Good Morning Everyone
quick question I need to ask, my husband informed by the consultant that he has only 15% lungs are working or may be 15% gas I am not sure what they meant and he has only 6 months to live
anyone out there who has 6 months to live or they past that D day
also we did not travel to china for stem cell treatment due to his lung capacity not suitable to treatment
please advice who are in same situation
I am sorry that I can't help you with your question, but the British Lung Foundation have a helpline which is available for UK residents.
It may help you to speak to someone about your concerns.
03000 030 555.
Thinking of you both in such a difficult situation.
thank you so much
I have had 10% lung function for two years and am still going.
thank you for your reply I am so pleased to hear you are still live keep enjoying. you have made my day
do you have special diet ? just wondered
you have put smile on my face if you were any where near me I would have given you a big hug
Hi sorry to hear about your husband my husband was given 2 months and he died in 9 weeks they were spot on with their times just enjoy everyday and tell him everyday that you love him
Best wishes to you both
Valxx
I was given 6 to 12 months to live last September/October so, so far I am still here and hope to be for a while yet. My lung capacity is down to 19% and the hospital has said there is nothing more they can do for me, I have a palliative nurse but have had no need to see her for over 6 months as fingers crossed I am getting far less infections now and with common sense and carers who I pay to come in 3 times a day I seem to be stable for the moment - about all we can hope. So no need to give up the ghost yet - excuse pun - diagnosis etc. is not an exact science. Good luck to your husband and you take care xxx
God is our saviour lets hope every thing goes well for who ever suffering of any kind of disease and prayer for all
I was told that and it has been almost 19 months now, still alive!
keep it up may god gives you even more years to come
I owe it all to God and the determination of my second eldest son who stayed with me continuously for three months and then had me moved to a different hospital.
asfaan_abs
Apologies for very late reply to your post. Consultants can be wrong. I was diagnosed with severe emphysema & bone marrow cancer in December 2015 and given about 18months. I'm still here huffing & puffing and researching stem cell treatments. Unfortunately don't ever get far, as soon as I tell them I have a cancer they run. Keeps me going tho'.
I hope the consultant is wrong again, take care for both of you.
IKeith
thank you for your reassurance and I hope to god that you are right every day I think about it I am going out of my mind,
I hope that you get better and many more years added on your life and with good health
asfaan_abs
Thank you for your response, it's difficult but try not to go out of your mind, worry transfers and it won't do your other half any good either. Always look on the bright side it's the only way don't get down.
Unfortunately I won't get any better unless I get the magic stem cell treatment.
Good fortune to you both.
IKeith
thank you
this magic stem cell does it works? there are lots of trial around the world but not in UK, Russia china and other part of the world are doing clinical trial
asfaan_abs
Stem cell treatments are still in the trial stage, please be careful of anything outside of Europe or USA. It may not be magic but for some it seems to work. You are right there is little in the UK. but there are clinics that do lung coils/valves & lung reduction surgery & some are around the edges of stem cell. A Dr Chung at Royal Brompton London has some experience.
There are a few companies that form lists of trials, try WhatClinic.com for Europe (Germany) & Cinical Trials, or direct Lung Institute Tampa USA. They are all a distance away but may be useful. Keep away from Serbia (Swiss Medica) I think they just want your money. Read reviews. At this stage if your partner is fit enough to travel try these sites.
I wish you well
IKeith
keith
than you for your information, someone said Thailand is also good
asfaan_abs
Your right they do stem cell treatment over there, they tend to be very expensive. Haven't considered Thailand partly due to price partly due to not being sure about the ethics. Explore the possibility but look at the reviews and see if you can get some patient feedback. Please do as many background checks you can.
The Lung institute in Tampa have recently carried out the treatment to a member of this forum who I keep loosely in contact. He is progressing but slowly in the right direction, so it appears to be working for him.
If your partner is free of cancer most clinics will consider the case.
IKeith
Yes he is free from cancer, he only suffers from IPF, and OFVEV drugs not working on him he is on oxygen. When he is relaxing his oxy level is 92 that's without oxygen its only when he walks or go to bathroom it drops, hands turns blue
I heard about Tampa professor Lobo and his team. They are so forward in trail i just hope that Britain to follow
till then chin up and carry on
Try not to even think about it. I was given 3 years to live - 11 years ago! 
asfaan_abs
See response from Toci, consultants can be wrong sometimes by miles that should be encouraging. Think positive.
Meanwhile do try Dr Chung at Royal Bromton, he's not as forward as professor Lobo but he has done work in that area and it's in the UK. There are other London Hospitals, mainly the teaching ones that tend to lead the way in UK. There are others up country, a member from the forum was recently referred but can't remember the contact, try BLF they may recall.
IKeith
I checked on clinicaltrial.gov nothing comes up for UK, only trail going is OFVEV drugs
I am just so confused with all this consultant who does not give you any information at all, having to read on Google finding information
I am going to have to break my saving and take him to Private treatment
but i will check this Dr Chung at Royal Brampton
my husband was seen by Fellow Maher when first Diagnosed
Thank you so much
take care
6 months recovering from Covid Pneumonia - Back to work & Jelly legs!
Keep on the tablets or go for being Pacemaker Dependent with dodgy lungs
Went to see Consultant to find out if anything could help me.
At last
Treatment for SLE with severe lung disease (shrunken lung syndrome) besides rituximab.
