Changes: I haven’t been on for a while... - British Lung Foun...

British Lung Foundation
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I haven’t been on for a while for various reasons, but I am so pleased to see that Midge has taken over Don’s poem writing, although I expect some paw holding is going on from Don!

I had an exacerbation at the beginning of December which failed to clear, so had a second rescue pack at the end of the month with a different ab, but became completely breathless and ended up in hospital for nine days with fluid on the lungs (pulmonary oedema) probably caused by my very severe pulmonary hypertension and heart failure, but while there I was also diagnosed with type 2 diabetes. Is there anything else they can find for me? Hope not. I am now having to check my blood sugars twice daily, have been referred to podiatry and will be checked for diabetic retinopathy. I am already going to hospital for my eyes, but think perhaps the undiagnosed diabetes was causing problems all along.

I am a bit worried about the pulmonary hypertension because my breathlessness has got worse again. At 76 I am having palliative care for my heart problems, so have not been sent to a specialist centre for PH, and wonder if I should push for it. Something to discuss with my GP, respiratory nurse who I see tomorrow, and cardiologist who I see next week. I am already on 24 hour oxygen therapy. One piece of good news is that my lung disease is stable. I saw the consultant last week and he doesn’t want to see me again unless I start getting worse, but he has changed me on to Trimbow.

I would find it really helpful for comments about the PH.

Thanks for reading this longish post!

9 Replies

So lovely to see you Carnival but sorry to hear about your exacerbation and other health problems. I can’t comment on your PH but maybe someone else can. Have a chat with the nurse tomorrow and cardiologist next week. Thinking of you. Xxxxx

How lovely to hear from you I’ve been holding my breath as to where you were. I’m so sorry that you have been and remain so poorly, at least everyone is on the case.

I have PH secondary to my heart condition but as the numbers on ECHO were worsening I was referred and assessed by a PH centre. So now I know for certain that there is no drug therapy after a thorough work up. There are cases where there is both pre and post capillary PH and some element of Pulmonary Arterial Hypertension that can be targeted. I see no harm in you and your cardiologist asking whether a PH centre will review your complex case, leave the decision to them. I know that Offcut despite a myriad of conditions is getting drugs for PAH so you can only ask the question.

Take care.


Really good to hear from you again. You have soooo much to put up with. Yes, yes, you must push for specialist help from PH. Is Hammersmith your centre or RBH? Your GP can not refer you, that had to come from your consultant. You have PH for years. It really should have been dealt with way back. Shame on them.

Love and gentle hugs

Kate XX

It's good to see you though I'm sorry to know you've had such a difficult time lately. I hope your appointments go well and the Trimbow helps things to improve. 🤞

Welcome back into the fold Carnival567 , its nice to see you on here again, although your news means you have been poorly and its seems like you should have been looked after better, lets hope you can get some help to make things easier for you x

Hello dear Carnival567 ,

It is so nice to see you again. 🌼 I'm sorry to hear things have not been very smooth as of late. I think you should push for the PH specialist. What harm could it do? They may be able to help you feel better. Please do keep in with and let us know how things are. Much love to you.

Cas xx 💓

Seriously thinking about it after spending an afternoon in the emergency ward at the hospital. They were very thorough but could find no reason why I desaturate so rapidly with the slightest activity. I see the cardiologist next week, and I can also contact the clinic I go to for congenital heart disease to find out why they haven’t referred me. Hope you are continuing to keep well xx

Gosh Carnival that is not good. Best of luck and I very much hope you have some answers to report back to us very soon ((())) xx

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