A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 1 June 2016

Acceptance

It was a long and difficult bank holiday weekend with no answers to all my questions, no conversations with anyone with authority to give any suggestion of answers, and a lot of time to think and fret. I was able to talk about it a little with my mum and step-dad who'd come down from Edinburgh to see me, but visiting times can sometimes pass too quickly, especially when you're trying to make space for serious discussion without being miserable all the time. It can be a difficult balance. We did talk a bit, though, and I cried a bit, and Mum gave me a hug, and neither of us came up with any answers because we're the people with the questions, not the answers. Then all too soon Sunday afternoon arrived, Mum and J went back home, and I had an extra day of weekend to get through before I had any chance of asking the questions to folk with the answers.

Tuesday morning and an email from J in response to the email I'd sent him on Friday. It said that he could understand my frustration and he'd speak with Dr H. I thanked him and waited. I didn't see J today when I thought perhaps I may have done, but he was likely very busy with the curtailed week. I presume, though, that at some point he did have that conversation with Dr H that he said he would, but I'm not sure if it was before Dr H came on his ward round.

At first there was no mention of any of last week's discussions. It was all about what progress I'd made since Friday, how I was feeling this morning, what my peak flows were doing, and planning to get the aminophylline infusion down. All important, but not what was at the forefront of my mind. That came at the end when he asked if I had any questions. I thought he might be a little exasperated when I again rose the subject of the steroids, but he wasn't, and although there was still a lot of that professional detachment from Friday, there was a little more emotional engagement too.

One of the reasons Dr H had given for not giving me triamcinolone was that there is no clear dose equivalent of it to the 60mg of prednisolone I take. A friend had then sent me a link to a web page with a conversion table for different steroid medications, including triamcinolone and prednisolone, which of course flew in the face of what Dr H had said. I asked him about this today and he said that there is a dosage equivalence for the two medications in tablet form, but not converting from oral prednisolone to intramuscular (IM) triamcinolone, and with that he really doesn't know what dose he would give me. That made more sense to me than him just not knowing.

We talked some more about betamethasone, and I put to him my concerns about the lack of any evidence for its efficacy. I have actually found one paper online about its use in severe refractory asthma that's unresponsive/minimally responsive to prednisolone, but it was on a tiny cohort of only twelve patients. Dr H didn't know about it. He said he hadn't known any research had been done on it; it had just been a thought he'd had once and decided to give it a try with a few patients. I have to say that it did surprise me somewhat that he wasn't aware of the paper, but at least he said he'd look it up. So then I went on to say that there had been more articles online about triamcinolone, and more anecdotal evidence of its efficacy, including J's introduction to me of a patient who's been on it for seven months with good effect. I also said that I've spoken to friends who've tried it, some with positive results, and again it's the lack of any kind of evidence of betamethasone being effective that bothers me. Dr H reiterated that in theory there really shouldn't be any difference in their efficacy because a steroid is a steroid is a steroid, but he did then go on to tell me of one man he treated, who had been on high dose prednisolone for a long time with minimal positive effect whilst having a number of the negative side effects (all much like me). After four weeks of being on betamethasone he had piled on the weight, but he was breathing better, had more energy, and was quickly able to reduce the betamethasone dose to levels equivalent to much lower doses of prednisolone. It's only one anecdote of one patient, but it is at least some evidence.

I would like to be able to say that we came to a compromise, but we didn't. What actually happened was that I relented. Or came to accept the situation. Or something in between.

Perhaps it is acceptance. I have accepted trying betamethasone. I am still hugely disappointed that I'm not going to have the opportunity at this time to try triamcinolone, but to be fair to Dr H he did say today that 'It's not an either or,' and that if we can get my overall steroid dose down to more reasonable levels with the betamethasone then we could perhaps give triamcinolone a go (the advantage then of the triamcinolone being that it would mean I could take fewer tablets overall as the steroids would be given as an injection). I guess that, to a degree, I've accepted that betamethasone is my only option ... and all the stress and upset and fretting over the long weekend has exhausted me into a place of thinking that if betamethasone is my only option then at least it is an option, and there haven't been any of those for a very long time. I will try it.

We are hoping that we can get the aminophylline infusion down tomorrow.  The dose has been reduced over the past several days so hopefully stopping the infusion and restarting the oral theophylline will be uneventful, but it's always a slightly anxious time as I've had many disasterous attempts at this in the past. Given that Dr H and I have come to this 'agreement' regarding the betamethasone, I said I needed to know what the plan now is. I can't now be sitting on maybes and waiting for some undetermined start date; I need to know when it will be started. Thinking about it, Dr H didn't actually give an exact day, but said that we'd get the aminophylline down and they'd start it while I'm still in hospital because they will need to keep an eye on me. To me this suggests it'll be sometime in the next couple of days, but I kind of feel like I need to make sure it does actually happen.

Dr H has warned me that my body will probably miss the prednisolone in a number of ways. He didn't say how, but said that I might not feel great. It's not exactly a physical addiction to the prednisolone, but it's something akin to it. I don't know how much of 'not feeling great' and 'withdrawal' from the prednisolone is going to be overridden by the betamethasone going into my system, but then I don't know if there'll just be a straight swap, dose for dose, or a gradual decrease of prednisolone alongside a gradual increase of betamethasone. I suppose these are things to ask and find out about over the next day or two.

4 comments:

vivinfrance said...

I'm sorry for the disappointing outcome to your discussions, and hope that the situation quickly becomes clearer. It's very hard that the Dr can leave you hanging on in limbo. Love 'n hugs, ViV xox

Sara said...

Just stopped by to say I hope things are going better than they were. <3

Helen J said...

Hi Becky
Thanks for writing so comprehensively about your experience with severe asthma and I hope things are a bit clearer now. I work for Asthma UK and we're trying to improve the information we have about severe asthma on our website by speaking to as many people as possible. Would you be happy to fill in our survey and let us know if there's anything you think we're missing? https://www.surveymonkey.co.uk/r/severeasthma16
If you want to speak to us in more detail, please drop us an email at tellus@asthma.org.uk - but no problem if that's not possible. Wishing you all the best,
Helen Jefferies, Health Content Editor

Anna said...

Thanks for sharing..