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.

Why I Blog

My heart is full this morning as I checked my comments on the last post & saw the one from Michelle in New Zealand.  I know its not everyone's choice to be an open book with illnesses or other trials in life & I honestly understand & respect that.  But, much to my mother's dismay, I've always been more than an open book.  Its just who I am.  And I've learned over the years that it can make people uncomfortable but it can also help people.  And that's why I do it.

When I got pregnant with my first baby, I told no one.  But then when I miscarried at 10 weeks & had to have a D&C, I told everyone.  Why?  Because I didn't want to be the crazy lady crying in church & no one knew why.  Because people knew what had happened, they were able to love & support me instead of question & whisper.  I also learned at that point that it allowed others who had experienced miscarriages & kept it private to talk to me because they knew I would understand.  It also helped my friends who had miscarriages after me for the same reason.  The same went for the infertility issues I had before I got pregnant with my twins. I've never regretted being so open about my health issues.  Sure, I get some weird/inconsiderate comments.  But those are easy to brush off when you know others have been helped.

I am grateful for the internet & blogging.  I love my FSGS group ladies with all of my heart.  I pray for them & think about them & I know they are concerned for me too.  I love how it connects us from all over the world. Comments like Michelle's make all of the hard stuff worth it.  So Michelle, if you read this-- THANK YOU!  And please email me so we can be friends! (saoldroyd@gmail.com)