How do you get considered for a lung transplant?

I am stage 4 copd but not yet on oxygen.

How do you go about being considered for a lung teansplant?

Does anyone know the criteria?

I am in Scotland

Hugh

[hypercat54]

Ask your doctor or consultant. Not everyone is suitable for a transplant and sometimes age comes into it too. x

[newlands]

I think Tam might reply to this I think he is hoping for a transplant at Newcastle and he lives in Scotland

[Hacienda]

Hi Hugh, See my Comments to Queenbean a moment ago, it may help, with reference to Freeman in Newcastle, Also Tam will know more. Best Wishes. xxxx

[Caspiana]

Hi Hidden . 👋

Your doctor needs to refer you. 1. You need to be poorly enough , without any hope of getting better 2. You have to be poorly, yet well enough with no other underlying conditions that could possibly jeopardize the new lungs, 3. You have to be physically strong enough since a transplant is a major operation. 4. Mental stability is also taken into consideration. 5. Age. The cut off age in Japan is 60, in the States some centres accept patients into their 70s. I don't know about the U.K.

Do ask your doctor. And as everyone has said , I think Tam aberdeenman may be able to help.

Take good care,

Cas xx 🙋

P.S. You will also need caregivers for when you are discharged. You won't be up and fully functioning for awhile.

[Zenga]

Hi Hugh,

Sorry your condition is so bad - surgery is a drastic move!

About 3 yrs ago my condition was very bad too, I was pretty desperate with extreme COPD caused by growths on my lungs that docs could not diagnose. It was not cancer, but they wanted to cut one lung out just to study the condition! I was told the op was major and extremely risky and would not necessarily improve my breathing. I was amazed at the stupidity of this and of course refused!!!

I instead began breathing exercises, steaming with salt water, and most importantly Serrapeptase! Look it up - It's natural and does not effect any medication - I cannot recommend it highly enough! (Get it online or at Holland & Barrett).

I am only on inhalers now and can walk and even cycle too. My growths have reduced and I am extremely glad I didn't let them take my lung out.

I found lots of help online - youtube etc, really hope you can find some relief too.

Take Care

Joe

[Dedalus]

I was refused one by a consultant at The Royal Brompton recently because "they only considered people who would be expected to get 10 years or more benefit from the transplanted lung(s)"! I'm 69, have CKD (only one kidney), am on oxygen for exertion only, but exercise and lead a full life; Still a bit gobsmacked that this consultant doesn't expect me to live 10 years (I didn't see a crystal ball in his office)!!! Good luck with your referral x

[Sharp5Flat13]

I’m stage 4 as well, firefly3245. My case was to be presented to the board to go on transplant waiting list, but unfortunately, the urologist did a cystoscopy to check for BPH and discovered some urinary bladder tumors. They looked superficial, yet a couple were malignant. Pulmologist told me you have to be cancer free/smoke free for two years before they’ll put you on the list. Body Mass Index (BMI) is another factor they look at. You can’t be under or overweight.

[Hidden]

Thank you all for taking time to reply to me.

I have learned a lot from you all and it is clear I need to learn a lot more about this procedure and how to progress with it, if that is my findings.

Thank you.

Hugh

[TwinklingStar]

I am age 62 now. I was diagnosed with Interstitial Lung Disease at age 57 (2013). My Consultants told me in 2013 that I would not be eligible for a double lung transplant because:

1. I have Ehlers-Danlos Syndrome (EDS) which causes me to be extremely fragile

2. At age 18 I was given 6 pints of blood and developed what was known as Post Transfusion Hepatitis which I knew as Non A, Non B Hepatitis. It took me years to get the diagnosis confirmed. I was eventually given a formal diagnosis of Hepatitis C around 25 years after being infected. I have had Hep C for 44 years so I now have Cirrhosis of the liver. The breathing problems and lung damage are highly likely to have been caused by the Hepatitis C. I am unable to consider treatment for the Hep C because I was also infected with Hepatitis B (Hep B self cleared but can be reactivated by the current treatments for Hep C) and because the EDS causes me to be extremely fragile and because I have breathing problems.

Verdict:

So because I have EDS, am Hepatitis C positive, have Cirrhosis of the Liver, I cannot be considered for a double lung transplant. I can't imagine how I would feel if I didn't have EDS. Knowing how much damage I have already suffered having what would normally be considered minor procedures I know that I would be highly unlikely to survive. Another issue is that I have serious adverse reactions to most medications and may not even be able to tolerate the anti rejection medications.

Up until 2013 my weight was normal. In 2013 I was given prednisolone and I had two life threatening extreme adverse reactions to it. It caused me to develop Secondary Cushing's Syndrome and I put on 5 stone in weight in just three weeks! I have been battling to get rid of this extra weight for the last 5 years. I was also put on oxygen in 2013.

To keep as well as possible I exercise regularly but can only do non weight bearing exercise. I avoid all processed foods. I avoid sugar including foods with a high natural sugar content. I avoid all food from the Deadly Nightshade family. I don't eat any biscuits, bread, crisps, cakes, potatoes, etc. etc.

I never drink any alcohol and never smoke. I have only consumed alcohol on two occasions both times prior to diagnosis of Hepatitis C. I have to make sure I get plenty of sleep. When I am unable to sleep my health deteriorates rapidly. I avoid all medications as much as possible but I do have very high levels of pain so I have to regularly take pain meds. For decades I took various supplements. When I developed Cirrhosis I decided I should stop the supplements because the liver has to be working properly to process them. I am prescribed Vitamin D, Magnesium and Vitamin C so I take these. So other than these I try to manage on my pain killers and one anti-histamine. I drink at least 2 litres of water each day. I have other medication I can take when necessary but I try to keep to a minimum. I also use distraction techniques to help me. I also love singing and am a member of Smule where I sing regularly to help my lungs and breathing.

Stay strong everyone.

Love from Twinkling Star Xxx

[Sharp5Flat13 in reply to TwinklingStar]

5 stone in 3 weeks...? Wow!

[TwinklingStar in reply to Sharp5Flat13]

Yes - it was pretty scarey! The Consultant said I had developed "Secondary Cushing's Syndrome" ( I think that is what it's called). Goodness knows what I will do if my lungs begin to deteriorate. Probably just have to stay breathless and manage it. It seems there is nothing else - other than the Oxygen which does help.

Stay strong.

Best wishes from

Twinkling Star

[Shellc]

It would normally be suggested to you by your consultant , it was to me . I had all the tests but to cut a long story short I had high antibodies that would have rejected and new lungs . Having new lungs is not as easy as it sounds , he can take months to recover and then still not be brilliant . Your kinda swapping one set of docs fir another . Don’t get me wrong some people sail through it but it’s not like having a heart transport . The lungs are lot more difficult . You have really work st Keeing healthy and fir after