Lung transplant referral 1st appointment

[1hopefuture]

Two weeks ago my consultant told me that my % had dropped 10% to just below 30%.

That my ct scan was clear but copd and my echocardiogram was clear but I wasn't suitable for coils.

That because I haven't smoked for 3yrs I thought I was alpha 1 antitrypsin deficiency person because no control even on optimum meds. He was referring me to Wythenshawe for lung transplant.

So today I have received a appointment at Wythenshawe for July

Has anyone got any advice on the process at Wythenshawe and what to expect from here?

[diesel12]

sorry I can't help but someone will be along soon who will have some answers.

[Sheilab123]

Sorry I can't help, but just wanted to wish you all the very best. Xx

[Dedalus]

Can't help -but all very best wishes for your appointment xx

[Stu0151]

I was at Wythenshawe last month for my first appointment. On your first appointment you will meet some of the transplant team, they will view your medical records. They will do a few tests and then you all have a sit down discussion in which they will tell you the Fors and against of the transplant procedure including survival rate etc. The will decide whether  you are both ill enough and well enough for the transplant, and answer any questions you might have. The team were very good with me and my wife. I hope this will help you a bit. Good luck and take care.

[1hopefuture in reply to Stu0151]

Thank you  it's an exciting and scary situation all round.

Xxx

[Stu0151]

All I would say is don't start doing to much research in to it all, as you could miss read things and scare your self more. Just stay open minded and listen to what the team says, as they are the people who know. You can ask them all your questions. I would say before you go to the appointment make a list of the question you want to ask, as they will put a lot of information to you. Take someone with you as I couldn't take it all in. There should be a phone number on your letter, you can always phone them ask them more about the appointment if you want. I hope this helps and remember your not by your self there are a lot of us on this sit here for you. Take care.

[1hopefuture]

Thank you xxx in many ways I'm less scared about this than I was about the coils treatment that I was originally being considered for xxx

[Mandy6513]

I had my first assessment in Harefiled but im assuming they all do the same routine.

You should be met by a transplant co-ordinator who will explain the tests you will have that day.

You will first have blood taken and provide a sputum sample and urine sample.

Then xray and heart echo and a test for osteoporosis 

Then off to do a lung function test 

You will then have the chance to speak with a consultant or one of their team ....They dont usually tell you on the first assessment because the second one has a lot more tests but having said that i was told that i would be offered one so they may tell you then.

Anything you can think of that you want to ask them write it down because there is so much going on everything goes over your head...

It was a full day when i had mine done so expect a long day 

Good luck x

[1hopefuture]

Thank you xxx i have had ct scan Feb echocardiogram March ecg Feb and having pulmonary tests gas exchange volumes etc on this Wednesday coming. I also have a interventional cardologist appointment next month presumably for a angiogram seems to be tests everywhere at the moment xxx oh last xrays were January too.

Bloods for alpha 1 antitrypsin deficiency too.

There really through aren't they xxx