Hi, After the 3-4 day lung transplant assessment was your prognosis mentioned if you chose to not go on the transplant list.
I was given a lot of information regarding a transplant improving my quality of life and my hopefully having a few extra years if I was lucky enough to get a transplant. Consultant did stress it would not give me a normal life expectancy and then almost mentioned in passing that without a transplant I had about a year.
It was only on discharge that these words hit home, and I wonder if others had the same experience?
Written by
mary1956
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Oh Mary so sorry for the situation you are dealing with, I am unable to advise myself but I hope some other folk who have been through the assessment will be able to communicate with you shortly.
Don't hesitate to call the nurses on the BLF helpline any week day for extra support should you feel inclined.
Yes, I was told the average lifespan post transplant is five years. About seventy percent of us will survive the first year, ninety percent will experience some form of rejection within the first year. Fifty percent will survive the whole five years. The statistics for lung transplant are the worst amongst all solid organs. HOWEVER, these are statistics. It is not a magical crystal ball predicting your outcome. None of us will know the outcome until we have had the transplant. There are just too many unpredictable factors and grey areas that no-one can forsee. It really means we take a chance. But yet, thousands and thousands of people sign the paperwork to undergo transplants every single day. Why? Because hope is better than no hope. And with modern medicine now many people live beyond the five year life expectancy.
I'm afraid it's true to say I will not live to see old age. But I figure that living a short fulfilled life is good enough for me. Discuss this carefully with your family. However, it's best for you to make this decision for yourself. Also talk in depth with your transplant team if you intend to go ahead. If you need to talk , I am always willing to listen. It's a gamble and a really tough path. But for many it has provided more time and a better quality of life.
Hi Cas, Thank you for your reply. I have taken all you say into account and agree entirely. I have agreed to go on the list as a few years is a bonus.
I think my biggest shock was the Consultant saying that if I didn’t get a transplant my current lungs would only last up a a year as the scarring is getting rapidly worse. I wondered whether others had been given a prognosis if they didn’t go a head with a transplant?
Morning Mary, As with Cas, together (similar time), I too was on the Transplant List at QE Birmingham. . I was told the same as You. I waited for 3 Years for the Phone Call which never came as my Antibodies were low and I needed 100% matching Antibodies. It was my Lung Consultant who suggested at the same time We were thinking that maybe Come off the List for awhile as the waiting was making my life quite traumatic. After a Family intense Discussion I came off the list. I am now 68 Years of Age and Yes, my Lungs are Deteriorating as we know that would happen. ( I have had 2 procedures for " Valve insertion" . I Doubt I would get through a Huge Op as a Transplant now. I have tried to maintain some Physical Exercise Routine & Live Each Day as Best I can, along with my Hubby being there and my Soul Mate. I would always Encourage anyone To Consider Transplant. I also encourage The Gift of Donation, I feel very Strongly about Gifting. Do what you think is Best for you a 100% along with your Family, Discuss with Your Transplant Team, Write everything Down. I wish you the very Best in Looking Forward to a New Way of Life. Breathe. PS; Join a Transplant Group, I'm with QE & Freeman. You Learn so much as you have with Our Caspiana, . Much Love. Carolina. XXX
Thank you for your reply. I think I’m struggling with not so much the transplant, but how little time I have left without one. I’m hoping that the one year prognosis without a transplant is wrong. I have had my condition for 7 years, and stayed stable for quite a while. Now every day I can feel I am deteriorating, and that is scary.
Luckily I am surrounded by amazing family and friends.
I am also going to be a first time Grandma in February, so great incentive to stay positive and well. X
Hi Mary, Congratulations on becoming a First Time Granma, That is enough to make you want to Live as long as Possible. If you don't mind me asking how old are you?. As I said , I am older at 68 now and the Risks are against me, The 4 years since I went on the List at 64 and I was quite fit then, apart from the Lungs. It is a Matter for me to say " If only it had been sooner" as I was Diagnosed in 2013 but I know I had Emphysema much longer. I have 5 Grandchildren & 2 Great G.Daughters, The Youngest at 18 months Thinks I live in a Phone (Wassap). Not because of this Pandemic that I have not seen any of them it is because they Live in Spain, But, Thank Goodness for Technology. I wish you a very happy Future which ever way you choose to make your Decision . Much Love. C. XXX
Hi, I’m 63. Diagnosed eventually with Chronic hypersensitivity Pneumonitis with fibrosis in 2013. Lots of mis-diagnosis first. Had probably had condition 4 years before that as that is when breathlessness started.
They can’t find the trigger as it’s none of the usual such as birds, so can’t avoid the antigen.
Hi Mary, What I didn't say was That I also was Misdiagnosed previously with Bronchiestesis about 4 years before Emphysema. I waited too long to be put on Oxygen, which may have improved my Breathing, But , we are here to talk about it which is a Great big Plus. Stay Positive my Love. Keep us Updated on your Decision. Love C. XXX
No one goes on the list unless their doctor believes they have less than two years to live. Organs are too precious to be donated to those who have an estimated probability of a longer life. However without an assessment from the lung transplant hospital you won't know for absolute certainty that you will be a candidate . If you are seriously considering this then it is better to act sooner rather than later. xx 👋
Hi Oh I didn’t realise that. Thank you for your reply. I’m already feeling better having shared my concerns with you all. I was assessed 2 weeks ago and I’m on the transplant list Thank you. X
as always Caspiana words of wisdom will tell you how it is. I had double lung 14 months ago and can tell you how much of a difference it can make to life. i have just returned from a 3 mile walk with my dogs which i do every morning, even in the rain, because now i can !
I was told after my assessment that i could posssibly go on for a couple more years or one of my regular infections could cut that time short, but i wasnt enjoying life so it was a no brainer for me
i went on the list 22/05/2019. I got the call 01/06/2019, since my TX i have met others on my clinic day which have gone on for many years a couple even over the 20 year mark and still going strong.
Hi Mary - I am also a Mary , and being considered for a lung transplant. I completely understand your situation and your anxiety at this prognosis. I had a meeting back in January, where the risks were explained to me and it was a lot to take in . Have a video call with the transplant team in a couple of weeks, and just had lung function and bloods done . I was just 65 when transplant was suggested, but now coming to 66 , so not sure if they will still consider me.
I want to go ahead with this if it’s offered , but can understand your position and anxiety.
They have not given me a prognosis yet , but I am coming into year 5 of this illness being diagnosed. You are ahead of me in that you have the choice to go on the list , I just hope it’s the same for me . Wish you all the best with this. Warmest wishes.x
Hi Mary I was given 2 yrs to live in 2009, I was diagnosed with Alpha One Antitrypsin in 2007 aged 46, I did not want or think I could do a transplant at that time, I had 22% FEV I was aged 48 when they told me I was dying..I was housebound 2 and half years, I quit smoking got walking with a beautiful dog, change dmy life and moved from a City to Coast got married too !! I thought I was going to die, I am still hoovering down the stage 4 but up until last yr continue to hold and be stable, be honest attribute that to fighting , postiivity and walking daily every day!! with 3ltr liquid oxygen not worried about the stares, I have a book on them, and its more important I hold onto what little left of both lungs i have..I run support groups for alphas here in UK and abroad..mine is a genetic disease a sister disease to CF..last year I had a lot of infection and almost certainly took a bit of lung function again, I was due to assessment at harefield double lung tx April 8 then covid..I live in Devon so its parked and it may stay that way ..my advice is here I hope this brings hope to you we get told an awful lot but proving them wrong is something we are all able to do with mindset..keep focused on you not text books transcripts from the specialists they are not us don't walk in our shoes and have no idea how resillent a person is only those fighting battles on this scale know the diseases challenging them..I proved a lot of them wrong and I am probably through strengthing me what is left going to continue to do so for as long as i am able...its not over until you stop fighting that is the main ingredient...but let me stress that the very best thing a lung patient can do no matter how hard it is daily is walk...start small and build up..its lifesaving! Good luck, please don't allow that arsehole to dampen you..many hear this too many times and continue to prove them wrong x
Thank you so much. I was mis-diagnosed in 2013 and given 2 years. I too decided to prove them wrong. Stayed at a healthy weight, reduced my hours as a midwife to 24 a week. I’ve walked the SW coastal path, Pembrokeshire coastal path and Thames path, very slowly. Only managing 1mph uphill. But I did it and lived it. The sudden deterioration in the last year has knocked me for 6, and being shielded has not helped. I’ve fully retired now as working and needing oxygen wouldn’t have worked!
Now, because of all the lovely support, I intend getting back to walking. My pulsed oxygen is not helping much and SAT’s still drop to 80% when using it, so think I need LTOT. Let those people stare.
Thank you for your post, it’s renewed my determination.
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