Referral update

[madonbrew]

Today I got a phone call from the hospital asthma nurse, after being referred back to them by my GP asthma nurse.

Was a mixed call...

Firstly, she said she was ringing because clinic are not taking referrals at the moment. I thought great!!!! 😡 I’m like ‘what’s the point of writing to my GP to say re-refer me if they think I need to be seen again??’

Secondly...she asked what my PF was this morning & it’s within 80% of my PB so she said they won’t give me steroids until it’s 50%. I told her I’d be in hospital if I get to 50% of my PB. I told her my PF is sometimes fine...even good but I can’t breathe and she did take note.

She went though all my asthma meds and agreed I was already on unlicensed doses that only a consultant can prescribe and that I still can’t breathe even on them.

She looked at my bloods...that Renal clinic did in May& my brain suddenly thought to ask about my eosinophil count. It’s just below the cut off point before they would refer to specialist asthma clinic at Southampton.

Anyhow, with all that conversation she decided she would speak to my previous consultant again after all and get back to me during the week.

Oh, I also told her that I am wheezy at least half of the time and she said about referring me for physio...in September when clinic hopefully opens again, as I cough loads but often without mucus.

Hmmm, so goodness knows what the outcome will be!

Will keep you updated!

She also asked if I’d had whooping cough or pneumonia as a child, which I hadn’t. Not sure why that was?!

[Junglechicken]

Hi Madonbrew. The steroid conversation reminds me of one I had with my asthma nurse at my previous surgery. I was feeling pretty bad at the time and asked about steroids. She said that I could only get steroids if my PF was around 200. That’s 43% of my PB! I said if that happened I needed a lot more than steroids, I would need an ambulance!

[madonbrew in reply to Junglechicken]

That’s totally like me!!!

Did she give them to you?

Stupidly, me and my surgery asthma nurse...who knows my asthma well , spoke about steroids the other day but got side tracked with adding back Alvesco and forgot to come back to the steroids. Think she was stressing because I’d accidentally got put down to see her in person at the surgery rather than a telephone appointment.

Hey ho!!!

How are you doing today JC?

[Junglechicken]

Thank you for asking 🙂I’m feeling so much better today. I upped my combo preventer inhaler last night and this morning. PF now close to PB from being in the amber zone. It has proved that there’s something up with the old lungs. It is however too high to be a maintenance dose and I’m sure my breathing will get worse once I drop back too the regular dose. It’s happened after my previous 2 attempts in the last few weeks to sort things out😔. I do have a plan b that I’m going to try after this one last attempt to sort things out with the Seretide.

During the above mentioned consultation with AN I didn’t get steroids.

[madonbrew in reply to Junglechicken]

Good to hear today is better! If that dose is helping it sounds like your GP /hosp doctor needs to change your meds so that your preventer inhaler is a high enough dose for you to be able to maintain. Like BB said...maybe a referral is needed. Once you get to the top dose your GP is allowed to prescribe, only a hospital dr is allowed to step it up higher.

[Junglechicken]

Well, I saw a consultant last year privately through my medical insurance (very very long story) and he identified several issues. I was on a boat load of meds that I’ve gradually cut back on. My plan B that I ok’d with GP was to go back on to those meds and see if it helps. I keep putting it off however. My breathing was smashing and my quality of life was much better when I was on them. I was worried about side effects (I’m terrified of anything medical related) and thought after my last asthma review I would see if I could manage with just the combo inhaler and salbutamol. I’ve definitely seen a gradual decline in control since. I think it’s time to accept that I need the extra meds😔.

[madonbrew]

Oh bless you! I understand what you mean about taking meds and being terrified & side affects etc. But like you say...remember how much better your quality of life was with them! If your GP agreed then maybe it’s worth doing again!

I have multiple health problems...some random autoimmune disease causing me chronic pancreatitis, chronic kidney failure and insulin dependent diabetes, but out of all of these, the thing I find most troublesome is my asthma!!! Breathing is our most primary need in life and when we struggle it’s so much hard work...

So my point is...if those meds help you and your GP is happy, then go with them. Of course there can be side effects, it’s weighing up what’s more problematic!

Please let us know how you get on!

Dee

[Junglechicken]

Thanks for your support. I also have another chronic condition for which I need daily meds. There’s three conditions that run in my mum’s family, I got two of them. My other condition could have greater implications for my life style but is extremely well controlled and has given me no problems for over 15 years.

My asthma however over the last year has been so troublesome after many many years of mild symptoms.

I did have very difficult asthma as a hatchling (admissions once a month and weekly nebs. This was the 80’s and attitudes towards treatment were very different) so I guess it’s just raised it’s ugly head after years of dormancy. Aggh!

[Jimmy-Lyden]

It sounds like she's fighting her corner, but realises she's on the losing side. Have faith, you're wearing her down with logic!

[madonbrew]

Thank you Jimmy-Lyndon!

She rang me again today and basically said the same. She’d spoken to the consultant and they kept the same plan...to keep going with the Alvesco, refer me for physio & do IgE bloods.

Was interesting because I met up with my friend today who has lung stuff too& under the same hospital & her appointment got cancelled with Thoracics too 😡

[ReedB]

I feel your frustration madonbrew. I dread being seen by different doctors and nurses as they tend to think I'm popping steriods like smarties. A few times they've tried to say wait til peak flow is at x %. Always results in an emergency call and longer courses.

I'm waiting to be re-referred too but can't see anything helpful happening soon. Hate to say, as much as I Iove and appreciate the NHS, I've started looking into private care. I need my lungs to work!

[madonbrew]

It’s so frustrating isn’t it, when you know your own body and what helps and doesn’t &when you know you need extra help and can’t access it! Aaaaghhh !!!

Your message and everyone’s kind responses nearly made me cry today. I think I’m just feeling a bit down with it all and the struggling for breath and not falling into right boxes for things. I’m the type of person who just gets on with stuff despite how I’m physically feeling and on the whole, look fine on the outside and see the funny side in most things, so people often don’t see when I’m seriously struggling, because I’ll probably still be smiling and fighting not to look needy.

Sorry for all that waffle! Hmm...where did that all pop up from?? 😂

Yes, you definitely need your lungs to work! It’s hard isn’t it when you’re waiting for re-referral & not holding out much hope. Hmm 🤔 tricky! Maybe going private is the way forward atm for you?

Hugs 🤗, Dee

[ReedB in reply to madonbrew]

Hugs back at you! 🤗

These last few weeks I could have written the exact same waffle. Usually quite a stoic (stubborn) person and, like you said, I just get on but it's hard.

We're looking into private health care through my husbands work. We're by no means rich but if it leads to better quality of life I think it may be worth it. My two favourite gps have disappeared this last year and it does scare me having to deal with symptoms myself. It's never reassuring when I have to tell the doc what to do!

I hope you get some respite today. Feel free to message me if you need to vent. 😊

[madonbrew]

Thank you so much! It’s amazing how much messages from lovely people on this site can help pick you up!

That’s tough when your favourite and trustworthy GPs disappear! Especially when your body doesn’t follow the general flow like everyone else!

It sounds good to have the option of going private through your husband’s work! Go for it if it’s an option & will help!

It’s not been too bad today. I can tell the Alvesco is starting to kick in...my PF was almost my PB this morning! Hasn’t been that in 2 years! Hmm, only thing that comes with it too is the shaking! But, I’d rather be shaking every day and be able to breathe than about what a loone I look like shaking!!!

Likewise, message me anytime!