PH and age

[Carnival567]

I never know whether it is age or complexity which is the reason I haven’t been referred.

[Offcut]

You do not say your age? However I was 62 when I was referred to Sheffield. I am also classed as complicated by my PH, Cardiac and Respiratory Consultants?

I had a long journey to get the investigations needed as I was getting each consultant putting blame on either my heart or my lungs? Neither seemed to accept that even though while sitting down my stats were not that bad! I always explained that sitting down has not been the problem but doing the mildest of things I am so short of breath it can make me feel ill. It took a meeting of 3 sets of consultants (From 2 hospitals )to look a lot deeper and I was found with mild PH however when tested again it showed high!

Being the person I am, I read so much about the PH I suggested at my next meeting I be referred to Sheffield as it is my easiest PH Centre. I have been 5 times since and I am due another RHC this month to ascertain if my meds are helping or need changing?

BE well

[Carnival567 in reply to Offcut]

I am 76, with congenital heart disease, PH, type 2 diabetes, and restrictive and obstructive lung disease. Like you I am ok if I am doing nothing but as soon as I do anything at all I rapidly desaturate. At the moment I am sitting in the A & E ward at Southmead hospital in Bristol, having been sent by my concerned GP. I no longer have the pulmonary oedema but otherwise nothing has changed, and I am waiting for a consultant to decide what next. We have been here since 12:15 and all I have had to eat is an egg sandwich. I have just asked for something before I go into a hypo! Thank you for your reply, really appreciated.

[Ergendl in reply to Carnival567]

How did things workout by the end of that visit, Carnival?

[Carnival567 in reply to Ergendl]

They were very thorough and helpful but I didn’t see the medical consultant until 7 pm who said that nothing had changed since I was discharged in January and because my medical history is so complicated and rare he wasn’t going to do anything that might make things worse and to discuss it all with cardiologist next week. Very honest and kind but not much help. Very few non specialist medical consultants have come across congenital heart disease, understandably, and I usually have to explain. So, nothing has changed except that the problem is now on my hospital notes! We got home at 8.30 pm. I still don’t know whether it is age or medical history which has prevented referral to a specialist hospital. I shall pursue my queries next week. Tonight I have another appointment at another hospital about a lump on my leg which is possibly a cyst, and then another appointment on Monday at ophthalmology. As one of the nurses said yesterday we have a wonderful social life.

I hope you are keeping well x

[Offcut in reply to Carnival567]

I have had that I was in Weymouth A&E last year while on holiday and I got a very glazed look off the nurse when I went through my conditions. Explaining to her that PH is not the normal run of the mill "Blood pressure!"

I had to go for my COPD review yesterday and that put the fear of god into the nurse as she read the notes and treatments for me to then tell her I also get 2 meds from Sheffield as well. It was the same response will not even think of changing anything incase it upsets the balance.

I hope you improve and the leg is okay.

Be well

[Carnival567 in reply to Offcut]

I have got to the stage when I carry my notes with me whenever we go somewhere different. It doesn’t help that our excellent GP is in Wales although we live in England and the two NHS can’t communicate with technology so I always have tell English medics that they have to actually send a letter! I am off to the Welsh hospital shortly for the ultra sound scan, but Monday’s ophthalmology appointment is cancelled as the consultant is unwell. Not sorry as it was 9 am 25 miles away down the M4. I hope the next one is a bit later.

All the best

[Ergendl in reply to Carnival567]

Thanks for the update. I hope your continuing investigations start to produce some useful diagnoses and prescriptions to improve your everyday life.

[winfar in reply to Offcut]

My case and subsequent appointments sounds just like yours. For years i have been told, it is not the heart, it is the lung and visa versa. My breathing upon the slightest exertion is awful but my sats are always good, generally 95. Every consultant told me i had pulmonary fibrosis but i did not receive any treatment until i asked for azythrocine 3 times a week and also carbacistine. Unfortunately i now have other problems, still with no proper diagnosis. I think NSIP was last mentioned one. They don’t seem to realise that when they say, see you in a year, how hard it has been to get to their appointment.

[Carnival567 in reply to winfar]

I don’t suppose we are the only ones. I feel lung disease is quite neglected, and most people seem to think of asthma. Congenital heart disease confuses them even more, most young doctors haven’t a clue, even though there are more adults than children with it because the NHS has been so successful. My last cardiologist, a lovely man with whom I had good rapport, said to me that the problem with me was that I had had my surgery so long ago and I am still alive, so they don’t know what to do with me. They are working hard, but haven’t any reference points.

All the best