Anyone know anything about progress after DVT/PE ?

[CMOTdibbler]

6 weeks ago, Dad was discovered to have a very large DVT (6cm) and multiple pulmonary embolisms. He was started on heparin and warfrin, discharged same day , then seen daily at the thrombosis clinic till his INR was in range and was off the heparin. Fine. Now seen weekly at community hospital for INR, but no specialist followup.

He is still very breathless, his leg is tense and swollen (5" bigger than the other round his calf), and he has lots and lots of petechiae on his feet (GP says its just one of those things with warfrin, the chiropodist is worried about it and has never seen it before). Walking is v v difficult, and he is in a lot of pain

He is 74, diabetic, and has neuropathy and impaired circulation in his feet - they are cold and blue/dusky, then hot at the ankle on the swollen leg.

Does anyone know whether this is normal ? His GP doesn't seem terribly forthcoming, but then Dad doesn't really want to know bad news, so he can have selective hearing

bump ?

Does anyone look at his leg or do they just take blood?

Hi CMOTdibbler

I suffered a PE about 18 months ago, I'm sorry that your dad is going through this it is horrible.

I have to say I am at the hospital discharging him the same day, they kept me in for 3.

From what I have read breathlessness is quite normal for quite a while following a PE. I was told it can take up to 8 weeks for the clots to be reabsorbed by the blood.

I had no specialist follow up, just had attend regular INR checks for 6 months and then blood tests after finishing warfarin to determine the cause. Has anyone talked to your dad about his diet and things to avoid whilst on warfarin?

I din't have a DVT so I'm afraid I cannot help there. I had to wear compression stockings.

I found this website very helpful. It's but very informative and supportive, and really helped me to see I wasn't the only one and that there is hope afterwards. It's also great to hear other peoples experiences.

The gp has seen his leg, but on a regular basis he only has blood taken.

Blissa - yes, the nurse at the thrombosis clinic he had to go to till his INR established went through all that with him. She was lovely, and was actually the one who told him that he had PE - the hospital had been useless and only told him about the DVT, and had told him to inject the heparin wrongly.

He can't have compression stockings as the circulation in his feet is too poor

I knew it would take a while for the clots to resolve, but thought that he should be looking better by now, not worse

From hearing about other people's experiences I know recovery time can vary greatly. The warfarin itself can also make people feel pretty awful and has numerous side effects, I used to get lots of leg pain and was a regular at the gps for a while convinced I had a DVT.

There is also the stress of the situation itself, I experienced lots of anxiety and panic attacks following my PE.

Again I am at the hospital not telling him he had a PE, that is beyond belief.

If walking is so painful for your dad has the clinic given him any leg exercises he can do sitting down?

Hi cmot, meant to get back yesterday but didnt get chance.

The warfarin should be dissolving the clot. But it does take time.

However, given your dads neuropathy and pain I think it is worth going back to the GP. At the least his pain control should be reviewed. Its possible that he isn't on all the tablets that would help with this.

I also wonder if a vascular review is in order if he isn't already known to them - especially given your dads neuropathy.

Does he have a community nurse/matron or diabetic nurse? if so they should be able to help on that one. hth.