So, let's see...I think I'll first start with my list of pills that I take every single frickin day....
- tacrolimus (Prograf) - This is an immunosupressant used to try to stop my kidneys from leaking protein
- Prednisone - the only reason I can figure that I'm taking this AGAIN is because all of the studies done with tacrolimus also included prednisone
- Losartan (Cozaar) - a blood pressure medication also used in aiding my kidneys to lessen protein leakage
- Doxazosin - another blood pressure medication used to treat my high blood pressure, which is caused in part by the tacrolimus (I was getting severe headaches)
- Buproprion (Wellbutrin) - because all of these drugs make me edgy
- Lexapro - for those episodes where I want to SCREAMMMMMMM.
- Lansozaprole (Prevacid) - heartburn
- Sulfamethoxazole (Bactrim) - an antibiotic I take all of the time because, when on immunosuppresants, I am much more susceptible to infection (and having a little girl in daycare means I'm a MAGNET for infection at this point)
- Singular - not kidney related, but another pill nevertheless
- Lo-ogestral (birth control) because if I were to get pregnant while on these drugs, it would be a very very bad thing
- Calcium - because these drugs leach calcium from my bones
- Multi-Vitamin - because they're just good for you
- Fish Oil Pill - heart healthy (and there's NO WAY I could eat that much fish to compensate)
- Probiotics - because the antibiotic that I'm on has wiped out all the good bacteria from my system, so I'm taking these in order to try to restore some balance
- melatonin - used to help me sleep
There are soooo many things I hate about this disease, but the uncertainty is the worst. I feel like I'm in a state of suspended animation...just waiting for the next set of labs to see what my future holds. Did my protein go down? Is the level of meds in my blood too high? How's my liver doing, by the way? Will I have to keep taking this, or am I out of options? Will I get to have another baby? Will Izzy get to be a big sis someday? When will my kidneys start to decline? Next year? 10 years? Never?
Sadly, there isn't a definitive answer for the last few questions. My doctors, at this point, don't want me to try to have another child...they say it's just too risky. As for my kidney function...no one knows what will happen, or when it will. Sometimes I wonder if it would've been better if I had never known at all, especially if I'm okay for 20 more years. Life has not been what I imagined it to be since being diagnosed...it changed, and I feel as though I'm being cheated.
Unfortunately, there just isn't enough information out there about this disease. And that's why I'm pleading with you to please consider donating to my fundraising effort for Nephcure. We are holding a walk on October 16th, 2010 at Broad Ripple Park. The walk is more symbolic in nature than physical, but it's so important to raise awareness about this disease and what Nephcure is doing to try to find a cure. The NephCure Foundation (NCF) is a non-profit organization dedicated to finding a cause and cure for Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS), which is the disease that I was diagnosed with most recently.
So please, consider donating to my cause. I would love nothing more than to see you all out there supporting me on October 16. You can register to walk with me at this link. You can sign up and create your own team and spearhead your own fund-raising effort. Or, if this is more than you have time to take on right now, no problem. Just add yourself as a member to my team (Team Lilla Loppan). There is no cost to register for the walk, but a donation to the cause is very much appreciated. If everyone donated $5 or $10 dollars, it really starts to add up. Please donate whatever you're able to. This money goes directly to Nephcure to fund research.
We have a very small group here in Indiana right now...we've had a hard time getting it off the ground, which is why it is so important that this walk be held. We need to raise awareness...we need to build a foundation for the future. We need to be there as a source of support for all of the people that suffer from these diseases and their families. I've met some wonderful people through this organization...people just like me. It's made me grateful to realize that I'm not alone, but also sad because there are truly so many of us out there. The only way to find a cure is to fund a cure, so please, consider donating. Thank you!