Pulmonary Hypertension with right side paralysed Diaphragm?

[Offcut]

I hope someone can help clear something up for me?

I have a few heart and lung conditions with arthritis and some other problems to help things along. I have a question regarding my Pulmonary Hypertension with right side paralysed Diaphragm? My Pulmonary Hypertension is mild but from what I understand the right lung is what is fed with oxygen rich blood to keep the lungs working well? My last lung function test showed 57% lung function upright and 45% when flat. I recover quickly but my oxygen levels drop very quickly and I have a low exercise tolerance. I have blacked out taking something not that heavy up stairs. I have also been diagnosed with Restrictive lung disease. Fibrosis, asthma, bronchitis. I spent 32 days in ICU in 2008 and was on an Oscillator for 10 days with a severe lung infection.

My question is I have a right side paralysed diaphragm which has meant my right lung is a lot higher and compressed and damaged. Does this make the condition more severe?

The reason I ask is the specialist at the hospital is basing his conclusion just on the pressure on the pulmonary hypertension and not taking the paralysed diaphragm into account. When I tell him how short a distance I can walk before being very short of breath he has said it should be better than that? But nothing else? He expects I can walk 200 metres in one moment and then says I cannot do PR as I would not cope with the exercise?

Be Well

[Hidden]

That sounds all very confusing - I cant help but would advise you ring the BLF helpline and hopefully the nurses could advise you. Take care, TAD xx

[sassy59]

Very confusing Offcut but I always say these specialists need to look at the bigger picture. You need to know where you stand and TAD gives good advice. Pete also cannot do PR. I think they took one look at him and shoved him out the door! Take care. xxxx

[Hidden in reply to sassy59]

I was told last week that I was considered ineligible for pulmonary rehab because my primary diagnosis is bronchiectasis. I suspect the decision was based on the 6MWT I did in September and that they feel I wouldn't be able for the exercise. Well sod them, I can exercise myself

Offcut you need to ask your doctor these questions and insist on getting answers. I know that's not always easy but persist until you get them to listen to you.

[Offcut in reply to sassy59]

I sort of understand the PR, things I did back in 2008 at PR I would be a non starter now! the specialist wants me to see the cardiologist to change my tablets. But from a little research I have been on the ones he wants that I can take and they have taken me off them after a short time. I do not do very well on some drugs?

[Hidden]

I would really want a second opinion offcut.

[Offcut in reply to Hidden]

I have sent email to BLF and tried to get on the PHA forum but still waiting for them to approve me on there so cannot ask on there

It took me 2 years to get a test for my lungs from the GP who insisted all my problems were my heart? But the cardiologist sending them a letter about his concerns over my poor breathing and my lung conditions?

I think it has come to the point that the specialists are now to specialised in one field to see outside the box.

[Hidden in reply to Offcut]

they have restricted themselves but they should listen to you and act accordingly - makes me mad on your behalf

[Offcut in reply to Hidden]

I understand that on paper I should be doing this that and the other. But I am not the printed word but a fickle human being whose body does not play by the rules.

If they want to take it, that what they say is 100% correct why am I still here! My wife has been told to many times that I am not going to be here in the morning.

In its pure idiopathic form it is a rare disease with an approximate annual incidence of about 2-6 cases per million population. There is a higher incidence of cases associated with connective tissue disease - about 10% of sufferers of CREST/scleroderma syndromes have the condition.

With this information I would assume that my specialist may not know a great deal about it by what he is not telling me.

[Hidden in reply to Offcut]

every person is individual and all that comes with that. That is why a great deal of diagnoses is finger in the air job - unless your leg is hanging off then the best they can do is try and fit it into a category - I do hope you get somewhere and don't give up pushing xxx

[onamission]

I also get very light headed when I become breathless but I can see why your confused sadly Doctors are following the guide lines laid by the specialist.

Most Gp's believe that if your oxygen levels are at normal level then you are ok one locum Doctor didn't want to give me antibiotics because he was going on my oxygen levels and this is not always the case

[Offcut in reply to onamission]

so true i went from 96% with pnuemonia to a lung failure the next morning with a trachi for my oxygen.

[vlarryj77 in reply to Offcut]

My doctor informed me that if I ever got pneumonia that I would die. I am sorry about your condition you are in Offcut. You were never informed of the whole picture that surrounds the condition you had and it is never fair for Specialists to lie or make up stories thinking it will make a patient feel better. I hope you are still alive and doing better if you see this.

[Offcut in reply to vlarryj77]

I have had pneumonia 3 times this last 12 months and still here

[vlarryj77 in reply to Offcut]

Glad to hear it.