Hospital Transfer

[floating_]

So they're trying to see if Barts will accept me as a hospital transfer because they can't get my asthma attacks under control. I'm getting fairly despondent about this all tbh. Despite the high amount of medications I'm on, taking them all correctly and limiting exposure to my known triggers, I'm still having attacks in the evening. It's exhausting.

[Itswonderful]

So sorry you are still struggling. I can’t remember, are you being treated for reflux?

[floating_ in reply to Itswonderful]

I'm on two medications that lower stomach acid (famotidine and sodium cromoglicate), and do have heart burn occasionally yeah. But I asked them at ward round should I be on a PPI and they said no, so they don't think it's that. Also sleep with the head of the bed up a bit, even when I'm not in hospital and avoid my reflux triggers, tbh though my reflux isn't even bad at the moment!

[Itswonderful in reply to floating_]

The problem is with reflux is that it can often be silent so you don’t even know it’s there but it can cause breathing problems. Sometimes you have to change what you eat, how much and when you eat as medications are not always the answer. I am not surprised that the ward do t think it’s that because it is kind of “too simple” if you see what I mean and they are not geared up for it. I’m not saying it is reflux I am just saying it not always obvious. I hope you feel better soon.

[floating_ in reply to Itswonderful]

Good point, although I'm barely eating despite being on pred! Will ask again tomorrow though as you do have a point with it potentially being silent, thanks!

[Itswonderful in reply to floating_]

Complicating factor is that not eating can mean you have a lot of acid too! Pred upsets my stomach as well. Hope you get some sleep. X

[hilary39]

Just wanted to say I'm so sorry to hear this. It sounds exhausting and scary. It's so hard to have severe asthma and to avoid to triggers and to be in a cycle of nonstop attacks. I've been there. Are you on a biologic? Xolair has helped me a lot.

[floating_ in reply to hilary39]

Thank you. It is, and frustrating too. I'm getting Xolair at the end of the month for urticaria reasons, but my allergist said it should help my asthma as well, so fingers crossed. Barts might even let me stay on it if it works maybe!

[peege]

Oh I'm so sorry floating this sounds awful and scary. Hope you got to Barts for help. Have you tried Royal Brompton? Pollution levels have been very high over past weeks.Thinking of you. Peege

[Lysistrata Administrator Community Ambassador in reply to peege]

Just wanted to say that Barts do have a specialist asthma team at the same level as Brompton. I'm saying this because a lot of people, even drs, still think only of RBH for tertiary in the London/Essex/southeast area, but there are others now (plus the other asthma centres across the UK. RBH did used to get people travelling some way, where now they might go to centres at Oxford, Addenbrookes or others).

Floating, I hope they get the transfer sorted and Barts are helpful! It must be so frustrating good luck!

[peege in reply to Lysistrata]

Thank you, that so encouraging for others. P

[floating_ in reply to peege]

Was wondering if pollution is triggering my asthma, it's just a lot to deal with at the moment, they seem to think another condition of mine is playing a role (mast cell activation syndrome) so not sure where that leaves me as a patient, but hopefully someone figures out what to do. Not tried RBH, no, but they did also mention St. Thomas' today as that's where I go for my allergist appointments and so it might be better in terms of treatment link ups if asthma was dealt with in the same hospital. 🤷🏻‍♀️