Lung Transplant assessment?

[dall05]

Can anybody give me any information on lung transplant assessment. I have a date for assessment at the QE on the 26th feb and wondered what this might consist of. They have already done an angiogram,bone density scan,broncostomy, blood gases, and x rays at Worcs Royal and fowarded this to the QE in Birmingham. any info would be usefull. many thanks.

[Hidden]

I am sure many others can advise on this. Try the search box. xx

[dall05 in reply to Hidden]

Never used the search box before, thank's auntymary for that info, Its a learning process with me duuu!!!!

[sgbr in reply to dall05]

I have been going to Harefield hospital for transplant assessments ev 6 months. I have a chest x ray,lung function test, blood tests, urine test, ECG, and echocardiogram. Then in the afternoon see the doc. So far have been told not sick enough yet. Hope this helps

Sue x

[dall05 in reply to sgbr]

I guess not being sick enough yet is good news but I guess there's a narrow window between not sick enough and too sick. I wonder where that line is? . I guess we'll cross that bridge when it come's. As you probably think at least its a better option to be referred for transplant than not. Its a kind of back up plan if things take a turn for the worst. Thanks Sue for your help :). I've had all those tests you've had too so I think they just want too get a physical look at me. They mentioned a six minute walk which normally give's them a good idea of what your like. (bloody knackered normally)

[Hidden]

Hi - I've not had an assessment yet as I'm too fat at the moment however you might want to take a look at this site. Tia has just been through the whole process and she wrote a blog about it. save5.org.uk/

You seem to have had a lot of tests already.

Marie x

[dall05]

Thanks MarieWF. While I was there I signed the NHS transplant register so well done for answering my question as I am now a donor of anything thats anygood left on me to donate. Most of these parts have had a hard life but they tell me my heart is good after my angiogram. Good luck with losing weight and getting your assessment sorted. By the way it pay's if you have a contact number to be a bit of a pest as my origional referal from worcs hospital to birmingham went missing and I waited 3 months for nothing. This was only picked up by my consultants next 3 monthly appointment. I have since been told that its a good idea to keep tabs on whats happening with the transplant co-ordinator as they have all the information at hand. It worked for me but I did'nt enjoy pestering her as its not in my nature but sitting back and waiting for letters to arrive dos'nt always work as I found out!

[Hidden in reply to dall05]

I signed up too! Shockingly I'm informed apart rom my rubbish lungs the rest of me is still in pretty good nick! Tia will be delighted that you have added to her numbers.

I do hope you found her blogs interesting - I thought it was very reassuring.

Marie x

[dall05 in reply to Hidden]

Hopefully if it come's to it I'll have some good bits to help a number of people. It just makes good sense to help others when your done. Thanks again Marie!

[libby7827]

Hiya, I was assessed 3 years ago but had osteoporosis, they did do an up to date bone density scan it was found to be too severe for me to have the op as the bones could crumble during surgery. Probably as a result of the steroids over the years. However, one good thing came out of it, my osteoporsis treatment was revised and I now have a yearly intravenous infusion of zolendronic acid and a massive monthly dose of Vit D 3, and the condition hasn't worsened in 3 years - having said that I don't have any symptoms, pain, etc. anyway. Good luck with your assessement! Libby

[caroleoctober]

I used to carry an organ donor card and give blood, but I had breast cancer and then a mellanoma so when I went to give blood it was refused even though i have been clear 15yrs and didn't have a blood transfusion so I don't think I would be able to be an organ donor.

Carole x

[dall05 in reply to caroleoctober]

I'm pretty sure I cant give blood anymore because of the pills I have to take but I've put my name on the donar register and thought that I would leave the decision to those who know.