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Points for Reflection

1.Gary describes himself as an “expert patient”, who is able to assess and manage his pain levels. How could these be managed?

2.Look at the Expert Patient Programme – how useful could this be for your patients?

Activities

1.How would you manage CGD?

2.Consider the different types of blood transfusions and discuss their effectiveness, looking at the pros and cons of this treatment

Quotes

“I have to remain a positive person despite what I have been through; sometimes it has felt like I have been in prison when I have come out of hospital after illness.”

“I have never let CGD stop me from doing anything from jobs to going travelling. I always try to remain positive as this helps greatly especially through long bouts in hospital.”

“My message for anyone with a chronic disorder is try not to let it stop you doing anything and live life to the full.”

Further information

CGD Research Trust website: http://www.cgd.org.uk/

Expert Patients Programme website: http://www.expertpatients.nhs.uk/


Location: The Stories
Transcript

You can download the full transcript here

Gary’s story of living with chronic granulomatous disorder
A recessive X-linked condition that affects his immune system

I was diagnosed with CGD at the age of two after bouts of illness and having abscesses drained; one was the size of a man’s fist on my neck. I was then put on antibiotics but became allergic to the best drug for the condition, septrin. I have been on antibiotics my whole life and it is just a way of life to me now. I am now on trimethoprim, itraconazole, and cefalexin. CGD means my immune system doesn’t work properly so I can’t fight certain infections, particularly staphylococci infections.

There is a charity called the CGD Research Trust which has been very helpful in giving out information and helping to inform parents whose children have just been diagnosed with CGD. The most useful action was to employ a CGD specialist nurse; this helped greatly when I was admitted to hospital, and it helped to relieve the pressure on my parents as everything was sorted out.

The condition is X linked which means my mum carries the condition so my uncle could have had CGD too, but he received the other X and so did my brother.

Throughout childhood (5) through to my adolescence (16) I had various abscesses which appeared as lumps and grew into big boils (abscesses) which then had to be drained. These were on my groin, neck and one on the underside of my knee. In 1997 I had an abscess on my liver this took about 6 weeks to get rid of using intense intravenous antibiotics. The worst bout of illness occurred in 2000 when I was taking a year out after finishing my A levels I had worked from September to the end of January as a lifeguard and had just handed in my notice, as I planned on going travelling round the world for the rest of the year with a friend. But instead I spent nearly 4 months overcoming aspergillus which is a fungal infection on the lung. I was on intense intravenous antifungal and antibiotics drugs for about 2-3 months. After a long period the ball of infection in my lung had not decreased much in size. So it was decided that I should go up to London for blood transfusions to try and help me to overcome this infection. This was a different type of blood transfusion taking the donors blood out and spinning out the granulocytes which are a type of white blood cell and then putting the rest of the blood back into the donor. The donors were friends of ours from the village who had to be tested to make sure that their blood type matched mine. The blood was then infused to do the job of getting rid of the aspergillus, but as I had more transfusions my body produced antibodies against the blood and I had violent rigors. My body temperature also increased, to about 40 degrees which was dangerous so I ended up having a pain killer to relax me and ice under my arm pits. One of the nurses said my shakes were worse than people with malaria. This was one of the most positive experiences I have had of the NHS. When I had 7 transfusions another x ray was taken to see if the infection had decreased in size in my lungs and fortunately it had. This was a relief to me and the whole of my family. Having had aspergillus has meant that I am more prone to infection of the lungs.

This was confirmed in 2002 when I went to work on a summer camp in America set up by Camp America. I had already worked on the camp in 1999 and 2001. After coming off the plane and watching the World Cup game between England and Brazil, at some crazy hour in the morning, I started to develop a cough but no temperature. I thought nothing of it and thought it might just be jet lag. After a few days at the camp I got up one morning and was violently sick and had a temperature of about 39C. So I went to see the camp director and was taken in to hospital where I spent about 10 days of amazing treatment for what they think was bacterial pneumonia. My insurance company was excellent as I had taken out special insurance to cover me for my pre-existing condition. They wanted to fly out a doctor to take me back to England but in the end were content to fly out a nurse. I was flown back to England Business Class; the first and probably the last time this will occur. The annoying thing was that when boarded the plane I was offered champagne or orange juice I had to have orange due to the fact I was on so many antibiotics!! The nurse was great and gave me oxygen when I needed it as the infection had affected my lung function. I was checked out when arriving back in the UK this was when the CGD nurse was so effective, just taking all the pressure off everyone and being at the hospital at 7am on a Sunday morning to receive my dad and myself and to arrange check ups and possible admission to hospital.

I refused to let this stop me travelling and went back to complete a successful camp season in America in 2003. In 2001 I went to Australia and New Zealand for 3 months. This was an amazing experience, and in 2003 I went back to Australia to take part in 6 weeks of conservation projects with Conservation Volunteers Australia (CVA). This was as part of my degree, I now have a 2.1 (Bsc) joint honours degree in Environmental Biology and Geography (2004) and I am currently looking for work in the conservation environment sector.

I have never let CGD stop me from doing anything from jobs to going travelling. I always try to remain positive as this helps greatly especially through long bouts in hospital. I have had several visits to hospital throughout my 26 years of life, nearly all of my experiences in hospital have been very positive. My family have often commented ‘thank goodness for the NHS’. I only had the one negative experience in 2005 when I had my appendix out as I had appendicitis and an abscess. As I have been in hospital so many times I consider myself to be an ‘expert patient’, so I know how much pain I am in and how to give drugs intravenously. I was put in a private ward on the NHS due to there being no space on the other wards. When being admitted to hospitals I need a separate room as my immune system doesn’t work properly so having a room lowers the risk of picking up a separate infection e.g. MRSA. The nurses on the private ward didn’t like being advised about my disorder, and even told me that I wasn’t in pain.

I still remain positive about the NHS because I have been in hospital about 20+ times for various problems. Every experience has been positive and I can’t complain about the excellent treatment I have had.

I have to remain a positive person despite what I have been through; sometimes it has felt like I have been in prison when I have come out of hospital after illness. My parents and family have helped me get through some tough times, I couldn’t have asked for better more caring parents or family. I know it has been very hard for them at times. It can take time to get back to normal life! I am now looking for a job in the environmental conservation sector. This might not be the best route for someone with CGD as soil and leaves are not a good idea, as the risk of fungal and bacterial infection is high. But I just wear a mask and this lowers the risk but the risk it low anyway. My message for anyone with a chronic disorder is try not to let it stop you doing anything and live life to the full.

An update from Gary - 2007

I am now working as a Seasonal Park Ranger at a Country Park in Buckinghamshire. The last year has been a year of highs and lows; I have had a perianal abscess, and lost a job due to my contract expiring.

A further update from Gary - 2009

Since 2007 life has been very up and down. I have had various jobs including a job as a National Trust Warden on the Farne Islands which was challenging for someone with CGD as there was no running water but an amazing experience. This year, 2009, has been a tough year. I started a job in Scotland as a Centre Assistant but had a big breakdown with depression and anxiety. I have now got through this and have another job now. Life has been tough but I am determined to succeed. I am now thinking about looking into a bone marrow transplant and the possibilities there. I have an interview for a job coming up so watch this space!