CTEPH/Endartarectomy

[Jodie_Scott22]

Hi, I'm wondering if anyone has had Pulmonary edartarectomy surgery that could answer a few questions?

[Katinka46]

No. I was turned down by Papworth as my CTED/PH was not considered 'severe' enough. Had I been offered it I would have leapt at the chance. However, since then, it appears that I have a nasty, untreatable small airways disease, Obliterative Bronchiolitis, caused by the PEs that caused the CTED. So I think it would not have been appropriate.

I do know that it is very serious major cardio-thoracic surgery.

I should love to know your story.

Kate x

[Jodie_Scott22 in reply to Katinka46]

I have quite a few pe's on both lungs and a clot on my heart, I was supposed to be having surgery last Friday but it was cancelled when I got into theatre, I just have a few questions to ask that the surgeon and anethatist were reluctant to answer x

[Katinka46 in reply to Jodie_Scott22]

Ask away. Can't promise to answer but I am very interested. This is in Papworth? How long ago were the acute PEs? A bit more history would be helpful. And where have you been seen?

K x

[Jodie_Scott22 in reply to Katinka46]

Yes Papworth.. Dr Jenkins. I did have some gruelling tests done at Hammersmith before hand. Okay so 6 years ago I was pregnant, and because my mum has Factor V leiden I was tested at 20 weeks pregnant to see if I had the same blood disorder, I do. But thought nothing of it because well, I was only 16 and didn't even know what that ment, a month after my son was born I couldn't breathe and was in pain so I went to the doctor and was told it was a kidney infection.. anyway a few months later we discovered that it was in fact two blood clots on the lungs and basically everything went down hill from there.. I now have so many clots but I also have another disease which doesn't get rid of the clots it's making and means even the anticoagulation doesn't desolve the clots when I get them. So I'm now waiting for surgery.. I ideally need answers from people who have actually had it because the questions are post surgery..

I've got to the part where I'm ready to be put under to have it.. so if you have any questions let me know

X

[Katinka46 in reply to Jodie_Scott22]

Thank you so much for your reply. How horrendous for you. And you are so young. The Papworth team is brilliant. I can't help about the post-operative bit and I am not sure that there are any people on the forum who can help, because I have never read a post about CTEPH or PEA. Do you belong to the Pulmonary Hypertension Association (PHA)? That group is more likely to be able to help. The help-line run by BLF may have some advice. They have an office hours service with trained professionals to answer queries. All I know is that the success rate for the op has improved by leaps and bounds over the past decade or so. I think a lot of the ops are done on older people who have other diseases, I think the oldest patient was 85. That means that the stats around the outcomes will be skewed and the success rates will be even better for you youngsters.

Dear Jodie, you are in such a very difficult position, my heart bleeds for you. And to have a little boy of six. How precious he must be to you and your family.

Please let me know how things go.

Kate xxx

[Jodie_Scott22 in reply to Katinka46]

Where can I find that group please? I was advised of it at the pre op assessment at Papworth, I looked the other day but nothing had been posted on the one I found for a few years.

Some news.. annie phoned me this morning and gave me a new op date.

4th Nov.. so in two weeks

Scared.

X

[Katinka46 in reply to Jodie_Scott22]

The PHA? Google it? I do not belong as I do not have pulmonary hypertension according to the Sheffield PVD Team.

My consultant in Leeds has a different view.

Glad about the new date.

I have every confidence that it will go well.

Take care

K c