Monday, July 14, 2008

Thank you as always for your wonderful comments and emails which always a) help me with my perspective and b) are just so lovely to read.

I went to Harefield on Thursday to see what was going on. All in all the appointment went well. Oxygen saturations were 100% (as the nurse said, can't get much better than that!) Lung function fantastic (tiny drop but not big enough to be of any relevance) Blood pressure etc all normal, X-ray was described as "pristine" (woohoo!)

Of course I can't leave a hospital without something being a slight cause for concern and it appears the latest organs to need an ASBO are my kidneys. They have been messing around intermittently and so the docs looked at the general trend over the year, which is essentially showing a slow decrease in function.

This sounded rather alarming to me but my consultant was fab, explaining carefully that it isn't any reason to panic at the moment, but does require further investigation to try and ascertain just what is causing their decline. The number one suspect is Cyclosporin, one of my immunosuppressants. In fact they are 99.9% sure this is the culprit, but as Dr C said, the one time you assume that's the reason is the time that actually it's a more concealed cause.

So I have all sorts of fun tests booked for August (a day out for me and my kidneys if you will) to triple check everything else and check that the big bad bully is indeed my Cyclosporin.

Progression if it is the Cylco? We can switch me to a different immuno which I don’t really like the sound of as it’s much newer (thus less known about it) and my lungs have been so very good (not a mention of the R word in sight) and as they say if it ain’t broke don’t fix it...but then I might not have a choice.

Anyway as my sisters pointed out, nice of me to pick a different organ to muck around with for a little while. They always have had an amusing way of looking at things...


suzie said...

Oh wow pat on the back for lung's, I'm sure the kidney's will learn tow the line once the doc's find out why they're hissy hun.

Big massive (((HUG)))

Sarah Milne said...

Hope all the tests go well Em. Will be thinking of you as always xxxx

Anonymous said...

What a pain, Em. Let's hope they find a plan that will be of minimal hassle and discomfort to you.

Big fat huggles,

Audrey xx

Anonymous said...

Hi Emily,

Don't worry too much if you have to change your immunosuppressants, I had to last October as my Kidneys started to muck about on Tacrolimus, so they changed me to Everolimus (a drug not usually used too offen in lung transplants so i am told, but is becoming increasingly more used now) and I haven't looked back since. It is also a plus as they don't make me feel sick like Tacrolimus did. As you know the docs know what they're doing and if they change things, its in your best interests, as you probably know!

I read your blog often and wish you lots of luck.

Kim x

Anonymous said...

18 months post-TX, I had to change imminosuppressants because my kidneys, which had been deteriorating for a while, suddenly became very unhappy. I'm now on a combination of tacrolimus and sirolimus and both lungs and kidneys have been fine on them.

You're right though, post-TX there's always something to worry about - yet most people think that once you've had your TX you're sorted! I'm sure the docs will get it fixed!

Gill H

Holly said...

Will be thinking of you hun, hope the tests go well.

Much love x

Alice Vogt said...

I'm on the alternative to Cyclo... Prograf, and it's really fine. No side-effects really. So go for it if it'll help. That's their first choice here, with Cyclo being second choice.

Alice Vogt said...

Oh, and Prograf, is Tacrolimus...

Anonymous said...

hope the tests go well love.
Ring me if you need owt explaining