Catching up

It's far too long since I last posted. Sorry about that. I managed to get myself better enough to come home from hospital about ten days ago, and since then I've been trying to catch up with myself. I'm so far behind with my OU work that it's been causing me a bit of panic (although my tutor has been very good and doesn't seem to have been panicking at all), so almost as soon as I got my freedom back I launched myself into my studies, and within three days I'd written and submitted an essay that had been due in six or seven weeks previously. I'm still trying to catch up, and I'm still an essay behind ... almost two essays behind as another is due in quite soon and there's no way I'll get caught up by then. At least I'm making some progress though and I have a germ of an idea for some of what I might write for my next (late) assignment.

The main thing getting in the way of my studies is exhaustion. I am knacked. Today I have been able to do very little other than sleep or sofa surf. Part of it is the post-hospital tiredness, but I think that some of it is also the POTS ... and I just don't feel well with it. My balance is completely shot to pieces, I've been getting a lot of palpitations, I'm very dizzy, and my hr has been fast (around 130-140 when standing). To be honest, it's getting to me. I'm sick of feeling ill and exhausted, and I'd really like some quality of life back. Okay, so things could be worse, I know that ... it's just ... hmmm ... I'm fed up ... Life's enough of a challenge with brittle asthma, never mind with POTS on top of it. I won't let it get me depressed. I can't let it get me depressed. It's not worth it, and I know that I have to make the most of life, but the impact that POTS is having on my life is significant at the moment, and while it's all relatively new to me I don't know what to expect from it, and that's difficult. Is this how things are going to be from now on? Will it wax and wane? Is it something I'm just going to have to learn to live with? Is there anything more that can be done to try to help me feel better? I have a long list of questions for my consultant next time I see her (12th February), but I'm also slightly nervous about asking the 'is there any hope of improvement?' question in case the answer is no. I will ask it though, because I need to know the answer. I need to know the prognosis and the prospects. At the moment it's tough, though. It's catching up with.

W has been poorly too. She developed a chest infection last week so I did some shopping for her and took it round on Friday, except that when I got there she was so breathless after coming downstairs to answer the door that she could hardly speak, so I ended up taking her to A&E. W can be as stubborn as me, and she took a fair bit of persuading to go to hospital, but I really wasn't happy to leave her at home, so it was a relief when she conceded defeat and let me take her up to the hospital. She was seen almost immediately and not surprisingly (not to me, although I think it was to W) she was admitted, and stayed in hospital until Monday evening. To be honest I think she could've done with another day or so in hospital, but her consultant (who I knew very well as an SpR) was relatively okay with her being discharged so long as she went to see him in Out Patients the following day. So after taking her home on Monday evening I then went with her to her OPD appointment yesterday morning. She's okay. She's tired, but enjoying being back in her own home, with her guinea pigs, and not being disturbed every five minutes to have her obs done, or with another patient calling for something, so although in someways she'd be better off in hospital, in others she's better at home. Getting that balance is always difficult.

I have to say that it was rather strange being on the other side of things in A&E. I'm so used to being the patient, but very unused to being the person with the patient. I can't say that it was any better than being the patient, except that I wasn't the one being stabbed with needles or gasping for breath. I was, however, glad to be able to be there for W, especially after the numerous occasions when she's been there for me.

Life hasn't consisted of very much else since I last wrote - hospitals and study has been pretty much it, so not terribly exciting. However, W and I have been planning our trip to Italy in April/May and we now have flights booked and a trullo to stay in at Alberobello. What we need now are return trains between Rome and Bari/Alberobello, a place to stay in Rome for a few days, and the incredibly costly health insurance. Oh, and I need to get all my medical letters etc translated somehow ... I might see if the lovely man who owns/runs Peppy's (the wonderful Italian restaurant down the road from me) can translate them for me, seeing as he's Italian, though I'm not sure about some of the medical terminology. I guess I can only ask and see what he says. So anyway, that's something for both W and I to look forward to, and I'm sure it'll creep up on us fast enough, like our Somerset holiday did. And who knows, maybe the Southern European spring sunshine will do me good and revitalise me a little. Let's hope so.

False start

I haven't disappeared off the face of the earth, rather I've had a false start to the year and come to you from Ward 29 at Freeman Hospital at the moment. I came from my festive jaunts with a cold from my nephews, which headed south to my lungs so that by the time I saw my consultant on the morning of New Year's Eve I needed antibiotics. We hoped that these would nip the infection in the bud, but I promised that I if I needed to go into hospital then I wouldn't hold on until after the weekend (Monday 4th), so when it came to Saturday and I was struggling to keep going I conceded and phoned the ward. My consultant had told the Charge Nurse on Thursday that I may need to come in over the weekend, and we'd hoped that if that that were the case then there'd be a bed for me, but unfortunately there wasn't and I had to go to A&E. I probably ought to have a called an ambulance, but W was with me so she took me up in her car, and to be honest I wasn't as ill at that time as I later became. It's a good thing that W was with me though, because although the triage nurse at A&E was swift and got me seen straight away, the rest of the staff were far from good, it taking 20 minutes of insistence from W before they gave me supplemental oxygen! To be fair, the young medic who saw me was okay, and he seemed to listen to what W was saying and took note of my letter of protocol from my consultant, but unfortunately there were mostly prats above him. There's one particular consultant at A&E who I don't get along with ... hmm ... well, it's more than that ... he's severely under-treated me in the past and on at least one occasion this directly lead to me needing to be ventilated once I got to Ward 29. Needless to say, I don't trust him. There's a look that passes between us when we see each other - mine saying, 'Don't come near me; I don't trust you and I don't want you failing me again,' and his saying, 'You got me into trouble before, I'm not coming near you if I can help it. ' (After the aforementioned under-treatment this doc was severely reprimanded by my consultant and by Ward 29's Charge Nurse). Unfortunately this doctor was the consultant heading the department when I went to A&E on 2nd, and seeing as I was getting more ill as time went by he couldn't stay clear of me entirely, and he so very nearly did it again - under-treat me. Granted they were all having enormous difficulties in cannulating me as my veins are buggered from the number of needles they've had stabbed into them over the years, but at the end of the day, there is always a way to get access if necessary, even if that means a central line. I needed access so that I could be given the aminophylline infusion, which is the only thing that ultimately helps when I get to the stage I was at, but when the docs couldn't immediately get access I heard the untrustworthy consultant say (from behind a curtain while he was dealing with the dislocated shoulder of a colleague's girlfriend) not to bother with the aminophylline then! W hadn't heard this - I think she may have gone out of the room briefly - but she knew something was wrong as soon as she saw my face, and in a panicked and already breathless state I managed to tell her what I'd heard. She fought my corner for me, the registrar came back, and 23 attempts later I had a cannula in my foot with the aminophylline running through. Thank God! Had it been left to Dr Undertreatment I think I'd have ended up on a vent again in the end.



I was transferred to RVI. Horrendous. I don't even want to write much about it, it was so awful ... all I will say for now is that I was there from the Saturday evening until late on Monday afternoon, and in the early hours of Monday morning when I was considerably worse than when I'd gone to A&E, I had to text W to ask her to phone Ward 29, to ask them to phone the ward I was on at RVI and tell them what treatment to give me. They did it - Ward 29 rescued me from the scariness that was around me (I don't want to use the word 'incompetence' but that's the word that keeps coming to mind) - but it didn't make me any friends. Actually it made the staff on that ward at RVI angry - the fact that I'd questioned their ability and was 'dissatisfied' with their care - which is perhaps understandable, but I was terrified for my life in their hands at this point and they weren't listening to what I was saying I needed, so I felt I had no option but to turn for help from those who know me and my disease intimately. Ultimately I was still at the mercy of the staff around me, and they were reluctant to concede all, but they did give me some of the extra treatment I needed so that by the time I was transferred here to Ward 29 I wasn't so desperately poorly. In fact, once I got to Ward 29 I was swiftly given all the treatment I needed, things settled much more quickly (probably helped also by my knowing I was safe now that I was with them), and before too long I was able to fall into that long, exhausting and exhausted big sleep. I slept until Thursday evening. I'm still tired and I'm still doing lots of sleeping, but I feel much more human than I did, and I am now able to stay awake most of the time that I want to. Hey, I'm using the laptop so I must be on the mend! :oD I'm still on the aminophylline infusion, and I'm still on 28% oxygen, and I'm still on the antibiotics, but I'm mending and will hopefully have the aminophylline down in the next day or two. The dose has been reduced, which is a step in the right direction, but the last couple of mornings haven't been good and this morning I was particularly tight (it was a bit of a rude awakening actually) so it seems that it may be a bit of a tricky judgement call for risking taking the infusion down all together.



So while everyone else has been snowed up, I've been holed up, and when I've been awake enough to notice I've felt a little left out with the whole 'snow bringing the country to a halt' thing. When my consultant came on grand rounds on Friday though he said that he's in no hurry to get me out of here and into the cold :o( It's not that I want to be out in the cold; it's that I want to be home, and I'd like my doc to want me to be home too :o( I reckon it'll be at least the middle of the week though :o( Ho hum, patience is needed - patience from the impatient in-patient.