Confused, easily done!

[Penny326]

I have copd bronchietasis had a heart attack 3 yrs ago, heart failure oh and my heart etc is all on the wrong side.

I'm on 24/7 oxygen very fatiqued, no confidence to go anywhere on my own, I have no idea what all the numbers you talk about are and I see my respiratory nurse once a year, am I being neglected? You do all make me feel reasonably normal by the way. Ha ha.

[cofdrop-UK]

Hi Penny

So sorry to hear you have had so much to cope with and yes by only seeing a nurse once a year, I would say you are definitely being neglected.

I note you have bronchiectasis and hope that you are seeing a respiratory consultant who has a special interest in cf/non cf bronchiectasis/ PCD. As you have situs inversus (heart on the opposite side) I am (yet again) surprised that no doctory appears to have considered Primary Cillia Dyskinesia as a potential reason for your bronchiectasis.

I wouldn’t worry too much about numbers, apart from FEV1, and you can ask for them to give that to you as predicted i.e. 50% would be 50% of what someone who is normally fit and well of your sex, weight and height’s FEV1s would read).

Please ask for a referral to a bronchiectasis specialist.

Good luck and please let us know how you get on.

Cx

[Penny326 in reply to cofdrop-UK]

When I was in hospital with the heart failure the bronchietasis was mentioned very breifly as being something I had probably been born with it has never been followed up I am on the same meds that they sent me home with in 2017, I've only been checked by a cardiac specialist in that time, pulminary hypertension was written on my discharge letter as well whatever that is. I had better start looking into all this. Thank you Coffdrop. 😁

[cofdrop-UK in reply to Penny326]

The fact they suspect you were born with ‘it’ would suggest that the cardiac team suspected you had PCD as it is a hereditory cause of bronchiectasis.

You might find it helpful to speak to one of the nurses at BLF - I am sure you would find it helpful. You can find the name of a resp con who has a special interest in Bronchiectasis (they would also cover your copd) at one of the hospitals in a larger city and then ask your GP to refer you to them. If you have difficulty finding one, you might want to let us know of a city you have access to and someone on here might be able to point you in the right direction.

Love cx

[Phil40]

I would think that you would need your oxygen prescription checking at least a couple of times a year so sounds like you are being neglected.

I would have thought that your meds should be reviewed twice a year too?

Especially if you are concerned and anxious. Ask them to come and talk to you, and have someone with you to help you remember what to ask and what they say.

And as someone else said, I gave up trying to understand the numbers and medical terms too much because a lot of it doesn’t make much difference on the ground.

If you feel crap you feel crap and if you feel good you feel good and sometimes there is just no rhyme nor reason, is the conclusion I come to looking after my Mother.

[Penny326 in reply to Phil40]

Thank you Phil40 sorry to be so long, I'm not very good with this technical marlarky but I usually get there in the end. 😁😘

[Phil40 in reply to Penny326]

No problem I am very hit and miss on line. Hope you’re feeling a bit better