On Monday morning, 27 June I was back in the chemo unit of the Hervey Bay hospital having my monthly IVIG infusion, followed by an intra-muscular benzathine benzylpenicillin injection (after I have taken all my tablets and oral penicillin).
I noted on my unit appointment sheet that I am starting my fourth year of IVIG infusions. What an extreme rollercoaster ride it has been!!
After years of continually recurring infections in the lungs, liver, sinus, pneumonia, pleurisy, as well as subcutaneous granulomas and joint pain and inflammation, chronic anaemia, it was a relief when just over four years ago I was diagnosed with granulomatous variant of common variable immune deficiency, sub-class IgG4.
However, the damage has been done: recurring lobular hepatitis, bronchiectasis, interstitial lung disease, recurring pneumococcus etc, and two major operations.
Does the monthly IVIG help? - a little; Does the daily oral penicillin and the monthly injection of penicillin help? - well I'm not coughing up blood at the moment!!
Some days I feel fine, other days I feel I'm not going to get through the day.
I am grateful for a wonderful immunologist and an excellent private physician amd a GP who has little experience with CVID but is willing to listen when I tell him what I need.
However, it is difficult to explain how one feels to most people, even to my GP. When one is asked how they are feeling, how does one reply, without giving people a litany of health issue complaints, which they don't really want to hear and really don't understand. There are times when one feels so alone with the disease. Thank God for groups on facebook where sufferers can discuss their problems and have the support of fellow sufferers.
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