Time To Reflect . . .

Today is Friday, 16 September and I have been thinking it is time to update my blog.

On Monday, 19th, I will go to the Hervey Bay chemotherapy unit for my intravenous immunogobulin infusion,  as well as an intramuscular injection of pure penicillin. It has been about four years since I was diagnosed with a severe immune deficiency (granulomatous variant of common variable immune deficiency).

In spite of the infusions, medication and injections there does not seem to be any improvement and it would seem that there will not be any, as the damage has been done to the lungs and liver, particularly.

I have had continuous strep pneumoniae, otherwise called pneumococcal pneumonia for as long as I can remember with almost no relief in spite of the penicillin I have been taking for the last few years. The infusions should be giving me some help, but does not and this is a concern.

I have been told by my immunologist and also my specialist that penicillin is the only drug that is effective against pneumococcus. I have bronchiectasis and also interstitial lung disease. I am now finding I have much less enegery and spending quite a lot of time during the day resting on my bed, reading.

The amount of IVIG I have been receiving is 24g and there is no possibility of having this increased. There is little point, as nothing seems to be defeating the lung and sinus infections I always seem to have.

I am also having to take sleeping tablets most nights to help overcome the pain I have in my legs and feet. Taking sleeping tablets help me sleep and I get about five hours of good sleep. I also have suncutaneous granulomas in my legs which are often itchy. Lately I have been having a lot of gut pain and will be talking to my specialists about this in October when I am scheduled to be reviewed by them.

So I am taking oral penicillin daily as well as heaps of painkillers, both orally and in suppository form.

So on Monday I will rock up at 8.30am at the day clinic and have my infusion and penicillin injection and see if there will be any improvement.