Pulmonary hypertension

[Diane11270]

Hya I have just received my first appt at the Sheffield hospital for test for pulmonary hypertension, I am absolutely terrified especially after reading the enclosed leaflet, feel sick to my stomach xx

Sorry for the miserable post

Diane xx

[sassy59]

Don't apologise Diane as it can be scary when you don't know what to expect. Is someone going with you? It's good to take a partner or friend etc along if you can. Hope all goes well for you.

Xxxxx

[Carnival567]

I hope all goes well x x

[Watfordgirl]

What is it that's frightening you, Diane? The tests or the diagnosis or the subsequent treatment. Maybe all three, and as sassy says it is understandable to be scared. Sue x

[Diane11270 in reply to Watfordgirl]

Yes all of it and the feeling I'm not going to be around for long xx

[Watfordgirl in reply to Diane11270]

I do understand. I've got PH but not PAH, which can be treated. Take one step at a time, Diane. Tests first and they really are ok. Don't look to far ahead. You can pm me at any time. It will be ok, Sue xxx

[Diane11270 in reply to Watfordgirl]

So did you have the initial test for pulmonary hypertension then, just the leaflet I read this morning has really got to me, can't get it out of my head xx thanks Sue

[Watfordgirl in reply to Diane11270]

I don't know what it says, Diane. Someone may have been given one.xx

[Diane11270 in reply to Watfordgirl]

The leaflet is just saying what to expect on your first visit then visits after that, not too worried about the first visit because I have had all them test before but it's the prospect of having the catheter test then being told there is nothing they can do to help me because it has gone too far, I'm only 47 and I was planning on being around for a longer xx

[Watfordgirl in reply to Diane11270]

Have you had an echocardiogram? x

[Watfordgirl in reply to Watfordgirl]

See below please x

[Diane11270 in reply to Watfordgirl]

I have some kind of heart scan about two months ago but not sure what it was, sorry to be so vague xx

[O2Trees in reply to Watfordgirl]

What is PAH please Sue?

[Watfordgirl in reply to O2Trees]

Sorry to disappear. Pulmonary Arterial Hypertension, which is not quite the same as Pulmonary Hypertension. If you go to BLF website and follow links through there's a good description - better than I can get in a small box! Sue x

[O2Trees in reply to Watfordgirl]

Thanks Sue - I'll check it out

[AngieB72]

I have PAH, diagnosed in Autumn 2015, I am 44. The RHC is quite harmless, I, like you, was very anxious about it but it is quite a simple procedure and you can't really feel anything at all. Since diagnosis I have been on the usual medication for PAH and at my last echo my pressures were in the 'normal' parameters so the medication must be controlling it for me. Good luck 🍀

[Diane11270 in reply to AngieB72]

Thanks angie, am just so scared that I am on borrowed time, can't think about anything else at the minute xx

[AngieB72 in reply to Diane11270]

Try not to worry too much - you may only be mild like me. Very good Facebook closed group to join if you are into that. Lovely people with lots of helpful advice. It's amazing how many people have it and the varied reasons for it.

[Watfordgirl]

Sorry, Diane - can't do tiny boxes. Can I suggest you phone the BLF Helpline - 03000 030 555 and speak to one of the nurses there. Open office hours, Mon to Fri.It will be much easier to have a conversation. And I'm really pleased Angie has responded because there is treatment for you.

Take care and do keep in touch,Sue x

[Diane11270 in reply to Watfordgirl]

Thankyou sue, it's just the not knowing and feel like am on borrowed time and I know it must be hard for my husband seeing me like this even though he has and is being fantastic xx

[Diane11270]

Thanks everyone xx

[sarcoid123]

I have pulmonary hypertension (as a result of pulmonary sarcoidosis). It was first diagnosed after an echocardiogram which is painless. I suspect you may already have had this test. You lie on your side and a nurse runs a flat instrument over your heart and a picture of it shows on a screen. It takes about 20 minutes and doesn't hurt at all. The results are then sent by computer to your consultant. I suspect you may already have had this test. I was then booked into hospital for a right heart catheterisation which measures exactly the pressures in your right heart chamber. It was painless; I didn’t feel a thing. The results are sent by computer to your consultant.

Please don’t think there is nothing the doctors can do to help as there are lots of different treatments nowadays. I have read that treatment has got so much better in the last 20 years.

We are so fortunate to have consultants who are specialists in pulmonary hypertension.

[Diane11270 in reply to sarcoid123]

Hya sarcoid

Yes I think I have had the echo about a month or just over ago, it's the next step is am worrying about and what's to follow but you have made me feel a smidge better reassuring me, I know sounds so so pessimistic but I feel like I have a death sentence looming over me but then on the other hand you say there are lots of different treatments out there which is good, thank you so much xx

[valpappas]

Please donot be afraid. I suffer with P.H and attend Sheffield P.H.

[valpappas]

Do not be afraid.I have P.H and attend Sheffield P,H,unit reglarly. The staff are wonderful they become almost like family.They monitor us regularly and their help and care will reassure you. The P.H.A. have web sites and also a Facebook page..Patients and staff are a cheery bunch and your spirits ill be lifted once you have been. I would advise you to join the P.H.A. as they are a truly inspirational association. Wishing you all the best and you never know our paths may meet if we are there on the same day. Keep positive and things are so much better now and treatment is advancing all the time. The tests and varios treatments are easy and not scary go with a positive and relaxed attitude and in 6 months time you will wonder why you were scared..Keep smiling

[Diane11270 in reply to valpappas]

Thank you so much, that has made me feel somewhat less nervous even though on the day I shall be panic stricken!! My heart will be racing, but seriously it's good to hear from people/you who are suffering from this condition, thankyou xx

[Diane11270 in reply to valpappas]

Well it's getting closer to my first appt at Sheffield hospital for my test, i am getting worked up by the minute, need more reassurance because I am fed up of this constant feeling of dread, sorry again for being so morbid xx

[Diane11270]

Hya valpappas

Me again, can you tell me what to expect on my first visit to the Sheffield hospital? Thanks for your last comment did help a lot xx

Diane x

[valpappas]

I presume it is a day vist.This starts with BP and blood tests.you will be given a breathing test, a walking test (this is checking distance before breathing and oxygen levels alter. This will be followed by Xrays, heart echo and ECG. then you see the consultant and he is a sweetheart like a brother. Coffee tea etc plus sandwiches are in the waiting room to keep you going plus lots of literature about PH. I will be thinking of you and let me know how you get on. I can assure you that all will be easy and as they are so well organised you will hardly have time for a coffee between tests big hug and my best wishes.after you have been and need any help I am here for you.

Val x

[Diane11270 in reply to valpappas]

Thanks Val for your constant reassurance, yeah it's a day visit, am mostly worried about how bad the pulmonary hypertension is to be truthfully honest, dreading the results time! I will definitely keep in touch with you if that's ok, your big help in this horrid time xx

Diane x

[Diane11270]

Well I am going to my appt tomorrow at Sheffield 😣 nerves are definitely kicking in xx