wythenshawe transplant unit

i was wondering if anyone could give me any information regarding what to expect whilst waiting to go on transplant ĺist ( double lung ) . i have been for my 1st meeting today all which was just a chat and then i gave a urine sample at the end .. anyone tell me what happens now .. a very nervous 42 yr old woman

[Lenocker68]

I know how things were for my father waiting for his kidney transplant. For some reason no cadaver was a match for him. I'm not sure if it works this way with a lung or not. His sister came up a match. I'm sure someone else sill be here soon that knows more than me. Good luck.

[Caspiana]

Hello Hidden .

I was put on the lung transplant list in April. I live in Japan so my experience will be a bit different. But in order to get on the list you will go through extensive testing to make sure you are fit enough and have no underlying conditions that would be detrimental. You will have the most extensive health check up you've probably ever had. Then at the end of it all , if all goes smoothly you will be added to the list. It is a bit gruelling but just take it a day at a time. When is your next appointment?

If you need to chat please don't hesitate to message me. I know how daunting it feels.

Sending you best wishes.

Cas xx 🌿

[Hidden in reply to Caspiana]

thankyou so much for replying so quickly x to be honest i think my 2nd appointment is a 3 day assessment on the unit .. its all so overwhelming as without a tansplant im definitely out of luck . they just spoke today and didnt take any blood but did take urine and i also must have puĺmanary rehab to strenghen my heart as at present its beating at a whopping 130 bpm which is way to fast so for that reason alone i would not be offered a transplant xxx hope this message finds u well . thsnkyou sooo sooo much for sharing your thoughts and please stay in touch . good luck to u and wishing you good health and a transplant as soon as possible x

[Caspiana in reply to Hidden]

Thank you Hidden . Wishing you the same. If you look at my old posts I have some info about my assessment experience. Try to take it easy , your team will help you through. xx 🌸

[Dons-2 in reply to Hidden]

Hi Kemety

I'm a similar age to you (41) and have been on the transplant list since Feburary. I was assessed at Harefield where they have an initial one day assessment, then if you're considered a potential candidate will go in for a further two day assessment.

The tests were all painless and the staff were friendly and reassuring but as you say it can be very overwhelming.

When I first went I thought I was too well to go on the list so was shocked and upset to be told I wasn't. The second time I had come around to the idea, but then was told the operation was too risky for me and they weren't sure if they would be prepared to do it. I was devastated as I had realised it was my best chance of living longer. I had to come in a few extra times to meet the surgeon and have more tests to help them make their final decision, but for most people it's much more straightforward and you're likely to get an answer after your 3 day assessment.

I've also done a Pulmonary Rehab course which was fantastic. Whatever the outcome of your transplant assessment you should try to do this if it's available.

If you have any questions, then please let me know. I've done a lot of research so should be able to help.

Best wishes

Donna

[Hidden in reply to Dons-2]

hi donna im hoping this finds you in good health .. im awaiting an appointment for pulmonary rehab as im not able to have a transplant without doing it .. also i am not fit enough for a transplant at present as on oxygen plus my breathing bad as just got out of hospital in feb having my family being told i had 2 hours to live and to say their goodbyes as had type 2 respiratory failure .. anyway i defied all the odds on 3 occasions to live and tell the story .. doctors certainly couldnt believe i survived ... and now i have the biggest fight of my life to get myself fit for the chance to get a good shot of a transplant xx i am wore out as cant sleep as scared i wont wake up its so so frightening so when kind people like yourself take time out to reassure a complete stranger it makes me stronger so thankyou from the bottom of my heart to all of you with best wishes mel xxx

[Delahunt in reply to Dons-2]

Hi 👋 I Donna just wanted to let you know I do hope you get s good out come to go forward with your transplant wishing you well all the very best fingers looking out for you keep positive smiling x Bernadette xx

[Joseph260268]

Hi there, Wythenshawe will now write to your chest specialist at your usual hospital to discuss how the meeting went. You will then receive in about a months time a date for you to attend your 3 day assessment programme. I only know this as I am currently going through the same process.

Kind regards

Joseph

[Delahunt in reply to Joseph260268]

Hi 👋Joseph 270269 just wishing you well & good luck Bernadette x

[Joseph260268 in reply to Delahunt]

Thanks ❤️

[Hidden in reply to Joseph260268]

Thankyou Joseph ..what a very emotional day hearing the absolute facts at wythenshawe perhaps what i already knew but no one had even told me straight . so good luck and hope all goes well x take care mel x

[Joseph260268 in reply to Hidden]

Thanks ❤️

[Delahunt in reply to Hidden]

👋 aww kemety just wanted to wish you strength & get better & I hope you keep well for transplant keep fighting . Rehab will help physically am in middle off mine & the staff look after you & work at your own pace but builds you up all best c wishes. Bernadette x

[Delahunt]

Hi 👋 Out there to all the lung transplant pre post members 👋. I have read a lot off lung transplant posts & wish everyone off you the best & hope you are all good . However I am normally a very positive person & believe it's the best way forward . However These last few weeks I feel I am struggling & very tired sleepy . I have sever Copd & right upper lobe changes & my local hospital consultant says I do nit need require oxygen & FV 39percent & he is referring me for consideration off lung transplant . However I haven't had the referral assessment as yet . I do attend 2 days at pre hab through my local community Aras team . I do have a good network off professionals input. This week I have been very bloated ( not food ) & I find I am exhaling out a lot longer & it's an awfull feeling . Therefore after Reading other members posts with great interest & best wishes to you all I was hoping to reach out & if anyone has experienced what I've mentioned above I would greatly appricate some input . Also I find because I am exhaling loads during minimum walking I won't even make it to lung transplant assessment never mind lung transplant listing Remaining hopefully positive & Trying to keep well in hope I get closer to an appointment for lung transplant . So Please if anyone can high light info share I do appricate it . Also if anyone can explain what your in the window means . At present I am blowing out exhaling frequent . Thankyou & everyone all the best to you all & keep strong positive well & breath Easier .Bernadette xx

[Hidden]

hi bernadette i believe in the window means window of opportunity to go forward exploring the chances of transplant .i hope thats what u meant as my consultant thought i may have missed my window of opportunity but fingers crossed may be Ok but very early stages as I have only been for my 1st appointment at wythenshawe just really to get an idea of what a huge amount of work goes into the decision making of who gets a transplant etc .. stay strong .. best wishes mel x

[Delahunt in reply to Hidden]

👋 hi memetic thankyou for responding as you are aware this condition lungs is a hodsons choice. But hands On heart I will be very grateful off the gift off life when it comes my way & I do hope yourself is well & your progress continues to be great process with pre & post transplant outcome. Thankyou & wish you well & I hope am right behind you when you receive your call . Offer you my hand & I will look out for you be strong keep well. Hope to hear from you thankyou for sharing what you can regarding lung transplant & your condition as it helps to know we are not in isolation & reaching out is supportive for the body mind soul spirit x thankyou keep smiling Bernadette xx

[Lilian226]

Hi Mel, haven't heard from you for a while. I hope you are feeling better. Any progress with your appointments.? Talk soon. Lilian xxxxx

[Hidden in reply to Lilian226]

Hi Lilian yes thanks for asking as today i got a call unexpected to be honest to invite me for my 3 day assessment on the 30th Oct but due to another important appointment we have decided on the following week 6th Nov so that has been pencilled in but they will ring me next week to go ahead as computer only goes 6 weeks ahead in booking it . Anyway it once again caught me off guard and felt very nervous and bit upset ... my emotions lately are all over the place ! On a happier note got my PR app on 29th which cant wait for just to get me out and to know a safe way to exert myself as again heart rate 130 at rest a lot of the time so just a bit of reasurrance will be gladly received .. hope this message finds you well and everyone else who has responded , advised or sent their best wishes to me .. a heartfelt thankyou to you all xxx mel x

[Lilian226]

Hi Mel, what good news about your 3 day assessment! Not long 'til 6th Nov. Do you have to stay there for the assessment or do you go home each day. Of course you're going to feel nervous wouldn't be normal if you didn't. Once you start your PR it will take your mind off it, it will make you feel so much better and as you say it will get you out and meet new people. You will learn so much from it. I would really like to do it again. I understand that you need to learn about a safe way to exert yourself, I was the same, very timid, not now, I know I can really go for it. I feel fine thank you Mel, I get my lazy days but that's normal for me and I enjoy them. You have so much to look forward to and I look forward to hearing from you again. Love Lilian xxxxxxx

[Hidden]

Yes i need to stay for 3 days . On the 1st day my family member will take me in and then on the last day when we speak with the surgeon they recommend your family member or partner etc be there to take in what the surgeon says as theres alot to take in i believe so going to be a long 6.5 weeks until my appointment .. again thanks for your support xx mel

[simplesprout]

Hi kemety, thanks for the follow. Im at the early stages of your journey, i was referred to manchester 2 years ago but the surgeon advised me i could go on for a while longer. After a month in hospital with pneumonia in jan/feb my consultant has now re referred me back to wythenshaw, so here we go again. Its such a big phase i a persons life and i wish you all the best for the future.

[Hidden in reply to simplesprout]

Hi I'm a little confused as I last posted a reply to u 6 months ago but just received one yesterday from yourself ..now my phone has been playing up so excuse me for asking this but is your reply from yesterday or is it in fact from months ago x

[simplesprout]

Sorry to confuse you, its a mistake from me not checking the dates of posts, i have only just joined the site properly in february, however last year i was frantically searching any and every site with regards transplant info, so that was obviously when i posted first. I hope you dont mind me following your journey on this site, as its also a journey i have to take. Best of luck

Steve

[Hidden in reply to simplesprout]

Oh ok I get you now ... well my circumstances have somewhat changed as to be honest I was having panic attacks and bad bad depression dealing with the huge impact the lung transplant assessment and the actual whole situation was causing me in my mind ...in the end I couldn't take no more worry and pretending to my family I was coping so broke down to my mum and told her I was not ready to make such a huge decision plus the fact the 1st consultation basically made me aware in no uncertain words that either way I won't see 50 as a lung transplant is not a solution and there are many risks but of course there is the flip side that it will give you a life breathing normally again .. will be able to go away and start afresh it's just the huge dilemma of not knowing ...I have put my decision on hold and feel much better for it ... I have cut right down on all my meds and my oxygen has gone from 2li to 1li and I plan on just taking each day as it comes ... although I may feel different at some point I just cant get my head around it at present .. good luck to everyone who is awaiting a transplant and total love and respect to them ..I'm due to start another PR but this time it's at the hospital as the others I went on weren't and due to shingles then a chest infection only did 4 sessions out of 12 on both courses ...I did wait a long time to get on the 1st PR and as I needed to complete a full course to enable me fit enough for lung transplant assessment so that's why I got another course..I wish you all the luck and love on your journey🌸💮 😊.please keep in touch with updates

[simplesprout]

Hi kemety, sorry to hear you had such a rough time regards the op decision, thankfully its one most people dont have to make and can only be understood by people who do. My first meeting at wythenshawe was well over a year ago and thankfully at that point it was suggested that could hang on for a while longer. After a month in hospital with pneumonia in January my local consultant has decided its time to go back, so no we start again. Its great tohear your feeling more positive about life now so just keep doing what suits you. I will be on this site for the forseeable future, so will keep you up to date on how i get on.

All the best

Steve

[Hidden]

Yes please do keep me informed .. Your local to me obviously due to same hospital for assessment .. would like to know as I haven't ruled it out completely yet ... decisions need making soon or I will have to be re evaluated I believe ..you never know our paths may cross on the unit (strangers things have happened) as it's such a small world 😊