I have been living with IPF for 5 years now and as the end approaches, no hope of a transplant after being on the list for nearly 3 years and advised to enjoy the time I have left. It's only now that I think I should tell my family, not wife she's fully aware, how I feel what my fears, and they are many and my wishes are. But I'm not looking for sympathy or sorrow but rather an understanding. I wonder how much detail to go into, obviously my wife knows my wishes but should I tell my sons and extended family. Four years ago I was told without a transplant I only had two years if I was lucky, I'm still here. At that time I did tell my sons and now wish with all my heart I hadn't. Why put two young men on the threshold of life through that? One took to worrying and the other just blocked It out and hoped it wasn't true, it was neither fair or necessary and I bitterly regret it. They could see I wasn't well and both being in their twenties were able to understand more as time went on without the dramatics.
At present I'm still able to get out and about, weather permitting, and enjoy trips out. We have a caravan and still hope to be able to use it this summer, my poor wife is getting used to doing most of the setting up now and as with everything else she has to do never complains.
I apologize If the above seems self centered but sometimes things get a bit heavy and I thought writing it down almost anomalously would help. And I think it has.
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Baldie
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Hello Baldie, So sorry to hear your situation, my heart goes out to you and your family and I hope you are able to enjoy your caravan this summer. Due to my ill health we decided to sell our tourer last year and buy a static, best thing we ever did, all the family loves it and we are spending our first weekend of the season here today. I am sure you will make the right decision with regard to your sons and family. My thoughts are with you and your family at this stressful and sad time. You must be a very strong person to have dealt with this illness for so long and then not to get what you were hoping for with a transplant. I am sure your strength will help you make the right decisions in the time to come.
I am so glad that it has helped you writing this and that you don't mind me replying, as I felt I needed to say something.
Hi Baldie, it does not seem in the slightest bit selfish - all of us here have spent some time considering our position, if that's self-centred then how natural is that. You strike me as an admirable and courageous man.
Our family friends and loved ones see how we cope and fortunately don't feel the condition.
We, in our turn must see them as they watch us grow more frail and are unable to support them except in that they can see us smile, hear us laugh or feel the warmth of a caress.
You say you wish you hadn't told them, let that go what's gone is gone. Remember the things that brought and maybe still can bring a smile.
Writing things down helps me too, in so many ways, we are none of us alone.
I don't think you are being selfish in fact far from it. I personally think it is more selfish not to tell your family. If they know it all they can enjoy your company without later on saying I wish and they can then treasure all the memories they will be making.
This site provides a release valve and you can let your frustrations show here and know no one will be judging you because we are nearly all in the same boat, some of us more Titanic than QE II but we are all at sea
What a moving post. You are not being selfish and only you can decide whether to say anything, or not really. What does your wife think? She may see things from a different perspective.
What a courageous blog you've done Baldie, I admire you greatly for that.
I'm in agreement with others who've stressed that you're not being selfish at all. I do think though that you should maybe take heed of jandan's words and tell your family the current situation. They may want this chance to tell you things they hadn't thought of before, but the final decision is yours.
We here will be thinking of you and please, whenever this feeling grabs you again, do come back to us ... there is no-one better at emotional support and cyber-hugging than we are
God bless..
xx
Oh Baldie I am so sorry to hear that. I wish there was something I could say or do to help but I guess not. I can only reiterate what others have said and I think it would be easier for your loved ones to be told the truth in the long run. But you are the only one who can decide that. Maybe you can do it in a way which leaves the obvious unsaid. Maybe that would help them to understand better. I don't know.
Please carry on coming here. We are all here for you anytime. Sometimes getting it off your chest helps.
Lots of HUGS and KISSES and I will be thinking of you.
Bev xxx
So sorry to hear of your dilemma Baldie.Of course you are not selfish, but what was done,cant be undone! Maybe you should sit down with your wife,and see what her wishes are?? 2 heads are better than 1!
As was said, we are always here, if you need to ventilate,all best wishes to you,& your wife,
Hello Baldie, I thought your blog was good,you should always be able to speak your mind with your family and friends here, and writing things down always helps I think.I'm sorry you have had to wait invain for a transplant,how upsetting that must have been for you and your family, anytime you need to air your thoughts we are here to listen and support you.love Carol x
I would not tell my son, i understand why you did previously but as you have found, no-one really knows how long they have. I personally know three people who were told they had months to live and two are still with us seven years later. Your wife needs to know so she will understand your moods and take your illness into account. Unfortunately my husband just refuses to admit there is anything wrong with me which makes my life difficult sometimes. I wish you the best, enjoy the little things and try to keep busy even if it's just with your hands.
i wish you all the best and will be thinking of you.
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