PAP

Well I had a single lung transplant 2.5 years ago and doing great .... I went for my check up at newcastle and they say my lung disease has returned 😥 I have pulmonary alveolar proteinosis... it's in my genes which therefore it will progress , we dont know how long it will take but the option of re transplantation is a no go as the disease is genetic and will just keep coming back . Regular lung washes are also a no go as I only have one lung and its deemed extremely dangerous for me . .... so now im in a position of wait and see what happens. I'm devastated I have a 9 year old daughter and I just carnt bear to be leaving her just yet.

[Damon1864 Volunteer]

Hi I'm so sorry you have to deal with that, it must be awful. But please try to stay positive, and enjoy your life and being with your daughter. Love can help us a great deal. Take care of yourself 😊 Bernadette xx

[sassy59]

That’s a horrible diagnosis to have to face ejbid but you’re not going anywhere just yet. Enjoy being with your daughter each and every moment. Xxxxx

[Spacecat1 in reply to sassy59]

So sorry. Enjoy your being with your little girl. In the meantime they may find something that will help. Keep hoping for a good outcome.

[Ne33]

Am sorry to hear this, none of us no when are time is up it maybe be tomorrow it maybe be 20 years from now, enjoy every moment with ur daughter and stay positive, Xx

[hypercat54]

Hi I must admit I had never heard of this so googled it. it does sound a horrible disease and I am so sorry you have it. I will say while there is life there is hope and who knows what treatments might be available in the future?

All you can do is live life for today and build up some beautiful memories with your daughter to sustain her for the future. Sending you hugs. xx

[HungryHufflepuff]

I don't really have anything useful to say, so I'll just send you very best wishes.

[joyce74]

Not good news to hear but you have had to put up with so much to get to where you are now. Hope you get to spend many years with your daughter making the most of your good days🌸

[Dedalus]

That sucks, but stay positive and I hope you have many many more years with your daughter (new things are being discovered every day). Hugs and good wishes x

[Caspiana]

Hello Hidden .

I am so sorry to read your post. I too have a rare lung disease with a poor prognosis and am currently listed for a single lung transplant. I have two girls who are 26 and 22 respectively and everyday I am grateful I got sick after they grew up. So I can only imagine your fear and worry at the thought of not being there for her. I think we worry so much more about our children living without us than about ourselves dying. Having said that , you did write that you are at the moment doing great which is good news. Please keep coming here to share your feelings and worries. It's so easy for us to get isolated and close in on ourselves. I hope you will post often and keep us updated.

Thinking of you,

Cas xx🌳🌻🌼🐞

[Izb1]

Sorry to hear this news ejbid, wish I had a magic wand that I could wave and make things better. Alas, as all the good people on here have stated, new treatments are coming along every day. I feel your worry, having a young child is always a worry, tell her you love her each and every day and have fun with her, these are the things are memories are made of. Its good that you are feeling fine, fingers crossed you stay that way. Keep us updated. Love and hugs x

[Hidden]

G'day ejbid..Not the news any transplantee wants to hear.

I often am asked to reply to issues re lung disease, but rarely do i do so.

I lost my first wife, aged 31 to cancer and last year i lost the love of my life, my darling wife Susan, due to rejection 20 months after a bilateral lung Tx.

I can vividly recall that terrible afternoon when the Dr's told us to prepare for end of life.

I have offered the above information so that you may better understand that i have walked this journey , you now find yourself on, albeit as a carer not the patient.

The thing about PAP is that in some cases remission occurs...and I pray that in your case this happens.

Life, as most of us know has many unexpected hurdles we must get over...I have found that determination and always believing and staying positive are the three assets we have.

Unless you are living with someone you love, who is in this situation, it is pretty hard to understand and comprehend just what they are going thru.

No one knows when it will be our turn, as I found out just five days after Susan passed. My brother died unexpectedly.

I cannot, nor will I give anyone advice as to handle this type of situation, but happy to tell you of our journey.

You are blessed to have your daughter with you..

If I may

This is something I have learned

Never look behind you....You are not going that way

Never look ahead..... You are not there yet

Look around you... This is you, today, embrace it and enjoy every minute.

Miracles do happen...

GOD Bless

[Hidden]

Thankyou for all your kind words and snoopy the dog thankyou very much for telljng your story . I myself am only 34 years old prayer is the only way that I find myself pretty angry with God at times although I shouldntt be as I believe he healed me . Doctors can tell me the scientific facts but I have god on my side .

All the best . .emma

[MtLdy35]

Sorry to hear ejbid. But must stay hopeful & positive everyday. I’ve had several lung issues this year but refuse to give up. I’m researching stem cells & you must too.

[Hidden]

Emma I am so glad you accept "the Father" as HE is the only one who is able to give you the peace you are looking for. Many become angry, and, at times, HE is the target of our frustrations, but HE is also the only one who completely loves us.. John 3.16. GOD loved the world so much that HE gave his son as a ransom for us.

In May 2016 I asked GOD if Susan would get new lungs, as she was slipping rapidly. I awoke at 1.30am that night and was told "Yes she will receive her lungs and the surgery would take 7 hours"

Six weeks later we received "That Call" July 15th.

The surgery took five and a half hours, but the surgeon nicked Susan's artery, causing her to be kept in theatre for another ninety minutes. Total seven hours.

I guess, my message to you is believe in him and always remember ....HE will never abandon you.

If you would like to keep in touch please do so, as I said in previous message, I cannot give you advice but I can relate our journey to you if it will help you.

GOD bless you

Will