I begin this feature with ‘My Story’ and then move onto how Polycystic Kidney Disease (PKD) changed my life and created a passion for me to contribute back to the MRI for the wonderful care I’ve received over the years. Here I also wanted to talk a little about my reason for pursuing a Fistula Awareness Campaign, because I see this as an important issue and ensuring staff as well as patients are ensuring the best care is being provided/ received to their ‘life-lines’ for the treatment of renal disease. MY STORY LIVING WITH POLYCYSTIC KIDNEY DISEASE (PKD) – WHO AM I? My name is Lorraine Pooley; I am 52 and have Polycystic Kidney Disease (PKD). I am presently an outpatient at the Manchester Royal Infirmary (MRI) and have had three surgical procedures here in the past 2-5 years. Throughout my renal journey spanning over 25+ years, I have had a rewarding and interesting life – I am always positively driven. When my Father passed away at the age of 36 from PKD, I (nor anyone else) could predict the impact it would have – at times I felt unprepared about my future. I was 11 years old (and the eldest of 6); my siblings and I were all screened soon after our Father passed away and other than me, (who was diagnosed as having an obstruction in the left kidney), my siblings and I had no other signs of PKD. We suffered more heartbreak when two of my dad’s brothers and his sister died as a result of the same condition. I rarely thought about my PKD growing up; life was busy with five siblings, work and getting married. It was not until my daughter Nicola started suffering water infections and doctors asked if there was a history of kidney problems in the family, when things took a different direction. From this consultation, my siblings and I were screened again. Four out of six of us had inherited PKD and our kidneys were showing cysts. We regularly attended appointments and I particularly began to feel changes with my stomach, which felt a little when I was in my late 30s. As I got in my 40s, I started to put a little bit more weight on and the cysts were getting bigger. Secondary, I also developed a cyst on my liver. I ached a lot and experienced a lot of discomfort and back pain. I had trouble sleeping, plus with ongoing fluid retention I was also becoming rotund and looked pregnant – I felt breathless with the fluid building pressure and the extra weight I was carrying. In 2008, my kidney function dropped suddenly; the fluid built up more and I was struggling with day to day life. I continued with regular hospital appointments in 2010 and it was then that doctors informed they would need to remove one or both of my kidneys. This was to ease the discomfort that caused fluid retention and the cysts making my kidneys and liver enlarged. It was during this period that my youngest sister, Melissa Wilding, offered to donate her kidney to me, once my double nephrectomy had taken place….amazing! THE JOURNEY The first step took place in October 2011 when I was admitted to MRI to potentially have both my kidneys to be removed and to also make room for my new kidney (kidney transplant). However, the amount of fluid in my body meant doctors decided to remove just one kidney. There were complications too and I also started dialysis at the same time, so recovery was slow and the transplant did not take place as originally planned – some initial disappointing news, since it meant I had to be put on a HD treatment regime. I had to go to Royal Preston Hospital for HD three times a week following discharge from the MRI, spending four hours there each time. It was tough at first, as they worked to get my HD treatment prescription right, but I tried to make the most of the difficult time on dialysis and certainly coped in a positive manner and adapted to what was, in effect, saving my life and preparing me for my kidney transplant. Throughout my sixteen months on dialysis, I got stronger; the health care staff at the MRI began the ‘Work Up’ again for me and my sister for my kidney transplant. THEN WE GOT THE DATE FOR THE TRANSPLANT 14/2/13 – VALENTINES DAY!! We had regular stringent checks, which took a couple of months and finally my kidney transplant went ahead. The transplant was carried out by Titus Augustine at the MRI on the 14/2/13; me and my sister recovered well and for ME, it gave me my life back. From the first moment I came round, I felt this breath in me, warm, hungry for life, feeling amazing and of course I was happy and proud of my sister. My sister was home in 5 days and is still doing great. I did have a double hernia operation in July 2013. I am now on the road to recovery and will continue to have routine appointments, (especially since I still have one polycystic kidney and a polycystic liver and lasting effects from the hernia I developed too during my time on HD). Following all this, throughout my positive renal journey, I became more aware of everything that was happening to me and others and certain aspects of this I was unhappy about. I recalled being told my vascular surgeon told me in 2011 to treat my fistula access like gold, so I decided to make a decision to take it upon myself and make a fistulae awareness campaign my focus. I also promised fellow patients I would do something about ensuring there was more awareness highlighting issues and concerns of access care. This was my pledge to make a difference for fellow patients in the future. LORRAINE POOLEY ‘S FISTULA AWARENESS BAND CAMPAIGN My vascular surgeon was amazing and informed that I need to ‘treat this arm like GOLD’ (i.e. no pressing, no pushing, heavy lifting before or post fistula operation). More importantly, he informed ‘do not to let any staff, medics inside or outside the hospital to ever use your fistula arm for needling or taking your Blood Pressure’. I adhered strictly following this particular communication. The fistula became my ‘life-line’ and special to me. However, the words of protection of my fistula worried me in during my day to day life moving forward with regards to household chores, (e.g. washing, lifting, vacuuming, shopping, driving and general mobility etc.). Above all, for me what was perhaps most tormenting was the psychological effect of this lifeline had, having to repeatedly tell some medics and nursing staff that I had a fistula and to ‘please do not use BP Monitor or Needles in that arm’. What happened to cause more anxiety was I met a few fellow patients during my time on HD who felt the same and actually almost had their Fistulas ‘blown’ by nurses using a BP monitor on fistulae arms. I was lucky as I voiced my concern, but others I spoke too during and since my research I learned 1) were vulnerable, 2) elderly, 3) unconscious, 4) been admitted to other than renal and 5) have had near misses. One fellow patient I came across had her fistula damaged in surgery and was unrepairable and affected her general renal care and psychologically played havoc!! I began my campaign to promote the use of a FISTULA AWARENESS BAND (please see below). My campaign began in October 2011……my passion from 3 years ago, but it gained more momentum in 2013. To promote my campaign, I approached a series of social media (Facebook groups) including the Renal Patient Support Group (RPSG) to help promote my awareness campaign. I coordinated this project with the chief in research for the RPSG, Shahid Muhammad who was very invigorated by my project. Over a period of one month, the campaign posted on the RPSG group ‘wall’ received 110 comments relating to various areas where care of fistulae access can be/ should be improved and where fellow patients using the group also highlighted psychological issues. Posting on several additional renal-related Facebook groups, my campaign received 180 comments in total in just one month! The message I wanted to highlight and prompt was clear. I want my fellow patients in the RENAL ARENA, who have a Fistula or going to have one in the future – that it is important to protect your access and wear one of these bands (now available from the MRI) so that 1) it makes you feel safe, 2) less vulnerable, 3) less scared and 4) in control. However, I also want to inform that fellow patients please still ensure that you get more understanding about your fistula access, empower yourselves with how to look after your kidney disease and fistula access and help inform others around you – to make sure that on any hospital ward (not just renal) that the staff become more aware. There were numerous times I felt anxious and vulnerable every time I went into hospital for surgical procedures , worried about theatre, scared to go to sleep and at times was worried about my access being damaged. I don’t want that for my fellow patients and neither do healthcare staff. Because my campaign has highlighted so many issues and concerns; Shahid has contacted a fellow colleague at an academic institution to use the comments as a teaching tool for undergraduate nursing students. I also hope to present the findings of my campaign at a prospective conference in November 2014. Moving forward, I have now had the 1st Anniversary Party of my transplant on the 14/2/14 and now grateful the Fistula Awareness Bands in place here at the MRI. The £450 I raised from my party for Kidneys for Life is going towards a project I’m working on around the Fistula Campaign in collaboration with the MRI to make you, my fellow patients, feel more confident about the care you receive. I hope to share this with you soon. In the meantime, the Fistula Awareness Bands at the MRI are available from……….. If anyone wishes to contact me for inspiration, support, patient to patient advice on Chronic Kidney Disease (CKD), PKD or HD, feel free to email me at: awishforakidney@gmail.com. I am happy to talk to you or meet up. Be strong, be positive, be happy and I hope this helps you on your renal journey. Thank you Lorraine Pooley
