Jane

Jane has ANCA associated vasculitis with stage 4 kidney disease and may need a kidney transplant. Her vasculitis was discovered after she had two cardiac arrests and was resuscitated by a stranger. It was very important to her to meet and thank him.

Although she had aches, pains and tiredness, Jane had no idea she was seriously ill until she suddenly collapsed. A passer-by and paramedics saved her life. ANCA associated vasculitis had been silently damaging Jane’s kidneys, leading to two cardiac arrests and an injury to her brain due to lack of oxygen. Jane spent the next 23 weeks in hospital, returning home a few weeks before the COVID-19 lockdown in 2020.

The most important thing to Jane was finding out what had happened and who had saved her life so she could thank them. Meeting the passer-by and the paramedics and returning to the hospital with presents was emotional. Although she wouldn’t have described herself as a religious person, she feels that a guardian angel was looking over her.

Jane is very surprised by how the brain injury has changed her personality. She is less inhibited and anxious than before. She now looks forward to getting up, and everyone says she is more fun. While she is prone to losing and forgetting things, Jane finds her concentration is improving every day.

Jane says that she did well with rehabilitation and has found all healthcare professionals absolutely wonderful However, she is cross that neither she nor her partner were expecting the telephone call about starting preparations for a kidney transplant. She is also surprised that she hasn’t seen a dietitian and disappointed that her doctors have said she doesn’t need to bother about diet, as she has read that it can help recovery.

To take care of herself, Jane has changed to a healthy diet, uses an exercise bike and goes for walks, and reads and does puzzles. She is looking forward to getting back to work part-time with the support of her employer. She says it is important for GPs to be aware of vasculitis and to listen to their patients. Jane says her future looks very bright and she would like her story to give people hope.

Jane has a brain injury from when she collapsed due to undiagnosed vasculitis. She had rehabilitation in the hospital gym and therapy kitchen.

Age at interview 58

Gender Female

Age at diagnosis 57

Jane’s vasculitis caused kidney damage. She’s had conflicting information about whether diet can help.

Age at interview 58

Gender Female

Age at diagnosis 57

Jane remembers only “a couple of weeks” of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

Age at interview 58

Gender Female

Age at diagnosis 57

Since having a cardiac arrest due to vasculitis, Jane feels she has “a guardian angel over me.”

Age at interview 58

Gender Female

Age at diagnosis 57

Jane thinks there may be a number of reasons for her getting vasculitis, but she no longer blames herself.

Age at interview 58

Gender Female

Age at diagnosis 57

Jane remembers only a couple of weeks of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

Age at interview 58

Gender Female

Age at diagnosis 57

Since having a cardiac arrest due to vasculitis, Jane feels she has a guardian angel over me.

Age at interview 58

Gender Female

Age at diagnosis 57

Jane’s vasculitis caused kidney damage. She’s had conflicting information about whether diet can help.

Age at interview 58

Gender Female

Age at diagnosis 57

Jane has a brain injury from when she collapsed due to undiagnosed vasculitis. She had rehabilitation in the hospital gym and therapy kitchen.

Age at interview 58

Gender Female

Age at diagnosis 57

Jane thinks there may be a number of reasons for her getting vasculitis, but she no longer blames herself.

Age at interview 58

Gender Female

Age at diagnosis 57