lung transplant

[bubbles8528]

I am a 52 yr old lady with Idiopathic pulmonary fibrosis. (lung disease) My lung capacity at the moment is 63% . My consulant has told me that a lung transplant is my only hope as this disease is life limited to roughly 3 / 5 yrs. I have no option but i am so scared as dont know anyone who has had a transplant . Can anyone help

[Hidden]

Welcome to the forum bubbles8528 I've had no experience of transplants so I can't help you there. But there are people here who can help you who will be along shortly. The important thing is for you to try and keep calm at having received this upsetting news, quite often worry can cause more trouble than the complaint itself. I look forward to hearing more from you.

[skischool]

bubbles,lots of people on this site have a diagnosis of IPF,they will be along soon to reassure you that firstly your consultants diagnosis with regard to lifespan is almost meaningless as it is very individually based and many people are living many,many years after the magic 5 and secondly with a lung capacity of 63% it is probably way to early to even be considered for lung transplant,hope that reassures you a little and wishing you good luck for the future......Skis and scruffy cat x

[Helen6]

Hi Bubbles, I also have IPF and am currently on the transplant list. Like you, I was initially alarmed when my consultant mentioned transplant. I wasn't sure if this was something I wanted to consider. However as my condition deteriorated I realised that it was my only option and at least I was young enough and fit enough for it to be an option for me. Many people don't have the option because of their age, health or weight. It sounds as if you are not at the stage of having to make a decision yet. Your consultant will probably monitor you for a few years and only send you for a transplant assessment when you are in the 'window', i.e. Ill enough to need a transplant but still healthy enough to survive the operation. In the meantime, do some research and talk to the people in this forum who have had a transplant. I found some good videos online which followed people through the whole process. Try not to worry. I found that as time went on it got easier to contemplate a transplant. I don't know how I will feel if I get the call but I do know that it is my only chance.

Best wishes,

Helen

[bubbles8528]

hiya Helen thanx for your reply . Hope u dont mind me asking but what % is yr lung capacity. i just wondered what level it has to be.

[Helen6 in reply to bubbles8528]

Hi Bubbles, my current lung capacity is 38% and I am on oxygen 24/7.

[sibkev]

oioi i had ipf and transplant on the 11032016 anything you need to know ask away the best thing i can say for now is walk 2 miles a day min even if you stop n start a it will streach that 5 years out and b recover after tplant will be so much more easy

[Issma]

Hi, please don't panic, my husband was told told life span after diagnosis with ipf was 6 years and that was in 2006 and he's still here. As others have said, everyone is different. Good luck x

[Mum7452]

Hiya Bubbles 8528. My son 42 has ILD and needs a double lung transplant but has decided to come off the list for a break. He is getting worse with his breathing but even now he still says no. I think you are very brave. My son had "a call within his first week and at that time he was all set to go for it. It did not happen for other reasons. He now say s it was fate. Whatever you decide it has to be your choice. Do not do it for anyone else. I hope you can cope with the waiting. Andy could nt. Good luck. I hope you get a call very soon. I am following you to see your journey. Xxx

[timCHP]

Hi there.

I'm having assessment for a double lung transplant at the moment - I've got one more test to go next week and then I'll find out if I can go on the list.

My lung capacity is at 44% at the moment and I'm 45 years old.

I took a couple of years to drop from lung capacity in the 60% range to the mid 40's now and into the range where it was time to get moving with a transplant.

I can't guess how fast or slowly your fibrosis will progress, but there will be time to get used to the situation you (we!) are in.

The idea of a transplant was very alarming to me at first, but you will find that you will come to know so much more about it and that it becomes less daunting. Search online for stories from people who have had transplants, or read the accounts here.

If and when it becomes time for you to be considered for receiving a transplant, the process is very carefully structured, usually needing at least two assessments and several very detailed and informative chats with doctors, specialist nurses and the transplant co-ordinators. By the end of the process you will feel much more confident.

We are in an unusual position; many people with "terminal" illness have no chance of any cure. Others might have to suffer painful and debilitating treatments that might not work, or which might only delay the inevitable. We have this literal life-line of a transplant - yes, only if we make the list, and then only if a suitable organ becomes available in time - but it is a possibility.

Of course even a successful transplant brings a new set of challenges and can still mean a limited life-span.

But, when the outlook is as frightening as the prognosis for IPF, even knowing that a transplant *might* be possible in the future gives something positive to hope for.

So don't despair - stay informed, ask questions, research your condition, take control eat well, exercise if you can, keep your family and friends close and embrace their support.

Doing each of these things will help you feel healthier and keep you stronger.

Good luck!

[bubbles8528]

Thanx for your reply Tim it really helped . So sorry to hear you have IPF. I really hope u get on transpkant list. No you ARE going to get on it. Im just feelin a little anxious and scared. Ive bn to IPF meetings but its not for me so its nice to speak to someone that is going through IPF as at the meetings couldnt talk as no one was offered a transplant as they were to old which is wrong and i felt uncomfortable that i might . Keep me informed how your are getting on and when u are accepted .

Thanx