Thursday, 16 February 2012

Ruling Things Out

Having established that the Flolan hadn't stopped working calm was restored and I was transfered to a normal ward. Unfortunately for me it is a ward full of nosy, loud women so I've been reduced to wearing my headphones even when I'm not listening to anything just to have some peace. It is not the ward I'm usually on and the nurses clearly don't understand PH patients. They seem totally gob smacked that I administer all my drugs, including the flolan, myself. I have a feeling I'll be having an audience when I do my prep this evening.

All the tests so far have come back clear including the x ray so infection and Flolan not working have both been ruled out, so it is on to the CT scan to check for clots. If that also comes back clear then there is only one obvious answer, I've developed sensitivity to the flolan. This happened with the Iloprost before it stopped working and I developed severe asthma symptons and a rash. I have the asthma symptoms but not the rash, yet. Naturally this is going to cause a few problems because they can't take me off it, I would die within days. And there is nothing else they can give instead. The consultant has said that if this proves the case they might actually lower my dose a bit and use other drugs to dampen the irritation. I'm not sure what this means but it sounds like I'm about to be given an armful of new drugs to take home. Who'd have thought blood clots on the lung would look like the more attractive option? There is an upside to this however, and that is my transplant will become even more urgent as they won't be able to control the irritation for ever. So I'm now waiting to hear about the CT scan, they are hoping to fit it in today, otherwise it will be first thing tomorrow. I would prefer it today as the sooner they start some sort of treatment the sooner I can get out of here.

My companions, all except one who was in hospital with me the last time I was in, are an irritating lot. I use my mobile to send texts to my family to keep them updated and I keep it on silent. This lot have phones ringing constantly and all conversations are carried out at top volume. The woman next to me actually pulled one of my headphones out to talk to me. I'm afraid I was rather rude to her but at least she is now leaving me alone.

The nurse looking after my bay is a locum, is rather disorganised and I hate to say it, needs a bath. She nearly gassed me when doing my blood pressure. She started to 'clerk' me but then went for lunch and has not been near me since and the form is only half done. I had to get out of bed and retrieve my notes which she left on someone else's bed, I had a bloody good read of them and was horrified to find that the consultant at the Leathal and Deadly in a letter to my GP initially put my shortness of breathe down to my 'bra being too tight'. I couldn't believe it, I read it twice. He also, in a later letter, described me as 'overly concerned for her own health' and a time waster. This was all a couple of months before I collapsed in class and he finally conceeded something was wrong and referred me to Harefield for further tests, I was diagnosed with PH a month later. I really wish I'd know this at the time, I would have sued the pants of him, and I can't help wondering if I'd be in the state I am now if he'd taken me seriously from the beginning.

Thankfully the Brompton is very open with their information and there was nothing in their notes that I didn't already know. I know I'm going to fume about this for a while but at the end of the day life, certainly my life, is too short to dwell on 'if's' and 'maybe's'. And it is certainly too short to waste any time on a consultant who clearly doesn't know his arse from his elbow.

The food seems to have improved a bit since I was last in, either that or I'd remembered it as worse than it actually was. One thing that has definitely changed is the breakfasts, now there is a choice of a cooked breakfast as well as a range of cereals, toast and muffins. I had scrambled egg on toast this morning as I'm still trying to bump up the weight and a veggie quiche for lunch. Last night because I was late in I didn't have a choice and a lamb curry was dumped in front of me. Let's just say if you are ever in the Brompton it is one to avoid. I had indigestion all night. I can't actually remember what I ordered for tonight, it will be a nice surprise, or not.