Here's some info from the Clot Connect website:

http://patientblog.clotconnect.org/2011/06/29/chronic-lung-damage-after-pe-%E2%80%93-pulmonary-hypertension-cteph/

Also, for those interested who may have CEPTH there is a new medication which treats that condition:

http://professionalsblog.clotconnect.org/2013/10/16/pulmonary-hypertension-due-to-pe-new-drug-approved/

Thanks, the first article was the one I was mentioning above. The way I understand it is that the above pressure measurements are raising the possibility of CTEPH & I've recently been referred to a CVR (cardio-vascular-respiratory) guy at the hospital. Assuming things don't improve, is a heart cath the next step to confirm a diagnosis?

Similarly, I've read a few threads here where their reported exercise intolerance etc seem a fair bit worse than I am. I've been back on my bike since last April, but no real improvement apart from shedding a few pounds and the feeling that I'm trying to show my body who's boss (but it doesn't listen). How graded can PH be?

Thanks.

Hi Rosie

It's been 6 months since my first diagnosed massive PE and I'm worst now than when I collapsed. I can not walk more that 200 yards and a single flight of stares kills me.

On top of which I am always so tired at the end of the day that I go to bed by 7pm most nights. But the worst this is the water retention. I have put on over 5 stone in 5 months now and my right leg has become so swollen that the skin has started to break down and I have a 5"-6" open hole going down to my shin bone that just won't heal.

Next Monday (20th Jan) I've been booked to spend the day at Sheffield Hallam Hospital to undergo a battery of tests to diagnose Pulmonary Hypertension.

Part of me wants them to confirm that PH is the problem because that gives me something to fight against. But I also realise just how serious and life changing it can be so I also know who good it will be to have it ruled out.

I'll let you know what the day involves and how things go

Debs

Hi Debs,

Sorry to hear about your on-going problems. I can relate to climbing into bed ~7 and being knackered the next morning (up to month 4 or 5 after diagnosis), although this has improved a bit for me. I put on a bit of weight (couple of stone) around the first set and have then shed it, and a bit more, after the 2nd set of PEs in July? Its weird, my appetite has largely gone since then, which just isn't me.

I'm aware of the PH centres here in the UK and have read up a bit about it, but any inside info you could provide would be welcome. From what I've read about PH after PEs, they're probably looking at 6-9 months for the pressure to sort itself out, before becoming worried, so it looks like you're on the edge of that period. I've somehow got myself under two consultants at the local hospital and one had a good chat to me and was saying they're monitoring me roughly every 3 months to see if there is any improvement/get worse. The other didn't bother explaining why they're keep sending me for heart scans, and for some reason, I may have been a bit short in that consultation. Ahh well.

Totally coincidentally, a guy dragged me round a few very small hills on my bike on Saturday morning. Turns out his 3 year old was diagnosed with PH at the 20 week scan, and she's doing OK, despite a very gloomy prediction. So while it is obviously serious, there are quite a few decent stories to give a bit of hope.

Hope you get some info/answers and let us know how it goes.

When I was in the hospital with my PE, they did an echocardiogram a day after my PE diagnosis because they suspected high pressure due to the size of my clots. My Cardiologist said the damage normally reverses itself over time, but that they monitor it regularly. So I had another echo 2 months after diagnosis and then regular echos until a little over a year after my PE. The damage improved significantly at about the 6 month post PE diagnosis and by a year after my diagnosis, everything was back to normal. My Cardiologist wanted me to come back in another year for another echo which I declined because, well, I felt it wasn't medically necessary at that point. Note I had no exercise intolerance at all and in fact felt pretty good overall at about the 3 month mark.

So I hope you all find some improvement. Debs, I think you having the swelling is cause to be aggressive in getting a firm diagnosis, because I understand edema is one of the common symptoms of PH. So keep pushing for your care!