I have IPF and was referred for a lung transplant assessment in July by my consultant but have not been contacted by the transplant assessment centre yet.
Do any of the folk who are on the transplant list, or who have been referred, remember how long they had to wait before they were contacted by the lung transplant centre after being referred for an assessment by their consultant?.
Hi Salmo, I'm on the List for QE Birmingham. I was referred by my Lung Consultant September 2015, I had to have an Echocardiogram, X Rays, and lots of Blood tests at my Local Hospital which were then transferred to The QE Transplant Unit for them to assess before deciding if I was a candidate for Transplant and to be notified of a 4 day Assessment at the QE. The QE Contacted me in December 2015 to be admitted for the 4 day Assessment in February 2016. It is not all straight Forward, I had a "Nodule" on my Left Lung, This had to seen to disappear or not Grow, after further X Rays and Bloods, I was put on the List 28th June 2016, A date I will never Forget....Keep on contacting your Doctors/Consultants until you get the news you want..Good Luck Salmo, Stay Positive. XXX Carolina .
ive the same as you seeing my consultant mr henmanze at mannoron 6th nov..im hoping to get in quick..been waitng 12 months....but they are saying if my son does aftercare i be in...this is impression i got...mine on left lung aswell....so i might have too wait a long time....hope not these nodules change..keep in touch i let you know how my visit goes on 6th nov ....im interested now too see.....
Hi Dawniee - thanks for the info. Seems to confirm what Carolina was saying above. Clearly, there have to be a lot of pre-tests even before starting the transplant assessment. Hope you get some good news in November.
Hi Dawn,
Thanks for your reply.
I have been on the List for 16 months now, I have Antibodies that will hold me back unless I get a 100 % Match. I keep Positive with Exercise Programmes, with my Breathe Easy Group, Every Monday, The Gym every Wednesday, I'm due for my 4th P.Rehab, and have my assessment this Thursday. I do everything on Mobile Oxygen even when I go shopping. My Tracking Appointments at the Transplant Hosp. are every three months and so far they have been good enough to keep me on the list. Stay positive and fingers crossed for your 6th November Appointment. Take Care & keep us posted. XXX Carolina.
Many thanks for the info. Really appreciate the detail as it helps explain the waiting time. Obviously from your experience it does take a fairly long time to get to even the assessment stage. I've had a few additional tests done since referral so presumably the transplant centre have been waiting for these results before contacting me. I have one more test scheduled so will contact my consultant after that test. Strange thing has been that my consultant asked me if the transplant centre had been in contact with me yet at my last 2 appointments.
Fingers crossed that you get some good news soon for yourself and once again thanks for the very useful info.
Hi Salmo,
Glad that the info was useful for you. I Feel that these days you have to Push them constantly or you could be waiting around and getting very frustrated. They all have Extreme work schedules and probably appreciate your input. Don't wait too long, Plan ahead for your peace of mind. If you have a Phone Number for the "Transplant Team" give them a call, they are there to help and Very helpful they are, The Nurses are the best , they get things done. Good Luck Hun, Let me know how you get on. XXX Carolina .
Hi Carolina
Thanks again for some more really useful information. I'd agree that you really do need to push things like this as the NHS system is under such pressure with everyone so over worked that it leads to things not getting done as efficiently as they otherwise could be. I've already had an embarrassing futile trip to see a cardiac surgeon and had to explain to him why I was there because he had not been given any information about me and he had to re-schedule the appointment for a few weeks time. I'll make sure I ask him to contact the transplant team, as well as my consultant, with the results of the tests as it seems like it will only add to the delays if they go to my consultant and he has to pass them onto the transplant team.
Will let you know how I get on.
april till oct then tplant in march
as for tests 40 plus blood canulars into heart twice left n rights sides 2 muga scans so many xrays i lost count 5 ecg ultra sound of all torso this said i wld do all again in the blink of an eye and to tell truth its not that bad . if you want to know anything feal free to ask me anything
Hi Sibkev,
The Voice of Experience. Yes, So many Scans, X Rays, canulars in my Neck for the camera to see the Heart & Lungs, (my nails dug into nurses hand on this one)quite painful, ECG's, High Risk Scan. So many Tests, As you say "would do it all again in the blink of an eye! and so would I, Just hope and pray I get my "Gift of Life" Soon. Take Care Hun. xxxxxCarolina.
Hi Sibkev
Thanks for info. Really usefull to get some idea of number of pre-tests that have to be done.
Your experience seems to confirm that wait between referral and assessment is quite long due to the large number of tests that have to be done even before hstarting the transplant assessment. Seems like anything from 6 - 12 months based on replies so far. This is obviously something for anyone with a potentially rapidly progressing disease like IPF to consider and they should get process started early on rather than wait until things may have progressed too far.
oh i think mine going too be a lobetomy as mine been removed via ribs...do you think i will have too have all these tests.....got breathing test in morning first step....mine lungs are very healthy even thou i got nodules and copd...specialist said them in good condition..just these nodules on left lung....,,advice would be so pleasing im bricking it ....11days in hospital..so im so nervous ..,
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