Lymphocytic Hypophysitis – two words that changed my life, forever

Lymphocytic Hypophysitis – two words that changed my life, forever.

Prior to 2013, I was a healthy, gym-loving individual working as an ICU Nurse, helping other people with their medical battles.  Little did I know, I was about to enter my own battles which would change the course of my life.

In August 2013, I was expecting my first child and apart from it being a “rough” pregnancy, everything seemed to be going to plan.  I was experiencing morning sickness from an early stage which seemed to last for most of the pregnancy.  After a while, I could only eat three different types of food and I developed an excruciating headache which didn’t subside with medication.  At one point, the pain was so bad that I went to the ER to get checked out.  The Doctors decided I was just dehydrated from the pregnancy; I have since found out that this was probably the moment when the Lymphocytic Hypophysitis began.

Three months before my due date, I went on leave from my position as an ICU Nurse.  I was feeling dizzy most days and fainted once whilst at work, so was advised to stay home and rest.  My due date came and went.  At 41 weeks I was induced.  It took three induction attempts for anything to “appear” to start happening and after 28 hours of labour, it was decided that an emergency c-section should be performed.  I spent four days in hospital due to having the c-section and apart from feeling tired and still a little dizzy, I was given a clean bill of health and sent home with my new son by the weekend.

Whilst at home, I was trying to adapt to my new life as a mother whilst also catching up on sleep.  After a few days, I had no energy to eat or look after my son and whenever I laid down, I just fell asleep for hours on end (it now transpires that I was slipping into a coma from Adrenal crisis).  In Australia, it is routine to take bloods one week after giving birth, so I had those taken as normal.  This is the moment that I believe saved my life.

By this time, I was experiencing sickness again and just feeling generally unwell.  I contacted the Midwives at the hospital for some advice and was told it was all perfectly normal after just having had an emergency c-section.  I certainly didn’t feel like how others had explained their experiences of childbirth.

At one week post going home from hospital, my GP rang and told me that my blood results had shown some odd readings and could I have them done again just to check.  It was getting late in the day and towards the weekend, so I was advised to go to the ER to have them redone.  Whilst in the ER, I felt like I was wasting the Doctors and Nurses time, I only needed some bloods retaking after all…...

An ER Consultant came to give me the new results.  He said that my bloods “were not conducive with life”.  I laughed – then I looked at his face and realised it was a nervous laugh.  I was then admitted to the hospital for more tests, that was the start of my six-week journey as an in-patient.

I was prodded and poked and had so many different tests that I can’t even remember some of them.  The Endocrinologist on duty was very thorough and even sought advice from other more senior Endocrinologists at nearby hospitals in the area (she remains my regular Endocrinologist to this day).  Eventually, I required a pituitary biopsy to provide a full diagnosis.  I was scared.  However, everything went well with the biopsy and my medications were adjusted following the official diagnosis.

I was initially given a course of high-dose steroids via an IV line to help reduce the pituitary swelling, but that proved too stressful on my heart as my heart rate plummeted to 27 beats per minute.  As a result, I was kept in hospital for another week for observation and talk turned to the possibility of needing a pacemaker.  Luckily, my body recovered itself and I was eventually sent home to start my new life with a bag full of new lifelong medications.

Adjusting to this new life was hard, learning about being a new parent as well as trying to learn about my new medical conditions (which took a while to find information/other’s experiences).  Over the years, I have reached out to many counsellors as I experienced a lot of guilt towards my son, especially as I have very little recollection of his first six weeks of being a newborn due to being in the hospital.  I was diagnosed with Post Traumatic Stress Disorder, Post-natal Anxiety and Depression as a result.

It has taken well over five years to adjust to new/altered medications and get me to a stage where I am as “normal” as I can be with this condition.  I tried to go back to working as a Nurse but couldn’t handle the shift work so gave up my 12-year career.  I spent a few years being a stay-at-home Mum instead whilst my son was little, and I now feel this has helped me to overcome the guilt I originally felt at not being there in the beginning.

My son is now a happy, healthy 9-year-old and I am starting to get my working life back on track.  I currently work 10 hours per week at a local school selling uniforms and I love that it gets me back into the workforce without over-exerting myself.

I’m often asked by friends and family if I wish I didn’t have this condition.  Well, yes of course I wish I didn’t have it, but I believe everything happens for a reason and without this, I wouldn’t have my beautiful son.  Life is full of challenges and this one has been a big ongoing challenge and will be into the future.  I have no regrets.