The Future

[EDBrae]

I've had a PE recently and had a DVT a few years back. I came off Warfarin after my dvt, but got ill recently and got hit with a PE. While i need and will follow treatment protocol, I hate the idea of being on blood thinners for the rest of my life. I was wondering other peoples experiences after treatment did you remain on anticoagulants? How has life been for you? Did you come off? If so how have you monitored your health?

[jools6822]

On Rivaroxaban for life.... life is fine, one small tablet a day and live a normal life, compared to what other people have to take for their symptoms I feel quite lucky.. I dont rattle when I walk about...

[Hidden]

I agree with jools6822 - I am on Rivaroxaban, if not for life then at least for the foreseeable future, and honestly, I don't know I'm on it!

[Hidden in reply to Hidden]

I'm on that as well and have had no problems with it.

[EDBrae]

I'm currently making the switch over from Rivaroxaban to Warfarin as the side effects of Rivaroxaban were too much for me. Just trying to work out what the future looks like on blood thinners

[Terry2407 in reply to EDBrae]

Me too after 6 months I'd gained 2stone and felt really bloated

I'm back on warfarin and lost 10 pounds in just over a week

[Hidden]

I asked if I could stay on anticoagulants for good at my consultants appointment a couple of weeks back and that was fine as I feel safe on them like a security blanket.

[naveedy]

I have been on for 3 months so far mine was a 1st episode of DVT and PE at same time - I had no precipitating factors - and med is fine rivoroxoban no reported side effects - I am a medic and had lots of discussions about duration eg. Monitoring d dimer levels , going on low dose extended duration , checking thombophillia screen - etc . In general it’s not clear with a 1st unporovoked episode how long 6 months or a year probably seems ok but having repeat scans of my leg venous duplex to see if I have any residual clots

[EDBrae in reply to naveedy]

My first DVT i was on warfarin for 6 months, they gave me the option of remaining or stopping, I choose to stop. They didn't want to do any investigation and just forgot about me. 5 years later I get a PE after being very poorly, they want me to be on anticoagulants for life, i'm not so keen. My problem with healthcare in the UK is that it is not very individualised, and when you talk about individual issues there is a complete lack of knowledge. So you never really get the answers you are looking for unless you are willing to just go with what they want. I'd like them to do a bit more work on me, but alas it will be unlikely

[Hidden in reply to EDBrae]

Yeah in NHS healthcare its one size fits all isn't it?

[EDBrae in reply to Hidden]

Trying to get answers is not easy

[Hidden in reply to EDBrae]

Tell me about it! They said to me that my pe in December supposedly was unprovoked when I said I feel that a sedentary job had caused it same way as long haul airplane travel can with being sat in cramped conditions over a number of hours.

They don't listen to you either and talk down to you like you are stupid. I got cross getting the same questions over and over again and had felt like shouting what exactly is it that you want to hear!

[EDBrae in reply to Hidden]

yeh that sounds familiar, I try to talk to them about exercise as lift very heavy weights. They gave me the same advice they would give a 50-70 yr old. My body/fitness is totally different to a 50 -60 yr old that does not exercise as much as myself. Not only that they dont seem to want to answer why I got a clot, they just want to treat it and then avoid it.

[Mallard]

Hi I had a multiple bilateral PE 7 weeks ago and already I am totally fed up with the INR testing as they put me on Warfarin and Heparin injections straight away. . I have asked to go on one of the newer anticoagulants and have been refused. I am struggling to accept this and wasn't very happy as I travel frequently. In the end I thought to heck with it and have purchased a coaguchek machine to take with me on my travels. To add insult to injury the hospital I am with does not support the use of these machines or test strips on prescription. However, it is what it is, for the moment and I am trying to make things easier for myself when abroad. Hopefully things will improve over time as it is early days. I have found this forum extremely informative and I am learning all the time. Like previous posts, I have not found the medical professionals very helpful at all, its a case of take this medication and go away. I had to read and learn all about DVTs/PE/blood thinners via the internet.

[EDBrae in reply to Mallard]

Sorry to hear this. The new anticoagulants are not always the right stuff, they stuck me on Rivaroxaban and it made me feel really dizzy, faint and had a bunch of aches with it to. I made the decision to switch to warfarin within a week of taking the rivaroxaban (which GP wasn't happy about). I think the new medication is designed to decrease the amount of time your consultant has to actually spend with you, which I dont think is a good thing. Answers also feel very prescribed with no real desire to investigate any questions you might have

[Mallard in reply to EDBrae]

My husband would agree with you, he is happy I'm on warfarin and being closely monitored, however, I'm the one having to take time out to be tested once/ twice a week. Hopefully this will level off. I'm sorry rivaroxaban didn't work out for you, but hopefully you'll settle down on the warfarin over time. I hope things improve for both of us, let's stay positive- very best wishes

[EDBrae in reply to Mallard]

Yeh. Its the working out the rest of life now!

[Mallard in reply to EDBrae]

Yes definitely feels like a game changer.

[MazzyB]

I’m on warfarin for the rest of my life as this is my 2nd DVT and also got a PE on my lung, but my INR is now stable and I really don’t get any side effects, hope you get on ok.

[EDBrae in reply to MazzyB]

How are getting on living life with it?

[MazzyB in reply to EDBrae]

I’m getting on really well I really don’t feel any different but I do get out of breath very easily so need to watch that. Hope you feel better soon.

[jacead]

I had a DVT when I was 24 and had Warfarin for 6 months. I had no more problems until 44 years later, last August, a 7 hour journey, much of it stuck in motorway traffic, brought on a collapse and a rush to hospital. I had been very breathless for the previous year and had loads of tests, but no diagnosis of PE until I was CT scanned in the hospital. I had two medium sized clots , one in each lung. I was put on Heparin injections for three months, then took Dabigatran, which caused some unpleasant digestive symptoms. After a couple of months I had a really severe allergic anaphylactic reaction, when I felt that I was about to collapse and become unconscious. I asked to for my medication to be changed to Apixaban and have been on this for several months without any side effects. I feel well and am able to walk up steep hills again and I am happy to take this anti coagulant for the rest of my life, I feel much safer.

Good luck.

[Hidden in reply to jacead]

I was 41 when mine happened although I hadn't felt right for a while with vague symptoms like shortness of breath going upstairs or uphill and I thought I was becoming unfit and also leg cramps as well but it's nice to know no I wasn't unfit I was ill!

It was one morning I had chest pains and I couldn't walk very far without having to stop for breath which wasn't normal for me and I had had a dry nagging cough for a few weeks as well and I had an overwhelming urge to call an ambulance so I had dialled 999 and explained my symptoms and then the bus that goes to the hospital arrived so I got on that instead and dragged myself into a and e there having called 999 back to tell them not to come as I was making my own way to hospital so they could go to someone else who needed them.

I feel with me it was a sedentary job that caused it and chronic stress and I had a chest X-ray which had come back fine and blood tests and the nurse had given me a heparin injection when they had suspected a blood clot.

When I was in the waiting area I was absolutely terrified and was told by another patient how I looked like I was about to be shot and I had said back that I was frightened and how I apologised if my face was upsetting them! It gets on my last nerve when you are out in the street minding your own business and get told to cheer up by a stranger as I think it's rude as you don't know what might have happened to that person for their face to look that way. I don't mind genuine people asking kindly are you OK though.

I had a ct scan as well and it's like going through a polo mint and the radiographer was very nice and explained things and after the scan I had to wait in the waiting area until I was called in and told that I had blood clots in my lungs but they could easily be treated as they had caught them in time and they were keeping me in there overnight to observe me as I had become wheezy on minimal exertion.

I was on a trolley for a while before they admitted me and the nurse had been very kind and had held my hand when I said I was frightened and said I would be fine and I had a blood clot and they had caught it in time so could easily treat it and had given me my tablet to help clear it down.

At first I was on 2x 15mg of rivaroxaban twice a day which was hard going and then after 3 weeks dropped down to 20mg once a day which I have found no problem with.

I went to the consultant a few weeks ago for my check up and breathing test and I ended up discharged from the hospital clinic and they recommend I stay on those indefinitely as mine supposedly was unprovoked as well!

It was a mutual agreement about me staying on them long term as they are like a security blanket for me as I don't want to go through something like that again if there's no need to.

Also it frustrated me at the appointment getting asked the same questions over and over and I had thought to myself shut up!

Good luck!

[EDBrae in reply to Hidden]

Sounds like the two of you have been through the ringer. Its always frustrating when stuff like this happens. Hope you recover and feel like life is not held back for you

[Hidden in reply to EDBrae]

Thanks for your good wishes. I am back to my previous fitness level now before I had the clot and I am doing the things I did before it with ease and hills and stairs are easier now than they were before I became poorly when I thought I was becoming unfit but no I wasn't!

I hope things go well for you as well. I find that time helps with things.

All the very best to you

Jo

[AndySD]

I was diagnosed with multiple unprovoked PE 11 months ago. I was put on Apixaban for 6 months then taken off them by my GP. I took aspirin instead

[AndySD in reply to AndySD]

Whoops....typing problem.... cont'd.....after 3 months off Apixaban I hit the brick wall again. Breathless and fatigue. I am now back on Apixaban under a new GP. I will need a lot of persuading to come off the blood thinners ever again. No real side effects other than odd bruising and a couple of gout incidents. There seems more damage done during the 3 months off Apixaban as my recovery has been much slower this time. I would recommend staying on the blood thinners. Not too inconvenient to take a pill but suffering the PE fatigue and breathless symptoms without Apixaban was much worse. Good luck and speedy recovery !

[EDBrae in reply to AndySD]

There has been a five year gap between incidents for me and both were provoked although Drs have disagreed over that. I'm not fearful coming off, I'm more fearful staying on them. Glad to hear you are doing well!

[amhayllar]

I was on warfarin for the recommended 6 months when I got my two DVT's 11 years ago at the age of 28. They never found out why I got them. I have been fighting for a long time to get understanding or proper tests. Finally after having several things happen including a bout of cellulitis in Nov last year, I asked for a referral to the vascular unit at Guy's and St Thomas'. I had a series of scans done and blood taken and I get the results in June. I've been told I have post thrombotic syndrome, I've been told my veins are damaged and I have residual clot still in my leg and in my tummy but want to know what this means. I got fobbed off at every turn, too many opinions but not enough information. I only found out about the vascular unit off this forum. The support from this site is amazing and I wish I had found it earlier. I'll let you know the results. I hope that they don't decide I have to go on medication but I'm glad I might be getting some answers after 11 years. Take care.

[EDBrae in reply to amhayllar]

Hope all goes well for you. Sounds like you have been through a roller coaster! I'm determined to come off blood thinners as it places my life at risk with the things i enjoy doing. I think sometimes medical professionals don't really understand that you want to live a life

[dazwatson]

I had the same as you last year and they couldn’t find a cause. On Rivaroxaban for life. Was really happy when they said that, I’m comfortable with the long term treatment rather than risking another PE. No side effects so far after a year and Docs always happy to hear concerns

[EDBrae in reply to dazwatson]

Treasure that Doc

[Hidden in reply to EDBrae]

I put in a complaint about my surgery as they stopped my medication without asking me to make an appointment to see them in the surgery for a chat.

I went to the pharmacy and the pharmacist said they had refused to issue it because they wanted to see me and this caused an argument and he rang them and they backed down and said I can have it this once but would have to see them after.

I had to go back the following day which was inconvenience and got the item eventually and there was a note on it saying to make an appointment!

I tore up the thing saying to make an appointment and decided I wasn't going back there as they have done other things to upset me like sending me for a blood test without explaining why or saying what they were going to be doing to put me at ease. The phelbotomist was nice and friendly though but that's not the point.

Also they had rung me at home to sort out an appointment with the nurse who was nice to be fair but it's how it was done that upset me as nothing was explained to me about what she was going to be doing and why. When things are explained and they talk you through what they will be doing and why it puts you at ease.

I am going to find a new surgery as they have treated other patients badly as well and their communication is appalling there and I wrote a letter of complaint to the practice manager who apologised and said she will be investigating but one things certain I won't be returning to that surgery!

[EDBrae in reply to Hidden]

that sounds terrible... my recent experiences of doctors recently has made me feel as though they wish for me to worship them at the alter of their knowledge. I find them arrogant, but thats not every doctor.

[Hidden in reply to EDBrae]

Another thing there that upset me was I was shouted at by one of the doctors there when he had said about mindfulness for anxiety and I had said I would take it on board and got shouted at don't take it on board do it! That wasn't very nice doing that but I didn't say anything at the time as I was frightened!

It didn't warrant shouting though and most unprofessional to shout at a patient!

[Hidden in reply to EDBrae]

I ended up getting asked to leave the practice list because I complained over how I was treated but I'm not sorry as I was going to leave anyway and they claimed that they had supposedly tried to contact me on 29 March about an appointment to see them but no they didn't and the pharmacist had said the note went on on 11 April about going to see them so that was lies!

The excuse about the blood test was that the doctor supposedly was unaware I hadn't wanted the test but she never asked was it OK to go ahead with it like the staff at a and e had asked me when they wanted to do anything. That was a lie as she just arranged it without explaining why they were doing it.

They have shouted at other patients as well who have left reviews online so it's not personal just pig ignorant at the end of it all.

Hope you are well.

[Hidden in reply to dazwatson]

A mark of a good doctor is when they explain what they will be doing and why they are doing it and not rushing you out before you have your 10 minutes!