Update

Spent the morning at Kaiser having follow up appointments with my nephrologist and rheumatologist. Both consultations went well!

The kidney doctor went over some recent labs and explained that the reason for the elevated numbers on some of the tests were due to the damage that the Wegner's did to my kidneys.(damage to both the blood vessels and to the "filters"). He reminded me that while my kidneys will never be completely normal, I still have kidney damage, they still are healthy enough to last a long time at this level. Seems like any complications in the future can be managed with medication. The doctor seemed pleased at my progress and even said that he was optomistic- which is quite a statement coming from him ! (as it seems like he tends toward being pessimistic naturally).

Even with the good news, the doctors are quick to remind me that this is a chronic condition that I will be living with and managing the rest of my life. There is no cure for Wegners, just remission with hyper vigilence to monitor symptoms of possible relapses / flare ups in order to catch it early enough to take action. I have to be super careful of warning signs that the Wegners might be flaring up: watching for colds that won't go away, shortness of breath, coughing up blood, stomach pain...pretty much the same symptoms that I initially had that put me in the hospital. They seemed to be confident that they would be able to carch things early because I will continue to have monthly blood tests that will also show any relapses.

The rheumatologist said that my ANCA levels were negative which is a measurement of the Wegners. I have thee more weeks on the chemo drug and will be switching to a less toxic (fewer side effects) maintenance drug. I'll need to be on this for about a year. The doctor also reduced the Prednisone by another pill- so I am down to just 2 pills (8 mg) of that per day! In the hospital I was on 100 mg. (IV) daily and 4 months ago I was taking 12 pills (48 mg) a day! So grateful for the reduced dosage!

I am hoping to see a reduction in the Prednisone side effects soon- the swollen face and the diabetes are the two most troublesome ones I'm anxious to get rid of! And with the chemo about to end, I can look forward to my hair growing back- it has gotten very thin and the bald spots are getting harder to cover up. :)

Last week I fell on the pavement and hurt my back. (I think I hurt my pride more!) ;). Luckily I was with two friends who helped me up off the ground and took me home. I'm still really sore... maybe because I'm getting old or maybe because I'm still weak from being sick... not sure which, but it seems to be taking a long time to heal up!

Hoping to get lots of rest this week- gearing up for a Boomsma Girls' Road Trip to Phoenix at the end of the month to see my Mom and Zach and Andrea.

 

Posted with Blogsy