklet is useful and I've Googled numerous sites so I can try to help my blood by doing more of the right things.

Hope that answers questions 😉

I find it interesting that you mention triggers. In the case of inactivity, if someone with ongoing history of dvt were to be in a controlled experiment- is be in seated position for 3-4 hrs- signs of coagulation should present after a CT scan.

I wonder if the rate blood congeals is different in different locations within the body- skeletal, muscular, circulatory etc..

I wonder if we have different circulatory blood flow process in our bodies- as a result of adapting to varying levels of activity, resistance, body position and consciousness.

Ie. Primary process by heart pump and respiratory system,

Secondary blood circulation process, automated by low blood oxygen receptors in valves in deep veins in legs etc...

I don't think previous example is realistic as many people fall asleep sitting on a chair or sofa.

Have you any thoughts/feelings on what I said?

I really want to beat/find a cure/prevent/solve DVT/PE.

Your best regards.

ive had 12 years between my episodes. In that time I've been back to Oz 3 times, been to NY, had 3 operations and not suffered any clots.

this time I didn't suffer DVT yet I was immobile just like I would on a flight except this time it was 5 weeks not 24 hours...so why just my lungs & not my legs?? I've no idea. You'd think I'd have DVT & not PE.

It is all interesting. Thankfully doctors are more aware of it now. Sadly does that mean more people are suffering which has meant doctors are getting used to it. At least they know though.

ta

In response to your rely last night - I'm focusing on your 5 week immobility as a cause to trigger - repeat thickning and clotting of your/our blood. This should apply to wheelchair bound, bed bound or people with broken legs - as a vulnerable group - I did not fall into that group.

Sorry if i come across 'nitpicky', so why do some women get P/E when they are pregnant. And continue with additional pregnancies knowing that PE not a favorable condition?

It seem doctors are good at diagnosing DVT/PE and the treatment.

This question is not directed to you, however I want your thoughts on following question/topic.

Why is there no drive to discover the biological (or other) processes that 'create clotting in the first place? This is very important, and more important than recording stories - looking for a pattern yet discovered.

I feel a bit anxious at times - the pains/twinges and does'nt make it any better. You've probably full or adrenalin and other hormones dealing with the immediate situiation - probably sending your thoughts racing. - Hot bath and comfy music, food and drink. Dress up - open the window, tv, garden - change environment and give your mind a rest. See/feel what happens, today. If it is'nt any better go to A&E. If A&E sends you back, or if you feel they have missed something out write to me (on here).

I will dedicate my time every night after 9pm (UK time) to read and reply best I can within 1-2hours. If for any reason I do not reply - dont worry - I may have internet problems or my computer may not be working properly.

Someone else on this forum will reply and support you.

fwiw - i'm in a similar situation as you. I'm teary eyed now.

Right - time for a decaff coffee and buscuits...Pls take care.

If you're worried about anything have you tried to phone NHS direct? Maybe they could put your mind at risk or could tell you you need to seek medical help. Don't be afraid to. Don't leave it.

A doctor at my surgery has told me to 'latch on' to a senior doctor at the surgery and always ask for appointment with them & build rapport with them so they know my history. I never seem to see the same doctor but will be from now on.

I thought last time that I was a drain on A&E but each time I we I'd ask them if there was anything I cou do myself- I was bruising huge black bruises. They told me to get a pen and draw round the bruise, if the bruise had gone outside the pen line I was still bleeding and should go to A&E. If it was within the line then it was healing.

If you're worried start with NHS Direct if you can't get help from other areas. If you still don't get help from anticoag nurses or your doctor- complain. I did when I was misdiagnosed and got a letter of apology. You might then get further help.

I eventually went to my GP as the 'twinges. 'stabbing pains' continued.  Ended up back in hospital for the day for a new set of basic tests.  They reckon that my symptoms do not indicate a new PE but I am going to have a 72 hr heart trace to check for irregular rythm.  My INR was checked again, (had only been tested 2 days before where I was found to have had a significant and unexplained drop in the humbers), and I was now even lower than the therapeutic level so I am back on the tinzaparin injections and a higher dose of warfarin.  Back to the every other day blood tests for the time being!   

good to see they are now monitoring you again.

hopefully things will settle down soon for you.

take care

For the moment, I'm on a one tablet fits all..I've got a check up scheduled for Monday. I'm a lot more able than before. I still get breathless and breathe more than I should do when doing light exercise. A million times better than xmass time.

The last time I went to hospital for check up, the doctor said I'll get a chest scan. Hopefully, he's true to his word. I could do with a level of closure, so that I can move on to the next step in recovery.

Allexie, I wish you well...

I'm on fortnightly INR checks now, not sure what 'One tablet fits all' means.

I've been to my doctors for a check up, he dictated a letter to the respiratory clinic while I was there last week and I've had my letter and heart scan date through. It's for April. Sooner than I expected.

I'm not allowed to do any exercise for 3 months. So that'll be mid April too.

Just shows how different we all are and how different the various NHS trusts are.

Anyway glad we're all getting sort.

Take care

I'm on a newish medication as per doctors recommendedation - rivaroxaban. No need to monitor or adjust diet, details on the web.

I am inclined to agree with you on the exercise front - it is very frustrating at times. I want to lash out, hit a punch bag or something- I stop myself because I might bruise, strain/ tear muscle fibres, inflame my joints. I'm caged in my own body. :-(.

My heart changed shape due to my PE in October 14, I recall a doctor mentioning I was two days away from being in big trouble. I need to find out if the clot in my chest has dissolved or is getting smaller. I can't think of the next step, I wish my life can be more productive. I've got more to give.

I've heard of the new drug. I'm still on warfarin whether that's temporary I'm not sure.

Maybe just keep pushing your doc for the referral to the respiratory clinic again.

Sounds like you've been lucky which would be scary. Thankfully you're being monitored now so hopefully that'll help you move forward.

Good luck for the future 😃

.  It means a 4 hrs + journey on public transport and in the recent snow and ice it has been a very unpleasant experience.  I really do identify with your comment about needing to know how the clot is progressing, it certainly would give some peaceof mind and how wonderful it would be to be told it had gone completely!  I have been told that as things stand I will not have a further CT scan it will just be a heart echo

fortunately for me, I live with easy access to my GP and local hospital.

I'm willing to trade my recovery/future for more research into how/why clots develop in the first case; and also exploration into alternative medicines/treatment with may prove to be more economic/holistic for people who may be more prone to clotting than others.

The NHS will benefit with new data as to the observing causes and investigation of cheaper treatment of PE /DVT/Thrombosis.

I'm gonne beat PE/DVT/Thrombosis even if it takes me another 40yrs. I owe it to myself. This will be my contribution to this condition.

I hope my doctors are proactive as opposed to reactive.