My CVID Story - Sam
Feb 9, 2014 16:42:25 GMT
Post by s162216 on Feb 9, 2014 16:42:25 GMT
As your admin, I thought that you might perhaps appreciate my CVID story:
I wouldn't exactly call my eventual diagnosis with CVID 'normal' compared to most on here.
In fact I hardly suffered from infections (or so I/everybody thought) when I was a child, or teenager, apart from once when I was 3 and horsefly bit me above my eye. This quickly turned into a golf ball sized swelling, and resulted in me having to have a stay in hospital for IV antibiotics, but other than that I never really had any serious infections. I got all the usual childhood diseases like chickenpox etc, and the occasional infection like everybody else, but nothing that anybody really thought was concerning.
Years later though in 2010 when I was 18, I had another blood test to check for ceoliac disease, which a lot of people were convinced I had as my mum suffers from it, and I showed most of the common gastrointestinal symptoms of it. I had in previous years had (and been 'inconclusive') the blood test several times, and had 2 gastroscopies both of which were negative.
The result of this blood test came back as inconclusive again, and somebody thought to check my IgA level. It was practically zero... and then they subsequently tested my total immunoglobulin levels... all of them greatly reduced compared to what they should be. This resulted in a quick referral to the Immunology department at Addenbrookes Hospital, Cambridge, and a series of other tests which ended up showing me to have lost my immunity to everything I had been previously vaccinated against (except tetanus – a useful one!), and me not showing hardly any response to vaccinations against pneumonia (and another one which I forget at the moment).
I went back to Addenbrookes for a consultation about the results of the tests, and was told that I likely suffered from a condition called Common Variable Immunodeficiency (CVID), and that it was likely that I would be required to have IgG infusions for the rest of my life. Both my parents and I were shocked at this as neither of us thought I suffered from that many infections, and I will admit that I was quite worried (although the PiA literature that the consultant gave me was immensely helpful in quelling some of my fears). It was just unfortunate that I happened to be going to university in 2 weeks, but Addenbrookes were quickly able to arrange for me to be treated for CVID at the Queens Medical Centre (QMC) in Nottingham (good thing that I happened to get into a university which had a hospital on its doorstep that had a clinical immunology department!).
I moved to university in Nottingham, and shortly saw my new immunologist at the QMC, who asked me how many infections I had usually per year. I didn’t think that 2-3 upper respiratory tract, and one or two chest, or 1-2 skin (from my subcutaneous insulin pump as I’m a Type 1 Diabetic) infections seemed abnormal, but she was concerned, and coupled with my IgG level of 3 g/L agreed with Addenbrookes that I needed immediate IgG treatment. Luckily the day case clinic for IVIG at the QMC was on Wednesday mornings every week, which happened to be the one day I nearly always had off at University. I shortly went along for my first infusion, and my worries and fears seemed very prevalent until they cannulated me and the infusion got going, which went very well. The 3 specialist immunology nurses were all very kind and caring, and really helped me to adapt to having the infusions; the other patients were also just as helpful as it was comforting to be around others who were in the same situation, and had been having it for years in some cases. On the whole all of the staff and patients were very supportive, and the whole atmosphere was one of comfort and friendliness. Everything was very sociable, and it was typical for someone to bring in some cake etc to share around all of which helped, and rather than dreading the infusions like I expected I actually found them to be something to almost look forward to.
I initially had the infusions every week, and after 3 sessions when it was concluded my IgG levels were high enough between infusions I switched over to having it every 3 weeks. They started off with me on a low infusion rate, which was raised every time to see what I could tolerate; after a few sessions I got a severe headache after having the infusion so they cut the rate back down to the previous one, and subsequently having no headache afterwards I’ve stuck at that rate ever since. In the holidays when I was back at home I would go back to Addenbrookes for the infusions although the setup there is very different (one general infusion bay administering anything and everything) and I will admit that the long journey and lack of social environment (I’ve never actually met a PID patient there more than once) has meant that I’ve never really enjoyed going there that much.
True to what I was told, the IVIG cut down the amount of infections I experienced drastically, and I’ve not actually had a chest infection since I started it. Most of the time I usually only have one or two upper respiratory infections per year, but that’s probably because that area is more protected by IgA than IgG, and currently IgA cannot be replaced; these are easily treated with antibiotics. After a few months on the IVIG, one of the immunology nurses asked me if I felt any different, and for a moment I had to think… in the end I answered that I felt ‘different’, but at the time could not resolve why. Eventually I worked out that it was simply because I had more ‘energy’ and didn’t feel tired anymore, which was something I had not really noticed before, but thinking about it I always used to feel absolutely shattered at the end of a school day.
It’s been just under 3.5 years now since I started the IVIG, and having now finished my Pharmacology degree (with a 1st Class and an award for excellence!) I’m now trying to break into the biotech/pharmaceutical industry. I’m currently having to travel to Addenbrookes every 3 weeks for the IVIG, but other than that I have no complaints as my life is very different to what it could have been if I had not been unexpectedly diagnosed early compared to most patients – plus I would have never started up this forum, but that’s another story!
Sam
I wouldn't exactly call my eventual diagnosis with CVID 'normal' compared to most on here.
In fact I hardly suffered from infections (or so I/everybody thought) when I was a child, or teenager, apart from once when I was 3 and horsefly bit me above my eye. This quickly turned into a golf ball sized swelling, and resulted in me having to have a stay in hospital for IV antibiotics, but other than that I never really had any serious infections. I got all the usual childhood diseases like chickenpox etc, and the occasional infection like everybody else, but nothing that anybody really thought was concerning.
Years later though in 2010 when I was 18, I had another blood test to check for ceoliac disease, which a lot of people were convinced I had as my mum suffers from it, and I showed most of the common gastrointestinal symptoms of it. I had in previous years had (and been 'inconclusive') the blood test several times, and had 2 gastroscopies both of which were negative.
The result of this blood test came back as inconclusive again, and somebody thought to check my IgA level. It was practically zero... and then they subsequently tested my total immunoglobulin levels... all of them greatly reduced compared to what they should be. This resulted in a quick referral to the Immunology department at Addenbrookes Hospital, Cambridge, and a series of other tests which ended up showing me to have lost my immunity to everything I had been previously vaccinated against (except tetanus – a useful one!), and me not showing hardly any response to vaccinations against pneumonia (and another one which I forget at the moment).
I went back to Addenbrookes for a consultation about the results of the tests, and was told that I likely suffered from a condition called Common Variable Immunodeficiency (CVID), and that it was likely that I would be required to have IgG infusions for the rest of my life. Both my parents and I were shocked at this as neither of us thought I suffered from that many infections, and I will admit that I was quite worried (although the PiA literature that the consultant gave me was immensely helpful in quelling some of my fears). It was just unfortunate that I happened to be going to university in 2 weeks, but Addenbrookes were quickly able to arrange for me to be treated for CVID at the Queens Medical Centre (QMC) in Nottingham (good thing that I happened to get into a university which had a hospital on its doorstep that had a clinical immunology department!).
I moved to university in Nottingham, and shortly saw my new immunologist at the QMC, who asked me how many infections I had usually per year. I didn’t think that 2-3 upper respiratory tract, and one or two chest, or 1-2 skin (from my subcutaneous insulin pump as I’m a Type 1 Diabetic) infections seemed abnormal, but she was concerned, and coupled with my IgG level of 3 g/L agreed with Addenbrookes that I needed immediate IgG treatment. Luckily the day case clinic for IVIG at the QMC was on Wednesday mornings every week, which happened to be the one day I nearly always had off at University. I shortly went along for my first infusion, and my worries and fears seemed very prevalent until they cannulated me and the infusion got going, which went very well. The 3 specialist immunology nurses were all very kind and caring, and really helped me to adapt to having the infusions; the other patients were also just as helpful as it was comforting to be around others who were in the same situation, and had been having it for years in some cases. On the whole all of the staff and patients were very supportive, and the whole atmosphere was one of comfort and friendliness. Everything was very sociable, and it was typical for someone to bring in some cake etc to share around all of which helped, and rather than dreading the infusions like I expected I actually found them to be something to almost look forward to.
I initially had the infusions every week, and after 3 sessions when it was concluded my IgG levels were high enough between infusions I switched over to having it every 3 weeks. They started off with me on a low infusion rate, which was raised every time to see what I could tolerate; after a few sessions I got a severe headache after having the infusion so they cut the rate back down to the previous one, and subsequently having no headache afterwards I’ve stuck at that rate ever since. In the holidays when I was back at home I would go back to Addenbrookes for the infusions although the setup there is very different (one general infusion bay administering anything and everything) and I will admit that the long journey and lack of social environment (I’ve never actually met a PID patient there more than once) has meant that I’ve never really enjoyed going there that much.
True to what I was told, the IVIG cut down the amount of infections I experienced drastically, and I’ve not actually had a chest infection since I started it. Most of the time I usually only have one or two upper respiratory infections per year, but that’s probably because that area is more protected by IgA than IgG, and currently IgA cannot be replaced; these are easily treated with antibiotics. After a few months on the IVIG, one of the immunology nurses asked me if I felt any different, and for a moment I had to think… in the end I answered that I felt ‘different’, but at the time could not resolve why. Eventually I worked out that it was simply because I had more ‘energy’ and didn’t feel tired anymore, which was something I had not really noticed before, but thinking about it I always used to feel absolutely shattered at the end of a school day.
It’s been just under 3.5 years now since I started the IVIG, and having now finished my Pharmacology degree (with a 1st Class and an award for excellence!) I’m now trying to break into the biotech/pharmaceutical industry. I’m currently having to travel to Addenbrookes every 3 weeks for the IVIG, but other than that I have no complaints as my life is very different to what it could have been if I had not been unexpectedly diagnosed early compared to most patients – plus I would have never started up this forum, but that’s another story!
Sam
