Yesterday I met with the respiratory Doctor and we discussed my current situation.
He agreed that my diagnosis of BOOP relapse was the most likely cause of my drop in health.
Yay! I'm not completely paranoid after-all!!
I've lost 4kg in weight over the last two weeks, sadly none of it off my prednisone enlarged stomach! :(
My heart rate still rests at a rather rapid 105BPM, which is concerning, but I've borrowed a sports heart rate monitor and will be keeping an eye on it from now on. It could have been high for months, who knows.
The plan is to get me weened off this darn prednisone as soon as we can. To that end we have started on Azathioprine, an immunosuppressant that should suppress the inflamation in my lungs like the pred does but without quite as many side-effects. One likely side-effect however is bone marrow and platelet suppression, something I already suffer from so we are looking at regular blood testing to keep an eye on my blood counts. (My platelet count this week is 49, normal is 300-400, so there's not much room to move before I start leaking!)
I was pleased that the respiratory Doctor managed to get hold of my Haematologist on the phone while I was with him and the treatment plan was discussed by them both. Haematology will keep an eye out for my bi-weekly blood test results and contact me if there's a problem.
If my counts look safe in two weeks time we shall double the dose of Azathioprine and start reducing the prednisone.
From there we just have to hope that those pesky nodes in my pelvis stay dormant and don't wake up once I ween off steroids. Should take about a little under a year to ween off. Roll on next summer!
Sarah has me on a no wheat, no sugar diet to see if I have a yeast imbalance causing my skin itch. So far no change. I've come to the conclusion that sugar is the drug for the masses, It's in everything!!. I could hardly find a single item in the supermarket that did not contain it. One has to ask why do the manufacturers think they need to put sugar in mint sauce?? It's vinegar and mint FFS!! and that's just the start of it.
Not much else to report.. haven't shaved in a week, look like a scruff... don't care..
Cheers! ..Ron
2 comments:
welcome to team scruffy bugger!
a week is nothing ;)
hey.
Thank you for shareing:) Hopefully the new medication will work for you. I just wonder if you have tried to cut the carbs from your food? That can maybe have some positive effect on your lungs.
Love from Ravn in Norway.
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