Calling out to anyone who's going/been through the lung transplant process

[rattles]

I have my first appointment with the lung transplant co-ordinators and transplant consultant very soon.

Can anyone tell me what to expect at the first appointment please? They recommend you take a family member or friend with you, why?

This is to be followed by a 3 day admittance for assessment.

If anyone can give me an idea of what to expect i would be most grateful.

Thank you.

[rattles]

Thank you Stitch. xxx

[EeJay]

Hi Rattles

I have been on the transplant waiting list for over 500 days, but am not currently on the active list as there is a query over a recent scan (not done as part of the process, but as a result of going into hospital with a pneumothorax). I will be reviewed in September.

The transplant team will lead you through everything with great understanding. Go prepared to tell your medical history several times. You will be grateful for the family member at some point during the process, and I do not think they will let you "go solo", as you will need someone close after the operation and it is best they know what you know right from the beginning.

I was told that there is a small window of opportunity for transplant: keeping muscle tone and keeping up with regular screenings being important while waiting. The waiting can be difficult, but knowing there could be a second chance, I cannot resist hoping.

I hope you have a good meeting and move on to the assessment in due course. My advice is to keep an open mind, listen to the team and look around the waiting room.

All best wishes

EJ

[rattles in reply to EeJay]

Dear EJ,

Thank you so much for answering my question, i really appreciate it. I wish you the very best of luck too and hope a transplant remains possible for you.

Very best of luck and wishes.

[mrWheezy]

hi rattles I am end stage with IPF and PH and at only 38 years old i didnt know what to do at first.

I went in to hospital 3 weeks ago and was in for 5 days for my transplant assessment and am now on the active register for double lung transplant. The assessment itself is a little strange you will get an itinerary of what tests you will be having and when,you will have a counselling session with the transplant co-ordinator with your partner/carer as you will need a comprehensive support system after your op. there will be at least a day where you have nothing but bloods taken and another day where you dont stop with one thing or another.The angiogram is a little uncomfortable( a probe goes in at your groin to check your heart and lungs and will measure your blood pressure between the two). The team you will meet will give it to you straight they dont sugar coat anything. Most people think once you have a transplant you are cured and go back to normal,its not a cure - its a treatment that will give you the chance of more time with your loved ones, your life will change in terms of the amount of drugs needed to stop the transplant rejecting, what you can eat and drink. Yes you will be able to breathe properly again with therapy but it is a massive decision to make knowing all the information,and after all the tests and meetings and the specialists have decided you are suitable you then have the choice of going on the list or not.

I guess they are making sure you are committed to the changes you will have to make as they dont give these gifts to just anyone.

I feel blessed that i may have another chance and its overwhelming sometimes- thats where the support comes in from your loved ones.

I hope this helps and if you want to ask me anything please feel free to message me

Tony

[brujapatsy in reply to mrWheezy]

wishing you all the love ,luck and courage that you will need x

[rattles]

Hello Mr Wheezy,

Big thank you for taking the time to write such a detailed response, I have many questions so i shall take you up on your kind offer to message you. I'm so sorry to read you need this at only 38, i am only a little older at 43. Since the letter landed on the doorstep i have been feeling rather numb, its so very real now so i dread to think how you must be feeling.

Best wishes to you and thank you again for letting me reach out to you during your tough time.

[Gilliam]

Hi Rattles

I too am having to decide whether to go on the active transplant list. I am a 42 year old woman who has NSIP secondary to Rheumatoid Arthritis and Bronchiolitis obliterans and was referred to the Harefield a couple of years ago. I underwent an assessment and was deemed too well (my quality of life was ok at that time to risk undertaking a major operation). However I have declined and went back in May for another assessment. I stayed in for just one night as they managed to condense the tests into two days. Mine involved lots of blood being taken, lung function tests, ECG, echocardiogram, a 6 sminute walk test, CT scan, X-rays, lengthly meeting with the co-ordinator and physcologist and then finally with the conultant. It is definitely worth having someone with you to keep you company and take it all in. Although this will make you laugh - when asked how I would make my way to the hospital should I get the call my husband replied "Oh she can drive there". Not sure my driving skills would be good on the way to undergo a double lung transplant operation!

It has been agreed in principle that I can go on the list however I do need to get a bit fitter - I lost a lot of muscle following a hip replacement operation late last year. I am going back in September when I will need to decide! Still don't know what I will do as it is such an enormous decision to make.

I really hope you get on ok and that all your questions are answered. The team at the Harefiled are amazing and i am sure they are great at other centres around the UK. Keep me posted and if you want to ask me anything please message me.

[rattles]

Dear Gilliam

Thank you for your excellent response and kind offer to message, between you and Mr Wheezy i feel very fortunate.

Your husband sounds brilliant, what an answer ha ha ha, I don't think you will be forgetting he ever said that, and you are right it did make me laugh very much.

So sorry you are going through this too, i wish you the very best of luck and will be keeping my fingers crossed for you in September.

[smokless]

I too am going into Papworth 17 sept for my 3 day assement ,nerves are just starting to kick ,yes we are so very ,very lucky hopfully I will go on the live list .will let you know .Jackie