Where next?!

Hiya, this is a bit of a cross post! Sorry in advance.

I am (as some obviously know from other posts!) a Brittle asthmatic, and going through a very rough patch with it, where I have virtually no control over it.

Over the past week I have had a serious hospital admission through asthma. On Friday, whilst being admitted to and treated in ITU the respiratory consultant was happy with how I was responding to treatment etc after things not being good the previous day and hoped that I would be able to get home Sunday/Monday if improvement continued. I was told to book a follow up GP appointment for Monday (today) which I did. I got out of hospital yesterday.

I have just been to see my GP, who is usually absolutely amazing (with a list of questions etc and details of my admission). When I went into the room, she had notes of my admission which had been faxed over in front of her, I was greeted with ""I don't know why you have booked an appointment Laura, because I have already told you there is nothing else I can do for you"". I went on to tell her about how I had been told I needed a follow up appointment etc within 24 hours of my discharge. Spent an awkward 10 mins trying not to meltdown and left with no questions answered - even the fact I need a new spacer as mine has seen better days and currently using it a heck of a lot.

She explained about this being why I see a respiratory consultant etc. That when I need treatment I need to go to walk in/A&E (this is ok when I have a severe acute attack, but what about those slow burners where there is something which can be done sooner and before I end up in crisis?!). I genuinely put off seeing GP if I can help it and whilst in hospital was told I put off seeking help until far too late - a GP can start preventative treatment?! I feel like a fraud and a timewaster.

So now don't know what to do ... my cons has brought forward my appointment to his earliest possible time (2 weeks away), but not sure what to do in the meantime. My discharge letter says about seeing my GP within 24 hours and then again within the week - I don't feel as though I can. Currently trying to stay calm and think pragmatically. But I know that my asthma is not under control and that I am still struggling with asthma symptoms. This means I'll probably end up leaving it until crisis again, when I am sure there are other things which can keep it calm and controlled until I see the cons?! Even if its just a home neb for 2 weeks or something?

Another issue is that I left hospital saying that the upped meds I needed I had enough until I saw my GP today as didn't want to wait until they sorted it through the pharmacy. But in meltdown state I couldn't find the words to tell the GP I need more. Will have enough til the end of the week - pred etc. But don't feel confident enough to contact again, but know I need to.

Sorry for incoherent waffling - if you've got to this point, thank you!!!

Laura x

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All I can say is that GPs are human too, and just as prone to taking their feelings of stress and inadequacy out on other people as the rest of us.

I'm sure there are moments when you're less patient with the kids you teach than you wish you had been - maybe your GP was having a really awful day and felt bad that she'd not been able to help you avoid admission to ITU and a near-fatal attack. That must be scary for them as well.

Given that your GP is normally excellent, I'd put it down to that kind of factor. It *is* completely appropriate that you see your GP to talk through the wider implications of what has happened to you. It's possible that she thought you wanted more than just a debrief. The only thing to do is to get back on the horse asap and get another appointment before the end of the week, and then use that appointment to ask for the specific help that your GP can offer you - even if it's just a place to sort your head out.

I'm sure she's kicking herself for having handled the consultation badly as well!

Hugs, because I know how hard this feels - the constant dilemma about how much and what kind of help can be asked for is exhausting.

Cx

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Grrr, just wrote a reply that disappeared!!

Anyway my suggestion was that maybe you could drop a list of your questions/concerns/expectations etc off, before your next GP appointment. That way you can relax in the knowledge that you won't forget what you wanted to ask, and your GP has opportunity to research and be prepared for the appointment.

What Curioser has said above is a very good point, if she's normally very good, then maybe she's just had a crappy day!!

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Thanks Curiouser!!

I am trying to remember that she is only human and that this is only one bad experience. I have sat and chatted to a close friend about this - GP fitted me in after surgery and was running late, an ""urgent"" appointment rang through to ask to see GP who asked if they could fit in at the other practice late, because she had a lot of calls to make and is running very behind. I do think that she was probably having a bad day.

She was concerned about the ITU admission and the treatment which was required, but this was replied to with: ""I can't do anything from a primary care perspective, this is beyond me, this is why you are under a specialist"".

I do wonder if she thought that I wanted more than just a debrief. But I did explain that the only reason I had come was because I was told I needed a review (its guidelines according to the cons?) - but no obs were done - not even PF or anything.

There is another GP that I feel comfy seeing, should I see towards the end of the week/next week? The GP I saw tonight is as I say great usually, I will probably put through a card saying thank you for her patience etc and hope that clears the air?

TBH I think that I am struggling to cope both physically and psychologically at the moment. My brain doesn't seem to be able to get to grips with the ""near fatal"" aspect and I think that I am probably being too oversensitive.

Grr ... sorry!!

Thank you, Laura x

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Thanks Curiouser!!

She was concerned about the ITU admission and the treatment which was required, but this was replied to with: ""I can't do anything from a primary care perspective, this is beyond me, this is why you are under a specialist"".

Sorry to hear you've been so unwell.

There are some things that she can't do from a primary care perspective but there are others that she can help with. You need to be a bit of a team in this. Our part is to not expect everything from them and be open about that, and their part is to do the bits they feel comfortable with and give you access to the bits that they're not comfortable with. My primary care team will do checkups post severe attacks (everyday/couple days/ week etc), chat things through (emotional/physical/meds), give nebs when I just turn up to avoid a&e and I have frequent reviews and reapeats.

It sounds like she was just having a bad day, we all have them. My GP has said to me that they sometimes find patients with chronic illnesses hard to deal with, they're used to fixing peoples problems, they're limited in being able to fix us and that frustrates them. That's why it's important to communicate and work well with your GP to manage this in the best possible way. They worry about us, we scare them and we need to understand/accept this and that they are a General Practitioner.

I hope you improve soon and you get the support you need from your primary care team. xx

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Again, I can't really offer much more advice but (as you probably know) I have had some really mixed experiences with GPs etc over the last few weeks. One appointment my usual GP can be really sympathetic and listen to what I have to say, at others he is a bit dismissive and will say things like ""I don't know what ou want me to do"". I have also come to see the *silly* asthma nurse a bit like that too.

I think what Curioser said is absolutely right - think of it in terms of the kids at school and how you can be with them sometimes and the child who is really struggling with something, you have used up all the strategies you know, had a bit of advice from outside but still have to put it into practice day in day out (not sure that is clear but I hope you get the drift). Reading the article on here the other day really helped me to realise that being a difficult case is just as tricky for them to deal with as it is for me. I think this also applied when my GP openly said treating me was way out of his comfort zone (yet I can't see cons everything there is a probably so he has to do the best he can).

I hope this all makes sense. I think if you saw her again on another day and was open with how you feel she may respond differently (I have also found being really open with them helps in terms of how much you are struggling to process it).

Take care

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LOL I can totally get the children analogy!! There are days when I reach my wits end for one reason or another (especially if ill!!), and just have to try to remember its not a fault of either the child or myself.

I think I will probably write to the GP and say thank you etc, But also apologise for if she felt I was wanting more info than she could give. Try and clear the air?!

As I say, struggling to process it all. It will be ok though. Made worse by the ""slow burning"" I am doing again.

Laura x

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Thanks Lou, think I was just in a bit of a downer yesterday. Was blue lighted back into hospital last night ... argh!! Managed to stabilise though without needing canulas and avoided ABGs this time so wasn't as bad as a few days ago!!

It's odd, but fantastic that its my resp cons who is doing the ward rounds on MAU - he has just spent along time with me and has said that I am ok to go home today - upped my meds yet again, but was happy for me not to be on 40mg pred, but to taper to 35 :-), but got to stay there for the next 2 weeks until I have my next apt. He has also told me he wants me to see his resp nurse before discharge to come up with a proper plan of action

It needs to be discussed at the apt in 2 weeks, but he has said that I am probably going to need referral to a ""difficult asthma unit"" - I don't seem to tick all the nice boxes!

Mentioned the gp experience and cons feels that she *should* at least be giving the emotional support!! I will still give her a card though. But cons has issued my repeats

Cons has prescribed adcal and upped the symbicort (doesn't seem to like salb) 2x2 400/12 with upto an extra 12 puffs *confused* that's one heck of a lot of ICS - hope will never need that much, makes me more tachy than salb!

Hopefully this will be the last hospital admission for a while! Can't wait to get home and sleep!

Laura x

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Thanks Lou, think I was just in a bit of a downer yesterday. Was blue lighted back into hospital last night ... argh!! Managed to stabilise though without needing canulas and avoided ABGs this time so wasn't as bad as a few days ago!!

I think most people would have been on a downer in your position, one of the reasons you need the support of your GP. Explain to them ho wthey can help you and I'm sure they'll do their best. The sooner you go in the easier it is to stabalise and get home sooner, the longer you leave things the more scary/dangerous it gets and the longer you stay in. Please get help early next (although I really hope there's not a next time).

Cons has prescribed adcal and upped the symbicort (doesn't seem to like salb) 2x2 400/12 with upto an extra 12 puffs *confused* that's one heck of a lot of ICS - hope will never need that much, makes me more tachy than salb!

It is a lot of ICS, but better ICS than pred. That's what I think anyway. That's why I take lots of seretide.

Hope you can get home soon.

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The getting help early is a difficult one. I know that I need to get help quicker when on a slow burner, and I will next time. When I have a ""severe acute"" like last night I know that I need to get help, but then also needed to follow what my verbal plan said. This has changed now and the barriers have changed. Admissions inevitable, but hopefully from now on it will be easier to manage instead of reaching a crisis.

ICS deffo better than pred. Though currently on a maintenance of 35mg pred anyway. Hate the stuff, but necessary evil.

I am home now, going to follow my new action plan (which is amazingly informative!!). Hope to avoid another admission!!

Laura x