Oh dear. After spending the past few days fully expecting to be admitted from clinic yesterday I know I should feel relieved that I wasn't. Unfortunately I had a bit if a to do with my consultant, who wants to refer me to RBH, and I now feel thoroughly miserable and fed up. Long story short, Ive spent more of the past 6mths in hospital than at home, and although a new plan was put in place during a 6wk admission in the autumn, Ive not really had a break since then with a few nasty colds/infections etc - at present Im 10days into a really grotty cold that has me coughing almost non-stop, but has thankfully had relatively little impact on the asthma. My cons agrees its the cold causing me problems rather than asthma, but has told me to be very careful and to go in if it either doesn't start to shift in the next few days or I get any worse - as the cough has left me exhausted I know I cannot be too careful as I have no energy left to put into breathing if the asthma should decide to play up, and given my tendency to just stop breathing I would need to seek help very quickly.
Anyway, she says we have just not managed to get far enough towards stability or getting my pred low enough (she had wanted me on 20mg for the winter, then dropping to 15 in the spring - I made it to 22.5 before getting a chest infection in Nov, and to 30 before this cold hit me last week). I feel that Id rather wait and see what happens for a while, give myself a chance to get over this virus and then see where we are in a few weeks time - the brief periods between discharge from hospital and catching the next virus have, while short, been the best I have felt in over a year and I am reasonably confident that I actually would have some degree of stability without making further changes.
I ended up getting upset in clinic yesterday, and am embarrassed to admit that I behaved a bit like a stroppy teenager (Im actually 34) saying I wouldnt see anyone at all if she insisted I go to RBH. I am intending emailing her to appologise and also to try to explain my reluctance to be referred on - I actually really like her, have a good rapport with her, and dont like anyone else making decisions about my treatment as she knows and understands me and my asthma - she even came to see me in A&E last week, saving me from another admission!
Hi Sparkly, not sure if there is anything that I can say which is practical or useful, but I will try!!! If not, just want you to know that you are in my thoughts and I am sending a HUGE hug your way!!
Regarding you ""acting like a stroppy teenager"" 1. I am sure that you think that you were worse than you actually were - you have a lot of respect for your cons and they will know that, you only don't want to go to RBH because of your fantastic relationship. 2. I am sure that your consultant TOTALLY gets how you are feeling, she has seen you at your worse and at your best, so even if you were stroppy she won't hold it against you!! 3. I have acted like a real child at some of my appointments (one of them being me spending an hour ranting at my asthma nurse and consultant about how I WOULD NOT be referred to a specialist centre!). I had to phone her the following day to apologise for being immature!! She was really understanding, and said I was making a bigger thing out of it than necessary!
I don't know if you are anything like me during appointments, but I close down and cant articulate myself. Its odd because when I went to Sophie's apt I was like a Rottweiler and able to rally (I hope!) help her out. I now write stuff down that I think I need to talk about/make them aware of. I also write things down to accompany my summary so that when I am physically unable to talk in A&E so that they can see what has been happening during the course of the attack rather than me having to talk!! I'm rambling, but what I am trying to say is could you do that before your next appointment, because then even if you cant get it out you can show it to your consultant if it all becomes too much?
One thing I will say is that while it may feel as though your cons is giving up on you, I don't think this is the case, they want the best care and control as is physically possible for you and for you to have as normal a life as possible. But I do think that she is potentially missing a point in that you have had some time where your asthma has been really good since starting the subcut and these set backs have all been infection caused! It may be worth seeing if your cons is willing to give you more time before being referred if you are dead set against it until the summer, or when you've been infection free for a while. If things are still rubbish then there may be an argument on your cons side, but until then it might be kinder for them to allow you to stay with the person with whom you have a positive and trusting relationship with!!
I am so glad that you avoided being admitted yesterday, you really need a break. The bouncing in and out is no good for anyone! But especially for you with the lengths of some of your admissions, and after the ""pointless"" one last month!! But be careful and don't push it!!
Gonna stop the waffling, but want you to know that I really understand what you are going through and that you are in my thoughts!! Take care! xxx
Thanks for your long reply Laura, helps me see it a bit better.
Im going to email her today, so she will have had time to read and think about it before I see her on Wed. As you suggested, Im going to ask if we can just hold off a bit, give me time to hopefully go a few weeks without coughs and colds and see whats happening. Im also waiting for both drug allergy testing and physio and would like to know outcomes before making any more changes.
As you know, Ive had trouble in the past with drs contradicting each other and in one case suggesting I was faking low PFs etc! So it means even more to me to be getting consistent treatment from someone who knows and understands me. I think I need to tell her this.
Ill let you know what happens...
Sparkly the only thing I would add from another perspective, is that I was also anxious about being referred to tertiary care, and it was the best thing that ever happened in terms of my lungs. They took it very seriously, started completely from scratch (ending up with total change in diagnosis and care) and to be honest I probably would still be here if that hadn't happened. Your consultants suggestion sounds eminently sensible to me, she is acknowledging her limitations and suggesting an appropriate referral to a more specialist service. That doesn't mean that I don't understand your anxiety though x
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The meeting thread
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