Thursday, 7 January 2010

Drinking paint

Had the barium swallow yesterday and it wasn't all that bad - certainly not as awful as some people had said who'd had one. It is a mildly fruit flavoured white paint, served in a plastic cup. It seemed to come out of a drinks can as there was an empty one on the side. I had the procedure in the same room as the bronchoscopys, so now understand why the posh swively Xray machine is in there. I started standing on a little platform with a vertical plate /bed behind my back, holding the cup of liquid in my right hand as the radiographer manoevered the Xray in front of my throat. The Xray machine appears in front of you as a round plate, about the size of a car wheel, but with a flat gray plate on the front. It sits about 4 inches from your front. I was then asked to take a mouthful of the liquid and hold it in my mouth and then, on the radiographer's command, to swallow. The Xray then moved down my front taking a series of pictures, following the white liquid as it descended to my gullet and stomach. After a few mouthfuls with pictures at different angles they motorized the bed/platform to a horizontal position and I lay on my front and did another swallow, then lay on my back to see if any reflux occured.

The result of all this was that there was no reflux. There was also no hernia (where a little bit of stomach pokes up through the diaphragm. So both of those are good pieces of news. There was, however, a little bit of 'hold-up' where there was an accumulation of liquid in the gullet, just above the sphincter into the stomach - I was shown this on one of the shots on the monitor - and the radiographer explained that this could explain the symptoms I've had, and certainly is consistent with the feeling I had earlier in the recovery period where I couldn't eat fast at all as it felt like everything was backing up and wouldn't go down. It will be interesting to get Jas' reading of the results, but as far as I could see there was nothing structurally wrong so maybe I won't need the op. We'll see. It may just be a case of learning to eat a bit more slowly and keeping on taking the omeprazole anti-acid pill.

On another matter, I'm getting a little frustrated with the lung function testing. They give everyone a portable spirometer that you blow into to measure your FVC and FEV1 every day, as a 10% drop in FEV1 is a goood indicator of things going wrong. Problem is that using the thing is massively technique based. I get wildly variable results, and the other day randomly managed to get an FEV1 of 2.9L and simply cannot repeat it, however many times I try. The best I could get today was 2.44. Where has that half litre of air gone? The technique seems to require a weird combination of being relaxed and blowing out hard and I can't quite get it. I know the good results are out there/in my lungs somewhere... I guess eventually I'll learn. Of course, I made the mistake of giving Vicky a go and without any practice she blew my results out of the water straight away, first try. Let's just say she wasn't getting a second try... Something to do with a youth spent doing lots of swimming training.

So life carries on, but there are still some difficulties. I still sleep badly - I get little chunks, no decent stretches it seems. I regularly wake up three or four times a night and have very weird, vivid and often disturbing dreams. Last night I dreamt I was driving and had awful pain in my shoulders so had to pull over, and woke with terrible pain in my shoulders and rib cage, surprise surprise. I have got this a few times, generally related to bad posture in bed, driving or slouching on a sofa and it is a quite extraordinary pain. It is as if my whole back and rib cage go into spasm all at once. The first time it happened I almost called 999, but now recognise it is muscular and not the lungs falling over. It is pretty much the only pain I've experienced that is bad enough to make me involuntarily sick. If I walk around and do stretches it does go away, but is unpleasant. I seem also to get more little pains in random places like joints of my big toe, or my calves - enough to wake me sometimes. Of course this could just be because I am doing more exercise than ever before.

I also had a horrible dream last night that I was coughing up CF-style sputum again - the big sticky green globs that used to be a daily familiarity to me. In the dream there was obviously something terribly wrong and I needed to call the doctors - the lungs were failing already.

As the concerns of the transplant and recovery recede and stability and normality return other things start to crowd into the spare worry space and the major one currently is how best to deal with my mother's needs as Alzheimer's begins to have a really debilitating effect on her. She lives in an isolated location and is getting to the point where she needs increasing care. Of course many people have to deal with these choices and difficult decisions, but we didn't expect to have to do it so soon - mum is only 67 and is already fairly bad. It is so very hard to know if you are doing the right thing when it is almost impossible to work out what she really wants - is it most important to stay in her own home and have care brought in, remaining in an isolated place and not seeing her kids that much, or should we encourage her to move into a home nearer to either me or my sister? How do we finance the care? Sell her house, equity release? And so on and so on. Once you start looking into these issues you realise it requires a great deal of research and effort and I have the conflict between caring for myself in the period I am off work and using the time to make some headway into dealing with these issues. My sister is always very busy with 3 kids under 6 and working 2 days a week, and she puts in a great deal of time and effort into helping mum already. I need to start to help out more.

Ah well, sorry to grumble. It is approaching 4pm Neoral time, so I'll stop now, take some pills and then walk through the ice and snow into Cambridge to spend an HMV token I got for Christmas (on some silly game for the Wii I expect) and then meet Vicky after work for some dinner.


  1. Glad to hear you are mostly on the up. Very sorry to hear about your mum though. I'm sure she would want you to take care of yourself first and foremost though. If you dont get a little selfish and get yourself up to snuff, then you would be no good to anyone. Don't bite off too much too quick mate.

  2. I'm sure the weird dreams are merely down to the drugs, the pain and perfectly normal anxiety, given all you have been through plus the additional worry of your mum. Bizarrely Vicky was in my dream last night! We went into some posh shop and she was pocketing all the Clinique freebies! In the dream I was thinking how strange it was, I didn't think Vicky was into make up that much. Hmmm...
    Good to hear that overall you are doing well; I agree that you need to make sure you are as healthy as can be because you are no help to your mum or sister otherwise.
    Started planning that Snowdon trip yet?

  3. Sorry to hear about your Mum. That's really tough. Some people have such awful things thrust upon them, and you really don't deserve it. I wish I could wave a wand and make all your troubles disappear. Thank heavens for Vicky.
    On a lighter note, what the hell's going on with the weather!

  4. Hey Will,

    Happy New Year. Sounds like things are progressing. Just caught up on your latest happenings. I stopped paying attention to my pfts. I obviously have some different issues, but mine dropped to almost pre-transplant levels a few weeks back. Docs feel though that if they get my stenosis under control it will bounce back and it already has to an extent. Sorry to hear about the added stress of your Mom, that must be tough. Hang in there. Keep finding something to enjoy about everyday, which I'm sure you do. take it easy,

  5. Hey cousin
    I agree with your friend (above) that Jool would want you to take care of yourself first, as do we!!
    I have had a chat about your mum with a friend of mine who is an Alz' specialist. (I have been v worried about her since i saw her in November). It is hard for him to judge, obviously, as he has not seen her, BUT he did say that for so long as practicable, it is best for her to be at home and in familiar surroundings. I guess we need to make sure she has the support she needs to live as independent a life as possible. Apparently, when people try to move people too soon it can make them deteriorate quite quickly because of the stress of a move/having to reorientate etc.

    On the support front, you do know i am happy to help dont you? Its not too difficult for me to get up to see her from London and means I can do a 'round robin' and see my grandma too! I will get in touch with Ellie soon as i am planning a trip up to Naaaaarfuck in February. Please (both of you) DO ask if you need me to help with anything... we're 'faaaaamily' (in a Phil Mitchell accent!) innit???

    In the meantime, take care and ask your doctor if its ok for you to take valerian (tablets or tea) for the sleeping/dreams thing... it works wonders!

    Alice x

  6. "Naaaaarfuck" - brilliant! :o)