Steroids

Dr H came this morning as expected, but didn't broach the subject of triamcinolone and a change in steroid medication. We discussed the immediate aspects of my treatment and the fact that I'd had a very bad night last night, and then he asked if I had any questions. Well yes, I did. The big question hanging over me was about trying triamcinolone as we'd discussed earlier in the week before he'd gone away. As I said yesterday, I had thought Dr H had got some measure of where I'm up to with my asthma in terms of physical and emotional stamina, that he'd understood, and maybe he has, but something had changed by this morning. Perhaps it was his time away doing whatever he's been doing for the rest of the week; or perhaps he applied professional emotional detachment (not always a good thing, in my opinion); or perhaps he's just a man being a man who doesn't want/like to 'do' emotions. Maybe it was something else. Whatever it was, though, was harder and less approachable. Less forthcoming. Almost less understanding.

I realise now that I'd slipped up and had allowed myself to let a smidgen of hope squeeze through the cracks. Maybe it was helped along by the positive vibes I had got from J, and having been introduced to someone for whom triamcinolone has been beneficial. I think I'd told myself that that introduction wouldn't have happened if it wasn't at least likely that I'd be allowed to try it, and that J saying, 'He's game if I am,' was almost confirmation that it was practically decided that I'd be given this opportunity.

I am a fool.

I had been led to believe that J and Dr H would be having a conversation about it all, and then would follow a conversation in which I was included too. Perhaps the first of these conversations happened, but I'm not convinced.

This morning, when I asked Dr H about triamcinolone, he basically said no. Now it's not quite as straightforward as that, and I know he's not dismissing everything I said to him on Monday, but I feel almost bereft. The reasoning behind this retraction is that there is no direct equivalent of dose between prednisolone (my current steroid) and triamcinolone, which makes the transition complicated. Dr H knows what dose of triamcinolone he gives to patients on a much lower maintenance dose of prednisolone, e.g. 15-20mg, but not for the dose that I take - 50-60mg. He said that they'd have to give me so much that he's not sure it's feasible/possible. I understand that. I can appreciate that. The logical part of my mind can see where he's coming from, but the emotional part is screaming that surely this must have crossed his mind before and if so why mention it in the first place and plant those first seeds of hope?! It is unfair of him to have done that! I'm cross! I'm fuming!

I'm broken.

But I said before that the no is not a straightforward no. It appears to be a no for triamcinolone, which is shattering, but he said that they might yet try a different oral steroid, beclomethasone. I think I mentioned it briefly in my previous post. It's used a lot in asthma in its inhaled form, but not so much as tablets. In fact I can find nothing about its use in tablet form in the treatment of asthma when hunting on Google. Neither have I heard the same anecdotal evidence for its efficacy in asthma (as tablets, not inhaler) when prednisolone has failed as I did for triamcinolone. This isn't to say that it won't work or doesn't have the same chance of working as triamcinolone, but that it doesn't seem as likely to me because the evidence isn't as forthcoming.

Perhaps my upset over the apparent no to triamcinolone is out of proportion given that beclomethasone is being presented as an alternative, but the lack of evidence or anecdotes of helpfulness does bother me. I know there were never any guarantees that triamcinolone would work for me, but it sounded possible. Beclomethasone feels much more like a stab in the dark, with a vague chance that changing the steroid drug might help but with no/little past experience on which to base any solid hope. Given the option I will try it, because after all I have absolutely nothing else to try, but I don't have anywhere near the same level of hopefulness for a positive result. I was such a fool to allow myself to begin hoping for triamcinolone and the possibility of the positivity that seemed to be being presented to me. I should know better by now than to allow myself to begin hoping when it comes to 'new' asthma treatments for me.

I emailed J this afternoon. I told him what Dr H had said and how the triamcinolone has been retracted as a possibility. I told him of my upset and confusion. I told him I need his help so I can understand what the hell is happening with these apparent opportunities to try to get some life back. I heard nothing back. One of the ward nurses said J had popped up to say goodbye before he went home but he'd seen I was asleep and hadn't wanted to disturb me. On one level I appreciate that, but on another I'm cross because I thought it would have been apparent from my email that I very much needed to discuss the steroids and all the questions I raised.

Now it's the weekend and neither J nor Dr H will be in. It is also a bank holiday weekend so I suspect neither of them will be in until Tuesday. That's a long time to wait for answers that have potential to impact on my life so enormously. Maybe you don't see it that way. Maybe Dr H doesn't understand it as much as I thought he did. But for me it feels like the difference between life and none life. I want to live, but not like this. This is not living.

Telling it as it is

My consultant came to see me on Monday morning and I decided to tell him how the relentlessness of my asthma has worn me to the core. I wanted to be clear that this isn't due to depression or is only about this immediate situation. I wanted to try to convey that I feel as I do because of the years of breathing difficulties, the incessant attacks, the repeated infections, and the lack of proper recovery between hospital admissions. This isn't just about my current situation. There was a time when things weren't quite so relentless, and I was younger so perhaps I had more stamina, but now I get no relief and there always seem to be something, some health difficulty, causing a problem. I don't have the energy any more.

The problem is that I want to live. I was apprehensive telling my consultant all this and actually saying, 'I can't live like this any more,' because I didn't want him to think that I'm suicidal. I'm not. If anything this is the opposite of being suicidal. I want to have a life beyond my disease, to have energy for living and doing things, for there to be more to 'life' than hospital appointments. I do try to get out and do things, to make the most of what I can when I can, but life has shrunk and asthma and illness have taken over far too much.

I'm not just feeling sorry for myself, although yes, perhaps there is a small aspect of that in there too. However, the overriding thing is needing more to life than I now have, and needing some improvement in my health to have that. All aspects of my being - physical, emotional, spiritual - are depleated, having had chunks ripped from them by the endless battle to breathe, with infection, with side effects from medications. At times I feel as though there is nothing left to me except illness and disease.

So I told Dr H all this, and I told him that I can't live like this any more, and he went very quiet, and he looked the saddest I have ever seen him. For a moment I felt guilty for inducing that sadness, but it was also good because it meant he understood, and he did understand. After a few moments of silence he slowly came back and then said, 'But you know that I don't have anything more to give you.' I do know, and that is the problem. It's not his fault, it's just that I'm at the end of the treatment line and have been for a long time. There had been the possibility of a new drug - mepolizumab - specifically developed for people with severe refractory asthma, but earlier in the year NICE (National Institute for Care Excellence) refused to approve it, seemingly largely on the grounds that it's too expensive and will benefit too few people. Dr H and a cohort of other specialists in difficult asthma submitted an appeal, the results of which are expected sometime in June, but Dr H has also told me that even if NICE approve mepolizumab this time I may well still be precluded from having it because my steroid dose is so high.

Dr H has been my consultant for twenty two years, during which time we have tried practically every medication there is. Still my asthma has deteriorated and I've been dependent on high dose oral steroids (prednisolone) for something like eighteen years. My current dose is 60mg and this is a reduction from the 80mg I was on six weeks ago. Steroids keep me alive, but they are also destroying my body in lots of ways too.

On Monday morning Dr H asked me if we'd ever tried a different steroid. We haven't. He said that in theory there should be no difference in therapeutic effect between steroids, but actually he has seen one steroid in particular - triamcinolone - have very good effect in some people who previously got little benefit from prednisolone. It is an old medication and, as far as I'm led to believe, it isn't used much in asthma. It used to be available as an inhaler, but Dr H was talking about it in its injectable form. It's given as a four-weekly injection into deep muscle where it is slowly released over time. It has been used in some where there's been question about their adherence in taking medication, but that's not the issue with me. The issue with me is how well I am absorbing the prednisolone and how well my body is utilising it. There's no question that I am absorbing some of it, because if I weren't I wouldn't have the side effects I do (most notably these days the diabetes), but to how much positive use is my body putting the prednisolone?

So this question of trying triamcinolone has arisen. I have talked about it with J, the Complex Lung Disease Nurse. I've asked friends who have severe refractory and/or brittle asrhma if they have experience of it and talked with those who do. J introduced me to another patient who's been on it for seven months with good effect and I was able to ask her questions about the pros and cons (for her there have been no cons!). I have read the patient information leaflet about it that J gave me. I've read various articles about it online. I want to try it. I'm aware that it may have no effect, but it has no chance of having any positive effect if we don't try it. I'm also aware that it may cause more problems with my diabetes, but I think/hope this could be dealt with in collaboration between Dr H and my diabetologist/endocrinologist, which is something I have put to J.

I hardly dare hope that there might be the possibility of some improvement in my health.

After my conversations with Dr H, J, and the patient to whom I was introduced, I haven't been sure if the triamcinolone is something that has been offered to try or merely suggested as a possible maybe. I needed to clarify this so I emailed J and he responded, 'I'm game if you are.' I am. I want this opportunity with all my being. Dr H has been away since after he saw me on Monday morning so there hasn't been any chance to talk about it further or for J to discuss it with him either. But he's back now and will be doing his ward round later today. J said he'll talk to him, and I'm sure they will both talk to me too. Dr H is always much more amenable to ideas if he comes to believe that they were always his (and maybe this was, but from something that J said to me I'm also not sure that it wasn't originally J's idea), and J knows him so well that he's excellent at achieving this. The final decision lies with Dr H, but I have a strong chance of being allowed this possibility of a little bit of hope with J on my side.

It's a frightening thing to let myself hope for this because I want it so much that I'll be crushed if it's taken from me. I am desperate for an opportunity to live again. I may find out if that opportunity is to be allowed within the next few hours.

Relentless

I was discharged from hospital in Edinburgh on 9th April - earlier than I would have been had I been going home, but I went from RIE to my mum's and stayed with her and J for ten days. I'd have liked to stay longer, but I had to get home for various medical appointments - blood tests for immunology, blood tests for anaemia, an appointment with the GI surgeons, an appointment with my GP, an appointment with my psychologist...the list goes on.

I've had five or six weeks out of hospital, but then a week ago I woke up one morning and I was wheezing again. No warning, no apparent reason, no protracted relief from nebulisers. I persisted. I took things easy and didn't push myself. I kept a close eye on things. My lungs didn't ease up, and on Thursday I decided that I ought to get checked over by my GP. When I rang the surgery it turned out they were closing at midday for staff and doctor training, and it was already 11.40am (I'd had the gas man in changing my meter), so they had no appointments, but I mentioned to the new receptionist taking my call that my breathing wasn't very good and she said the doctor would call me. Five minutes later the lovely Dr T rang, said she could hear me wheezing, and that she would visit me at home. I tried to insist that I'd be okay to trundle to the surgery in my wheelchair, but the doctor said she'd much prefer to do a home visit. She knows me well. Dr T arrived within an hour, did a quick examination and assessment and said that she thought I needed to go to hospital, especially given that I was poorly enough to need a home visit. I applaud her stealth and sneakiness with that.

There were no beds on my usual ward at Freeman Hospital so I had no option but to go to A&E at RVI, and from there to the Emergency Admissions Unit (EAU). I was put in the monitoring bay - the part of EAU where the sickest patients go. It has a high turnover of patients with folk being moved in and out at all times of day and night. Lights are always being turned on and off as patients are attended to and tests are done. Monitors alarm constantly. Staff talk. Patients are ill. The patient who was next to me for twenty four hours shouted aggressive demands incessantly. I couldn't breathe and I was exhausted.

I came here on Thursday and it is now Sunday. I am still not breathing easily and I am utterly, utterly exhausted. At the insistence of one of the night shift nurses last night, who could see that the Monitoring Bay environment was doing me no good, I have been moved to a slightly quieter bay in the unit, thank goodness. But I am still exhausted. I am beyond exhausted.

It is only May and so far this year has been dreadful. This is my third hospital admission of the year, each one a battle for breath. No time to recover properly between admissions, and I'm done in. I can't keep doing this. I don't want to die, but I can't keep on like this either. I don't know what the answer is, and this isn't about feeling sorry for myself. I just don't have the strength, stamina, and energy any more to 'live' like this. I've run out of me.