That is really important to do. Hard, but important. ... View more

Why? It's not much of a discussion! H ... View more

33% eGFR is relatively good. I had a similar situation to you when my nephrologist crossed out 'disease' and wrote 'failure' after the word kidney on a pathology report. I was about 15% then. But...BUT...I did not start dialysis until four years later when my eGFR had dropped to 11%. Every body is different and lifestyle, stress, diet and age are all factors. And of course I am not a medico. But based just on what you have written I would say do kidney healthy things (you know what they are) and keep that 33% function as long as you can. Paris sounds good to me. There's no reason to think it won't happen. H ... View more

Thanks for mentioning the article by Atul Gawande, Deb. Sounds interesting. I like the reply you gave to Richard as well. It makes me realise that the courage is in the choosing. And that's what you have done. I find writing always adds something to life, something which I could not get any other way. Cheers. H ... View more

That's a nice way of putting it! Thanks. ... View more

Good for you Deb. I followed your thinking here very easily. You might want to save this post and print it off as a Word document so you can have it 'in your back pocket' when you are spending this important time with your family. Just a thought. Again, good on you for being so clear about life. All the best. H ... View more

...or we can choose not to ignore it and reply... I am sure there is a huge adjustment to make if you look different, and people saying 'It's okay' does not help one little bit. I gather there are lots of supports and advice for the 'looking good' part of recovery, maybe you could follow them up? And maybe plastic surgery is a real consideration. Just from what you have written I think if I were in your position I would be getting cosmetic surgery done as a priority. I would not think of myself as vain or self-pitying in doing that. I would see it as part of the treatment, which in fact makes 'cosmetic' the wrong word. Fine with me. Perhaps no photos for a while? Is it happening because everyone is wanting to be seen as bending over backwards to accommodate you? If so, tell them what you want and see how accommodating they are then. I'm not saying they won't, I just get the feeling you didn't choose the photos. I may be way off. if so, then tell me. H ... View more

Maybe get in touch with the super fund, or his super fund. There are things they can do that can help. Also, does he have any private cover? If so, call them and ask them to manage the paperwork. I did that and it worked a treat. Maybe a social worker with a NGO such as Brotherhood or Anglicare can help negotiate the paperwork and also refer him for financial assitance. I appreciate he is likely to be a proud man, but there are people who are experienced in working around things. H ... View more

Are you taking dexamethasone? Or another drug that could be keeping you buzzing? I realised after a few months or so that the dex was stopping me sleeping properly. I talked to my oncologist and we reduced the dose. It might be a drug doing it. Talk to the scientists about that and don't think it's because you are not coping. If you are posting here you are coping! H ... View more