Hi all of my fellow Lingoes, as some of you will know that I have been diagnosed with advanced interstitial pulmonary fibrosis and I have been given a few months to live, however I am still very positive, so no problems there, I was visited by the McMillan nurses and what can I say, Vicky the first that came to see me, started to put things in place, re the Palliative care, the next day, I had a visit from the breathing physiotherapist, with advice and an invitation to join the class, over a four week course. I was next visited by the end of life care nurse, who explained everything that I needed to know, even explaining the aftercare for my family, like counselling for my wife and our grand children, I did not know such great help was out there, and all taken place in a matter of days from first contact.
I am so so pleased, so much that it felt like a great weight had been lifted from my shoulders.
I have learnt so much, my thanks
and heart go out to these wonderful and thoughtful nurses
Sorry for going on so much, I just wanted to put it out there.
Ernie
Written by
Oldspark
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Well Ernie, you have decided to share a very difficult time of your life with us. However, it is noticeable your sense of calm is also filtering through. Having all the right people around has obviously played a vital part in helping you come to terms with something we will all experience one day. Having this amazing support is something that must be very reassuring for you and your family.
The contents of your post will play a huge part in allowing your family and friends to be confident you are getting the best possible care. You have also mentioned a huge load has been lifted from your shoulders knowing everything has been taken care of. Your sense of calm and acceptance is truly magnificent .
I woduld like to say I found your post very uplifting and would like to thank you for sharing your feelings with us in such a inspiring way.
Please stay in touch and let us know how you are. With kind regards and best wishes to you and your family.
Thank you so much Ernie (we have a little Ernie in the farmhouse opposite us, he is only a few months old, love the resurrections of the old names). What a wonderful post and I am so glad you have found the help you need.
So nice to hear from you. I am so pleased there is such a good support system in place for you and your family. If like you wish you peace and many , many more happy times with your family. Please do let us know how you are doing. Take care.
Oh Ernie, thank you for sharing your story. I feel so moved by your sense of calm. And it is wonderful to learn of the amazing support and care you area receiving and also what is available for your wife and family. Love and hugs to you and your family. God bless and be with you all.
Bless you dreadful news but your positive way you are handling it is a breath of fresh air keep that going your amazing I have last stage emphysemia and recently was told by accident I am in heart failure took me back a bit being as my doctor hadn't said jack !!!!!! glad u are getting excellent help wish I was i could do with some of your positive thoughts good luck to you turn those months into years 😊
Hi to you and everyone else who have supported my post.
Yes I do feel blessed, in as much as my family and friends, support me and my beliefs and also with help from those incredible nurses. I wish I could say that I am a true Christian, but I am not a fully paid up member, as I still curse and swear and drink, (not so much now)
By thinking positive, it does enable me to cope with everyday things, like dressing, and moving about the house.
God bless to you all, and try not to look on the negative side, my positive attitude starts with waking up in the morning, and that is a bonus. Build from that, and the end does not seem so bad. Do not get me wrong, I still have my down days, especially when it's wet and miserable outside.
So sorry to hear you have such a dreadful disease. I am thankful you have such good people who are taking great care of you and your family.❤ And as being a good Christian, no worries. God welcomes us and Loves us just the way we are. The only thing we have to do is accept Jesus as our Savior, ask for for forgiveness and we are set. God is a merciful God and He sees Jesus in us. He is not worrying about our cursing, or drinking. So no worries. I will be praying over you and your family that you continue to have peace and comfort on your journey and I will also be praying for healing for you and comfort and peace for your family ❤ Sincerly, Colleen.
Ernie,my Mum lives in Upminster are you near there? Lots of love to you and your family from an Essex girl, no white stilletos now though, too old and wobbly. Your positive attitude is what I'd expect from an Essex boy!
I admire your courage and resolve, Ernie. Going through a particularly bad patch myself at present and need to see a specialist. Hope I find the same mind set that your managing in a worst case scenario. Good luck to you and your family
Hello Ernie, thank you very much for your post. It is so good to know you are being cherished and looked after. You say: I am at peace with my self and making my peace with God." May God bless you. I too will be praying for you.
I have pulmonary sarcoidodis which is a similar condition, and although I have had it for 40 years I hope I will be here for some time yet. Can I ask please, did McMillan nurses arrange all the visits etc, or were some arranged by your hospital. Also your post is headed St Luke's Hospice, are you in the hospice and if so did they arrange some of the help facilities? kind regards from Christine
I am so grateful for all the replies that I have been sent, but to answer your questions, I was initially refered by the hospital, and the next thing was a phone call from the Palliative care team at St Luke's hospice, they used to be called McMillan nurses, just a name change, just to do with funding??
So since the first phone call from St Luke's I have been under their watchful eye.
I have said that I do not want to die in a home or Hospital, unless it it is beyond the scope of home care. So I am still able to get up and wash my self, I need help from my wife to have a shower and I have adapted, a concentrator hose so that I can get in an out of the shower.
My thoughts and prayers are with you Oldspark, what a wonderful post that you feel a weight has been lifted is so good to hear and your postitive attitude is so uplifting, thank you for the update x
Well it’s good knowing my lacrimal glands are still working. Seriously Ernie, you brought a tear to my eye. So glad you have the McMillan nurses to guarantee safe passage.
Thank you Oldspark; a good friend has just been diagnosed with PF and I haven't known what to do or how to help. Only yesterday she was telling me how she and her husband are receiving amazing support and how much more at peace she feels as a result; your post has helped me see that I too can help, by caring and by being there for both her and her family. God bless, and take care on the journey so many of our friends and family have taken, and that we all too must take.
I do so agree Ernie, they do a wonderful job also those of other similar organisations. I can only wish you all my very best wishes on this end stage of your journey, with such good
help I hope you will remain positive. Sincere good wishes.
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