Penny's story: living with CKD and sepsis

After a bout of sepsis in hospital, it took months for Penny to received a diagnosis of CKD but she maintains a positive outlook. It is always 'What's next', and never 'What if...'

Diabetes, chronic kidney disease, and sepsis

"I was being treated for about a year for irritable bowel syndrome, which gradually got worse and resulted in me collapsing at 2 o'clock on the landing. Luckily, I had my phone with me, no idea why, so I rang my daughter who came round and called an ambulance. I was pretty much out of it but remember telling one of the paramedics in my house to get out!

"I was taken to intensive care, and they said I had a burst duodenal ulcer. I was kept in ICU for 7 weeks, not really responding. Part of that time I was sedated, and according to them I 'signed' a do not resuscitate form, while I was actually unconscious. I would overhear the doctors, when I was sedated, say I was on palliative, end-of-life care, and I was laying there thinking 'oh my gosh'. But I couldn’t say anything, I couldn't even blink.

"Luckily, my daughter was there and suggested a rash that I had developed could be sepsis. She demanded they check, and it was sepsis. I gradually improved but the infections weren’t going away, so I was transferred to another hospital and put on a wonder drug. Eventually, I improved and left hospital in October.

"When I got back home, I still couldn't really do anything. My single bed was brought downstairs and had home help three times a day. My family would come in in the evening and help with cooking dinner. I used a commode and a walking frame. I lost three and a half stone. My target was to get upstairs to use my own toilet and sleep in my own bed. It took me about a month to do that. I am a stubborn mule; I will do something if I am determined!

"My diagnosis of chronic kidney disease (CKD) didn’t come until the following March, when I went back into hospital. When I was there, one of the nurses asked if I knew I had diabetes. I said no and she told me it was on my discharge papers from the previous October. I had no idea what damage had been done from October to March.

"I then got access to my medical notes, and that was when I found out I had stage 3 CKD too. The nurse, when I was at hospital, explained that the diabetes and CKD were documented in the comorbidities section on my previous discharge papers, so perhaps that was why they weren’t picked up properly by the GP.

"My diabetes is now controllable and I am waiting for the blood and urine tests to see how the land lies before I perhaps go on medication for the CKD."

People 'listen' but don't 'hear'

"It can feel frustrating, seeing a GP or talking to a nurse about CKD and sepsis. My opinion is that there isn't enough understanding. I had a conversation the other week with my GP's receptionist, and she told me her mother had died of sepsis. She was the first person in the practice to acknowledge it.

"I find that people 'listen' to you, but don’t 'hear' what you’re saying. I saw a GP after another respiratory infection, waited two weeks for an appointment, and then had to persuade them that I had an infection to be given antibiotics. According to Sepsis UK, other people have had the same thing happen to them. Now I always say to the doctor, 'I don’t feel well…,' instead of 'I’m okay but…'. If I am not okay, I’m not okay.

"When I was diagnosed with diabetes and kidney disease, I had no idea about kidneys. It would be nice to have somebody to hold your hand and explain the situation. I don’t really mention sepsis or kidney disease to friends and family anymore. Their attitude is that I survived and that’s enough. Everyone says, 'You look well', and now I just say thank you. But often I’m not."

Signs of sepsis

Having a positive outlook

"I am absolutely paranoid about getting infections. I am an ageing hippy and I used to walk around in bare feet in the garden but being diabetic I have to be careful with my feet, so I now wear shoes. I am scared of going on a bus and I still wear a mask. Mentally, sepsis changes you.

"When it comes to kidney disease, if I have backache or side ache, that can mean I’m dehydrated or haven’t drunk enough. I also check my urine, and I can tell by the colour if I need to drink. Everything, from sepsis to CKD to diabetes, is a balance.

"I go to the gym on a Monday for rehab sessions, with people recovering from various illnesses and diseases. I went down with my sepsis T-shirt on recently, raising awareness.

"Don’t let sepsis or CKD stop you. It does change things, but just because you're not fit like you used to be, you can still do things. I’m a Yorkshire woman, we're independent and strong minded, we get on and deal with things. Since having sepsis, I just have to do them over a period of time!

"Have a positive outlook, that's my advice. I try not to dwell on sepsis or kidney disease. You have to look forward, not back, and it has taken me a couple years to learn that. 'What if…' has happened, now it is, ‘What’s next?’

"You can't change what has happened, and you might not go back to exactly where you were, but it doesn’t stop you moving forward. Positivity is my key word – a good, rounded word for people to use and live by. I have negative days and then I treat myself to a ginger biscuit! If you are positive, you can do anything."