Tuesday, January 29, 2013

In the right direction

I had a GREAT appointment with my nephrologist today.  I got the results of my labs & my protein is down to .8 grams.  I was actually kind of suprised because, although I have been feeling really good, I still swell A LOT.

Dr. R wanted me to go back on 5-10mg of prednisone in November.  I asked him to give me a couple of months to loose the weight.  He said I had until now to either be below 1g of protein or I had to go back on. So .8g isn't super great but its under 1g!  So NO PREDNISONE!  Yay!

The only puzzling thing about my labs is that my Albumin (blood protein) isn't going up.  That is contributing to my swelling.  So I have to repeat my labs in mid-March to see if it goes up.  My white blood cell count is pretty low too but, even with everything going around, I have been pretty healthy.  I got that cold over Christmas that turned into a sinus infection, but who didn't?   So he said he wouldn't worry about that too much.

We talked a lot about the what ifs... what if I don't get better or get worse... well he's totally on board for a new treatment called Rituxan.  But I'd have to have a biopsy first to make sure its worth it.  Rituxan has been really successful for a lot of people but it increases your risk of getting Lymphoma later in life.  So he wants to be sure I really need it.

We also talked about what happens if I continue to get better - how soon can I start trying to get off Cyclo.  He said if I'm under .5g in March, we can lower my dose & see what happens.  That'd be nice!

He also wants me to do a bone scan because I was on Prednisone for longer than 6 mo.  But I'm going to wait on that because my insurance BLOWS.  I want to see if I need a biopsy and then Rituxan so if I need them, I can do all 3 in the same year & only pay 1 deductible for all.

Anyway, sorry - super boring - but that's the update & I'm happy!  I REALLY love my doctor.  He & his nurses are good to me.  And I'm EXTREMELY happy that I don't have to go back on Prednisone.  I hate that stuff.

5 comments:

Clint said...

Yea! I'm glad things are going in the right direction! No prednisone is great news. I'm so glad you love your doctor! You are amazing!

Clint said...

Sorry . . . that comment was from me (Linsey). For some reason my e-mail address shows up as Clint's name when I post to blogger. LOL.

Amy said...

That is good news! It's always great to be heading in the right direction!

Michelle said...

yay! no more prednisone! I'm looking forward to that day so I can look less like a balloon on two sticks :)

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