PHA UK Homepage
Forum Home Forum Home > Available Forums > PH Related Messages + Information
  New Posts New Posts RSS Feed - Ph pressures on an echocardiogram
  FAQ FAQ  Forum Search   Register Register  Login Login

Ph pressures on an echocardiogram

 Post Reply Post Reply
Author
Message
KatieC View Drop Down
Member
Member
Avatar

Joined: 24 Oct 2010
Location: West Midlands
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote KatieC Quote  Post ReplyReply Direct Link To This Post Topic: Ph pressures on an echocardiogram
    Posted: 09 Mar 2011 at 1:33pm
Can any one offer me any advice please.

I was diagnosed with ph nearly four years ago, and it's only from the information from your goodselves that I realise that I haven't been getting the help from the medical profession that I should have had.

I have to go to hospital next week for more tests, but wonder if anyone can advise me please if it is possible for the pressures to change on an echo, ie. sometimes better than others, or do they either remain static, or get worse.

If the pressures on the echo are better than the previous one, can the hospital turn round and say that I don't have ph any more, or is it a case of there will naturally be ups and downs and fluctuations at different times as with so many other illnesses?

Any adice from your goodeslves 'the experts' will be greatfully received.
Back to Top
Richard View Drop Down
Member
Member
Avatar

Joined: 25 Oct 2010
Location: Shropshire
Points: 55
Post Options Post Options   Thanks (0) Thanks(0)   Quote Richard Quote  Post ReplyReply Direct Link To This Post Posted: 09 Mar 2011 at 3:51pm

Hi Katie,

An echocardiogram would not necessarily reveal the exact pressures in your heart.  An echo shows the structure of your heart, and which parts are not functioning correctly and any abnormalities plus a rough estimate of the pressures.

Your experience reminds me very much of my own.  I was diagnosed with PH in 2005.  I was already on Frusemide, Perindopril and Atenolol before the PH was diagnosed.  The consultant who diagnosed the PH also found I had Sleep Apnoea.  So, the only additional medication I received was Warfarin, to thin my gloopy blood, overnight ventilation, which breathed for me when I was asleep and 16/24hr. oxygen.

After my diagnosis of PH, I trawled the internet for more information, and came to the conclusion, as you presumably  have, that I was, for some reason, missing out on a range of new medication that would treat my PH.  I was told I had PH, and then, more or less, left to get on with it; but I saw on the web, the PHA website, in fact, that people with PH had a little gadget that injected them every few minutes with a drug that kept their PH under control, and there was a whole collection of other drugs that no-one had offered me.

I can understand where you’re coming from: you will have read on the internet how serious PH can be, that it is incurable and usually fatal.  And there you are, not getting the medication that every other PH patient seems to be getting, so you draw the only conclusion you can, don’t you?

To establish the severity of your PH you need to undergo a Right-Heart Catheterisation Test. 

The procedure involves passing a catheter directly into the right ventricle, with a sensor on the end of it detecting the blood-pressure at that point.  This is usually done through an incision into a vein in your neck, under local anaesthetic, with the figure displayed on a screen in the theatre as so many millimetres of mercury.  The threshold for pulmonary hypertension is 25mmHg at rest, so any reading above that is PH.

This may require a hospital admission with an overnight stay or possibly two nights, however for some patients are discharged later that same day.

To have an RHC done, as I found, you will have to badger the consultant who diagnosed your PH.  He will probably resist and say you don’t need one.  But don’t be put off: you have a right, because if you are diagnosed with PH, but have never had an RHC, you don’t know the severity of your condition.  And without knowing that, it’s difficult to be positive about your health.

Whatever the result, a RHC will put your mind at rest and you will be able to accept both that you have PH and why you are not prescribed a whole raft of new drugs: simply because you don’t need them.

I would guess that your RHC would be performed at a specialist centre.  Ask your consultant (you can phone his/her secretary for this) and say you want to be referred for an RHC.  There is a list of the specialist centres on the PHA-UK website

 
An RHC will answer the question: how ill am I? You can then carry on with your life having come to terms with the things you can’t do and enjoy the things you can.

  

THIS IS NOT MEDICAL ADVICE

 

 

 

Back to Top
Rita View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Brecon Wales
Points: 399
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 09 Mar 2011 at 6:24pm
Hi Katie
I remember your post when you first started posting. Have you been referred to a Specialist
Centre?  because if you haven't when you next go to your local hospital I would suggest
 you ask why you haven't been referred to a Specialist Centre. I'm sure the Specialist Centre
would deal with all your questions and would put your mind at rest. On the homepage of
this site there is a very imformative outline of PH.
Hope you get sorted and enable you to live your life to the full.
Keep us posted to how you get on.
Good Luck
Rita xx
To receive a smile give one away
Back to Top
debsie View Drop Down
Member
Member
Avatar

Joined: 29 Oct 2010
Location: West Midlands
Points: 118
Post Options Post Options   Thanks (0) Thanks(0)   Quote debsie Quote  Post ReplyReply Direct Link To This Post Posted: 09 Mar 2011 at 6:41pm
Hi Katie,you really do need to go to a specialist centre,i also live in the west midlands,i live in halesowen,which area are you from?,i attend the royal hallamshire in sheffield,the sooner you get a rhc done they will be able to start you off on some form of medication,which in time will help you manage your condition better ,take care love Debbie x
hugs and kisses
Back to Top
Rita View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Brecon Wales
Points: 399
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 09 Mar 2011 at 8:25pm

Echocardiogram

What is an echo and what does it show?

An echocardiogram, or ‘echo’, uses ultrasound to show a picture of the heart at work. It is a very safe test – it is also used to examine babies in the womb, and the ultrasound waves cannot be felt.

An echo is used to look for abnormalities in your heart or the way it is working. The echo can also give a rough estimate of:

Because of this, an echo is often the first test that picks up pulmonary hypertension (PH). However, because an echo only gives rough estimates, other tests are needed to confirm if someone has PH or not.

------------------------------------------------------------------------------------------------------------------------------
This is the information about echo's from this site
 
Rita
Back to Top
Aleksandr View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Points: 236
Post Options Post Options   Thanks (0) Thanks(0)   Quote Aleksandr Quote  Post ReplyReply Direct Link To This Post Posted: 09 Mar 2011 at 8:35pm
Hi Katie

A 'dopplar echo' can give an estimation of the pressures in both atria and in the right ventricle. It can also give an estimation of the pulmonary artery pressure. However, as others have said the only way to get an accurate set of measurements is via right-heart catheterisation.

As for the severity of pressures. Pressures are not something to get hung up about. You can have higher pressures than someone else with PH yet be able to do more than someone with milder pressures. I, for example, have higher pressures than a few people I know yet my exercise tolerance is far higher than theirs. The advantage of the specialist centres is that they can take the results of a whole range of tests and in conjunction with how you're feeling come to a conclusion as to how you are.


Back to Top
Miriam View Drop Down
Member
Member
Avatar

Joined: 25 Oct 2010
Points: 240
Post Options Post Options   Thanks (0) Thanks(0)   Quote Miriam Quote  Post ReplyReply Direct Link To This Post Posted: 10 Mar 2011 at 5:55pm
Well, my pressures are veery low but I'm in a dreadful state, so Loz is right.  The pressures aren't always what you should look at.
 
You do have be seen by a specialist centre and of your consultant won't refer you, your GP can.  He simply needs to fax your nearest centre explaining why you need to go there (a diagnosis of PH) and sending them copies of all your tests.
 
Hope it goes ok and you get there. 
 
PH is incurable.  So even if your pressures go down from the meds, no danger that they'll send you home and say your cured.  So don't worry about that.
Live, Love, Laugh!
Back to Top
Rita View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Brecon Wales
Points: 399
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 10 Mar 2011 at 8:27pm
Hi Katie
I remember you saying you had blood clots the cause of your PH, there is an operation called a pulmonary endarectomy that could offer a possible cure if your
suitable for the op. I do hope you get to a specialist centre pretty soon.
take care
Rita x
To receive a smile give one away
Back to Top
KatieC View Drop Down
Member
Member
Avatar

Joined: 24 Oct 2010
Location: West Midlands
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote KatieC Quote  Post ReplyReply Direct Link To This Post Posted: 12 Mar 2011 at 1:14pm
Hi Everyone,

Thank you so much for your replies, your advice as always is very helpful.

The overriding thing I've taken from your replies is that a right-heart catheterisation should be performed to determine properly what is happening, and that pressures on their own do not determine one's capacity to live an ordinary everyday life. I can see that even if you have a high pressure in some cases you are able to do more than someone with a low pressure.

As a result I'm going to concentrate on my abilities, not pressures when I go to hospital this week for tests, [as my abilities are not great at the moment]. I've made a list of questions to ask using all the useful advice you've given me. I'm hoping - crossing fingers and toes, I may get somewhere as I'm seeing a new consultant.

Like everyone on the forum I could write a book about my journey so far, I just hope that this week when I see the new consultant it will be the start of a more positive journey, and the beginning of a better quality of health.

Thanks again everyone, I do appreciate all your help so much! Smile


Smile
Back to Top
jet View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Reading
Points: 350
Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 12 Mar 2011 at 1:16pm
Good Luck Katie I do hope all goes well for you and you let us all know how you get on xx
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
Back to Top
Richard View Drop Down
Member
Member
Avatar

Joined: 25 Oct 2010
Location: Shropshire
Points: 55
Post Options Post Options   Thanks (0) Thanks(0)   Quote Richard Quote  Post ReplyReply Direct Link To This Post Posted: 13 Mar 2011 at 12:09am
Hi Katie,

You should never under-estimate the power of positive thought.

And I learned something from your post, too; so, many thanks for raising the question.

Best of luck.


Richard
knowledge is for sharing
Back to Top
margwxs View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Cornwall UK
Points: 237
Post Options Post Options   Thanks (0) Thanks(0)   Quote margwxs Quote  Post ReplyReply Direct Link To This Post Posted: 15 Mar 2011 at 9:16pm
Just wanted to say good luck at your visit to the hospital. Like you, I was diagnosed with PH and put on Warfarin and told I couldn't go home until oxygen was insatalled. As I wasn't on Oxygen in hospital, I presumed it was for use in an emergency!! I was given no other information about PH. However, I too found this website, and started a steep ;learning curve. I got my GP to refer me to Papworth and the treatment and care, as well as advice from there, has been good. Also knowing there is a number to phone if I have any problems, is a great help.
Hope you can get to a specialist unit very soon and get the proper treatment.
I am having RHC done again next month, when I go back into Papworth, and hopefully will learn from that if the treatment has made a difference. Last October I was told I needed surgery, but am hoping that there will be enough of an improvement for me not to need it.
Regards
Margaret
Music makes the world go round
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down