IPF issues.

[Sooki]

IPF and Baggy Oesophagus ,does anyone know or have baggy Oesophagus ,went for my transplant interview last week,was turned down because of what they called baggy Oesophagus ,I was absolutely she'll shocked,last hope gone.I Have researched it on the net ,difficult to find much info with regard to the IPF and baggy oesophagus,,so any out there with IPF come across this.😒

[Hidden]

Hi I assume the talking about acid reflux damaging new lungs if you was to have it .

ncbi.nlm.nih.gov/pmc/articl...

[Sooki in reply to Hidden]

They say my baggy Oesophagus would not support new lungs,considering I've had 3 cat scans in the last 2 years I don't know why this wasn't picked up sooner,I am going to investigate if something can be done,I was too upset last week to think about questions,I will fight on,I do not suffer any symptoms,I take lansoprozole as does everyone else I know with IPF as reflux is a known symptom.thanks for the article .

[jenss]

Dear Sooki, I am so sorry to hear this development. I am sure you would be gutted- is there a chance to see if they take a different view of this at another transplant centre? No, I have not come across baggy oesophagus with or without IPF. How are you going with the pirfenidone? Take care love, best wishesxxx

[Sooki in reply to jenss]

Hi Jenss,hope you are keeping well,I am on 6 pirfenidone,was having problems with 9. I am thinking of trying to go up to 9 again after that bad news,as there is no other medication.I go back to Papworth on the 23 rd of this month and will be asking my consultant about it all,it makes you wonder what else is going on they don't tell you about,I had no inkling,I do not suffer from heartburn or reflux,I was aware I had a small hernia as I had read that in my notes.An American sent a message saying they should put a feeding tube in after the transplant until the graft takes,I am going to fight on,can't just sit back and wait to die,have already lost 2 friends this year to this shitty disease both younger than me and did not appear to be very ill,it's such an unpredictable disease,sorry for the rant,I am in a our touring caravan in Norfolk even the weather is being unkind,wet today.How are you doing.(Linda).

[jenss in reply to Sooki]

Great that you will follow up with them on the 23rd. I hope they will be able to discuss the details of some options or suggestions they have with you. I am sure you know how they say to make sure you eat enough (some protein and fat) when taking the pirfenidone....I saw your note in AS's post about the touring in the caravan- that sounds like fun and should be very enjoyable for you all. I am sure the weather will pick up..... and anyway there is no bad weather only wrong clothing, right? I am keeping very well thanks for asking. Take care and talk soon, xxx

[DozyDormouse]

Oh my poor girl. Never heard of baggy oesophagus. Is that the same as wrong type of leaves on track? I mean just another excuse. Let's hope something can be done to fix it. Take care

love Dozy ☺🐀 x

[Sooki]

It is a real condition but never knew I had it,will try to find out more about it.Back at Papworth in a couple of weeks,touring in the caravan at the moment around Norfolk,then will take the van back to Cambridge, for Papworth appointment hopefully then on to Dorset,luckily I have a POC so I can get out and about,and a scooter,not used it yet trying to keep on my feet.Hope you have a good holiday too,where of you off to,my 2 dogs love the caravan they get to sleep on the bed.😀.Sooki