Wednesday, September 30, 2009

Don't be concerned...

If this song were a car it would be a convertible 1957 Thunderbird driving the ocean drive along the West Coast of America from Los Angeles to San Francisco. Ah, the optimism of the sixties. I love it!

Monday, September 28, 2009

Four Sleeps 'Til Boston...

Only four sleeps till me and the misses go for a long weekend in Boston for our tenth anniversary! Boston in the fall. I'm torn; I'm excited, but it's the first time we've been away from the kids for longer than a night, so we'll miss them big time. It'll be strange being husband and wife rather that mum and dad for a few days. What the hell will we talk about? ;-)

We've been "mum" and "dad" for so long I've forgotten what we used to talk about before the rugrats arrived. Mealtimes will be strange as well without having to figure out what Abby will eat on the menu and quickly then wolf down our food before Oscar gets bored and attempts to swallow dive off the top of his high chair...:-)

Thursday, September 17, 2009

Demolition Man

Oscar is at that age (14 months) where he can trash a room in 1 minute if he's left alone. In the kitchen he pulls out all the pots and pans, all the cereal boxes (including once, when he covered himself in Ready Brek) and all the washing up powder. In Abby's room he pulls out all her clothes and all her toys. All good fun ;-)

Thursday, September 10, 2009

Outpatients and the sun

Hospital appointment yesterday; and for the first time in many weeks the sun came out! On my first spirometry I blew so hard that everything went black for a second and I got a massive headache ;-). On the second blow I hit FEV1 2.82 FVC 3.8. Hum. Blows were again a bit disappointing but I'm not producing much, I just feel slightly wheezy. It's now been a while since I broke the magic 3.0 level. To be fair Doctor J.H. noticed it was down for me and actually looked up the percentage (a first as they don't normally do that in Manchester CFU, except for the annual) and I had it confirmed as 78% -my score for last years annual was 83% so some way down really. In mitigation I have just come off the back of a cold, but my chest does seem to have cleared so I don't know why really. I asked the Doc about whether my pseudomonas had any resistance to Colymycin, but my last lab tests had all came back with no resistance (to Colymycin or Tobramycin) She did mention Tobi nebs and how they could be more effective (standard practise is to do one month of Tobi, one month of Colymycin; the downside is that there is a slight risk of hearing loss and there is more of a chance of pseudomonas developing resistance to Tobi than to Colymycin; although she said it was quite rare and she could "count on one hand" the number of patients whose bugs had developed resistance to Tobi. Anyway, I'm down for a Tobi trial with the physio when I go back in a months time, probably using the INeb with the new tidal flow (she said it can take 30 minutes to dispense if you use the old way! Nooooo!). I've also been put on two weeks of oral Septrin (Co-Trixomazole) and Rifampicin to see if it can clear anything left on my chest from the cold. I was warned that Septrin can cause a skin rash, but so far so good. (Last night I had a dream that I developed a rash all over my arms, but when I woke up there was nothing there. I hate having "obvious" dreams ;-))

I also asked what my two CF gene's were (they couldn't find it in my notes; they'll get it for next time) and what my CRP level was, apparently the last one was 5, and it was 6 when I had my last set of IVs in summer, although it can get as high as 40 when I have a really bad cold and chest infection. Otherwise I'm going to make an effort to get out and get some exercise on the unused mountain bike that's been in my shed/garage for the last ten years; this summer some of my mates have turned into mountain bike bores; seriously, the last time we went out for a drink it was *all* they talked about, I was not impressed! But I guess if you can't beat em you may as well join them, I'm not going to talk about bike magazines in the pub though ;-)

Wednesday, September 9, 2009


I've been meaning to post something like this for a while...Kudos to Jo for reminding me.

I was diagnosed when I was 9 thanks mainly to the persistence of my mum and to the doctor who finally decided not to fob us off and referred me for an x-ray. From the x-ray they thought I had TB so they put me in an isolation ward for a month, when the TB test came back negative they did the allergy scratch test. Finally they did the sweat test, and on the second sweat test I was diagnosed. Looking back all the signs were there; every winter I would pick up a cold and it would stay on my chest for weeks or months, I would produce sputum by the bucketload. From the age of 7 I started to lose weight noticeably. When I was a toddler my mum frequently complained to the docs about my farts smelling wrong and I used to get the runs from time to time, presumably because of the amount of undigested fat in my system.

This was back in the 70s, and in those days no one had heard of CF, The yellow pancease tablets (Pancreatin? I honestly can't remember the product name) were rubbish, and the wisdom then was to go on a low fat diet (skimmed milk and no chocolate, is it any wonder I rebelled? ;-) I was also put on regular Flucloxacillin, which I more or less take to this day.

I think back in those days I had mainly Staphloccocus on my lungs. It wasn't until about 12-13 that I remember the word Pseudomonas being used regularly by the docs. I generally went into hospital for IVs about 3-4 times a year. The doctor would first give me oral antibiotics but when they invariably didn't work I was put on IVs through a cannula (the cause of many a trauma, although thankfully they always did the job in clearing my lungs) As a kid I can remember thinking/feeling that my health was sliding, but halfway through secondary school my health seemed to stabilise, I think this was down to a combination of Creon becoming available -which helped my weight gain, coupled with teenage testosterone kicking in which helped me with exercise (I should probably give the hospital credit here for the IV courses as well, although they weren't appreciated at the time as you can probably imagine). I seemed to get better at sports, took part in the 10K a couple of years running. When I was 16 the doctor let my mum do IVs at home. I have always done IVs at home since then. When I was 18 I was referred to the fledgling Manchester CF Unit, then in Monsall Hospital.

When I was 25 I got hospitalised a couple of times with major DIOS gastric blockages. The second time was quite scary as I was in for a month and it didn't seem to clear and surgery was mentioned. Thankfully it eventually cleared. The DIOS was caused partly because my pancreatic function was declining and had finally reached the point where Creon 10 was no longer working properly, I switched to Creon 25 and things gradually got better. I also started taking salt tablets, especially in the hot weather. Over the years I've become quite good at spotting the early signs (stomach pains) of DIOS and hit it with the Kleanprep early doors.

And that's it really. I'm now 37. I still have IVs about 3 times a year. I got married when I was 27 to a wonderful woman. We tried IVF for 5 years but it wasn't to be, so we decided to go through the donor insemination route and now have two beautiful kids, 1 and 4. Luckily my LF has stayed pretty stable throughout (it's about 80% atm). DNase made a big difference to me day to day in reducing the sheer volume of mucus produced, I also do Colymycin twice daily. I have no idea how I would do nebs without the Ineb, as it allows me to run after toddlers while inhaling. I think my health has been more stable when I have more weight on; I look back at some of the photos when I was a student and I look scarily thin, I feel like going up to my skinny-ass younger self and saying "eat some pork pies."

Monday, September 7, 2009

Cork and Kerry Mountains

My mum and my sister have travelled the length and breadth of Ireland to build a picture of our family tree (On my mum's side, both grandparents were from Ireland). Apparently they've found quite a few relatives, I can't wait to hear the tales. Anyway, this gives me an excuse to post this song, which I love, I don't know why :-)