Tommy’s story about life with hypogammaglobulinemia

Hello everyone, I was diagnosed with hypogammaglobulinemia seven years ago after 54 years of trying to get to the causes of my ill-health. 

My younger years

I was a premature baby and within the first few weeks of life I developed pneumonia and ended up being in hospital for a long time. As a child I was sick all the time. I suppose I would be considered ‘a failure to thrive’ baby in today’s terms.  I could never sleep with a pillow, as this would cause nosebleeds. I also suffered from chronic sinusitis.

Before the age of eight I developed another bout of pneumonia. After another stay in hospital I was given iron tablets which did help with my energy levels, and I started to get stronger, but still caught had lots of colds and bouts of flu. I noticed every time I would reach a certain weight, I would get ill.  Thinking back I think my body just could not cope with the extra few pounds I was gaining. I was very thin for my age. Family doctors did not know exactly what the matter with me was but put my nosebleeds down to ‘pernicious anemia’. Athletics, boxing and life as a teenager

When I was 14 one consultant prescribed some little red tablets. I never found out what they were but they were referred to as blood tablets. I had energy I never knew before!  Now I felt great, I won the school cross-country trials running for Cardiff schools Youth and Wales.  I started boxing and although a lot stronger I still didn’t have those energy levels required.  I was still getting lots of colds and every time my weight picked up or my fitness levels, I was sick again, it was so frustrating.

Not being believed

I know some doctors just did not believe me when I gave them my symptoms of painful joints, numbness in my fingers legs and toes, nose bleeds, very tired and indigestion cramps and sinusitis. They just did not understand what was the matter with me. In 1979 I was in bad shape but I forced myself to go to work a steel fixer, a very hard manual job, I had painful hands, fingers and other joints and still had the nosebleeds. I don’t know how I got through those days.

Hospital again!

Then things came to a head.  I collapsed with a massive nosebleed and an ambulance was called rushing me to Newtown Hospital in Powys. For 3 days I was in and out of consciousness and then rushed to Bronglais Hospital in Aberystwyth and transferred to intensive care. To be honest it was a close call as to if I would make it but I’m here to tell the tale! The medical staff were amazing.

I was started on injections of vitamin B12 to treat my pernicious anaemia and I responded very quickly. After a few weeks I was feeling stronger and bit-by-bit I got myself back into good shape.  I had to go to the doctors once a month for my vitamin B12 injection and this was to become a permanent thing for the rest of my life. I was just so determined to get better! I started walking, then running, and then I took up boxing again and boxed all over Wales for Newtown, Powys The Highfields in Cardiff and Prince of Wales boxing club, ending up fighting for Wales in 1983.  I even did a marathon in Birmingham - 26 miles!

But then I started with the same old symptoms resulting in regular visits to the doctor and having to have antibiotics 3 or 4 times a year.  Over these years I’d changed my career at least 3 times to make coping with my illness easier.

Eureka - pin-pointing that my immune system wasn’t working properly!

In 2007, I was referred to Doctor Nash at Llandough Hospital to investigate if I had arthritis in my joints.  After another load of tests this was ruled out but then Dr Nash referred me for tests with Consultant Stephen Jolles at the University Hospital of Wales Cardiff.  I remember vividly going back to Dr Nash’s clinic and him saying we have turned up some interesting results on you, we have discovered your immune system is very low and on a scale of 1 to 10 yours is 1!  I thought at last people will understand that I am not just putting this on. I will be grateful to Dr Nash for the rest of my life. It had taken 54 years to get to the root of my health problems. 

A diagnosis and the right treatment

My next appointment was with Dr Stephen Jolles. After more blood tests, I was diagnosed with hypogammaglobulinemia. Getting the diagnosis was a huge weight off my shoulders. I had been from pillar to post, had so many tests and felt, at times, that no-one believed me and it got me down.

I now have immunoglobulin infusions every three weeks at the Immunology Centre at the University Hospital of Wales, Cardiff and I need to take antibiotics three times a week. This is for the rest of my life.  I also have other antibiotics to take for 14 days if I get a break through infection. I have been having treatment now for the last five years, without which I am sure I would not be telling my story.

I am so grateful to the amazing staff that care for me.

How I feel now

I’ve got a better quality of life now and not getting so many infections and wished this could have been diagnosed earlier in my life, or at birth, as it has held me back so much.

My wish list

  • Measures to reduce diagnostic delay so that other people don’t have to go through my long journey.
  • Don’t be afraid to go to your doctor ask questions, and make sure all tests are carried out.

Posted June 2015