Hi! I’m Jenny, a 55-year-old, Yorkshire-born mother of two grown-up sons, who has common variable immunodeficiency (CVID) and immunoglobulin (Ig) treatment for it. I consider myself fit and healthy, and able to manage most things, from my immune-suppressed context.
The journey to diagnosis
I was born with severe eczema and an allergy to milk (developing more severe allergies as food was introduced to my diet). I spent a lot of my childhood in and out of hospital, missing a lot of school in the process, although I was hospital-schooled intermittently.
At the age of 14 I had my first experience of idiopathic thrombocytopenia purpura ITP. I was treated with steroids and underwent my first bone marrow fine needle aspiration. I left school at 16 and had a number of jobs before moving ‘down south’ in my early twenties to work for P&O Ferries. During my medical interview for the company I was told I wouldn’t pass the medical owing to my allergies. So, I found a job onshore in Dover, then in Marlow, before moving to London.
Working in London as a training officer for a large hotel chain, I muddled through periods of good health and then huge dips and additional diagnoses. My sinus and chest symptoms became more concerning and I was referred to different departments at my local hospital. I was under the care of the ENT department and the chest clinic (receiving a diagnosis of bronchiectasis) and also the haematology department for repeated ITP, IgA and IgG deficiency, haemolytic anaemia and autoimmune neutropenia. Subsequently I was diagnosed with Evans syndrome.
Things began to change close to my thirtieth birthday, when I was hospitalised three times in one year with pneumonia. Up until that point, my Evans syndrome had been treated with steroids and hospital stays, and my respiratory problems with numerous antibiotic treatments and steroids. The haematology department took me under their wing upon recognising that long-term antibiotic therapy was not the best option for me. After the bouts of pneumonia and having nearly 6 months of work, I resigned my post and took to being a ‘full-time mum’ with enthusiasm and got involved in lots of other things including becoming a trustee of a charity – Ruth Hayman Trust, secretary of my children’s school PTA (as well as a reading volunteer) and working a few hours a week for a local landscape gardening company. Over the next ten or so years I counted myself lucky that I could make this decision, feeling grateful that my partner earned just enough for us to live on.
In my late thirties I had another bout of ITP, was found to be iron deficient and admitted to hospital again. I was given an Ig infusion for the first time and eventually referred to an immunologist for a second opinion. After three appointments with the immunologist, numerous tests and recounting my health history, I was diagnosed with CVID. The diagnosis has led to me having regular infusions of a human serum product, firstly Viagam and most recently Octagam, for the last 16 years.
Over time I had lost confidence in my ability to convince an employer to hire me, what with my health being so erratic and unpredictable (although these were my thoughts and not based on evidence) so I began studying – catching up on what I missed as a child – before eventually applying to university. In my final year of my degree I completed a research project, which included students and families, at the local Medical Education Service (MES), looking at the ‘Breakdown in Communication Between School and Home When a Child has Chronic Ill Health’ (JWainman, 2003). After this project the MES asked me to stay on and continue my work with the students…so, just before my fortieth birthday, I became employed full-time again, as well as graduating with a BSc in Health Studies (BioPsychoSocial Aspects of Health).
Whilst working full-time, managing my condition and receiving regular treatment, I went on to study for my PGCE and gained Qualified Teacher Status. I completed an MA (Counselling in Education; three years part-time) at the Tavistock Clinic, and was then seconded part time, for a year at King’s and the Anna Freud Centre, where I completed a PgDip in Children and Young People Therapy and became a Cognitive Behavioural Therapy (CBT) Specialist.
Ten years ago, during the first year of my Masters, I developed Non-Hodgkin Lymphoma and had a course of chemotherapy, which left me in remission and needing continual monitoring by the oncology team. I came under the close eye of Occupational Health at this point, and it was documented that my regular treatment could not be classed as ‘time off from work’ and I no longer had to fill out forms for each treatment/infusion I had. I continued to work full-time and managed my many appointments by booking them at either the beginning or end of the day, to avoid interrupting the school schedule too much. In 2016 I developed a squamous cell carcinoma. The consultants were contemplating ‘radical mutilating surgery’ or radiotherapy, which I questioned, and I’m still a watch and wait.
My health now
Over time the regular infusions led to a reduction in chest and sinus infections, and fewer reasons to take antibiotics. I continued to have regular full blood tests to check my Ig, iron and platelet levels.
I continue to see numerous consultants including Immunology, Haemotology, Oncology, Respiratory, Opthamology, Rhinology, Audiology, Gynaecology…and have most recently been referred for possible Stem Cell treatment.
My Ig product Viagam was swapped in August 2018 to Octagam, which metabolises more quickly. Since the product swap my chest function is changing. I have a continual productive cough, am seeing the respiratory and ENT experts again, and am back on antibiotics to keep the symptoms at bay. The benefit of the new product, however, is that a previously eight- or nine-hour treatment (due to preventing an allergic response) became two hours from start to finish – although I did initially miss the time to work/study/read because I couldn’t go anywhere for that period of time.
How did my family cope?
My partner and I separated 14 years ago, and so I have brought up my children on my own for the most part; their father and I remain friends. Prior to our separation, my partner had to have repeated time off work to look after the children, sometimes at a moment’s notice. He was able to do the physical, practical things, but struggled to manage emotionally. It was difficult for him to be the main breadwinner and watch me lose confidence and not be able to support myself financially.
My children have both had to watch their mum dip in and out of difficult health situations, visit me in hospital and look after me when I’ve been unwell at home. I have always spoken openly about my health to them and they have been great sources of support during difficult times. I have two sons, who can explore worries and concerns, are empathic and supportive characters. They are fit and healthy, and, just like their mum, ‘get on with things’ and push through. Sometimes this is a useful tool but at other times it can be a block to asking for help.
How do I get on with everyday life?
For the last 15 years I have worked for the same London borough, running an induction programme as a teacher and working with adolescents and their families as a CBT therapist. In December 2019 I made the big decision to leave the public sector, to establish my own practice and expand my working with others in developing training courses and support for ethical and wellbeing practices in organisations. I regularly attend the gym, sing in the community choir and am a trustee of two national charities.
Over the years I have been lucky enough to have support from a whole host of consultants, specialist nurses and staff on the unit I attend, the Full Circle Foundation (a group of complementary therapists who offer their services to cancer and haematology patients) and the South East Cancer Help Centre, where I sought out other relaxation therapies and counselling. After many years of treatment and understanding my condition, sometimes better than those who treat me, I am able to ask searching questions, feel able to make decisions about my health and am able to look at the most recent research and thoughts about the differing treatments I am being offered. I am also free to speak with my immunologist and haematologist over the phone or Skype if I have questions or concerns.
I have lived with uncertainty all my life and am never sure what health concerns sit round the corner. I have become emotionally strong and have worked hard on my understanding and responses to difficult situations. Over time, I have learnt to appreciate today, continue to plan for the future (even though the plans don’t always work out), enjoy what I have and cherish my family and friends.
To anyone newly diagnosed and facing treatment for the first time, I would say:
- Ask as many questions as you need to.
- Write down your questions for AND the answers from the health experts.
- Take someone with you to appointments in the initial stages.
- Find out what services the hospital has to offer.
- Find out what your treatment entails.
- Give yourself plenty of time to get to your appointments and then to relax at home afterwards.
The treatment regime can be tiring at first but the benefits for your health overall are worth the initial discomfort. You will soon get used to the routine and it will just become a part of your life. There is life after CVID treatment and all its complications.
Jenny Wainman, BSc, PGCE, MA, PGDip
CYP IAPT CBT specialist (MBABCP)
RainbowsGB Registered Director
www.JennyCBT.weebly.com or LifeCoach-London.com
Posted April 2020