Three years on, and a third DVT!!

[AlanW]

As the title indicates, they have just found a third blood clot behind my right knee. Mindful that when they found the second DVT back in September last year, they put me on Apixaban for life following on from my DVT back in Jan 2021.

The start of last week, my right calf and foot started to swell, and I was getting an odd sensation the top right-hand side of my groin, but no localised pain or swelling/redness anywhere on the leg? I left it for a few days, thinking or rather hoping that it might be something else. What didn't help the situation was me having to work in Brighton for the weekend. So, a 3.5 hour non-stop there on Saturday morning, worked the weekend and a 3.5 hour non-stop drive home on Monday. I admit that given the circumstances a foolish decision on my part not to stop for a break in both directions.

But in the end, Monday afternoon it was a call to the GP via 111 to get it checked just to be on the safe side.

The following day the ultrasound scan confirmed a blood clot the back of my knee, but they don't know if its fresh one or the one remaining from last year that has never dispersed?

Needless to say, my meds have now been doubled up for the next seven days and I presume that I will be called back to have a follow up scan to see if it's gone this time or not. Then the GP is referring me to the Haematology team to see about altering my meds, but no idea what to?

Just my luck really, on blood thinners for six months and still have a blood clot, be it new or old, it's still a DVT.

 

[berty bassett]

And it’s been found before it was on the move - you lucky boy ! I should have a go on the lottery

 

[ColinJ]

Bad luck, Alan!

I have spoken to a few fellow sufferers on my forum rides who have had DVTs even when on anticoagulants. I am 90% sure that I had another one last summer, despite being on warfarin. (I got dehydrated on a long ride and didn't move much for a couple of days after the ride, which would not have helped.)

Anticoagulant doses obviously are not high enough to stop you clotting - otherwise they would turn you into a haemophiliac! They just make unwanted clotting less likely.

Remember to stay well-hydrated and to move at regular intervals!

I hope that you get over this DVT quickly and without complications. (It took me a few weeks last summer to get my fitness back to where it had been when I clotted again.)

 

[ColinJ]

Oh, and I remember reading that repeat DVTs can form on the scar tissue from the original DVT. The veins have rough patches inside where they should be smooth. We just have to take the drugs and look after ourselves.

I set a 'move!!!' alarm on my phone to remind me to get off the sofa at regular intervals.

 

[AlanW]

Oh, and I remember reading that repeat DVTs can form on the scar tissue from the original DVT. The veins have rough patches inside where they should be smooth. We just have to take the drugs and look after ourselves.

I set a 'move!!!' alarm on my phone to remind me to get off the sofa at regular intervals.

Thanks Colin, the "move" alarm is a good idea but more so when l am work. Although l ride into work most days, 12 miles each way, l can then sit at my desk for three or fours hours before moving again!

That said, that's only till the end of May and that's me done, a new chapter unfolds as l start retirement.

Interesting point about the about scar tissue, that's a good question l will raise with the GP when l see him next.

 

[AlanW]

Its only taken since March for this to gather any sort of traction despite me regularly contacting the surgery about what's happening. The GP has now concluded that it wasn't a third DVT but more than likely the second one that never went away from last August?

Which considering I have been on anticoagulants for eight months suggests that they are not doing anything for me to prevent further clotting.

So, on Tuesday there was a flurry of activity from the local hospital, plus people from the Warfarin clinic and also the GP, resulting in it being decided that Warfarin is the only way forward, plus self-injecting Clexane till I get the results of the blood test I had this morning.

 

[AlanW]

By means of an update to this, today at long last I finally had face to face consultation with a doctor in the haematology department. You may recall after my first blood clot which was three years ago, I had all manner of scans, 2 x CT scans and 2 x MRI scans plus Lord knows how many blood tests etc.
The end result after all that was that there was simply no explanation what had caused it. When it's in your leg, as mine was, it's called DVT or deep vein thrombosis.
But it turns out, as I discovered today, they actually also found and I quote "significant clots in the portal vein", which is the main vein that supplies blood to your stomach and spleen, this is known as PVT - portal vein thrombosis.
Quite why I was never told this at the time remains a bit of a mystery, because he showed me the letter that was sent to the surgery in June 2020. I guess the COVID pandemic didn't help matters of course.
You may also recall that they also checked for cancer, as a tell-tale sign of cancer is the forming of blood clots apparently.
I was really hoping that he would say I could come of the Warfarin, but in view of what he said today, not a chance, it's a lifelong medication now. 😢
Overall, it was a good consultation and while I wished the outcome would have been better, I certainly understand the issues now, pity no one thought to tell me three years ago.

 

[AlanW]

And so another year begins and just two days in to the new year and l'm back at the hospital having a ultrasound scan on my right calf.
Most of Christmas my right calf was aching, but with no swelling and no tenderness and as l'm on Warfarin and l have INR tests every couple of weeks or so, l decided not to be overly worried. Coupled with the fact l knew that l had a INR test booked for 8am on the 2nd January, so l thought l'd wait till then and then mention it to the nurse.
So mention it to the nurse l did, she in turn told the doctor who in turn then arranged for a urgent ultrasound scan at hospital.
First the good news, no new blood clots have formed....
Now the bad news, the existing blood clot from a year ago is still there
So clearly something isn't right due to the aching, so the GP has referred me (again) to a hematology consultant.

 

[ColinJ]

There's no end to it is there!

I asked the doctor about this subject after I developed my second PE. He said that the original clot forms scar tissue inside the vein and further clots form more easily on that, which is why we are usually kept on anticoagulants after a second clotting episode.

I wonder if they are talking about that scar tissue rather than a soft clot? It seems unlikely that a clot would sit around in your leg for a year without either healing to a venous scar or breaking up and causing an emergency.

I still have (minor) problems with my bad leg from time to time. There isn't tenderness for me, but there is swelling when that happens.

Anyway, fingers crossed that it isn't anything serious and things get back to normal soon.

 

[AlanW]

Your right @ColinJ there is no end to it!

From the way she was talking l think she thinks it's a scar tissue related problem. She was waiting to hear back from the hematology team as to the next move, but she thinks it will be a dramatic increase in the Warfarin. Which of course is all well and good, providing it disperses it evenly as opposed to a small piece breaking of first!!

 

[ColinJ]

Ooops - I forgot that we had already covered scar tissue etc earlier in this thread!!

PS And I got lazy with the move alarm... Reinstated now!

 

[Ming the Merciless]

Ooops - I forgot that we had already covered scar tissue etc earlier in this thread!!

PS And I got lazy with the move alarm... Reinstated now!

Move !

 

[ColinJ]

Move !

Ha ha - I DID!

The alarm went off again just now. I have a cheapo combi-boiler with no remote control and the room is warm enough to last without further heating so I'm heading off upstairs to turn it off, and will add some extra stairs traversals.