PE found 10/31

Should I continue to walk until I'm short of breath? The clot is huge and doesn't take long but I know being still isn't good either. So many fears about the unknown and what is normal.

Hi Windy8000,

I can't give you any form of advice. All I can do is explain some of my experiences with recurring dvt, or, PE/ VTE the whilst on xarelto.

Things are not as before, my body (conscious & subconscious) was and is coping and reacting to clot/s in multiple sites in the body. At the time, i had no control over how they got there or if any more will crop up anywhere else!

This is very tough to deal with.

I started with a confirmed DVT,,PE in my right leg in May '14. I was given one dose of LMWH in my stomach and prescribed xarelto. I recall a day later going to hospital and having a r leg ultrasound + chest x-ray confirming DVT. I was sent home. Yhe next day, I called 999 and was attended by paramedics and taken to A&E, they kept me under observation for half a day, then they sent me home with some co-coldamol. I was bed bound for 10-14 days, and then the light/upper chest breathing pains started to subside. I was homebound thereafter most of the time, had very low energy and took things very easy, I was 40yrs. After three months of anticoagulation, I thought I felt ready to do some body weight exercises and started doing push-ups 10-20 a day. I was prescribed DVT compression stockings about a month later. By the fourth month I was feeling a better and did some garden fence installation, digging post holes in hardsand-stone/gravel conditions, manual handling 8ft concrete fence posts, and removal of a tree stump by hand sawing & brute force. After four days into this job i went to my GP and A&,E and my life was saved. I had a massive pulmonary embolism somewhere in my chest. I have the CTPA slices/scans and medical prescription/administration profile for reference.

Learning from my experience, If I were to relive my last two years, I personally wouldn't walk unless I had to (this includes housework!), especially within first few months. I would let my medication and blood, clot friendly diet, adapt very slowly.

By six months, I would be tempted to go swimming/just be suspended in water and move around gracefully once a week, (mobility & funds permitting). After the first year, I would be tempted to go for 30mins leisurely walks supported by two hiking sticks (this helps circulation in the arms as well as legs ; a couple of times a week You may feel you can do a lot more- pls take it steady and allow sufficient time for the clot to dissolve naturally, with good diet, plenty of hydration whilst on anticoagulation. After 18months maybe cycling or more walking. Good diet, hydration and rest should be your priority- then try and integrate into your day to day life.

I've done more demanding and alternative exercises after one year of 1st DVT, and have ended back in A&E with recurring clot relapses, each clot, as you know could get you in serious trouble.

Pls remember everything I've written tonight and make it your own. Also, a problem shared is like less of a problem.

Take care

Thank you. You helped more than you know. I just turned 61 and although she (Dr) says it comes from Deep vein we can't figure where. I had ultrasound 2 weeks prior to finding the one in my chest and my legs were clear and they are again.

I am obese so the compression socks don't work for me she has me wearing exercise spandex a size to small for compression. That is working. And Very long shirts lol.

I can work around the house but I can't bend over if I do I start coughing and gagging and loose my breath. I have to do everything slow but I can do it. Getting my pants on I'm out of breath. The clot will take about 6 months the Vascular surgeon said to get absorbed back into my body. The blood thinners help keep from getting new ones.

I worry about what is normal and could I die from this now. I lost my husband 2 years ago from a brain bleed 5 weeks after they put 5 stents in his heart. We were married almost 41 years.

I presume you don't take alcohol or recreational drugs. Everything you are thinking and experiencing is normal. As a result of my DVT/PE/VTE experiences, I've made peace with myself.

I do think and believe 61 is a very young age, there are many well known centennials, social clubs, hobbies and interests. Our Queen gave us the NHS, I can't see her wanting to pack it in...

I'm learning, practising and trying to remain motivated in rejuvenation of my cells, tissues and internal organs, skin and bones, through diet, hydration managed exercises. This is a new frontier for me.

Have you seen the film Jurassic Park?, story goes something like this, A scientist managed to extract the DNA from dinosaur preserved in amber/tree sap.

With the DNA, the scientist created an environment for a dinosaur to be born. .

I believe with positive guidance, faith, rest and good hydration/nutrition, we can rejuvenate our cells and tissue, replenish natural qi energy stores and look forward to getting older, new hobbies, travel and have a renewed appreciation of life.

Just reading and writing, you can connect with people on some level until circumstances present you with chances to meet people and/or appreciate flora and fauna.

They found blood in the urine today and white blood cells looks like a sudden kidney infection. Painful back. Scary. Every ache and pain scares me now wonder how I got this?

Have you looked at the side effects leaflet with xarelto? Are you on a correct dosage for your body. You mentioned that you're obese, (I think body weight/bmi is a strange metric to gauge health).

I've found, depending on my diet, my blood may get thinner whilst taking the same daily dosage of xarelto.

I try to keep good oral hygiene, I believe my gums are in good health. Recently, I've been drinking a tumeric, ginger, cinnamon, milk & honey tonic. After a few days, I wake up with blood in my mouth. If I push my tongue against my gums, they bleed.

I stopped drinking the tonic for a couple of days and the bleeding subsides. I increase my fluid intake and eat simply. I'm gonna continue loading and unloading the tonic to be sure of its effects.

I think you're awash with valid anxiety hormones. Aches and pains can be localised and identified. Bleeding from the kidneys sounds scary, has it ever happened to you before?

We got some results back from some of the blood tests looking for triggers for where my clots could have come from. Looks like my lupus profile is positive and I may have RA. I go see a specialist next week.

I had my impacted tooth taken out last week, two days without noac, then dentist. It took about 6months from my tooth hurting til extraction!

I've personally reloaded on my tumeric, cinnamon & ginger tonic (my risk, my life) and also started taking a Japanese supplement nattokinese (last 10days, my risk, my life), in addition to a heart health w/fibre diet + lots of water 2-3/4 litres a day&night. It means getting up in the middle of the night going for a pee, and another cup or two of water.... something to do, good for circulation...

I've also changed my adhoc exercise routines & progression- after: 18mths chronic PE, 24+ mths from massive PE, 30mths from DVT&PE, and big and small heart & lung wobbles in between and throughout, most recent was in 2nd & 3rd week August '16.

I think I'm in the right track. I've managed to lose 2+inch round the waist and about 8lbs in weight. I'm still mega overweight according to bmi, but from an anaerobic perspective, I have surpassed some of my previous pb set in my 20s & 30s! I'll officially be in my 40s next year!

I still think I've got a teenagers cheekiness sometimes, other times like an old man, 'nothing more to do, I'm at peace'.

I felt my knees going up and down stairs today- and coincidentally remembered how I used to (in my 20s) run & jump down flights of stairs! I'm gonna continue with my fish oils and try my best to maintain weight loss and gradually lose another 8lbs within the next 12-24mths. (Still can't get away with being obese though!).

I remember having very little to zero energy as recent as this summer (started cycling late spring). The summer before, was progressive, I set personal best push-ups and then started jumping and then I had another ~pe/clot setback. It sent me into a mild depression for months, no-one i know understands what it's like having a ~pe/clot relapses.

I have a rough idea where my own clots have come from, and also where they may grow, ie. anywhere.

All I'm interested in now, is safe gradual breakdown and reabsorption of existing clots throughout the body, before doing any form of anaerobic or aerobic exercise, manual labour or strenuous housework. If it takes 6-12-18 months or longer, then so be it.

My risk, my life.

Is it normal to have days where you feel as bad as the day they found it? I have only been on the Blood thinners about a week and I still have a heavy chest from time to time and get short of breath. I don't think I should run to the ER every ache and pain but fear missing throwing another one they should know about. What should I do?

I have had days where I feel breathless and tightness of chest but some of this has reduced in time & my doctor said breathlessness and tightness of chest is normal as your body will be trying to break down or deal with the clots! today I have pain in my shoulder blade which I am very worried about as I remember having severe shoulder pain in hospital and the doctors said that could have been when the clot was moving!! I have taken pain killers and I am going to see if it subsides, I've been in and out of hospital a lot since I was discharged so I understand you in not wanting to run to a&e over every little pain, but then again it's better to be safe than sorry- I am going to ring my doctor later if my pain does not subside! Best wishes x