Just saying hello in here as a Nutritional therapist and yoga teacher and writer...who also happens to currently be on PD - nearly three years, before that almost two decades with a cadaveric kidney and before that 7 years on HD! My own kidneys failed at 14. I'm thrilled to share that I live a life I absolutely love so it's so true that our greatest challenge can become our greatest gift. My first book, 'Wholly Aligned, Wholly Alive: Awakening your inner physician' is in typesetting and design stage, due out later this Spring. I hope you will find it both useful and inspiring as I share my transformation and how I navigated the journey and continue to do so with yoga, meditation, deep self inquiry and nutrition as well as large doses of belly laughing along the way! I am based in London and am also involved in bringing yoga and nutrition in our NHS (national health service) which is hugely exciting. There is now a big sea change around a truly integrated healthcare model. I am presenting to the renal unit at the hospital I attend in my professional capacity on the movement referred to as social prescribing where General Practise doctors can prescribe yoga to their patients. I already run two such community classes that the GP practise funds and are free to those who attend.
I am starting to work more with doctors who have not had the benefit of nutritional science or indeed the opportunity to learn about the power of breathing and how much that can resolve in the body and nervous system. Healthy doctors - healthy patients! Both matter and both need to be in the conversation so always express your concerns or views and ask questions when it comes to your health. It is always your decision and there is so much you can do to keep yourself well.
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Sounds amazing what you are trying to do. My renal consultant Paul Harden is a chairman for both the world and british transplant games so he promotes fitness pre and post transplant.
I'm currently on HD (4weeks) at the moment and learning to do home HD. I volunteered last year at the British transplant games and it was amazing.
The reason I mention this is because there were stands about kidneys disease, heart disease and was maybe thinking you could do something to promote yoga and nutrition. The lady on face book Lynne Holt might be the best person to contact if your interested.
You are right we have to fight but it's so important to know life doesn't have to be other when diagnosed, we can still live a normal life just have to work a bit harder for it some times.
Keep up the good work and I hope you get a second transplant soon
Thanks Charlene. I hope you are adapting to the HD. Give it some time to discover what suits you. Deep breathing helps tremendously especially where pain is involved. Inhale for 6 seconds and exhale for 6 seconds - it's called coherent breath and will help hugely to signal calm and safety to the nervous system. 20 minutes a day will change your life. Most people don't breathe properly and it causes serious issues. Breathe....and everything changes.
That's very thoughtful of you to make your suggestions. I'll look into it. Nephrology is definitely one area of medicine that is over-medicalised. There needs to be more balance in it.
I wouldn't describe it as a 'fight' as that stresses the system although certainly I've had to strongly stand my ground in some instances when I know what's best for me. It is an adventure and a journey taking it all just one day at a time whilst tuning into your inner self.
I applaud you Wholly!! What a wonderful path you are having. I will be one of the first to get your book when it comes out. I am recently started on HD in center, and soon to go to peritoneal dialysis . Looking forward to the change. I, too ask lots of questions and speak my concerns to my Doctors. Also am learning about the mind body connection, learning visualization, meditation, Reiki, and breathing techniques. You found your purpose. I also want to help others with my experience, strength and hope as I go along my journey. Bravoo Wholly!!
What a lovely message to receive. Thank you! I also do reiki and find people love it as it reminds them of their own capacity to relax - something modern society is fast forgetting! I wish you a smooth transition to PD - for me I find it much more in keeping with self care and doing it at home at night is so much easier and pleasant. Well done! Yes I am living my purpose and so grateful. A big part of it is me working more with medics and I have to say my message is being very well received. I will be doing yoga sessions and a nutrition talk for several paediatric trainees. I go where the need is and the minds are open - that's how we make change!
Also I have a question, dont know if it is allowed, but I will ask. I believe that we have received too many antibiotics in our lives. I am now against taking any more of them. The surgeon said that they will use an antibiotic before the surgery for the PD catheter. I want to tell him NO. I will put it this way to him, "will you still do the surgery if I refuse an antibiotic"? and go with his answer. There I answered my own question!
I am happy to give you my view. I agree we have over medicated in terms of antibiotics and in many cases they are not needed. What I would counsel though for this procedure is always weigh up the risks versus the benefits. Definitely have the conversation with your team - it is a one off antibiotic and will vastly reduce your risk as the last thing you want to introduce is any kind of infection with the catheter which is essentially an open wound. I did have it for the procedure. After 3 years on PD I have had no episodes of peritonitis or site infection as I visualise health and wellness and take turmeric etc. However, this is a surgical procedure and in this context, my view would be towards taking it. Of course it's up to you but have a good and open conversation with your doctor about it and then make your mind up. Remain calm rather than getting frustrated (I know that's not always easy) and just say you are wanting to make the best informed decision for yourself. You can always support your gut after with a good course of probiotics and plenty of fibre/gut friendly foods etc.
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