Hi my name is Fiona, I am 56 years of age and I was diagnosed with the primary immunodeficiency (PID) IgG2 subclass deficiency when I was 31 years old. My brother has also had a diagnosis of IgG subclass deficiency.

“My infections continue but are fortunately they are not serious and respond to antibiotics, mainly oral antibiotics, but occasionally a course of IV antibiotics is required.”

The condition means that I have reduced resistance to some bacterial infections that mainly affect sinus and upper respiratory tract.  When I do get an infection it can last longer.

My journey to diagnosis

I had always been a healthy person who recovered from illnesses quickly until, at the age of 31. When I was 31 years of age with a new baby daughter (five months old) I first became unwell. My daughter had her first cold and ear infection and I was really tired and I ignored how I was feeling with what I thought was a cold. When I managed to get a GP appointment I concentrated on getting my daughter looked at and did not feel there was enough time in the appointment to mention that I was not feeling very well. Two days later I had very high temperature and was immediately admitted to hospital with query meningitis and pneumonia. It was confirmed in hospital as pneumonia and after treatment with intravenous antibiotics I was discharged home after week in hospital. However I did not recover as expected and I was readmitted with a pulmonary embolism resulting in further three weeks in hospital.

More infections and getting the diagnosis

I was very fortunate as my hospital consultant was an infectious disease specialist and as a result had an interest in immunology. He discussed with me that he would like to explore why a fit 31 year old should have such a serious pneumonia. He sent off bloods to a laboratory which would take months for a result (it was 1990) and we started to monitor my health and in particular number of chest infections. In the next year I recorded eleven bacterial chest infections, all cultured.

Continuous (prophylactic) antibiotics were tried for a time but infections were still a problem. When my respiratory function tests reduced it was decided to try intravenous immunoglobulin therapy (IVIG).  I got the definitive diagnosis of IgG2 subclass deficiency in 1990.  It was a relief to have a diagnosis and explanation why I was not feeling well.

The symptoms that led to my diagnosis

These were chest infection, which developed into pneumonia requiring hospital admission, recurrent chest infections and not being able to make an antibody response to vaccines.

My treatment for IgG2 subclass deficiency

I was on IVIG therapy for 12 years. For many years I managed IVIG therapy at home with help of friends. Infections were less frequent, minor and managed well with antibiotics. My respiratory function remained stable. So with improved health I had another healthy pregnancy, (another lovely daughter), worked full time and had a full and active life around the three weekly IVIG treatments.

The curve ball – coping with other health problems

At age of 45 years I was diagnosed with metastatic cancer and commenced a six-month course of chemotherapy. This was unrelated to my PID but was a challenge with an already compromised immune system. But my IVIG continued with additional medication to boost my immune system and I did manage to complete eighteen rounds of chemotherapy with some inpatient stays and intravenous antibiotics for infections. And the best news of all my scans showed no active cancer!

Changing from IVIG to subcutaneous IgG for my PID

At this point with continuous IVIG treatment for cancer it was suggested I might try subcutaneous IgG for my PID as it would be less strain on my veins. So I have now been on subcutaneous IgG for 10 years. I do it twice a week and it takes about 90 minutes each time. I use the time to sit, relax and enjoy catching up with TV programmes or reading.

My infections continue but are fortunately they are not serious and respond to antibiotics, mainly oral antibiotics, but occasionally a course of IV antibiotics is required.

The amazing support I have received

I have been supported by an infectious disease consultant (same one for 25 years!), an immunologist for 17 years (but unfortunately not for the last five years) a haematologist and clinical nurse specialists. It has been great to have this support especially when it was complicated with two health conditions and on chemotherapy. To feel able to call the nurse specialists if I have any worries has been superb.

Why joined up care was so important to me in dealing with my health problems

When I was on chemotherapy my oncologist, infectious disease consultant and immunologist were all in discussion about aspects of my treatment plan. My immunologist visited me at home with the home therapy nurse to discuss my treatment and they were so supportive and I felt available to answer any questions or concerns.  At that time I was a single parent with two children aged 9 and 14 years diagnosed with what was seen, as a terminal diagnosis and this joined up care with a supportive team was just great.

Living a full and enjoyable life and knowing when to rest up

As I write this I am struggling with an infection so this is not the most positive view on having this condition. I feel tired with cough and low energy. I am frustrated with having had to take time off work and miss a social event I was looking forward to but realise I must rest to improve and feel better.

However this is not usual picture of my life. I have a full and enjoyable life. I now work part-time as I could not have managed full time with two long-term conditions with treatment, treatment side effects, infections and all hospital appointments.  I continue on IVIG treatment for cancer three – weekly and subcutaneous IgG twice a week. I travel often with my husband as it is one of our great interests so I manage to take subcutaneous IgG with me and I now have some lovely photos of views while on treatment.

I enjoy walking my dog on the beach; swimming; meeting my daughters or friends for lunch and chat; cinema and art galleries; and an interesting job.

My top tips

Live life well, enjoy and appreciate the present. Look after yourself and stay as active as you can.

My wish list for helping people affected by PID

Meeting people over the years with PID I realise how fortunate I was to have an early diagnosis and appropriate treatment to prevent damage from repeated infections. My wish is for improved awareness of PID, early diagnosis and treatment.

Posted November 2014. Photograph kindly supplied by courtesy of The Daily Record.