DVT and Saddle PE 2 weeks ago, now scared and confused
Posted , 5 users are following.
I was rushed into hospital 2 weeks ago and eventually diagnosed, after a CT scan, with DVT and a Saddle PE. The clot in the lungs was very large and there is also one in the calf. This has been attributed to a few long haul flights in recent months. I had a heart echo scan and was told my heart was enlarged due to the strain it has been under. Was given injections of Tinzaparin whilst in hospital and started on Warfarin. Due to the pressure on beds I was not on the ward I should have been on and doctors had to travel from the other end of the large teaching hospital to see me each day. I never saw the same person twice and was given much conflicting information, was given an incorrect dose of warfarin once and a blood test was 'lost' once. My INR was, and still is, all over the place and I was told that I am very sensitive to Warfarin. I was sent home after a week with daily visits required to the Acute Medical Assessment Unit for blood testing. I am expecting to be referred to the hospital Warfarin clinic this coming week. I have been told that another heart echo scan will be arranged for approx 6 weeks time when I will also 'see someone'. I understand that I will be on Warfarin for at least 6 months and possible for life. My case will be reviewed in 6 months time. In the meantime I find myself very confused as to what I should be experiencing now and what risks I may still be subject to, (I was told at one stage that I was in imminent danger of cardiac arrest or respiratory failure). I feel fine when at rest but struggle with breathlessness and pain in the leg, (from the blood clot?), when walking. Getting to and from the hospital is proving very difficult as I am travelling on my own on public transport. To be honest I feel really scared! I have no idea who I can discuss my fears with and am not in contact with anyone medical who can answer the many question that keep jumping into my mind. For instance, would wearing a compression stocking help with the leg problem? Am I still at risk of sudden collapse. What happens to the clots, could the remaining one in my leg still travel to the lung? Will I ever get back to full fitness? Will I ever be able to fly long distance again or will it be too risky? I just wish there was someone, either medical or with personal experience that I could discuss all this with. Anyone else in a similar position?
Thanks for reading, even just writing this down has helped a little!!
0 likes, 45 replies
colossus Allexie
Posted
I agree the biggest frustration with warfarin is the testing as clinics are too busy, hospitals are in awkward locations and the times that the clinics are open are just not suitable to those who work. I'm on warfarin for life so I bought my own home testing kit, I just email the INR to the clinic and my surgery and the reply back with a dosage. Are any of you having problems getting the warfarin prescriptions from your GP? Mine has become rather awkward with their prescription policy.
I discussed rivoraoxiban with my consultant, they told that it wasn't suitable for someone who needed long term anticoagulation for the follow reasons.
1. There is no antidote, unlike warfarin where they can give you a vitamin k shot.
2. Only lasts 24 hrs, so if you miss a dose accidentally you are at far more risk, than on warfarin.
3. Most importantly, clinical trials have shown that the body becomes used to the drug after about 6 months and therefore becomes ineffective at providing anticoagulation for long term patients.
So although warfarin is more hassle, its a drug that they know to be effective over the long term. In my opinion the problem with warfarin is not the drug itself but how it is managed by the clinics, it's too antiquated.
For those of you who like to be active and go to the gym etc, yes sure in the early days you need to be patient and not over do it and this can be very frustrating, but being on warfarin shouldn't stop you from doing things. As I mentioned in an earlier post, my clots never dispersed, but I still managed to live an active full life, sure I was never able to do anywhere as much as I could prior to having PE's but I still went swimming, did weights, exercise bikes, treadmill (walking only). I never had any problems with bruising, joints etc. My therapeutic range is slightly higher 2.5 - 3.5 and I always try to keep my INR at 3.0, the only thing I notice is that I get blood in my mucus when I blow my nose, and if knock my hand, or get a paper cut I bleed, which is more annoying than anything else as I normally only notice once I've smeared blood over everything, and usually something white!!
Hang in there all of you, as hard as it try not to worry, your brain is probably on full alert so you'll feel every slight twinge etc which normally wouldn't even register, just make sure you're on top of your INR. I guess it's a shame that it's happened over the winter period, had it been summer you could go outside to relax and read.
Curlyhairdo colossus
Posted
I was told the same about warfarin and the new drugs.
We'll all get there. All early days. I've b here before, had same shock feelings as it's something you can't see or feel (except being out of breath). I recovered last time and I'm going to this time 😃
-.a-way_forward Curlyhairdo
Posted
I think you/me/us may have a potential to be a complacent about this condition.
In my case, I have been known to have a high pain tolerance and the more expreience gained from being out of breath (due to PE) the more chance I may have of being disconnected (with the correct health/fitness level* that warrants being breathless.
* (previous memories of being out of breath....age weight, cardiovascular health, blood thickness energy, inr, viscosity of blood and so on..)
I may become conditioned to suffering from clots, and then an undissovlved clots detaches from the leg or elsewhere and cause a bigger blockage than anticipted.
daunting. ;-(
-.a-way_forward colossus
Posted
Consultants....
I have been told rivaroxaban has a half life of 12hrs.
I started taking this new medication in May '14 after my 1st DVT; five/six months later I had very unpleasnt PE experience.
Throughout the five/six month period i was active. In the month of september to october - i took a 28day prescription of xarlto over the course of 34-36days. This resulted in me being hospitalised.
In theory - if I have an underlying condition since March/May 2014 that is causing my blood to clot, this condition can be researched quite simply in a controlled manner - I stop taking the medication for up to a week and monitor my blood oxygen levels, blood thickness, scans etc..
I need a consultant to work with me and attempt to get to the bottom of this. This is BIOSCIENCE and not patchwork elastoplas treatment. If we make some progress - I get my life back and hopefully other people will benifit from research.
We will all get there, I prefer to get there on my terms. Is this a lot to ask for?
Curlyhairdo -.a-way_forward
Posted
Sorry if I gav you the impression in being complacent as its far from it. I'm just determined to stay positive even though I find it scary.
When I initially mentioned to the nurse about being out of breath I nearly didn't as I'd been sitting around after my foot op for 5 weeks and I'm also over weight so just thought I was unfit but decided to mention just in case. And that was where it started.
I've had blood clots before and I reacted in exactly the same way... I won't do anything as I was scared it would break off from my lung and kill me. That's all I could think about. I'm further on from there now but still scared but I won't let it beat me and I won't do anything I shouldn't. I'm just taking my time.
😃
-.a-way_forward Curlyhairdo
Posted
I think that blood clots occur anywhere in the body, but for now - it's the clots manifesting enroute from the veins in the feet/legs, joining in the middle up to the heart and into the lungs. When clots reach the lungs, calves/back of thighs this causes pain. The pain in the lungs is partiucularly distressing, but I do not think we can rely totally on pain in the lungs to acertain a measure of peril.
Speaking from personal experience - that would be unwise. Let's share and beat it together...atb
Allexie
Posted
Just back home after another emergency admission to hospital. Chest pains and SOB got markedly worse so I called 111 and ended up being re-admitted for 36 hrs. They did the usual ECG, chest x ray and blood tests, (including for tropical diseases due to my recent travels). All came back good so that was re-assuring. I was assured that there was no sign of a new clot. The thinking is that the chest pain is due to pleurisy from the resolving PE. Has anyone else ever had this?? No treatment other than paracetomol. The doctor, this time, was far more approachable and forthcoming and put my mind at rest about several matters that had been bugging me. Amazing how much good a doctor who is willing to give a little time to listening to fears and answering questions can do! She did say that she felt I would be on Warfarin for life and confirmed that no further CT scans would be done so there would be no hard evidence of how the PE was doing in the disappearing stakes. This leads me to wonder if anyone has ever considered having a CT scan done privately eventually to put their mind at rest or is this a really stupid idea?
Best wishes to all....