End of meds, cankles and a clinical trial!

Let's review, shall we?  Living with this kidney disease has been....let's just say "challenging" as of late.  I never know what physical freakiness I'm going to wake up to anymore, which might be part of the reason that I dread waking up.  Every single morning starts with a slight headache and swollen feet.  Thankfully, the headaches have been easing up, but the swelling is not.

Sadly, most people can't even tell that I'm living with this crap.  Look at this picture below....can you tell that they're swollen?
Can you tell now?
Nearly every frickin' day I deal with this...some days are worse than others..I just never know.

Some good news, though, is that I'm done with prednisone...and pretty much any other immunosuppresant in thee near future.  I will slowly start to feel more like myself again, and THAT'S something to look forward to.

And some GREAT news is that I started screening for a Clinical Trial.
How interesting is it that one of the drugs in the study is produced by Eli Lilly?  I found this out today and thought that was pretty cool.  I'll be going through Cincinnati Children's Hospital for the trial (which is funded by NIDDK).  The overall duration of the study is 5 years with 178 patients (hopefully :) with the trial part of the study lasting 6 months.  Today was the screening, and then there will be 2 baseline appointments, and then the trial begins.  Today was a lot of blood work and medical history, as most of the visits will be.  Hopefully I can do some of this through work to cut down on travel and missed time at work.  I met the regional study coordinator and the lead Nephrologist, and they are both fantastic!  So friendly...and so far I've got nothing but positive things to say (which is MUCH different than my frustrating experience at Cleveland Clinic).  I'm excited and cautiously optimistic.  Even if this study doesn't help me, the data gathered can be used to help others like me, which is also incredibly important.  We'll be waiting for IU Pathology to get my biopsy slides to Cincinnati, and then we'll go from there.  I hope to get today's lab results by Friday.  Knowing my numbers makes me feel like I have the tiniest sliver of control.

I'll keep updating here as the study progresses.  Wish me and the study luck!

1 comment:

Eva said...

Sadly this post has no comments. That's because most people, the people who have no idea how it feels to be sick, they want to ignore it and pretend it's not there. They only want to see they happy posts. That's why we usually suffer in silence. I, like you started a FSGS blog, except mine is private because the regular people in my life don't want to know about that part of my life so I reserve it for those who do :-).