Hello, I’m 66 years old and was diagnosed with common variable immune deficiency (CVID) over three years ago after a long time of constantly being ill. This is my story of my journey to diagnosis and how I am now.

“I broke down at the clinic. I was extremely upset at the realisation that the infusions were for ‘life’!”

My frustration at always being ill

Ever since I can remember, I was a sickly child and could never understand why my brother and sister were always so much more healthy than I was. I was also a regular outpatient at Great Ormond Street Hospital from the age of three, due to nephritis contracted at the age of two.  My mother of course, didn’t have the answers as to why I was always unwell.

For years I had numerous sinus and throat infections and one summer, my sinuses were so bad that after antibiotics and more antibiotics, syringing and draining, it was decided that I should have an operation on them. It was only a temporary fix. Every winter I continued to be plagued with sinus infections and always had a standby prescription. (My doctor came to realise that it not only saved time but also that I would not abuse the NHS system and use antibiotics unless it was absolutely necessary.)  Compared to other people, I noticed that if I ever developed an infection through an injury, it seemed to take forever to heal. I also had constant skin problems, which used to make me feel quite depressed especially as I tried so hard to eat a good healthy, fresh diet. I was often frustrated and couldn’t understand what was going on.

Blood test results

Also, for as long as I could remember, every two years, I had blood tests done which revealed a low white blood cell count, sometimes with a reading as low as one. Nothing was ever done with this information; my doctor told me it was perhaps the ‘norm’ for me!

Eureka – a diagnosis!

In 2011, my then GP retired and my new GP took a close look at my notes and felt it was time to check out my bloods in more detail and sent me to the hospital to see the Haematologist. After more tests he then referred me to a specialist consultant in the field of PID. My treatment started in November 2011, that day!

Coming to terms with life-long therapy

Two months into my three weekly intravenous infusions, I broke down at the clinic. I was extremely upset at the realisation that the infusions were for ‘life’!  I felt that I had for years, done my level best to ‘look after’ myself through exercise and eating healthily and the hospital was the last place I wanted to be especially on a regular basis. The nurse who comforted me that day was very kind and assured me that this was quite normal to feel this way at this stage into the treatment.

Winters free of infections

Now well, my infections are few and far between and I enjoy winters without the trials and discomfort of sinus and throat infections. Although I am aware of the option to self-administer my treatment, I prefer to continue with my clinic visits.  I do not want to be reminded of PID on a daily basis in my home and I have some very inquisitive young grandchildren who come to stay frequently and would not like to make a mistake and leave any sharps lying around for them to find!

Today, I am much happier about the infusions and manage to fit them into a busy schedule which has included quite lot of travelling over the last couple of years.

I sometimes wish though that my mother was alive today so that I could share with her the results of those blood tests and frequent visits to the hospital and doctors. I’m sure she would have been relieved to know there was a reason for the years of poor health that I had suffered.

Living with PID and telling others

When my husband had to work for six months in New Zealand last year, the clinic in the UK organised for my treatment to continue whilst over there. This went very smoothly and the staff were efficient and caring.  As a retired person who is at the stage of wanting to spend a lot of holidays abroad, I am aware that I have limitations to do this without a lot of planning for my infusions.

Interestingly, it is only my immediate family and close friends who have been told about my diagnosis and at times it is hard for people to understand why I avoid them if they have a cold or other infections. On the one hand I want people to understand PID but on the other hand I don’t want them to ‘feel sorry’ for me.Those people that do know, struggle to fully understand because they see me as a fit and healthy person!  They don’t see how tired I sometimes get and the time that is spent at the clinic.

My top tip

A dear friend usually accompanies me when I have my consultations so that I have someone else to confer with afterwards.

Posted February 2015