{"id":6863,"date":"2019-11-19T16:43:29","date_gmt":"2019-11-19T16:43:29","guid":{"rendered":"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/?p=6863"},"modified":"2019-11-19T16:43:35","modified_gmt":"2019-11-19T16:43:35","slug":"%ef%bb%bfmy-tipping-point-by-jonathon-hope","status":"publish","type":"post","link":"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/blog\/%ef%bb%bfmy-tipping-point-by-jonathon-hope\/","title":{"rendered":"\ufeff\u2018My Tipping Point\u2019 by Jonathon Hope"},"content":{"rendered":"\n

A Difficult Start <\/strong><\/h3>\n\n\n\n

Around 40 years ago, at the age of 12, I\nbegan to get initial signs that my kidneys weren\u2019t well.  Four years later at boarding school, my\nkidneys failed and 147 of the next 365 days were spent in hospital. <\/p>\n\n\n\n

As a nervous and unhappy child, this was a\nterrifying and utterly devastating experience. I quickly became overwhelmed and\ndespite the often outstanding and deeply compassionate care I received from the\nNHS, I became convinced that my future was bleak and hence as a child, I learned\nto endure life, rather than live it. <\/p>\n\n\n\n

A prolonged, near-fatal transition to\nhaemodialysis, followed by repeated bouts of peritonitis whilst on the newly\nintroduced CAPD (Continuous Ambulatory Peritoneal Dialysis) treatment, ended\nwith an attempted transplant that failed \u2018on the operating table\u2019. The result? As\na youngster, I felt at the mercy of events, teetering from one health crisis to\nthe next, with little control over, or optimism towards, my life or my future.<\/p>\n\n\n\n

Nowadays<\/strong><\/h3>\n\n\n\n

Nowadays, however, I am delighted to say\nthat things are very, very different: I have an outstanding quality of life: I\ncan eat and drink what I want, have plenty of energy, work full time, run a\nsuccessful complementary therapy company with my wife, contribute to kidney service\nimprovement, travel widely and in short, live life to the full!  I feel healthier than I can ever remember and\nfeel confident and empowered.<\/p>\n\n\n\n

So, to what do I attribute this seemingly\nmiraculous transformation \u2013 one that as a child, I would have thought\ninconceivable if not impossible to achieve?  In short, it was down to one remarkable health\ncare professional who saw in me, something I never imagined I had \u2013 an ability\nto take my self-care skills to the max!<\/p>\n\n\n\n

What triggered this\nmetamorphosis?<\/strong><\/h3>\n\n\n\n

Unbeknown to me,\nback in late 1994, the tipping point of my renal life was just around the\ncorner. My second transplant failed, triggering an urgent relocation from the Hong\nKong branch of a UK bank back to its London head office – and a return to the\ngrey skies of England and the even less attractive prospect of satellite\ndialysis.<\/p>\n\n\n\n

At the time, I was\nyoung, disciplined, well-motivated and independent: I worked full time, lived\n10 minutes from the hospital and so was keen to do more than just dialyse in a\nunit. In addition, satellite dialysis felt too \u2018passive\u2019 to me, though I didn\u2019t\nreally know whether there was an alternative. Then one day I heard fellow\npatients talking about something called home dialysis in really positive\nlanguage \u2013 to my young ears, it sounded a little like the Holy Grail I had\nalways searched for! Strangely though, I may have already had kidney failure\nfor around 10 years, but I had never heard of it. I listened and learned more.<\/p>\n\n\n\n

Self care<\/strong><\/h3>\n\n\n\n

After a little bit\nof investigation and a long and hard push for a place on the home dialysis programme,\nI was thrilled when one day, a sister called Barbara came to see me whilst I\nwas dialysing and offered me a place on the home dialysis programme! That day\nis as vivid in my mind as yesterday, and looking back on it, it came to be a\ntipping point in my life. In short, it was the foundation stone of my re-taking\ncontrol over my day to day life in the face of kidney failure.<\/p>\n\n\n\n

Over the almost 10 years on home dialysis, the\nhome dialysis team were brilliant: their support enabled me to empower myself. I\nvoluntarily extended my dialysis hours to 6 hours three times weekly, adopted\nbutton-holing as a needling technique, dialysed at home on my own and by the\nend of it, I felt less like a patient and more and more like a normal, healthy\nperson! I felt both liberated and energised as I ate, drank, worked, travelled\nand lived more than ever before. <\/p>\n\n\n\n

Even more\nimportantly, however, were the longer term lessons I learned from home dialysis:\nhome dialysis gave me the confidence to manage dialysis, but also the\nconfidence to explore other self-help approaches to improve my quality of life:\nin short, I developed a self-help bug! <\/p>\n\n\n\n

I discovered a huge\nrange of resources \u2018out there\u2019 that could help me dramatically improve my own\nquality of life. I learned to manage the vast array of symptoms that often\naccompany dialysis; to my astonishment, I discovered techniques that improved\nmy mental, physical, emotional and spiritual well-being. <\/p>\n\n\n\n

In time, all\nsymptoms eased and disappeared and my visits to hospital, A&E and my GP\nfell dramatically \u2013 by around 75%. I regained a quality of life that would\nliterally have been unimaginable to that young teenager who started out on the\nhard and sometimes utterly overwhelming journey of kidney failure. Thank\ngoodness for the \u2018Barbaras\u2019 of the NHS!<\/p>\n\n\n\n

Jonathon was Co-Chair of the Programme Board for Transforming Participation in Chronic Kidney Disease <\/a><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

A Difficult Start Around 40 years ago, at the age of 12, I began to get initial signs that my kidneys weren\u2019t well.  Four years later at boarding school, my kidneys failed and 147 of the next 365 days were spent in hospital. As a nervous and unhappy child, this was a terrifying and utterly devastating experience. I quickly became overwhelmed and despite the often outstanding…<\/p>\n","protected":false},"author":130,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-6863","post","type-post","status-publish","format-standard","hentry","category-blog"],"acf":[],"yoast_head":"\n\ufeff\u2018My Tipping Point\u2019 by Jonathon Hope - The Kidney Quality Improvement Partnership<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/blog\/\ufeffmy-tipping-point-by-jonathon-hope\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\ufeff\u2018My Tipping Point\u2019 by Jonathon Hope - The Kidney Quality Improvement Partnership\" \/>\n<meta property=\"og:description\" content=\"A Difficult Start Around 40 years ago, at the age of 12, I began to get initial signs that my kidneys weren\u2019t well.  Four years later at boarding school, my kidneys failed and 147 of the next 365 days were spent in hospital. 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