Monday, 4 January 2010

A New Year update

Happy New Year everyone and I'm very sorry for not writing anything over the festive period. Just so darned festive, you see. Something to do with that anyway, combined with a generous dose of laziness and far too much chocolate. One of the disadvantages of my situation is having to weigh myself every morning - let's just say that I almost had to call Papworth a couple of times as I was close to exceeding the 2kg in 2 days weight gain limit! Seems to have settled now at what must be my 'natural' weight.

So, where to start? After a few more shopping trips we packed Vicky's Clio and endured a very busy and frozen journey out to my mum's in North Norfolk. We were lucky that East Anglia was busily starting to thaw when other parts of the country were getting much worse. We arrived to a VERY cold farmhouse and made ourselves busy getting wood and lighting the wood burner to try and warm up the 'big room'. Once this room gets warm it helps raise the temperature of the whole house.

The view from the Big Room when we arrived in Norfolk

We helped mum decorate the tree and made the old place as merry as we could with good chocolate, booze and springs of holly on the beams. On Christmas Eve we went for an extremely bracing walk on the beach at a very desolate Walcott and had excellent fish and chips for lunch in the cafe. For Christmas we met up with my sister, her family and inlaws and then on Boxing Day they all came to mum's house. We went for a walk down the field and were pleased to see the trees we'd planted 20 years ago had finally provided enough cover for the brambles to be supressed and a proper little wood has appeared.

We also managed to catch on camera the moment when my elder nephew attempted to murder my younger nephew:

On Tuesday 29th we left Norfolk and made our way back to Cambridge for the night, as I was due in clinic at Papworth on Wednesday morning. We arrived early at clinic to try and beat the first come, first served system. Arriving at 8:30am got me at number 2 on the Lung List, but we rapidly realised that there were very few people there anyway - I think 4 in total - so we need not have bothered to get up early. My blood pressure came in at 160/100, which is high. Jas said that 96.4% of people on Cyclosporin (Neoral) got high blood pressure and he didn't believe the other 3.6%. He thought we should treat it to make sure my heart isn't working too hard, so I am now on 5mg of Amlodipine a day. The most common side effect is swollen ankles, so I'm waiting to see if they appear. Apparently they can treat that with another drug....wheels within wheels...

It is now more that 6 weeks since the fluid drain so I did my first official lung function test, and got an FVC (Full vital capacity) of 3.5ish and an FEV1 (volume exhaled in the first 1 second) of 2.43 litres. This puts me at about 70% predicted for my age, sex and height. Jas said this was 'good', and I have read in other places that these numbers can improve over time (someone had 50% at 3 months and 80% at 6 months), so I am staying positive. I also remember that during the assessment Jas had said it is wildly variable with some people having 120% lung function and others with 30%, but both reporting 100% oxygenation. My saturations were 99% and seem, from the odd measurement I've done at home, to be very stable in the high 90s, so that is very positive.

We discussed acid reflux which I still suffer from periodically. Jas said that in CF-ers the stomach produces lots of acid to try and compensate for the lack of digestive enzymes - attempting to break down the food more in the stomach. Also, CF folk can have weak diaphragms due to the years of shallow breathing, and this, combined with the trauma of the operation can mean a lack of support of the osoephagus at the sphincter at the top of the stomach. This weakening of the sphincter, combined with the high acid level in the stomach, leads to reflux. This in turn has been stongly shown to be bad news for the transplanted lungs as you are constantly burping up acid air and then breathing it back down into the lungs. Nasty. There are two ways to combat this. The first is omeprazole which inhibits the production of stomach acid (which I am already taking) and the second is to do an operation to give more support to the osoephagus and shpincter by wrapping a bit of stomach around it, or something - frankly I didn't quite get all the details... The operation is done by keyhole surgery, would involve a 3-day stay in Addenbrookes hospital in Cambridge, and would require a 'mushy diet' for 4-6 weeks afterwards. I know which bit would piss me off the most already. To decide whether the operation is necessary they will first do a Barium Swallow, where you drink a fluid that reflects X-rays and so shows up where stuff goes when you drink/eat - this checks for any physical abnormalities. The second test is a 24h monitoring of stomach ph, which involves having a tube up your nose and down into the stomach, and carrying around a little data recorder on your belt.

The Barium swallow is scheduled for Wednesday this week. Apparently it is pretty grim - doesn't taste of much but is very much like swallowing emulsion paint. Great. The ph monitoring isn't yet scheduled, but I guess will be in the next few weeks.

The final bit of info Jas had was that in my last bronch the samples of sputum they took grew pseudomonas aeruginosa, my old CF lungs bacterium of choice. Not a lot, but it is there. This is extremely common as I'm sure I've already mentioned because it lives not only in the CF lungs but also in the upper airway and sinuses which, of course, were not transplanted. The new lungs should be much better at dealing with it, and so far I'm not feeling anything other than a tiny bit of sputum from time to time. I'm still doing the nebulised antibiotics, which will help to keep it at bay, but I'm not sure if this means I'll continue to need to do them ad infinitum.

Jas wants to do another bronchoscopy and biopsy on Wednesday next week, a week after the Barium Swallow. That will be nominally the 3-month post-op point (in reality 2 days early) and so is a big milestone. If there is still no rejection they will start to very gradually reduce the steroid dose.

A mixed bag of a clinic then, but largely positive, and we left feeling pretty happy and got in the car to drive directly to Vicky's mum's house in Oxfordshire. After a fairly dire session on the M25 we arrived to another set of Christmas present giving and receiving and had a very relaxing time. I was sneezing quite a lot by this point - it seemed to be a combination of a slight cold I must have picked up from one of those snotty nephews and a fairly severe allergy to Vicky's mum's 2 dogs and her sister's cat. It seems that immunosuppressants don't interfere with histamine reactions - must be a different bit of the immune system entirely. I ended up on the first night in a bit of a sneezy, blocked up, snotty mess and then woke up at 1:30am with itchy legs and a rash. I ended up calling Papworth and asking them if it was ok for me to take antihisthamines - I have to check every drug carefully just in case. They said yes and so I managed the next few days with plenty of pills and staying away from the dogs as much as possible. New Years Eve was very quiet - for some reason I was utterly shattered so ended up in bed at 10pm, so nothing to report there.

On New Years Day we went to see Vicky's Dad, had dinner, a most fabulous firework display and yet more presents (endless Christmas was the theme this year). On the way we had stopped off for a sunset walk up a small hill - Wittenham Clumps - and so I will leave you with this particularly flattering shot of two sisters. My darling wife on the right and her younger sister Chloe. If you got this far, congratulations and Happy New Year again!

That's too mean isn't it? How about this one instead. Much better:


  1. You write vey beautifully. I loved reading about your mom's place and the tree's~ ALl of that was great!

    You are only 3 months post? You're PFT's will increase significantly! I was only at about 70% FEV1 (or less) at 3 months. After about 9 months- a year I topped off around 88%-95% somewhere in there. My sats are always 99%-100%. So good job!

    I still culture B.Cepacia once in a while as well. My new lungs seem to deal with it pretty good. I also take blood pressure pills every day. Oh, and I had a barium swallow test a few months ago. . . . hopefully never have to do that again :) Good Luck!

    Nice post!

  2. Sounding good - did you manage the Hippadroom ? We had to come back down that day so never got the chance to see you all. Another time soon hopefully ?

    Have fun

  3. Great writing mate, I have just started this transplant process and reading everyones blogs is giving me quite an education.

    I had a global lead position here in the states before I retired to focus on health. Through my job I had the opportunity to come accross the pond to the UK many times. Mostly spent time in Hersham and Acreair for work. I love it there.

    Good luck and keep improving, oh and the updates!