We’ve heard that our transplant referral paperwork is being hand-delivered to the transplant team as we speak. As in TODAY. It’s weird how that feels like a milestone somehow and not necessarily a bad milestone. But not good either. Even though Dr. Caring insists this is a good thing.
We’ve also heard that the transplant team wants to handle the ins and outs of getting Gage started on growth hormones. We’re to take him to get x-rays of his hands, knees and hips for a baseline of growth.
And just so you know Dr. Google is not being very cooperative today. I’m trying to learn the side effects of growth hormones on children with acute renal failure and reactions with other medications. Too specific maybe? Ya think?
As a side note, as I was ordering refills on meds today and after rambling off the 6th refill number the pharmacy clerk said: "just how many more do you have?" Listen up clerk lady: I don’t like ordering them any more than you like writing them down for the pharmacist to fill. So shut up. And there are 3 more so just write them down. And deliver them tonight. Yeah, thanks.
[[[[[[[[hugs]]]]]]]]] I hate people who make stupid comments like that.
It’s hard enough to find info on growth hormone when you’re dealing with normal growth hormone crap. I know that what I have found has basically said that if the growth retardation is due to growth hormone deficiency then the side effects are minimal.
As for finding anything on reactions with other medications, I’ve found nothing. And my endos look at me like I am insane to wonder. Oh yeah as if adding in growth hormone to a lovely medication mix is automatically gonna be neutral.
Hey there….I recently decided to take the prednisone that was prescribed by the first of 3 doctors I saw about this unexplained swollen, rashy, itchy, eyesore of a ‘thing’ I’ve developed on my face since trying to take Tolvaptan for my kidneys. I lost the paperwork (since it’s now been 2 months since I filled the script!)so I fell into Walgreens to ask for a new print out of side effects, etc. The clerk gave me the third degree until I finally asked for the pharmacist! Geeze!
Now a side note about ‘the face’….the prednisone has now turned me fat and grumpy in addition to what was already ugly and I see zero improvement! Jerry is yelling for a ’specialist’ to take over the case. Would you let me know if you can think of one who knows what to do about a random localized skin reaction from a drug no one knows about?!!!! Dr. Rahbari thought it could take up to 8 weeks for this to clear up….we’re now working on 4 weeks post meds and it’s as lovely as ever….do you think this could become my Tolvaptan legacy….’woman remains scarred for life trying to save her kidneys and impact the PKD world!’
Sign….And life goes on!!!!
{{{{HUGS}}}}}
From the mom with two non-sick children, God bless you for all that you go through on a daily, sometimes hourly basis. There are times when I feel guilty for having kids that don’t require meds and who only see the doctor twice a year – tops. It just doesn’t seem fair; but I do know that Gage and Quinn are the luckiest kids in the world to have parents named Julia and Julian.
Much love,
Jody #1
Not much on my mind right now. I haven’t been up to anything. Today was a complete loss. That’s how it is. Not much exciting going on these days.
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