Wednesday, 18 February 2009


A long over due update from London. I have had to give myself time to process this info so I'm sorry for the lack of blogging.
My week turned into a bit longer as is usual here, if it weren't my 21st birthday this weekend I would be staying a lot longer I can tell you. Having said that they haven't done any tests that are out of the ordinary. I had a lung CT, which was pretty unchanged, lung function, which I think was around 12%, my lung function is quite up and down between 10 and 30% so that is not an abnormal figure for me. I was just having a bad day. Unfortunately the lung function techs still panic on my 'bad days'. I did well on the capillary gas on air, they take off your oxygen for as long as you can stand it and take blood from your ear to check your oxygen levels. It took a full 2 minutes for my oxygen levels to fall to 81% and the tech took the gas at that point. It came back as oxygen 79% and carbon dioxide a little on the high side but again not higher than what is within normal for me. And I've been on over night ventilation since age 17. Bloods have been ok as far as I've heard. On Tuesday went to the muscle labs. This was always going to be the biggest hurdle for me. Muscle tests are brutal, how they can put patients through them and even call them 'tests' is beyond me. They insert two NG type tubes into your nose, one sits above your diaphragm the other below, they have balloon sensors which are inflated when they're in place and they feed data back to a high tech computer. The tubes are thick and wiry unlike normal NG tubes. I always have difficulty passing them even with anaesthetic and jelly. They tried and tried until my sinuses bleed, I was in tears, my nose was pouring with blood, jelly and god knows what else. It hurt anyway, alot, but they did eventually manage to get them down. I sat in the lab with these tubes down my nose tape all over my face, really pissed off, I felt like someone had punched me in the nose, more than once. And one of the techs passed me a newspaper... I'm not going to write on here exactly what I wanted to do with it... but it wasn't read it anyway. I held a tissue under my nose catching the blood whilst they got their much needed data. But then to every one's surprise the results were 100% normal... None of us had planned on them coming back anywhere near normal but they conclude that I have NO DIAPHRAGM problems or 'funny breathing patterns' of any kind. The reason or one of the main reasons I was turned down for transplant in the UK was because of the diaphragm issues. They said they would make recovery post transplant almost impossible and a transplant wouldn't be the answer because I'd still be out of breath anyway. The diaphragm disorder no longer exists... so I will leave you to ponder that one as I don't want to say too much at the moment but I don't think I need to spell out what that probably means...


rattles said...

Hi rachael,

I hope and pray that this latest batch of tests and things leads you to being accepted for a transplant in the UK! Im thinking of you and wish you all the very best...

Lots of love Rattles Xxx

fsgs said...

Really hope you get accepted onto the list.

Marty Zelei said...

I ponder on the positive.... we are praying that all things go well, and that you not only get on the list in the UK, but that your wait is SHORT

Emmie said...

What fantastic news!!! I'm so pleased to hear that all those fears over the diaphram disorder were unfounded. Really hope that this means a transplant will be a viable option. HUGS xxx

Lynne said...

Brilliant news Rachy, hoping to hear that you are on the list soon.
Happy birthday too, keep smiling
Lots of hugs
Lynne and Kiri xxxx

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