Wednesday, 26 March 2014


Just when I thought things couldn't possibly get any worse fate/God/whoever decided to prove me wrong.

Before I start this is not another pity party post, well maybe a little, but a lesson in how quickly things can change when you have PH.

As you know I didn't go into work on Monday as I was so tired I could hardly stand. Now I'd put this down to being distressed and catching Peter's cold. The real reason made itself clear later that day.

I didn't feel like lunch but took a few mouthfuls and then moved everything around my plate for twenty minutes before giving up completely. Peter went out and got me some chocolate which I sucked on intermittently throughout the afternoon. Tea time and again I didn't want anything but this time put it down to having the chocolate. Peter reasoned that my lack of appetite was probably down to being so tired. So it was decided I'd stay up to watch Eastenders and then go to bed early with a warm milky drink.

Then it started.

The first sign of trouble was what I took to be chronic indigestion then overwhelming nausea. I made it to the bathroom in seconds, Peter says he hadn't seen me move that fast in years, and there I stayed until the early hours when I fell into bed exhausted. Tuesday morning I woke and tentatively sipped on the tea Peter had left for me. Big, big mistake! And another few hours in the bathroom ensued.

By now I knew I was in serious trouble. My Flolan was OK Peter changed that for me. But all my oral meds had fallen by the wayside. Once out of the bathroom I became more or less unconscious for the rest of the day only emerging around eight last night with raging thirst. I downed a glass of water probably quicker than was wise but amazingly it stayed down. An hour later another glass of water followed by a weak tea, no milk. Then back to bed and a long deep sleep.

This morning I nibbled on a piece of dried toast and have, so far, downed three cups of tea with milk and a good helping of sugar. I'm still feeling a little queasy after each one but they are staying down.

One thing I have to comment on was the devotions shown by Smirnoff. He was greatly perplexed by the fact I didn't get out of bed but when I did I spent a long time behind a locked door making odd noises. He nuzzled me, meowed at me, tried to dig me out from under the duvet and finally snuggled up tight along my back and purred loudly. In the past when I've been this ill it was Tarmac who provided the comfort. Now it seems Smirnoff is out to prove he is more than up for the task.

Both Papworth and the Brompton were called. Amazingly Papworth have kept me on the list stating that they cannot risk not trying to do the op if organs became available. The plan would be to test for any bacteria and if the surgeon was happy to go ahead anyway. Only if the infection levels were dangerously high would they abort. Brompton was more worried about the lack of medication and are arranging for me to go in to see them on Friday (when I will be less of an infection risk to other patients) to see what damage I've done. Hopefully the temporary stoppage will not cause any real problems but they need to check things like my potassium and magnesium levels as they are very important to PH sufferers. Papworth wanted to know how much weight I'd lost and the answer was an astonishing half a stone. I'm back down to seven stone eight pounds again but at least it's not at bad as the seven stone I started from. However it does mean I'm going to have to do some serious stuffing when my appetite returns. Papworth are seeing me in a couple of weeks and are expecting serious improvement in the weight situation.

Apart from my sore stomach I've had a few palpitations and my ankles are the size of baseballs and of course my breathing is terrible. When you take those handful of tablets every morning and every night you don't realise what effect they really have. I tend to think of them as nuisance value only and see the Flolan as the one I must not mess with. However the delicate balance has been disturbed and although it only took a few hours to become unbalanced it is going to take days, if not weeks, to restore the equilibrium again.

Any 'normal' person would brush off a tummy bug in a couple of days. You forget how delicate our situation is until something comes alone and reminds you. The problem is where the hell did it come from? Peter has been fine and at home we have eaten the same things. The only things we can put our fingers on is one of the apples out of the fruit bowl. I do wash my apples but maybe I missed something. Or a yogurt I had mid afternoon. It wasn't out of date and tasted and smelt fine but you can never tell. It might not be either of these of course, I might just as easily picked something up whilst out on Saturday. Who knows.

At the moment I've gone from only having one working pump to having four. Out of the blue two more were delivered Monday morning. I have a suspicion they were not meant for me but the delivery note did have my name on it. I have tried getting through to the company, well Peter has, I've been too unwell, but have given up. Maybe one day they will realise I have something I shouldn't. Until then I'm keeping quiet. After my last experience I think having a few back ups would be very wise.

So this afternoon I'm trying another slice of toast and if that stays down I'l take my evening meds as normal and hopefully things will start to improve. I have a feeling I'm going to be hitting the Complan over the next few days and then indulge in a few fry ups to get the weight back up. Right now though all I want is another little sleep and another cup of sweet tea. Some girls have all the luck. Sigh!