I have widespread acute emphysema and have been placed on portable oxygen 4L which is all good, certainly helps when exercising. Yesterday I had a echograph completed and the specialist informed me - yes definite pulmonary hypertension and he will form a report to my doctor. Looking on google, this latest development seems the 'final straw'. Just wondering does anyone else have this problem ?
Look forward to hearing and thanks for reading.
Dampier from Down Under
Yes I have Pulmonary hypertension as well as my pulmonary fibrosis and a lot of other conditions. My PH is mild and controlled by medication which means my pressures at the moment are that of a normal person. It has definitely NOT been the final nail in the coffin for me. You should have a right heart catheter to get a more accurate diagnosis as an echo isn’t precise enough.
Good luck with it.
I too have PH, diagnosed after a right heart catheterisation and controlled by drugs, along with restrictive and obstructive lung disease and various complications of congenital heart disease. I am also on ambulatory oxygen at 4l/min and probably long term oxygen therapy soon. All a d... nuisance but I enjoy my life because it is the only one I have. Of course, like you, I have good days and bad days, and it is certainly not all roses round the door, but I have a loving family and my little grandsons (4&1) don’t care that I sometimes wear a funny tube up my nose to help me breathe. It is always a shock when you get a horrible diagnosis but you are not alone, and everyone on this site will be caring and supportive. All the best for now and the future xxx
Thanks so much, seems we are in a similar position.
You have such a positive attitude. Thank you for sharing your thoughts. Jan
I Was Diagnosed by echo a few years back and my local Lung consultants were not sure what to do? It took another that was higher than before and I was Referred to Sheffield which is my nearest PH centre. I was put though a number of tests and a Right heart Cathersation that comfirmed I am WHO Class iii High. I have multi conditions so I am not your normal PH'er.
I would have a look at the PH Site phauk.org/
This is well worth looking at than Dr Google which can scare you to death. They are moving foraward all the time with PH. As Happyjo states I have just gone with the flow Bad days and good days. Make people aware that you have PH so they make allowances? Get used to people saying "You do not look ill?"
It is not the final straw just something else to live with?
Be Well
I live in the U.S., Las Vegas. I was diagnosed last winter with PH after a high reading on an Echo. I have moderate COPD and asthma. I did a lot of research and after reading the Lung Association website was convinced it was a false positive. They did numerous studies and concluded that up to 40% of people with COPD present with a false positive. I tried to convince my cardiologist of this; he didn't believe it. I then went to a pulmonologist and an asthma specialist who also were skeptical of my reading. So, after three months of worry, I had a right and left heart catherization which proved my pressures were normal (and as a bonus, my arteries are really clear).
From what I understand, you did not have the catherization. I would suggest you do so, to confirm diagnosis.
You seem to have a positive attitude which is a plus. I wish you good luck. Keep us posted!
For pah like i have, a spirometry test won't help. I had one recently and i was normal, albeit at the bottom of normal. My pah is due to blood clots in my lungs, so i can breathe ok but don't get much oxygen. The echo is pretty good. It measures the backflow through a heart valve which is directly related to high blood pressure in the lungs.
I had all the tests. The Gold Standard is the cardiac catherization.
Thanks you are right, it is how you deal with things, nothing new really.
Ok - the person completing the echo seemed fairly convinced, but will see what the outcome is after visiting my specialist.
I personally think Dr Google can more times than not be seen as Dr Death. Very negative and not many positives in the descriptions / sometimes sort of diagnosis if you know what I mean. I wish you well and am pleased you have come onto this site with your questions in a positive way. The members here all give answers they know and also reassurance about getting the "full picture" before making any minds up about diagnosis. Wish you well and all the very best
I too was told I have PH. After frequent chest infections, I was eventually referred to hospital and had Asthma tests etc. I had all sorts of tests and the consultant told me that he had noticed I had a problem with my Mitral Valve and he referred me to cardiology. I was told after more heart test about the PH but it wasn't made such a big deal and was referred to a surgeon to have the valve replaced. I am pencilled in for the op on 27th February 19, the consultant is not sure if the PH will be solved by the Mitral Valve replacement as my lungs are like a balloon which has been over-inflated and it might not go back to normal after the op so I guess I might have to be referred to Sheffield at a later date. So far, other than upping my Ferusomide I've not had any treatment for PH. I agree about Google, PH is a really scary thing to have according to them.
I have emphysema that I was coping well with but 2 years ago I developed secondary pah after a respiratory virus that lasted 4 months. Within 10 days of recovering I found that ,suddenly,i could barely walk.My pulmonoligist says there is no treatment for secondary pah but I cant accept that .I am 64 yrs of age and cannot walk more than a few metres so any suggestions on how to exercise gently would be very much appreciated.
Warm regards to all out ther that find it a struggle to breath,.Sue
Hi there I too have emphysema which is really hard going - no breath - also have p.h., which also causes shortness of breath. I have a portable oxygen which I put into a walker, put the oxygen level on 2 and try and walk around our large inside garage for around 8 - 10 mins per day, I also have oxygen overnight on 1. My specialist said no treatment can be given for p.h., only oxygen - a tough combination of diseases. Good luck my friend.
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