Listing query for Lung Transplants England

[flo1]

Can I ask is there still a hold on listing in England, for Lung Transplants? I have been informed lately that the 'super urgent, and urgent' are now lifted and its business as usual, as we all had a window from Covid, bit perplexed as I know of a few patients who fit normal criteria, not yet listed and still under review?.., not yet listed. Obviously still challenging times ahead with the approach of Winter and Covid prominent again in circulation...

Would like to hear more and especially off anyone listed outside the 3-month mortality ..thanks in advance!

[Beachballs]

Hi Flo

was being considered for a double lung transplant up until last week when the transplant team said I would not survive the operation due to my weight . I have lost 7lbs but am struggling . I have a small appetite and this has caused me problems with taking Nintedanib as you need to eat to absorb the drug, so catch 22 for me. I was disappointed but understood.

But what caught my attention with your post was the sentence’ outside the three month mortality’ what does that mean ?

I hope you get some updated information soon and wish you all best.

Mary x

[flo1 in reply to Beachballs]

Thanks for response Mary. Sorry to hear your unable to list. I assume your in USA? only I don't recognise the medication. I guess over there its a lot different to over here right now? Only guessing! They put a Super Urgent and Urgent only on the criteria during the outbreak here that means (3 month mortality only going through to operation) in other words if you have less than 3 months to live, most of us are listed with a good enough gap and timing is right...mostly they get everyone on a list and give themselves and you a window usual time frame is about 2 yrs to loss of life ..so a lot changed, and all the appointments got deferred including mine, I was up for assessment April time so I got a new appointment for Oct, only we try and avoid that being lung patients as bug season (general) starts and I was hoping they would contact me in Summer when this covid stuff seemed to subside a little (at least here in England) looks like I will be rescheduling mine as I am 4 and half hours away from the centre and the assessment booked is all day tests, total 9 hours drive. I can't and will not risk a overnight..this is basically the choices covid has put on us, and its a very big awful mess outside of it..!

[flo1 in reply to flo1]

Just a little more of a tip ..we all struggle with stage 4 to keep weight on, its part of the process of energy required to breathe and it burns cals! We got lucky there I guess ..but joking apart its vital you keep and maintain weight. I eat a lot of what I fancy and I eat healthy too but anything you really love will encourage you to eat and smaller portions with no cal counting is the way to go..I have been stage 4 since being diagnosed that was 14 yrs ago they gave me 2 yrs to live 11 yrs ago ..so I missed a tx then, I pushed and pushed and refused to give up by healthy lifestyle choices I finally made and walking daily with doggies..my lifeline. We can do remarkable things so don't feel like its over ..they tell us a lot keep going, its never over until we allow it to overwhelm us. I am sure you will be okay to list soon, or I hope so. I have a genetic disease so I was born this way its a sister disease to CF ..Alpha One Antitrypsin Deficency and spent my whole life healthy until aged 45 I could not breathe..It was hard going from healthy to invalid but I have conquered a lot emotionally and physically and lived to bring encouregment to those newly diagnosed. I was being assessed because they like to do the TX ideally in UK pre 60 ...many TX centres refuse you over that age here but some go to 65 and you have to be really fit to go through after 60 which I am due to dedicated excercise regime..had I not been this fit I would of lost hope of going through as I hit the 60 next year..hopefully I make this Winter and make the assessment next Spring or early Summer which are better times for lung patients even without the horrors of covid 19..x

[Beachballs in reply to flo1]

Thank you for your lovely , caring and informative reply . Yes , I am in the Uk and the drug I referred to is fairly new (2016 I believe ) and it helps slow the Fibrosis down, but as I was misdiagnosed, I did not go on it until November 2019. I take it twice a day in the middle of a meal , and hoping I will stabilise having deteriorated in January and then again in July.It was very encouraging to hear you have been in stage 4 for as long as you have , it sounds like everything is moving in the right direction for you re: transplant and I look forward to following your progress and hope things get back on track soon re Covid. Good luck and warmest wishes for your journey to transplant.xx

[flo1 in reply to Beachballs]

So sorry to hear your misdiagnosis. It unfortunately happens to a lot of lung patients it certainly happens to alpha's. I was lucky in that respect, my diagnosis came within a year of being seen, I have a lot of patients not as fortunate as myself and misdiagnosed with asthma and such all the while having alpha. Some 20 yrs on that side, we get in many cases time, I don't know on fibrosis but its aggressive I believe? Good to hear they at least tried a drug, here in UK and mostly everyone with aatd gets refused rights to birth test our only insurance to a life extended is just that and we have fought years for others to have at least that right! As yet its still unattaninable due to genetic discrimination bills not getting passed properly in USA we have many with aatd in America...and that is the crux of our chance of better survival rates ..its unimaginable what the condition can and does do if we are not informed, and the reduction of life years it causes to the thousands of sufferers..including myself. I believe we do a lot for ourselves out of just surviving what we have and a mode we naturally go into, human race is equipped that way but its unfortunate we get little to no relief with sick lungs only oxygen and of course inhalers which cover benefit to us in marginal capacity the advancement of lung and the condtions we all occur needs dedicated driven treatments in today's era and I do believe they exist without going through the affair of transplanation but there is business in all diseases and I guess we are all paying the price of commodity in health care today, which is beyond sad..I learned a great deal about sick and the sick business since being diagnosed some good some not so good...I hope you get to where you need to be soon too..Covid is just another bug bear for millions of lung patients all be it a heinous add, we are still equipped to deal with and lock down better than most through our awareness of Seasons and changes brought, we mostly have no choice but to face them at low levels stage 4 where we are open to icreased infections, so I see this currently as extension of flu season, all be it a very difficult phase for everyone..x Its nice to get to know you can I ask your age?

[Beachballs in reply to flo1]

Hi Flo1

Thank you for your reply , really impressed with your knowledge and thank you for sharing. I am 65 coming up to 66 , so right at the cut off point, although when the transplant was first suggested I was 64 . Luckily I don’t have too much wrong with me apart from this and that was another reason for being considered and I count my blessings in that respect. I hope you get your transplant sooner rather than later . Warmest wishes Mxx

[flo1 in reply to Beachballs]

I am equally impressed with you! That gives me encourgement, I always maintained that my 'cut off point' would be 60!! Wow, so good to know others thinking and going for it after this age..I read today that Japan cuts off on double lung tx at 55!!! omg..its insane, they outline they have reasons about only using donors due to body being intack going over the other side..many end up coming West. I think its a numbers game in truth you are only as old as you feel and I certainly still don't feel my age, but guess we need a lot more time recovering stands to reason, still you sound a lot like me in that you have kept well enough to go through over the time frame so many even in UK outline..my Consultant did mention that I was ideal due to the input of forever excercise ..least it feels that way! x So very encouraging, many ..many thanks, its cheered me up no end today x

[flo1 in reply to flo1]

Just thought I would mention not to loose hope, as a very good and dear alpha friend of mine in Canada got listed a couple of months back she is 67!! ..I know they go way beyond us and so do the USA..I think that in itself is worth noting as if we keep us well and fit then its really numbers game nothing more or less, so hope you put that weight on get a chocky cake pile up ..we can well afford it, I eat what I want and eat well but I love treats! ..glad I do..x