As good as its likely to get

Yesterday my cons told me its unlikely I will get much better in the near future - Im already on unliscensed drugs and maintenence pred. My PF is supranormal so figures look good but Im mostly at 55-60% best - below about 70% I have a permamant cough and struggle with daily life. Best Ive had in past 2mths is under that. Id like to try whacking the pred up one more time but cons not keen and wants me to reduce further, but Im worried as if PF gets to 50% Im meant to phone to be admitted!

8 Replies

oldestnewest
  • Im struggling to get my head around it and accept theres no 'magic wand' (oh if only, eh?). Any suggestions on how I can make life a bit more bearable?

  • Hi Sparkly, I dont have any answers really, but just wanted to say I empathise with how you are feeling. Its taken me a couple of years to really accept where Im at (ie that things arent going to improve - albeit got worse) and I still have days when Im so frustrated. But acceptance is important, it does eases the frustration and constantly fighting to improve things. I found that until I accepted how things were, I spent every day angry and frustrated and wishing things were how they used to be - but that didnt help me at all. I've actually found that the consultants being honest with me about long term prognosis has made me accept things for how they are and adapt to make the best of things. I've realised Im fighting a battle that I have little control over (other than being compliant with meds etc) so changed tack, and life is easier :)

    Yes its mean adaptations like using a mobility scooter and wheelchair at times, but its better than being stuck on the sofa angry!

    Acceptance is a journey, it doesnt happen overnight and its different for everyone, you will get there in your own time and in your own way x

  • Thanks Nursefurby. Strangely, I can cope with the knowledge that the next attack could be the one that kills me, and even with frequent admissions, but am finding it far harder dealing with the inbetween times also being bad!

    Do any of you keep a hospital bag packed? I am wondering if it might be a good idea, or whether thats being too resigned to going in?

  • It's not about being resigned - it's about making your life easier. When I was constantly being admitted I did keep a bag packed and found it less stressful. When an ambulance turns up the last thing we would be thinking about is stuff to take. And my husband whilst extremely supportive had little clue about what a gal needs in hossie to keep her content! Lol

    I totally get where you're coming from with the between times thing x

  • Hey Sparkle, what a crap time for you :(

    I think keeping a bag packed is a good idea .

    We don't currently have one packed for me (it would take half-an-hour minimum for the ambo to arrive!) but we do have half-packed stuff - as in I have all my meds in a zippy thing so that just can be grabbed as one, and a folder of all my notes, hospital letters and so on. I have a toilet bag ready to go in the bathroom with everything in it. So my other half only has to add all that to a bag with spare clothes and a phone charger - we also have a checklist to make sure nothing gets left behind.

    But the main reason it's a good plan is that if you've got a bag packed you're less likely to get admitted. That's how the universe works ;)

    Sympathies on where you're at right now. I don't really have any advice, but I do know it's rough living with that level of constant difficulty. I'm lucky that they found something they could treat, and between that and the extra meds (Spiriva etc) my asthma is no longer a nightmare - it only flares up now when I'm unwell or my adrenal stuff has started to spiral (and seems to be a good early-warning sign of that). Other than those times, I'm only using my reliever once per day on average. I would never have imagined that might be possible.

    Have they looked at methotrexate or Xolair for you? I know methotrexate is a scary treatment but I have a few friends on it for arthritis and colitis and it has changed their lives. I guess the other 'next step' is continuous infusion of a bronchodilator? You may already be on these things, or they might not be appropriate for you - I'm just wondering and wanting to reassure you that your consultant might be hitting the pause button for now, but the end of the road in terms of treatment might still be a way off. I can't remember if you're under one of the really specialist difficult asthma teams?

    On the pred side of things - I know that tapering can make some people worse during the taper, and then things can level out again once you're no longer reducing.

    The only other stuff I can think of is the basic care that I'm sure you're already doing plenty of - staying hydrated, watching out for food triggers, not pushing yourself when things start to get uncomfortable but still being as active as you can within that... I'm only bothering to write this because it's easy to forget that stuff. I also found some simple things helped like changing my toothpaste to one that didn't make me cough as badly - starting and ending my day with a big coughing fit wasn't helpful! It's not life changing obviously but little things can help diffuse the cycle / break the spiral.

    Good luck,

    Cx

  • Hey Sparkle,

    I just wanted to add best wishes to everyone elses! Its really tough being in the position that you are currently in. I can fully sympathise as I am in the same position.

    The frequent hospital admissions are a nightmare, as is not being good in the inbetween times. I am finding that I am being discharged, going about 5 days where I deteriorate during that time before the next admission ... you can't plan to do anything.

    I don't think that your consultant has hit a brick wall in terms of treatment, he might be wanting to see whether any of the meds you're on is going to control you? Or even if it could calm down with the weather calming etc. My asthma started spiralling over 6 months ago now, but the really serious admissions have only been happening for the last couple of months - coinciding with the crazy pollen count and then the crazy hot weather and changes in pressure and stuff. I am hoping that it calms down as all these factors change - cant keep doing this.

    I get where you're coming from with not being worried that the next attack is going to kill you! I know that it is a real possibility .... especially if I push it that bit too far, but its not a huge worry, more something that needs to be accepted.

    I point blank refuse to keep a hospital bag packed.

    Just wanted to send HUGE hugs to you and let you know you're not on your own!

    Laura x

  • Thanks for the helpful replies, sorry for being slow coming back, but Im still not good. Actually Im in again, and having thought Id gone to A&E soon enough this time to be in and out, I was almost venilated this morning as my ABGs were so terrible! The dr was suprised I was concious and repeated it twice in case he had got a vein not an artery! Thankfully I bounced back as fast as I crashed so fingers crossed will be home tomorrow (but still on oxygen so we shall see).

  • They talked about methotrexate when I had my long admission a couple of months ago and I turned it down, but am reconsidering it now. I dont qualify for xolair, but am beginning to feel keen to try subcut - a sign of how desperate I am! By change, the on call med consultant this weekend is one of top resp cons in country so I could be in far worse hands I suppose!

You may also like...