Lung Transplant Assessment Waiting times

[Queenbean]

Would anyone like to share their experience of waiting for Lung Transplant assessment, we are waiting for the 3 days of assessment and wondering on average how long we should be waiting and if we should check with people ....

[Caspiana]

Hi QueenBee . I am on a transplant list but not in the U.K. however, Hacienda and sibkev can help. 😀 It's nice to meet you. xx 🍁🎃

[Queenbean in reply to Caspiana]

Nice to meet you to ... how long have you been on the list?

[Caspiana in reply to Queenbean]

Seventeen months. 😳

[Queenbean in reply to Caspiana]

That’s a while to be on the list ... i hope the day comes soon !

[Caspiana in reply to Queenbean]

I do and I don't 😊 but thank you. I hope your assessment goes smoothly. xx 🌿

[Damon1864 Volunteer]

Hi I've been waiting nearly nine months.

😊 Bernadette xx

[Queenbean in reply to Damon1864]

Hi Bernadette, i hope you dont mind me asking which transplant center your with and if they said you would need an appointment for pre assessment first ?

[Damon1864 Volunteer in reply to Queenbean]

Hi. Inm waiting to go to Newcastle, I know they have quite aback love.xx

[Hacienda]

Hi Queenbean, Nice to Meet You. As Caspiana said myself and sibkev are on the List. I have been on the Transplant list for 2 years & 4 months, I had a 4 day Assessment at QE Birmingham, I didn't wait long for the assessment about 3 months, But, this long wait now is wearing thin, my Friend with me for assessment had her Transplant 2 months after the assessment. We are all Different, so much to take into account, Chest size for Lungs, Blood to be the same, Antibodies mine are bad at 98% so that has to be a match. I know that the call can come out of the Blue, just wish mine would hurry up. In the mean time, I stay Positive with my General Health, Don't smoke, go to Exercise classes twice a week also the Gym and at Home, Always on a Diet. I am also on 16 hours Oxygen daily Plus all the Meds & Inhalers. can't wait to paint the Town. Ha Ha , I know I'll get there in the end. Keep us updated Hun. Best of Luck. xxxxx

[Queenbean in reply to Hacienda]

Nice to meet you Hacienda and good luck with the transplant it is a long wait, I hope there's a match soon, we are hoping to hear soon on lung transplant assessment, it all sounds very scary but at we are exhausting all other treatment options ... i hear blood group and antibodies plays a big role in determining transplant matches but i don't know the ins and outs hopefully when we get an assessment ...

[Hacienda]

I was initially going to Freeman which is an Excellent Hospital, I have 2 friends who had their Transplants there. But as I am Nearer to QE Birmingham, My Consultant referred me there. The QE is just as excellent, and after these last few Years I know the Doctors & Trx Staff quite well. xxx

[Queenbean in reply to Hacienda]

Oops i was meant to reply to you but it went on the post instead lol

[Queenbean]

My mother and I have been on a rollacoster ride this year more her than me, initially went into A and E in January and treated for chest infection since then she has been in and out of hospital a lot of times since March she started on 0.5 ltrs of o2 16hours a day now she’s on 2.5 ltrs resting 24/7 treatments do not seem to be working ideally we both see lung transplant as an ultimate last option ... we have yet to be assessed. She had to have some urgent tests in Papworth and we both liked it so chose papworth as the transplant center although we are closer to QE .... I read her these reply’s and she does feel comfort from hearing others in similar situations ...

[Hacienda]

Hello Again my Dear. You have to go where you are most Comfortable. They are all Excellent Transplant Hospitals. Before my Assessment I didn't know anything about Transplant, I have only Learned from my Consultant at City Nottingham, and The Amazing Staff at QE Birmingham, then Joining The transplant Forums of QE & Freeman about 2 years ago, then this amazing HU Forum, where I have Learnt such a lot from our amazing Friends here.

How is your Mum doing now? I too was very bad with my COPD when Diagnosed in 2013, although I had been very ill before Diagnosis for about 4 to5 Years thinking it was "Bronchitis" only. In June this Year I had 4 Valves inserted for Lung Reduction which has helped a lot to lessen the SOB, still need the Transplant. I hope you find your Answers and Your Mum can be admitted ASAP for assessment. I do hope my little input helps you Both. Always ask whatever you want, if we can answer with reassurance, then that will add some comfort to your Mum. Take care. Love n Hugs . Carolina xxxx

[Kelda in reply to Hacienda]

Hi Hacienda.

You sound like you have the right perspective and a great attitude. I hope you get your transplant soon.

I like all your posts to Queenbean. It’s so helpful to talk to people who have been through it and know how you’re feeling.

I’m very new to this and have just been told that I’ve been accepted on the list, but haven’t taken that decision yet. ( it’s only been 4 days) I’m very interested in talking to anyone who has gone through this and finding any forums. At the QE they told me of a fb group but that was all.

It’s just such or to take in. One minute I feel I’m ready to take the plunge and the next minute I’m not.

Any help would be appreciated.

Love K

[Hacienda in reply to Kelda]

Just got home Hun, will come back to you xxxx

[Hacienda in reply to Kelda]

Hi Kelda, I took a week to give my Answer to Rochelle the Transplant Nurse, Took all the paperwork home and with Hubby we decided Yes, it is the way to go.....Fast Forward 2 years & 4 Months still on the "Active" List , not had 1 call, but that call could come any time. I have remained Positive and Done everything I need to do, Stopped Smoking 4 years ago, Go to Exercise Classes, Rehab , when I am accepted, (had 5 Courses), The Gym every week, On Oxygen 16 hours per day, have the odd tipple, Don't go out Night Times, Social Life is day time, each to their own. Every 4 Months go to QE for my Tracking Appointment to see Dr.Thompson or Dr. Vicky, Every 3 months go to see my Consultant who is a Good Friend now, She arranged for me to have "Valves" Lung Reduction in June, Stopped my SOB. I am with a Breathe Easy Group that I helped to set up 3 years ago, it is amazing. I am also a Member of QE Birmingham Heart & Lung Web Site, Just type in Search. I have now,quite a few Friends who have had their Lung Transplants, Everyone is doing very well, I would not want to Miss out. That is your Decision Hun. Bear in Mind I am getting older at 66, hence why I try my best to stay Fit & Positive for a Transplant. Hope this helps You Kelda, Good Luck Hun. Keep us informed. Love n Hugs. Carolina XXXXX

[Kelda in reply to Hacienda]

Hi Hacienda,

Your amazing. I saw Dr Vicky at my first assessment, then had Sophie the transplant nurse and I also met a junior doctor whose name I can’t remember. It was all very intense; such a lot of information, I think a lot of it went over my head. I’m sure I should have asked more questions but they were very nice and said I can always ring them if I need to. Also I am going back next month to see the psychologist and to meet with someone who has been through it.

I too gave up smoking 4 years ago and have done I think 3 lots of pr. I go to ‘fit to breathe’ each week and I have also run the Breathe easy group for the last 10 months. I am on oxygen pretty much constantly and have been for some years. I have a bi-pap mask to wear at night.

I don’t have much of a social life really. I’m lucky enough to have my son here to help me and my daughter comes back most weeks and attends most of my appointments with me.

I have been ill for so long it’s hard to remember anything else. I still have things I want to do and places I’d love to see.

I’m learning there’s no easy fixes, but the rewards could be amazing.

Hoping the call comes soon.

Love K X

[Hacienda in reply to Kelda]

Morning K, I am only just getting round to Reading all replies. I was out all day Yesterday, Good, had a Breathe easy Meeting, to finalise everyone going to our Christmas Party ( do this every year). Hubby joined in the meeting as he is very much part of all the Charities we do, had his Head shaved in August for BLF, we are now arranging the Presentation, after eventually collecting all pledges about £500. later , we went to play "Bingo" at his Pub, it was First time I played there, I won £7 . Ha Ha. By the time we got home, I was pretty exhausted, House Oxygen on, had some food. Hubby works evenings, so I settled down to TV. Fell asleep in the Armchair, as you do....... When I first Started my Appointments at QE, with Dr. T, I didn't know what I was suppose to ask. After my pro Trx friend gave me her Transplant Bible, I started to understand much more. this allowed me to "Write Down" any Questions, regardless of how "Negative" they may be. Because of Joining " Forums" , Like QE, Freeman, and This our Special one, I have Learned So Much more. It is Great that you have your Son Help at Home & Your Daughter when there. Half my family Live in Spain, so I rely on " Wassap" or Skype" amazing these days. My Daughter will be here with me in January with my Grandson, My Granddaughter has only just returned to Spain, That was a Great week, getting to know her Baby Bump a Girl. also, I enjoyed my 5 year old Great Granddaughter. My Decision was based on wanting to live longer to see my Now Grandchildren, and Those that are waiting to See their Nana with The Normal Granny Cuddles.

We have so much we want to live for, as someone said it is a Personal Choice to go ahead for Transplant, It is an easy choice for me. The waiting is a Pain, But hey, Lots to do while waiting. Keep Happy, Keep Strong, Stay Positive Hun. lots of Love n Hugs. XXXX

[Joseph260268]

Hi there, I am on the list in the UK 🇬🇧 and I have been waiting 4 months. x

[Queenbean in reply to Joseph260268]

I am finding that it is the norm for ppl to be waiting a few months at the very least - has anyone been called for a transplant a few days or weeks after being out on the list ?

[Hacienda in reply to Queenbean]

Depends on The Matching Hun. I'm on "active" List, So when there is a Match, they will call me immediately. It is Down to "AntiBodies" for me , it was explained that Women who have given Birth or had Surgery will not have Good antibodies, that is why I am still waiting. In the meantime, I exercise, eat properly, don't smoke and generally get on with Life as best as I can, which is Good. Being Positive also helps, It is a Lot to Digest, Your Mum will be Fine. Take Care Both of you. Love n Hugs . xxxxx

[Queenbean in reply to Hacienda]

Thanks Hacienda we shall see after the assessment we might not even get on the list ... i will post on here an update when we get assessed! fingers crossed

[Kelda]

Hi Queenbean,

I have just got out of Birmingham QE hospital after 4 days of tests and have been accepted onto the transplant list. They advised that I take some time to decide if it was the right way to go for me and I also have to have a check up with my dentist before going on the ‘active’ list.

Originally I was told that it would be about 6 months before I heard from them after my consultant had referred me. I think it was only about 4 months until I was asked to go for a day consultation with the transplant team. If they decide that you need a transplant they then book you for the 4 days of tests. I was quite amazed that I Was admitted only four weeks later. It took so long to get this far and then suddenly it all happened. They say from being admitted on to the list it could be anything from 2 weeks to over 3 years!

I am so appreciative to have this opportunity but also thankful that there is no pressure. My heads a bit all over the place at the moment and I’m just letting it all sink in.

All I can say is the very best of luck to you. Try not to worry about the tests just Veiw it as a bit of an mot and a rest.

If there’s anything else I can tell you just ask and please let us know how you get on.

Love K

[Queenbean]

Thanks for replying kelda - my mum has her assessment for early December - I agree it’s a huge decision, it’s 3 days, we (me and my mum) are being preemptive and booking the dentist appt prior to assessment, we see the transplant has the ultimate last option my mother is rather keen on keeping her lungs inside her chest as long as she can, but things can progress quickly. Will keep you all posted about the transplant assessment....

[Hidden]

I had a four day assessment at Freeman before bring accepted on to the transplant list. I was waiting for 7 months before my transplant. That was two years ago x

[sandy123cookie]

I did my 5 day assessment I live in Canada 🇨🇦 it was a very long list of atonary social worker, psychiatric evaluation, 6 minute walk test, pulmonary function test, lung scan, meeting with transplant team members, costs of accommodations for stay post op 5 weeks pulmonary physio and transplant clinic information sessions then after surgery you arebincubated and on support for 4 to 5 days post op you have to live with in a 2 hr distance from hospital. Unfortunately I don’t do I will have to pay for accommodations for 3 to 4 months post op before going home. They give you a list of all rejection drugs and ask you to send into insurance company to make sure they are covered unfortunately prednisone will be a drug you take for life. Hence the weight gain. I weighed 130 before starting all the steroids and prednisone my weight was 182 and the team said if I didn’t get my weight down to 173 they cannot proceed. I was in tears and upset that such a small amount of weight was so important. You meet with anesthesiologist and physio team. It was the longest 5 days and the most expensive of my life