Pulmonary Hypertension Diagnosis

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Hi

Well have just come back form a couple of days of tests at Papworth and have been confirmed as having Chronic Thromboembolic Pulmonary Hypertension.  I need to have surgery to remove as much of the clots as possible and to hopefully then be able to return to a 'normal' life and able to enjoys all the things that I used to do.

I was told that this could have been going on for years before it finally got really bad last year and I ended up in hosptal for 2 weeks with large bilateral pe's, I hadn't been feeling great for about 3 and a half years and have had all different kinds of tests, all of which came back clear and was told it's anxiety!

Am so glad that I have finally had a diagnosis and I am being given the chance to get my life back to normal.

xx

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10 Replies

  • Posted

    WOW 😲 Debbie so sorry to hear results. Still at least you know what is going on now. It is awful feeling ill and not knowing why. Hope you don't have to wait too long. Thinking of you. Keep us up to date with your progress.💐 xx😍

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    • Posted

      Thanks Lizzie

      I have been told the timeline is around 3 to 4 months but to contact them if i am feeling worse.

      I have to say that they have been absolutly brilliant and answered every question I had and gave me so much information, also they have given me a number to call if I have any questions at all.

      I hope you are all ok.

      take care xx

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    • Posted

      Im sorry to hear that but im glad you got the right diagnosis so you can get the proper treatment and recover.
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  • Posted

    Sorry to hear about that, but as the others have said - at least you know what's going on.  Sounds like you are in good hands too!

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  • Posted

    I am so sorry for you with this diagnosis, but am so glad that you can put this " anxiety" thing behind you.  I know how you feel, they are quick to label a person.  I trust your surgery goes well.  Praying for peace for you and wisdom for the doctors and surgeons.  Did they suggest Viagra?  I was told I could take it, for the pulmonary hypertension that I had, but after the hundreds of clots were absorbed my pulmonary hypertension is gone.  So thankful.  Keep us posted.  Judy

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    • Posted

      Hi Judy

      Thank you for this.No-one has suggested Viagra, at Papworth they dd a right heart catherter to see what the pressure is and it is 39 at the moment.

      Do you know what the pressure was for you?

      Debby x

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    • Posted

      I can't remember the number but it was severe.  I also had an angiogram done and several echocardiograms.  I just read my results my pressure was 65.7 mmHg.  Yikes I guess that was high.  As far as I know it has resolved since the clots have been reabsorbed.

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