Nanette’s Story
When Nanette felt a sharp pain in her upper abdomen, she knew something wasn't right and asked her husband to call 999.
I’m Nanette, I’m 73, married with two children and two grandchildren. My husband, Steve, and I are retired and live in Scotland. We met at the Scottish Parachute Club. I joined thinking I’d meet a rich Scotsman but ended up with a poor Yorkshireman!
My first career was as a professional dancer in theatres, so I’ve always been fit and healthy. Later in life, I worked in occupational health nursing and helped Steve run our family business, a Foundry.
I’d just returned home from delivering food to people with dementia (a group I volunteer for). I was changing back into ‘home’ clothes from ‘COVID’ clothes! I got a sudden, sharp pain in my upper abdomen. I thought it was indigestion, but it worsened very quickly. I have never in my life experienced a such pain.
I knew it was serious. I called out to Steve to call 999. He phoned the doctor and I could hear him going through the COVID questions. By now, I was on my hands and knees. I screamed at him to put the phone down and dial 999. My abdomen was swelling in front of my eyes and becoming hard. The pain was moving further up into my chest. I could hear a dreadful groaning, like an animal. I realised it was me.
Two ambulances later, I was on my way to A&E and was given morphine, which helped. Steve tried to come with me to hospital, but as this was February 2021, COVID restrictions were still in place. Steve became upset, and I remember watching him stood helplessly on the drive. I really believed that would be the last time I’d ever see him.
My time in hospital is mostly a blur. Time became warped. I remember conversations, but I don’t remember faces. I had severe acute necrotising pancreatitis, and I knew I was in trouble, but I couldn’t speak. I spent four weeks in intensive care. Doctors met with Steve, to prepare him for the possibility of me dying, as my organs were failing and my body was struggling to fight.
I’d developed delirium in intensive care. I had this overriding feeling that I was being held against my will and must escape. Steve said that at one point I even pulled all my lines and tubes out in attempt to escape! I’d hear people laughing in the corridor and I’d think, “They sound nice, they’ll come and save me.” As part of my treatment for this, Steve and Katy, our daughter, could visit me.
I remember the final two weeks in hospital a little better, when I was out of intensive care. It hit us just how close to death I was. I was finally allowed home in April. I watched back all the videos that our son John and the rest of the family had made for me whilst I was in intensive care. My family really fought my corner. My sister (a nurse in America) even called the hospital and gave them a few pointers. She said they were understanding.
The recovery was a long process. I was told it would take me a year to recover, which I didn’t believe. But it has. I went from jogging, swimming, dancing and walking daily, to not being able to hold a cup of tea. I was grateful that Katy had found Guts UK online, which helped us understand what had happened to me, and how to correctly take my prescription pancreatic enzymes. I felt I’d been left by my doctors and the hospital to just get on with it.
I had my gallbladder removed in June. They felt a gallstone had caused my pancreatitis, so wanted to remove my gallbladder to be on the safe side. I was in and out of hospital a lot, as I was still in constant pain and discomfort due to a pseudocyst that had formed.
My hospital were in touch with our nearest specialist hospital that could drain the pseudocyst, and my consultant fought for me to have this procedure. I had a stent fitted in October, a whole six months on from me leaving hospital. It was instant relief once the fluid and dead tissue was drained. I sat up and said, “I feel great!”
Unfortunately though I developed biliary sepsis in November. I felt so unwell. I remember telling Steve what I wanted him to do with my ashes. They tried removing the stent but it didn’t go to plan. Finally, a young Irish doctor (who looked more like a rugby player than a consultant) told me, “You’re going to get better from this”. I believed him. He retrieved my stent (which had popped out and gone on a wee road trip through my intestines), and I was back home.
I am so grateful to feel well again. I feel fantastic now. I have Type 3c diabetes and I still take pancreatic enzymes to help digest my food, but I feel so fortunate. I’m swimming again, and I am so grateful to be given a second chance. Guts UK’s Kranky Panky Campaign moves me to tears, and the thought of children suffering the pain I did, is hard to comprehend.
I wanted to share my story because we must find a treatment. I wanted to show people that you can recover from this, like I did. You can feel well again. There is hope. I appreciate all Guts UK do, and knowing that they’re there. Guts UK is a helpful resource that makes a huge difference.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.
