My name is Pippa and this is my story…

My name is Pippa and this is my story. On the 3rd of December 2011 I gave birth to my fifth child, a daughter, Martha. I was 44 years old. Martha was a welcome surprise! My other children at that time were 10, 13,15 and 17. Immediately after delivery I haemorrhaged severely, resulting in a massive blood loss, kidney failure and induced coma. I spent eight hours in theatre as they tried to control the bleeding but due to such severe loss my blood lost the ability to clot. Overall I needed 17.5  units of blood products. I wasn’t expected to survive.

I awoke to find myself in ITU, a gap in my memory. The last thing I recalled was being put to sleep shortly after Martha’s birth, believing I was dying. I woke up to find myself full of tubes and an oxygen mask and no baby - she was safely with my husband, but thankfully still alive.

I spent the following three weeks in hospital being visited by all sorts of specialists for various concerns. Gratefully one of these was my Endocrinologist, who I now realise was on the ball with regards to Sheehan’s syndrome. Firstly, the massive blood loss raised his suspicions as well as the inability to produce milk for Martha. I was diagnosed during my stay in hospital and put on a growth hormone fairly swiftly afterwards. Not being able to breastfeed Martha was a great sadness to me as I had breastfed all my others, but I was far too weak to have fed her even if I could. I was even unable to pick her up for some time. But I had to put things into perspective and not feel guilty or disheartened, we were both alive and she is now 10, and no worse off for not being breastfed!

I have been seeing my endocrinologist for 10 years now and disappointingly 2 years ago, 8 years after Martha’s birth, my pituitary has sadly declined further. So I am now adrenal deficient and lifelong steroid dependent taking Hydrocortisone daily. This I think has been one of the hardest challenges and source of grief to me as I now live under the shadow and anxiety of a life-threatening condition. Thankfully my thyroid and kidney function seems to be holding up  (although not back to normal) is good enough.

On a daily basis I think one of the hardest challenges is looking normal, people tell me I even look well and yet I can feel so poorly inside.  Also, the isolation and vulnerability of living with such a rare condition that the regular person has no idea what it is. I have given up trying to explain, as within a few words their eyes tend to glaze over, or comment "well you look fine". It's isolating and can be frightening at times. My body often feels alien to me and gets stuck in deep cycles of heavy headedness and tiredness which often descend as quickly as they go. I used to try and understand why I was feeling this way during these bouts, but I’m getting better at just accepting this is how it is and as frustrating as it is, each of these periods will pass and I will feel more normal again.

I’ve forgotten what my old self, pre-Martha, was like. I imagine I had been tired for years looking after four children, but I imagine the recovery from daily life and stress perhaps quicker. Also living with a chronic condition inevitably produces levels of anxiety and much questioning which I try to confront most days.

I am currently writing this from Kathmandu in Nepal as I am visiting my eldest daughter who is a teacher over here. It’s been a trip of a lifetime. Each day has been busy and full and I’ve survived on very little sleep each night, probably more to do with the menopause but that’s another story! However, I’ve kept up and stayed well. I don’t think I would have considered such a trip a few years ago. but I came prepared with my growth hormone injection pen, emergency steroid injections, steroid medication and anything else I felt would help me through.  I always carry tablets close by for necessity and security. I was given a second chance and I have to live, and people have to cope with much worse so I am grateful that my condition can be managed well enough for me to live a near normal life. I wasn’t expected to survive, so on my bad days I remind myself that, and I am grateful. I also am so grateful to all those who donate blood as I would not be here without you. We worked out that it would have taken close to 100 donations as some of the blood products were quite specialist.

It’s been quite a journey and continues to be one. I’ve often felt misunderstood, unheard, misheard and often frustrated by medical professionals. I’ve learnt to be assertive and to persevere at getting the help I need to be well enough to cope with the demands of daily life. I try to live a day at a time and celebrate those days when I feel truly well. None of us knows what’s around the corner, I hope that I can grow old being well enough and thankful for all that I have.