Inspiration

[Keithtim10]

I thought I would like to share the following and welcome people's comments.I briefly was diagnosed with ANCA (formerly Wegeners) Vasculitis which has left me with CKD Stage 3 in 2015 and since then I have been through numerous medications including Plasma Exchange and Chemo,Rituximab and various drugs.I am in remission now and sticking to a diet to look after my Kidneys.I have just finished reading a book Alicia -My Battle with Wegeners Disease and I have to say what an inspiration this woman is considering what she has gone through on her journey.I am sure some of you may have read this book but for those who have not I recommend it.I do feel though it gives food for thought in that the disease is in many ways like a Cancer in that it can not be cured and it can attack anywhere in your body and at anytime with serious consequences.I realise that we who are affected by this and all the other variants of the disease may feel that sometimes there is a lack of understanding in the wider world of what the disease can do to people.I also believe strongly that the more we talk about it and spread the word a better understanding could be brought about.Would like to hear other members thoughts and comments about the subject.

[DevonLottie]

Hi Keith. I've had gpa (wegeners) for nearly 20 years and agree with you that it's important to use every opportunity to educate people - particularly in the medical field - in the disease. If talking to just one medical professional saves a life in the future it is worth it. I find that the general public just don't understand a chronic condition until they get one!

[Keithtim10 in reply to DevonLottie]

Many thanks Lottie hope a lot can agree with us.Take care

[JGK99]

I whole heartedly agree Keith - people don’t understand how this disease can affect our everyday lives - haven’t read the book but now plan to do so...

[Keithtim10 in reply to JGK99]

Hi JGK99 many thanks for your comments glad there are people uot there with same or similar thoughts.Hope you enjoy the book I downloaded it on kindle for info.

[tisme2]

Hi Keith. I wont say "welcome" to Health Unlocked because none of us really wanted, or thought one day we would need to join this group, but have to say what a help it is that its available to us. I too have ANCA associated MPA (Wegeners) was diagnosed in 2011 and now have CKD stage 3A. I consider myself luckier that most as I now am pain free and have been taking Mycophenolate now for the last 5 years which seems to be working. I have asked my doctor about whether there is a diet I should consider that may help but he doesn't think there is anything specific ? but always say, avoid Stressful situations he believes that it could be a trigger. All the best wish you well.

[Keithtim10]

Hi tisme good to hear from you but feel the same about nobody wants this but I think like you its good to talk on here with similar I am also more or less pain free but have aching legs but not sure if that's my age.In terms of diet I am now in a regime where I take no salt and look at products I buy for salt content.I eat very little red meat but stick to fish and chicken and a little pork.Plenty of fresh veg no processed meats.Idont eat bacon but have an odd sausage (pork) now and then.It does seem to work for me in that I keep my GFR stable around 35-38 and my view is I will look after them rather than tempt fate.Hope this helps and keep smiling.Oh by the way I also don't do stress its other people that give it you and when they do I walk away.