{"id":161856,"date":"2026-05-13T08:54:55","date_gmt":"2026-05-13T07:54:55","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=161856"},"modified":"2026-06-09T13:36:38","modified_gmt":"2026-06-09T12:36:38","slug":"connecting-with-other-patients-makes-life-with-kidney-disease-less-lonely","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2026\/05\/13\/connecting-with-other-patients-makes-life-with-kidney-disease-less-lonely\/","title":{"rendered":"Connecting with other patients makes life with kidney disease less lonely"},"content":{"rendered":"\r\n\r\n\t\t\r\n\t<p>Staffordshire mum, Holly Acton, was unexpectedly diagnosed with kidney disease at the age of just 28, she was thrown into an unfamiliar world of chronic illness and treatments. It was overwhelming. \u00a0<\/p>\r\n<p>Now 32, she says: &#8220;I remember crying when the doctor told me I needed <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/dialysis\/\">dialysis<\/a>. It all sounded so scary. I didn&#8217;t know what to expect. However, it turned out it wasn&#8217;t the end of the world for me.&#8221;\u00a0<\/p>\r\n<p>One of the main sources of support for\u00a0Holly\u00a0in\u00a0adapting to life with kidney disease has been connecting with other patients facing similar\u00a0challenges.\u00a0\u00a0<\/p>\r\n<p>Holly says: &#8220;It has helped a lot, engaging with online communities where people talk openly about the challenges they face and how they continue living their lives. It gave me a lot of insight and answered so many of the questions I had.\u00a0<\/p>\r\n<p>&#8220;No matter how much support you have from friends and family, it can be lonely without other patients to speak to. It&#8217;s hard for people to understand what it&#8217;s like to have kidney disease unless they&#8217;re going through it themselves. I&#8217;ve developed friendships with other patients and it&#8217;s nice to know I&#8217;m not alone.\u00a0<\/p>\r\n<blockquote><p>&#8220;I&#8217;ve\u00a0benefited\u00a0from other people&#8217;s experiences and now I share my own.\u00a0We&#8217;re\u00a0all going through our own journeys but\u00a0there&#8217;s\u00a0a lot we can learn from each other.&#8221;\u00a0<\/p><\/blockquote>\r\n<figure itemscope itemtype=\"https:\/\/schema.org\/ImageObject\">\r\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/A119E3BC-FCFD-4073-884F-63A73FB68A9E-281x500.jpeg\" alt=\"Holly, in hospital with an oxygen tube\" height=\"500\" width=\"281\" title=\"Holly Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/A119E3BC-FCFD-4073-884F-63A73FB68A9E-281x500.jpeg\" alt=\"Holly, in hospital with an oxygen tube\" height=\"500\" width=\"281\" title=\"Holly Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\r\n\t\t<figcaption>Holly in hospital<\/figcaption>\r\n\t<\/figure>\r\n\t<h2>Holly&#8217;s story<\/h2>\r\n<p>In 2021, while pregnant with her third child, Holly&#8217;s <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/blood-pressure\/\">blood pressure<\/a> was dangerously high. When her doctors were unable to reduce it, Holly had to give birth to her son, CJ, prematurely at 25 weeks &#8211; leading to a four and a half month stay in a neonatal intensive care unit and 18 months of needing oxygen.\u00a0<\/p>\r\n\t<p>After giving birth, Holly had a kidney biopsy, and was diagnosed with a type of kidney disease called <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/iga-nephropathy\/\">IgA nephropathy<\/a>. Her kidney function declined over the following year, leaving her needing dialysis.\u00a0<\/p>\r\n<p>Holly says: &#8220;Everything changed and flipped my life upside down. My main concern was my son, so I didn&#8217;t have time to register just how serious my kidney disease was at first. I&#8217;d never noticed any symptoms and assumed the tiredness and sickness I had felt during my pregnancy was normal.&#8221;\u00a0<\/p>\r\n<p>The following Christmas,\u00a0Holly\u00a0was taking her two daughters to see a pantomime when she received a call from the hospital asking her to come in straight away. Her\u00a0latest blood test results showed\u00a0her <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/stages-of-kidney-disease\/\">kidney function<\/a>\u00a0had declined to just 8%.\u00a0Dialysis was now a necessity.\u00a0<\/p>\r\n<p>To manage dialysis around caring for her children,\u00a0Holly\u00a0chose to have <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/living-with-kidney-disease\/care-and-treatments-for-people-with-kidney-failure\/automated-peritoneal-dialysis\/\">peritoneal dialysis<\/a> at home, rather than <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/living-with-kidney-disease\/care-and-treatments-for-people-with-kidney-failure\/haemodialysis\/\">haemodialysis<\/a> in\u00a0hospital.\u00a0\u00a0<\/p>\r\n<p>She says: &#8220;It worked better with our routine to dialyse overnight and be\u00a0there for\u00a0my family\u00a0in the day. Particularly with\u00a0CJ\u00a0being so unwell.\u00a0It\u00a0was\u00a0difficult\u00a0planning\u00a0our lives around hospital appointments and treatment, but we&#8217;ve\u00a0always tried to keep a positive outlook.\u00a0Seeing people\u00a0having\u00a0their transplants gave me a lot of hope\u00a0that one day I would get a new kidney too.&#8221;\u00a0\u00a0<\/p>\r\n<figure itemscope itemtype=\"https:\/\/schema.org\/ImageObject\">\r\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/IMG_0916.jpeg\" alt=\"Very tiny baby boy in an ICU incubator\" height=\"2048\" width=\"1536\" title=\"CJ Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/IMG_0916.jpeg\" alt=\"Very tiny baby boy in an ICU incubator\" height=\"2048\" width=\"1536\" title=\"CJ Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\r\n\t\t<figcaption>CJ was born prematurely at 25 weeks.<\/figcaption>\r\n\t<\/figure>\r\n\t<h2>Receiving a\u00a0kidney\u00a0transplant<\/h2>\r\n<p>Holly\u00a0needed dialysis for two and a half years before she finally received a transplant\u00a0thanks to her sister,\u00a0Rebecca<b>\u00a0<\/b>who donated a kidney to a stranger\u00a0as part of the <a href=\"https:\/\/www.organdonation.nhs.uk\/become-a-living-donor\/donating-your-kidney\/uk-living-kidney-sharing-scheme\/\">UK Living Kidney Sharing Scheme<\/a>.\u00a0As\u00a0Rebecca\u00a0was not a match to donate directly to\u00a0Holly, the scheme enabled them to match with another donor-recipient pair,\u00a0facilitating\u00a0a transplant for each patient.<\/p>\r\n<figure itemscope itemtype=\"https:\/\/schema.org\/ImageObject\">\r\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/9edcf75b-6407-4f16-8baf-83dd6314f9f4-375x500.jpeg\" alt=\"Rebecca, crouched down next to Holly who is sitting on a chair.\" height=\"500\" width=\"375\" title=\"Holly Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/9edcf75b-6407-4f16-8baf-83dd6314f9f4-375x500.jpeg\" alt=\"Rebecca, crouched down next to Holly who is sitting on a chair.\" height=\"500\" width=\"375\" title=\"Holly Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\r\n\t\t<figcaption>Holly (right) with sister, Rebecca<\/figcaption>\r\n\t<\/figure>\r\n\t<p>Holly\u00a0says:\u00a0&#8220;I&#8217;m\u00a0so grateful to my sister for making my transplant possible. She has recovered quickly and is doing amazing. For me, my health has continued to be up and down. No longer being on dialysis is a huge positive but I still\u00a0don&#8217;t\u00a0feel amazing.\u00a0<\/p>\r\n<p>&#8220;People think that once you have a transplant\u00a0you&#8217;re\u00a0&#8216;fixed&#8217;\u00a0&#8211;\u00a0but\u00a0that&#8217;s\u00a0not the reality. There is still so much to consider with complications and all the medication you need to take.\u00a0I&#8217;m\u00a0experiencing severe back pain and have a cyst on my new kidney that\u00a0I&#8217;m\u00a0having tests on. I also have steroid-induced\u00a0diabetes related to the medication I\u00a0needed\u00a0to\u00a0try and\u00a0slow the decline of my\u00a0native\u00a0kidney.\u00a0<\/p>\r\n<p>&#8220;I hope we&#8217;ll be able to resolve those complications soon, allowing me to get back to more normality. No longer needing to hook up to a dialysis machine is already a big step to more freedom for me and my family. Once my health is under control, I hope we&#8217;ll be able to do more activities and go on holiday together. \u00a0<\/p>\r\n\t<p>&#8220;CJ is doing amazing and is almost five now! He is non-verbal and lives with autism, but he lights up every room and is an absolute miracle. He&#8217;s due to start a special education needs (SEN) school in September and is thriving. Going through everything has changed my perspective on life. It makes you realise life is short, so it&#8217;s important to do what makes you happy and fulfilled.\u00a0<\/p>\r\n<blockquote><p>&#8220;I hope sharing my story will help other patients feel less alone. There are so many of us facing similar challenges with kidney disease. Finding an <a href=\"https:\/\/kidneycommunity.kidneyresearchuk.org\/\">online community<\/a> to share tips, fears and reassurance has been so important to me in navigating my journey so far. I hope other patients reach out to find support and friendship too.&#8221;\u00a0<\/p><\/blockquote>\r\n<figure itemscope itemtype=\"https:\/\/schema.org\/ImageObject\">\r\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/IMG_6179-375x500.jpeg\" alt=\"5 year old little boy looking up towards the camera\" height=\"500\" width=\"375\" title=\"CJ Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/05\/IMG_6179-375x500.jpeg\" alt=\"5 year old little boy looking up towards the camera\" height=\"500\" width=\"375\" title=\"CJ Action\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\r\n\t<\/figure>\r\n\t<h2>Kidney Community<\/h2>\r\n<p>A new dedicated online forum for kidney patients and carers, helping people connect\u00a0with others who might be going through similar experiences.<\/p>\r\n<p>Co-developed with patients and carers, Kidney Community is a\u00a0welcoming,\u00a0safe space where you can share experiences, ask questions and find information and\u00a0support.<\/p>\r\n\t\t\t<a href=\"https:\/\/kidneycommunity.kidneyresearchuk.org\/?utm_source=kruk&#038;utm_medium=homepage&#038;utm_campaign=feb_banner\"  target=\"_self\">\r\n\t\t\t\t\t\t\tVisit Kidney Community\r\n\t\t\t\t\t<\/a>\r\n\t\t<h2>Why not make a donation now?<\/h2>\r\n\t\t<p>Every \u00a3 counts towards transforming treatments for people living with kidney disease.<\/p>\r\n\t\t\t<a href=\"https:\/\/kidneyresearchuk.org\/support\/donate\/\"  target=\"_self\">\r\n\t\t\t\t\t\t\tDonate now\r\n\t\t\t\t\t<\/a>\r\n\r\n","protected":false},"excerpt":{"rendered":"<p>Staffordshire mum, Holly Acton, was unexpectedly diagnosed with kidney disease at the age of just 28, she was thrown into an unfamiliar world of chronic illness and treatments. It was overwhelming. \u00a0 Now 32, she says: &#8220;I remember crying when the doctor told me I needed dialysis. It all sounded so scary. I didn&#8217;t know&hellip;<\/p>\n","protected":false},"author":3,"featured_media":161857,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[30],"tags":[],"class_list":["post-161856","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Connecting with other patients makes life with kidney disease less lonely - Kidney Research UK<\/title>\n<meta name=\"description\" content=\"Holly Action was unexpectedly diagnosed with kidney disease at just 28. 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