A favourite quote and a way by which to approach life.
Wednesday, 16 November 2016
I started the betamethasone a few days after last posting here, while I was still in hospital so they could watch for any immediate difficulties, and we did a straight swap from 60mg prednisolone to 9mg betamethasone. Thankfully the swap was uneventful and I was able to go home a day or two later.
It very quickly became apparent that I was absorbing the betamethasone very differently to the prednisolone. The first noticeable difference was that I was bouncing with energy. It was a false energy that I did know from previous very, very high doses of pred, but never to that extent. I easily managed on four hours of sleep a night, and this was immediately after the admission when I knew that my body was actually exhausted and needed rest, but I couldn't. I was bright and was eager to get on with a big declutter of my flat, starting with the bedroom. Every day was filled with sorting through everything in my bedroom - in the desk, in the wardrobe, under the bed, in files I hadn't looked in for years. I shredded years of old diaries, bank statements, old business paperwork; took bags upon bags of things to the tip; donated at least nine black bin bags full of things to the charity shop; cleaned the whole room to within an inch of its life; a friend ended up redecorating part of the room for me; I dismantled furniture and constructed new Ikea furniture; and then I started on the living room.
It was very hard work, but I had the energy so I got on with the decluttering while the energy lasted, because I knew that as the dose of betamethasone was weaned down the energy would begin to falter. Of course the activity made me sweat, but I sweated excessively, even sitting shredding hundreds of pages of paper a few sheets at a time would soak my clothes through with sweat. But whilst I was sweating, and sweating, and sweating my body was swelling, and swelling, and swelling with fluid. However much furosemide (diuretic) I took it did nothing to rid me of the excessive oedema, and I was/am on a huge dose of 120mg twice a day.
Then there was the hunger. Of course, using a lot of energy with activity meant that I needed more energy in the form of food, but not that much more, and my hunger was excessive for the energy I was using. I tried not to give in because I am already far too overweight and in desperate need of losing some, but it was incredibly difficult. My hunger was never satisfied. I could eat what I knew to be a normal-sized meal and I would feel as though I'd had a micro snack. I could eat what I knew to be a big meal and I would feel as though I'd perhaps had a light spot of lunch. It was awful to be permanently uncomfortable with hunger yet seeing the weight pile on, which combined with the excessive oedema to change my appearance significantly.
My face, my huge moon face, lost all definition. My nose shrank into my ever growing cheeks, and my chin and jaw were lost to the depths of my neck. This look is typical of someone on high dose steroids, and it is rightly named because the face becomes spherical like a full moon. Yes, I have been moon faced for many years, but never to that extent, never to the extent where it felt like a facial disfigurement. A whole body disfigurement with the extra weight and fluid too.
The disfigurement continued because my skin couldn't keep up with the rate at which it was needing to expand, and my whole torso, tops of my arms, and tops of my legs have become covered in huge, ugly striae. These are essentially stretch marks, but they are so much more than stretch marks. They are deep purple and red lines, some as wide as three or four centimetres, almost looking like huge lacerations snaking their way up my body and down the backs of my arms. The skin is so thin that in places I can clearly see the fine veins below. Sometimes they split and I bleed. They happen quickly too, so quickly that I feel them happening - the fibres of my skin ripping apart, forever damaged, and now that I've lost a little of the weight again, the skin hangs limp, wrinkled, flaccid, separate from the tissue below so that I can pull it with my fingers like stretched chewing gum and just about see my fingers through the two layers of skin pressed together.
This is not me, but it may as well be. This is what my torso looks like, except that the striae on the front of my body go all the way up to my breasts. It is at least a disfigurement that I can mostly hide under clothes, except those at the tops of my arms and the top of my chest that often peak out from under my T-shirts. Of course, there is no hiding them from a medic when I am examined, and although I warn them, and they are used to seeing such things, I still see the shock flicker across their face before professionalism hides it again.
I am told that over time the colour will fade, but I know that the skin will not, cannot, repair itself, and although they may become silvery, they will always be visible.
The plan was to try to reduce the betamethasone dose fairly quickly so that I could try to get to a more normal prednisolone-equivalent dose. I was nervous about doing this because of so many failures of dose reduction with pred in the past, and the resultant life-threatening asthma attacks, but given the rapid destruction of my body I was willing to try. In some ways this was made easier by the fact that each betamethasone tablet was a much smaller dose than each prednisolone tablet, so my lungs kind of didn't notice the reduction so acutely (although it also meant that to begin with I was taking eighteen betamethasone tablets each day!).
I thought that the quicker reduction in betamethasone dose would mean an equally rapid reduction in side effects, but in actuality, the only one that did subside as quickly was the false energy. That was actually something of a relief, because while it was good to be living more in the same time zone as everyone else around me, I could feel that my body was, in reality, completely exhausted. But one side effect that actually continued to increase was severe weakness in my thigh muscles in particular, but other muscles too. I quickly became unable to stand from a chair without pushing off something, and if I ended up on the floor (as is the wont of someone like myself with POTS) then I was basically stuck until someone could help me up or I could somehow clamber onto my footstool and from there shuffle onto the sofa, where I would still have to brace myself for the huge effort and several attempts to get to standing again.
I went to my GP in the end, not really because I expected him to be able to do anything, but simply because the whole combination of all the symptoms, and their rapid progression, was getting to me. I came away with an official diagnosis of Cushing's Syndrome. Of course, because I have been on such high doses of steroids for such a long time, and because I am aware of their many, many side effects, I have been known about Cushing's Syndrome for a lot of years. I have known that I have exhibited many signs and features of it at various times to varying degrees over those years, but there was still something rather shocking about receiving the diagnosis. One thing I have had particular difficulty with is the prognosis as fifty percent of people with untreated Cushing's Syndrome die within five years of diagnosis. My CS cannot be treated as the only treatment is to remove the cause, which in my case would be to remove the steroids. Remove the steroids I die either of an asthma attack or adrenal crisis, as my body is now dependent on the prescribed steroids because it can no longer produce any of its own. I can only hope that I am in the other fifty percent.
Whilst all of this was going on with the explosion of betamethasone side effects and the additional diagnosis of Cushing's Syndrome, another problem was developing. There was a supply 'issue' with the betamethasone at manufacturing level. I had been given enough in my initial prescription to keep me going for quite a while, but before too long I needed another prescription. My local pharmacy was able to honour the first three hundred tablets on that prescription, but that wasn't going to last me all that long, even though I was reducing the dose and therefore eking out the medication. I managed to get in touch with my consultant's secretary and Dr H wrote a hospital prescription for me that he hoped would tide me over until my local pharmacy was able to source the rest of the meds they owed me. The hospital out-patient pharmacy had some, but not enough, and they had to do some internal negotiations to borrow from the in-patient pharmacy so that prescription could be fulfilled. They normally wouldn't be able to do this, but as the problem extended into community pharmacies as well then they made an exception. However, this was not a problem that was going to be resolved in time for the next prescription, and before too long I found myself with only enough tablets to last about six more days and then I'd be without any steroids at all. This wasn't an option.
I had been keeping J, my Complex Respiratory Disease Specialist Nurse, informed all the way through as the problem arose and progressed. He liaised with my consultant, and the three of us ended up having a discussion about it in clinic, by which time I was about three days away from prescription crisis point. Dr H had to come up with a new plan.
One thing had firmly been established - that I clearly hadn't been absorbing or utilising the prednisolone as I ought to have been, and that I clearly was absorbing or utilising the betamethasone very differently. This added credence to the hypothesis that not all steroids are equal, and I needed a different one.
Dr H decided, as I hoped he would, that it would be foolish to go back to a reliance on only prednisolone as it obviously wasn't working satisfactorily. However, we also knew from the side effects that prednisolone had given me over the years that I had been absorbing at least some of it. So Dr H started me back on 40mg prednisolone alongside an injection of 40mg IM triamcinolone every three weeks, with instructions to reduce the pred relatively quickly to 25mg. I wasn't able to reduce it quite as quickly as Dr H had wanted me to, in part because my lungs did notice the reduction, though I did eventually get the dose down to 25mg, and then subsequently to 10mg. Ideally he would like me to get to 5mg pred, but so many things have prevented further reduction for now.
The other reason I was unable to reduce the prednisolone down to 25mg as quickly as Dr H wanted me to was because I ruptured my Achilles tendon. Most people get this injury through contact sports, or extreme adventures, or a vicious football tackle, or some other 'exciting' activity. I did it by slowly walking from my living room to my bedroom. I did nothing unusual. I didn't trip. I didn't fall. I didn't stand on anything, though I did go back to the 'scene of the crime' to see if I'd trodden on something. No, I simply stepped forward as normal and then crunch! Sudden extreme pain, followed surprisingly quickly by relatively little pain, but I couldn't walk properly and it felt 'all wrong.' Another trip to the GP and I came away with an 'urgent 24 hour referral' to an orthopod at the hospital. Only this 'urgent 24 hour referral' took almost two weeks to come through.
It transpired that the betamethasone/Cushing's Syndrome has also weakened my tendons and ligaments, and the orthopod took literally two seconds to confirm the diagnosis of a spontaneously ruptured Achilles tendon. Obviously with my lungs in the state that they are he was extremely reluctant to operate, so it is being treated conservatively - with a moon boot. For the first two months I had a hard moon boot (like that shown in the link) to wear through the day, and a softer, lighter one to wear at night. Since my check up in mid-October I have been able to stop wearing the night time boot, but I still have to wear the heavy, cumbersome one through the day when I'm up and about. Only now I have a matching pair of moon boots, because the stress put on the left leg by the heavy, cumbersome moon boot on the right leg has caused the Achilles in the left leg to tear. Thankfully it isn't a full rupture, but for the foreseeable future I have a pair of moon boots to go with my moon face and alien appearance of my torso.
This is far, far from all that has happened since I last posted, but it is enough for now. I will return very soon with a continuation of the update, but as you have now read some of the traumas of the past few months you may be able to appreciate a little of why I have felt too overwhelmed to write about it. Instead I have been living it and trying to muddle my way through.
Wednesday, 1 June 2016
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.
Saturday, 28 May 2016
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!
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.
Friday, 27 May 2016
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.
Sunday, 22 May 2016
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.
Monday, 4 April 2016
I'm struggling today, feeling very emotional. I'm physically exhausted and emotionally weary, and I'm sick of being in hospital. It's not quite two weeks since I came in this time - though I've a way to go yet until I'm well enough to be discharged - but I had only been out of hospital for two weeks after a three week admission, and I never did get properly better between times. It takes its toll.
The week after I got out of hospital last time I had various blood tests done at the GP surgery, some of the results of which I'm still waiting. One result I did get was my haemoglobin (Hb) level, which was a surprisingly healthy 136, but since coming into hospital again this has fallen to an anaemic level of 95. This is quite a drop in a relatively short time, but not terribly surprising as, for some reason, I have had/been having a gastrointestinal bleed. There was one day last week - I think it was Thursday or Friday - when it was pretty bad and the doctor was quite concerned, but it has eased off now, so while it hasn't completely stopped it isn't as bad as it was. They had been thinking that I'd need an endoscopy or sigmoidoscopy as soon as I'm off the aminophylline, but today the doctor said that so long as there are no more bigger bleeds then it can probably wait until I'm back in Newcastle. That's fine by me, but the anaemia won't be helping my energy levels or my ability to cope emotionally.
For all that I'm away from home, it's good that I'm in Edinburgh and close to Mum and J. It makes a difference having them around. That said, I feel a long way from my friends in Newcastle and the support they give me. Yes, I'm in contact with them via Facebook and some of them text me or send me private messages through Facebook, but it's not the same. I know that Mum feels the pressure too, not that she in any way begrudges me the visits or the time, but she's not young any more and doesn't have the energy she used to. While I'm in here she's having to make all my food for me too because the hospital can't cater for me with all my allergies, and again she doesn't begrudge
me the time and effort, but it is a lot of work for her. I worry about her getting worn out.
Yes, today everything is getting on top of me and I just want to cry. Occasionally a few tears escape, but my lungs don't yet feel stable enough for me to really let go...then there's also the lack of privacy. I'm in a bay with three others. They're nice enough, but I don't really want an audience for my upset. I want to get out of here. I want some energy and some mental strength too. I want to be better.
Friday, 1 April 2016
Way back in September, when I was in hospital in Cambridge, it was found that my IgG levels were really low. IgG is immunoglobulin G and is to do with long-term immunity to infection, though is also a marker for other things. Not long before this I had been taking the drug methotrexate to try to get my dose of steroids down, but methotrexate is also an immunosuppressant (in high doses it it used to treat some forms of cancer), so while my low IgG were significant the doctors weren't overly concerned as it could have been a hangover from the methotrexate. The medics at Addenbrooke's said to wait three months and then have my IgG levels checked again, by which time the methotrexate would be completely out of my system and we could be sure that it wasn't affecting the blood results.
During the three months between September and December I had a huge number of infections, mainly urinary tract infections (UTIs), but these are quite common in folk with diabetes and this time coincided with a worsening of my diabetes. For those three months I was almost constantly on antibiotics for UTIs, and extremely symptomatic of hyperglycaemia (high blood glucose levels), ending up in A&E on a number of occasions with very high BGs (blood glucose). My GP eventually referred me to the diabetes centre to gain better control of my diabetes again, and the diabetologist explained that steroid induced diabetes like mine almost always requires insulin injections for control. I was started on a low dose of a mix of fast acting and long acting insulin in early December, and over the next couple of months the specialist diabetes nurses titrated the dose, alongside the metformin tablets I take, so that we got fairly good control of my BGs. With improved BGs I also had fewer UTIs.
Shortly before Christmas I had those repeat blood tests done to check my IgG levels, obviously hoping they'd come back fine, but they didn't. My IgG levels were still very low so my GP contacted the haematology and immunology departments at the hospital for advice. Immunology wanted haematology to take the initial lead, and haematology suggested a wider screening of some of my other immunoglobulins. I had to wait a good couple of weeks for these results to come through, and in the end they didn't appear to be all that useful because haematology then requested a particular urine test be done to check for something (light chain proteins) that could indicate myeloma - an incurable blood cancer. As you can imagine, this was an anxious wait, but again not a very fruitful one. Yes, the result came back two weeks later as negative, but it then transpired that the urine test isn't very accurate and has a relatively high incidence of false negative results. Haematology requested another test for light chain proteins, this time in a blood test that is much more accurate. Another anxious two weeks passed by and I was eventually given the all clear for myeloma.
In light of the haematology tests, my GP contacted immunology again for their advice on my low IgG levels. They requested an official referral, which my GP promptly did and I quickly got an appointment through the post, although the appointment itself isn't until mud August! In the meantime they also requested my GP do some further blood tests to check my antibody levels for three specific infections - tetanus, pneumococcal, and haemophilus. In the past I have been immunised again both of the former and have had several haemophilus infections, so I ought to have antibodies for all three. We got the results two weeks after the tests were done and they showed antibodies only for tetanus. Immunology told my GP to revaccinate me against pneumococcal and haemophilus, wait five weeks and then check my antibody levels again. If the antibody cover is incomplete then this may well indicate an immunodeficiency disease.
I had the vaccinations seven weeks ago, and I've had the repeat blood tests to check my antibody levels again, but I am still waiting for those results. I'm not terribly hopeful that the vaccinations have taken because when I was in hospital in Newcastle just three weeks ago I was found to have an haemophilus infection.
Doctors now seem to think it is highly likely that I have an immunodeficiency disease, but of course it can't be confirmed until a) I get these blood results, and b) see the immunologist in August. In the meantime I have been getting lots of infections and 'reacting' badly to them, again suggesting the likelihood of an immunodeficiency disease, and it's been mooted that I may have had it all my life and it's contributed to my worsening asthma.
My doctors have all said that given my response to infection, and in light of my very low IgG, I ought to be seen urgently by the immunologist, but there is a national shortage of immunologists and the department is chock-a-block. I have tried, my complex lung disease nurse has tried, my GP has tried, my consultant has tried to get my appointment brought forward, but the department can't do so unless there is a cancellation, and in that instance it's first come first served - the patient/the patient's medical advocate has to contact them at the right time by luck rather than the department contacting those needing earlier appointments. I think this is simply because they are so busy, but it is far from ideal. My complex lung disease nurse (J) said to wait until I have the results of the revaccination antibody tests then contact him and he will try again for me at getting my August appointment brought forward.
I spoke to my GP on the phone last week about some other blood test results and he said he would phone me again in a week's time with the results of my revaccination antibody tests. I was expecting that call today, but it didn't come. I don't know if perhaps he was too busy, or if the results haven't come through. Perhaps he knows that I'm in hospital in Edinburgh at the moment so didn't want to bother me. I may contact the surgery tomorrow to find out. In many ways knowing the results at this stage of things doesn't change anything as no treatment will be given until I see the immunologist (and probably have a load more tests done too), but I still want to know. It feels very significant, especially on the back of these two hospital admissions in close succession due to asthma exacerbated by pneumonias initiated from colds. Both my mum and step-dad got this latest cold from me (sorry Mum and J), and they both said that for 'normal' people it was a very mild affair that was a slight annoyance for three days. I had four days in Intensive Care and I'm still on an aminophylline infusion with lots of wheeze.
Tuesday, 29 March 2016
Sometimes I want to write on my blog, but am too busy to give it the time it needs or I get distracted. Sometimes I need to write on my blog, but I get tangled up trying to work out how to write what I need to say instead of just sitting down and saying it. In recent months there has been so much to say that I've become overwhelmed by the enormity of it so have said nothing instead of everything. That makes for a redundant blog, which is not what I want. I want to write, and I want to write here. I want this place to be useful to others and to myself. The only way I can do that is to get to it and write, so please bear with me while I try to get back in gear.
I can't, at the moment, give a big update on all that I'd like, and it's probably best done in batches anyway. Right now I'm in hospital in Edinburgh, having come up to stay with Mum and J for Easter and it all going terribly wrong because I got a cold. I'm not in the best state of mind, feeling shocked and stunned at how ill I've been and how rapidly I deteriorated. I am overwhelmed by it, and kind of need to talk about it, but also don't quite know how to yet. I had only been out of hospital at home in Newcastle for two weeks and had come to Edinburgh for some recuperation. No chance of that with only one night at Mum's, so I began this fight for life with minimal reserves. Now I feel utterly depleted. Even the skin on the soles of my feet is exhausted, so while I try to get back to writing my blog as I want and need, please bear with me. It's near impossible to start a journey of a thousand miles even with a single step when it almost too much to think about putting your foot to the ground.
Friday, 1 January 2016
2015 was a difficult year in many, many ways with an awful lot of ill-health, but I will let my Review of the Year questions tell a bit more of the story - the ups and downs...
1. What has been your biggest achievement this year?
Probably getting onto the Patient Input Platform (PIP) for the RASP (UK) study into severe asthma. I was asked to apply for a position on the PIP, but there was definitely no guarantee that I was would be successful and still had to fill in the application form (2000 words required) and be interviewed by someone from Asthma UK and someone already on the PIP.
2. What made you laugh most this year?
I think it was during a day of geocaching that I had with a my friend Ruth up at Bamburgh and Holy Island. We had lots of fun and a huge amount of silliness, especially when it came to finding our last cache of the day, 'Cache and 'Tache'
The biggest laughs were as we kept the 'taches on and made our way back to the car, but ended up causing some passers-by to stop their car and chat to us because they were laughing at us so much.
3. What unfulfilled hopes do you have for the past year?
I hardly wrote anything during 2015, either on my blog or otherwise, and I had been hoping to write a fair bit for both my book about my asthma and also my children's book. I know this is a direct result of how difficult the year has been so I'm trying not to be too disappointed in myself.
4. What has been your favourite/most listened to piece of music this year?
There's a Peter, Paul, and Mary song we do at choir (Flotsam) called 'Jane Jane' that I absolutely love singing. I particularly love the arrangement that we do (arranged by the MD, Andrew Scott - Scottee), but I have listened to the original version a lot too.
I have also listened to a lot of Bellowhead CDs both in the car and at home. They're so enlivening, and I've needed a lot of that this past year.
5. What was your best holiday this year?
Well, as you know, my holiday didn't go as planned, but I did have an absolutely fantastic time in Wales before it all turned disastrous in Cambridge, so I will answer this with the Welsh part of my holiday.
6. What new skill, if any, have you acquired this year?
I don't think that I've actually acquired a new skill this year, but I have developed my crocheting skills, and crochet, of course, was my new skill for 2014.
7. What's the best book you've read this year?
My answer to this goes hand in hand with my answer to question two. One of the things I need to be able to do to write is to be able to read, but I've hardly been able to read at all this year either. My concentration for reading has been shot this year, partly because of events - particularly those early in the year - but also because of illness. My diabetes has developed a lot over the past several months and has made me feel terrible, as well as affecting concentration. Anyway, as a consequence, for the first time probably in my entire life, I have only read one book this year, and that book wasn't at all taxing. It was Danny Wallace's 'Random Acts of Kindness'. I am ashamed of this awful tally, although I know that like the writing, it is a symptom of my state of mind. I am currently trying to adhere to a kind of reading programme agreed with my psychologist so that I can read a book that she is keen for me to read. I am looking forward to being able to read again.
8. What has been the biggest challenge of this year?
My health. It is always a challenge, but there have been more challenges this year, particularly with the development/worsening/instability of my diabetes. I have also had a huge number of infections that have required something like thirteen or fourteen courses of antibiotics throughout the year.
9. What is your happiest/fondest memory of this year?
I have two that are of particular note. The first was a moment with my younger brother, C, that I can't fully explain. It was in the couple of days I had in Cambridgeshire after my Addenbrooke's hospital admission, and in my brother's back garden. I can't really describe the moment adequately, but it was a moment of closeness with him ... a unity and togetherness.
The second happy memory was an afternoon I had a couple of weeks ago with my nephews O and D. My brother, M, and his two children were visiting from London, primarily so that M could sort a few things around Dad's will/belongings. He only had one full day to do this so I offered to look after the boys for the afternoon on that day. I took them first to Vincenzos for lunch - they're big fans of pizza and have been to Vincenzos lots of time before with me and my brother, and in the past with Dad too. After that we went to the Centre for Life where they had a brilliant time for the next four hours! I hardly ever get to have my nephews to myself like this so it was a very special day for me, and I know that the boys enjoyed it too. M had given O their emergency mobile so he could call if anything went wrong with me (health wise), and also if he just wanted to call. O decided he did want to call his daddy while we sitting in the planetarium just so he could tell him what an excellent time he was having, and that he was very excited that he was about to watch a film about something called Hubble 25. I had explained that Hubble is a big telescope and camera in space and it's been up there for 25 years, all of which really grabbed O's interest.
10. Of what one creation of the past year are you most proud or pleased?
Hmm, this is tricky as I've made a few things that I've been really pleased with, but I guess one of the things that I was very pleased with was a Christmas present I made for my friend R - some planter labels I painted on small wooden spoons.
This isn't the best photo, but it's the only photo I have of them, and it was taken before they were varnished. Mind you, the varnish was satin so it didn't make them particularly shiny. It was more for protection of the paint than anything else.
11. What new hobby did you take up/old hobby did you reinstate this year?
I don't think I did take up a new hobby this year, and I didn't really reinstate an old hobby either. However, there was quite a time over the summer and early autumn that I didn't do much crochet other than the blanket I've been working. I started a 3-6-5 blanket on 1st January 2015, doing one hexagon a day every day of the year. With times in hospital and other times of being ill at home I got very, very behind at points, and although I eventually managed to catch up with making the hexagons it took me until sometime in October (I think) to catch up with attaching all those hexagons onto the blanket. I did manage to catch up, and I actually finished making and attaching the last hexagon at 11.30pm on 31st December 2015, and that was including the few extra hexagons that I had to do to make the blanket a finished shape. I've spent a fair bit of today working on the border/edging of the blanket, but think I ought to finish it completely over the weekend :)
12. What one thing would you really like to do next year?
There are a few things I can answer to this. First, I'd like to write more ... write something. Second, I'd like to lose weight and get a bit fitter. Third, I'd like to get a haircut with a new style. The third one is most immediately achievable, and I'm planning on making an appointment at the hairdressers for next week.
13. What was the saddest thing this year?
This is an easy one to answer. The death of my dad, and then this so immediately followed by my precious Isobel Artemis going missing and never returning.
14. What has been your best discovery of this year?
Two things - the beauty of the part of Wales that I went to in September. I hadn't been to Wales since I was a child, and never to the southern part of West Wales that I went to this year. I fell in love with that part of Wales, and it was a brilliant discovery.
The other excellent discovery of this year was a recipe for barbecue sauce that I can have (providing I use a Becky-friendly balsamic vinegar, which isn't easy to come by). Oh, and this Becky-friendly barbecue sauce goes amazingly with the unlikely deliciousness that is barbecued gem lettuces. Try them, they're amazing, and make lettuce into something that's actually exciting!
15. What news story of this year has had the biggest impact on you/do you most remember?
Gosh, there have been so many terrible things in the news this year, but I think it's probably been the European refugee crisis, and also the African Ebola crisis. Both are/have been truly awful, and the migration/refugee situation shows no sign of abating. I have also been appalled by the UK government's response.
16. What's the best film you've seen this year?
I've only been to the cinema twice this year. The first time was just a few weeks ago when I tried to go and see 'The Lady in the Van', but it was sold out so ended up seeing 'Brooklyn' instead. The second film I went to was a couple of days ago when I went to see 'Carol' with my mum and step-dad when I was up with them for Christmas. 'Brooklyn' and 'Carol' are very different films and difficult to compare, but perhaps 'Carol' just pips the other to the post. Not sure.
17. What was your best buy this year?
No hesitation at all in answering this. By far my best buy was my gorgeous and delightful kitten Katinka Manjulika.
She is gorgeous, nutty, and has brought me so many smiles and huge laughter. My precious girl.
18. What has been your best day out this year?
I think probably the day out I mentioned before with my friend Ruth when we went geocaching up at Bamburgh and Holy Island. It was a day of great fun, great friendship, great weather, great laughter, great silliness, and of pushing myself to do more than I would on my own.
19. If there's one thing you did this year that you'd do differently if you could, what would it be?
I've thought about this, and I'm not sure there's anything major major major that I would do differently, but to put a bit of a spin on the question, if I could have fallen differently on 30th July when I fell in the park whilst trying to show some young friends what fun geocaching could be then I would. I would have fallen so that I just fell and got muddy rather than fallen and torn my ACL and MCL (in layman's terms, I badly hurt my knee), with which I'm still having problems and for which I'm still having physio.
20. Is there anywhere you'd like to visit next year?
I'd like to go back to Cambridge and not end up in hospital. I'd like to see my brother C and his family again while I'm down there, catch up with some other friends who live in that direction, and also meet up with my older godson who's now at university in Cambridge.
21. Name one thing that you did this year that you'd like to do again?
I'd love to have my nephews for the day again. I'd love to take them out somewhere else, perhaps for the full day, doing other fun things, and have another day on my own with those gorgeous boys. I love being an aunty.
22. Who gave you the best advice this year?
Oh gosh, I don't know. It was probably my psychologist who is great at giving advice. Maybe it will turn out to have been the kind of reading programme I'm meant to be doing and before long I'll be back to being able to read.
23. What new skill would you like to acquire next year?
I think I want to learn to knit. I love crochet, but you can do different things with knitting and I'd like to be able to do those different things. I've bought a book from which I'm hoping to learn, and it's in the same series as the book from which I learnt to crochet, so I'm hoping it will work for me. I have lots and lots of yarn, so the only thing stopping me from starting to learn now is the fact that I don't yet own any knitting needles. Quite a stumbling block, come to think of it. I'll have to do something about that in the next little while.
24. What was your favourite TV/radio programme this year?
Okay, this is where I have to confess to my guilty secret of the latter part of the year ... Hawaii Five-0. It's much more violent than most things I watch, but it is also complete escapism, in part because they always catch the bad guy in the end. Most of the time it takes itself a bit too seriously, but there are times when that slips and you see it almost mocking itself. I've been watching all the episodes from all the modern series and loving them! Also, the theme music is fabulous!
25. What would you like to make more time for next year?
Probably writing. And reading. I need to be able to write. I desperately want to be able to write, and not just my blog, but the other things that I wish I'd been able to write last year.
I think I also need to make more time for time with friends. I have seen friends this last year, definitely, but there have been great swathes of time when I haven't seen many friends, mainly because I've felt so poorly so much of the time and haven't had the energy to go out and meet up with folk. And leading on from that, or perhaps incorporating it, I need to make more time for church. Again, I haven't got there much over the past year because I've felt so ill so much of the time, so I'm hoping to be able to get back to church, and because many of my friends also go to church I will see them more too.
26. What has been the biggest disappointment this year?
Hmmm...this is a tricky one to answer. I know what the answer is, but I'm not sure it's something I want to put into the public domain. Let me see ... I guess it's the way a particular relationship turned out.
27. What was the best or most enjoyable concert you went to this year?
I went to two concerts of particular note. The first was The Proclaimers, which was excellent, but it's the second that gets my vote for the best and that was Bellowhead. They are the most excellent band who I have always loved seeing live. They fill the place, whatever the place, with joy, and I have always come out of their gigs feeling, 'This is what living is about!' Extremely sadly they are disbanding after something like thirteen years together, so the gig I went to at the end of November will be the last of their gigs that I ever go to, but it was absolutely fantabulously brilliant with dancing not just in the seats, not just in the aisles, but dancing around the aisles - folk doing the conga around the auditorium. Such a brilliant atmosphere, and all the guys and gals on stage obviously loving it too. As my seat (or rather, wheelchair space) was on the far side of the auditorium from the exit I had to wait until most folk had left before I could cross the auditorium to go. However, while I waited for people to leave I noticed that a couple of the band members had come back onto the stage to clear away their things, so I took the opportunity to trundle over and ask if they'd sign the CD I'd bought in the interval. They were lovely, friendly, chatty, full of the joy of the gig, and had no qualms at all about signing my CD :D
28. What do you think was the best thing you did for yourself during the last year?
To be a cryptic, I allowed myself to be honest with myself about something that has been surprisingly liberating.
Something completely different and about which I have no need to be cryptic, getting Katinka was definitely a brilliant thing to do for myself. I know some folk have reservations about me having a cat because of my lungs, but sod it, I'm ill without a cat so I may as well be ill with a cat. And most importantly, Katinka has brought back my smile and she gives me so much joy. I was completely miserable after Dad died and Isobel went missing, and ever so lonely. Katinka has renewed a life in me that was fizzling out and I love her to bits.
29. What is the biggest difference in yourself from this time last year?
Hmm, I'm not sure that I am terribly different in any very significant way ... unless I refer to my cryptic answer to number 28, and that's not actually a difference...
30. What are you most looking forward to about next year?
Having fairly recently been started on insulin for my steroid induced diabetes, I am looking forward to feeling significantly better than I have for quite some time. After a steady and steep progression in my diabetes, and several times ending up needing to go to A&E with very high blood glucose levels, my GP referred me to the diabetes centre at one of the city's hospitals. It took several weeks for the referral to come through and for the appointment date to arrive, but once I got to see the consultant I was very impressed, and have continued to be extremely impressed with the service the diabetes nurses provide. They are gradually titrating up my insulin dose (currently on 18 units of biphasic insulin) and I am in very regular contact with the diabetes nurses while they do this. I will be seeing the consultant again in three months, by which time I'm hoping to be feeling a huge improvement. I'm already feeling a lot better than I was, and it's only as I begin to feel this improvement that I realise quite how utterly dreadful I had been feeling the entire time before, so roll on the rest of the improvement! I can't wait!