Newcastle

[Michelle12120]

I've just had a phone from newcastle. They want me to go up on Thursday for my one day accessement. I'm not sure what to expect.

[dall05]

Hi Michelle, I had my assessment done at Birmingham but I'm sure they will be pretty much the same. They will be looking to see if you fit the criteria for transplant. Basically you have to be ill enough and yet fit enough to survive the operation.

I had to do a 6 minute walk which I covered 408 meters but my sats dropped to 69 (off oxygen)

They did a chest x ray

a full spirometry

took lots of different bloods

urine test

then it was a grilling from a consultant about the risks

They will then tell you if you are to be put forward for the 2nd assessment which can be a 3 to 4 day stay in hospital while they carry out many more tests.

Good luck with stage 1 Michelle

Tony x

[Michelle12120 in reply to dall05]

Thank you dallo the phone came from out of the blue. I wasn't expecting to go up till jan feb time. Will update you how I got on.

[dall05 in reply to Michelle12120]

I didn't know what they were looking for and where they set their boundary's so I just did everything to the best of my ability and let them make the decision.

The consultant didn't hold back on the risks involved so be ready for that and remain positive. Its a risky path whichever route we choose so I thought lets see if I can get on the list and then make the decision on whether to go for it or not.

I am currently on the list and I have a 3 monthly check up next week at the Birmingham QE where they will do another 6 minute walk test, chest x ray, bloods etc so they do keep a good eye on you.

Look forward to seeing how you get on x

[flo1]

What fev are you? I thought you had to be under a ratio to get the go ahead for txp, it was mentioned to me in 2009 at 22% fev, I thought that this was around the figure they made noises on txp, I am heading for 54 this June and as I turned my fev around since 2009 and bounced back to 42% fev on meds they are applying pressure for assessment before 60, I have a couple of years left and feel no where near that point , I did in 2009 because I could not walk, or move....So any answers here would be good to know on my options if and when I want to go to assessment. Thanks in advance.

[tinamg]

I asked my lung dr after i was put on o2 and i am no go. other issues prevent me to be on the list. but it was explained well. i think flo1 i would try for that assessment too. I am 53 now and at 50 could still do alot was not on o2 never thought i was close my gp either. then bam i went down overnight or thats how it felt i woke up one morning and went to the hospital. my o2 dropped and i need o2 now to keep going. so i went from none to 24/7 over night. scared me was the first time in my life i was afraid of being alone. now after learning and the shock wearing off i am fine alone. i have someone come in to help me clean. i can still make half a bed lol. then need to rest a bit. thats what i do. i would like to know how you do alsol

best of luck and look forward to seeing your up dates.

[Michelle12120]

Thanks everyone. My gas exchanges aren't right that's why I been referred. Dr lordan explained about my carbon dioxide some people over breathe like me that's why they are low. And people who retain it don't breathe enlouch. I've posted another feed on what happened yesterday