My 'Specific' Story
Jan 13, 2015 14:19:21 GMT
Post by floopyjim on Jan 13, 2015 14:19:21 GMT
I thought I would share my story here as well as I found that a lot of people who post here have CVID - I, however, do not. I have an immune deficiency that would normally be treated with just antibiotics.
I was often sick as a child and as I got older, lots of ear infections, asthma, bronchitis, lower chest infections, sinus trouble, etc but the diagnosis of a PID didn't come until later in life (I'm now 44).
Approx 3 years ago, I got the flu (again!), this time, I went deaf for 6 weeks (inner ear and eustation tube infection) and had a terrible cough, tiredness and breathlessness that didn't go away even after the doctor said I was better. All doctors I saw at the time decided it was a side effect of one of my high blood pressure tablets - even I was convinced. My cough became a way of life for almost 3 years until a year and a half ago my chest got very painful and I found it difficult to breathe and talk and my peak flow went down to 300 (I'm normally 650). I had many nebuliser doses whilst being watched by a new doctor at my surgery who was convinced the cough shouldn't be there. This new doctor was concerned enough to phone for an ambulance - the ambulance was late and the doctor decided to drive me to A&E herself!
After passing out in resus whilst on oxygen and my oxygen sats and heart rate were at silly levels, I was transferred to Glenfield Hospital in Leicester who diagnosed pneumonia. I stayed in hospital for over a week and attended the difficult asthma clinic at Glenfield.
On my first visit to the clinic, the consultant looked at my notes and said, very confidently that he thought I had an immune deficiency that was causing me to have many, many chest infections and referred me to the immunology clinic at the Leicester Royal. I was also tested to see if I had asthma - it turned out I hadn't (even though various GPs over the years were adamant that I had.) I have Inflammatory Airway Disease - it's like asthma without the allergies. In the meantime I had a High Resolution CT scan to look at my lungs more closely - that showed I had Bronchiectasis - a widening of the lower airways along with scar tissue that was causing my cough.
I had an immune system challenge called a Pneumovax II test (a pneumonia vaccine that should result in a response). The results of which showed no reaction to the test. I was then put on a prophylactic antibiotic to combat the infections - I was getting something in the region of 1 bad infection each month or so and smaller infections every other week. I was diagnosed with a Specific Antibody Deficiency with Normal Immunoglobulins (SPADNI) - my immune system has a 'blind spot' (personally I think it's very confused as well!). After lots of different antibiotics and 5 hospital admissions later, the antibiotics were not keeping the infections at bay so I was offered SCIG - apparently it is quite rare for SPADNI patients to need immunoglobulin replacement therapy so I'm now on a trial for a year.
After the infusions had started taking effect, I have been infection free for almost 11 weeks.
It has taken a while to get used to sticking needles in myself but I'm getting there.
SCIG has changed my life for the better, I still get tired and cough a bit but my other meds mostly take care of that. I will always have rubbish lungs but I'm not eating hospital food anymore!
James.
I was often sick as a child and as I got older, lots of ear infections, asthma, bronchitis, lower chest infections, sinus trouble, etc but the diagnosis of a PID didn't come until later in life (I'm now 44).
Approx 3 years ago, I got the flu (again!), this time, I went deaf for 6 weeks (inner ear and eustation tube infection) and had a terrible cough, tiredness and breathlessness that didn't go away even after the doctor said I was better. All doctors I saw at the time decided it was a side effect of one of my high blood pressure tablets - even I was convinced. My cough became a way of life for almost 3 years until a year and a half ago my chest got very painful and I found it difficult to breathe and talk and my peak flow went down to 300 (I'm normally 650). I had many nebuliser doses whilst being watched by a new doctor at my surgery who was convinced the cough shouldn't be there. This new doctor was concerned enough to phone for an ambulance - the ambulance was late and the doctor decided to drive me to A&E herself!
After passing out in resus whilst on oxygen and my oxygen sats and heart rate were at silly levels, I was transferred to Glenfield Hospital in Leicester who diagnosed pneumonia. I stayed in hospital for over a week and attended the difficult asthma clinic at Glenfield.
On my first visit to the clinic, the consultant looked at my notes and said, very confidently that he thought I had an immune deficiency that was causing me to have many, many chest infections and referred me to the immunology clinic at the Leicester Royal. I was also tested to see if I had asthma - it turned out I hadn't (even though various GPs over the years were adamant that I had.) I have Inflammatory Airway Disease - it's like asthma without the allergies. In the meantime I had a High Resolution CT scan to look at my lungs more closely - that showed I had Bronchiectasis - a widening of the lower airways along with scar tissue that was causing my cough.
I had an immune system challenge called a Pneumovax II test (a pneumonia vaccine that should result in a response). The results of which showed no reaction to the test. I was then put on a prophylactic antibiotic to combat the infections - I was getting something in the region of 1 bad infection each month or so and smaller infections every other week. I was diagnosed with a Specific Antibody Deficiency with Normal Immunoglobulins (SPADNI) - my immune system has a 'blind spot' (personally I think it's very confused as well!). After lots of different antibiotics and 5 hospital admissions later, the antibiotics were not keeping the infections at bay so I was offered SCIG - apparently it is quite rare for SPADNI patients to need immunoglobulin replacement therapy so I'm now on a trial for a year.
After the infusions had started taking effect, I have been infection free for almost 11 weeks.
It has taken a while to get used to sticking needles in myself but I'm getting there.
SCIG has changed my life for the better, I still get tired and cough a bit but my other meds mostly take care of that. I will always have rubbish lungs but I'm not eating hospital food anymore!
James.
