Since my last post, Madison has had 2 more cardiology appointments. Dr. Everitt continues to deliver perfect news each time. And I continue to leave each appointment with the hugest smile on my face! Our only small, very small hiccup is Prograf!
For those who don't know... Prograf is an immunosuppressant medication. By suppressing Madison's immune system then her body is less likely to reject her new heart. It is because of medications such as Prograf that can allow Madison to get sick easily (because her immune system is weakened) and that is one reason why we stay home ALL THE TIME..
Thanks to Prograf, we still have appointments twice a week. We have never been able to get her levels to the correct level that they need to be.
Wait, Timeout, Back-up... One mistake that her medical team and I have discovered is that Madison has been taking the generic form of Prograf. It's called Tacrolimus. Mark and I don't remember anyone telling us, or reading any material that said not to take the generic form. We had no idea! ggrrr! (Please tell me that this has happened to somene else..) I remember our pharmacist asking if we would like generic or brand name. I wasn't thinking insurance or cost or anything. I simply said, 'generic please' cause that's what I always say. I didn't even think of asking Emily or Dr. Everitt. Apparently the generic form doesn't absorb well. There are a couple other meds that Madison takes in a generic form and those are fine. It's just the darn Prograf!
So, beginning tomorrow... we are switching to the real Prograf. This is going to be a little tricky as Madison is on a high dosage of Tacrolimus and probably doesn't need that much of the real stuff. She will probably have blood draws every couple days unil we get her level where we need it. Dang it!
In regards to Madison's mood change that I had mentioned in the previous post... she's teething! Note to self: No need to chase daughter around the house with a stethoscope when teething.. it only make matters worse. Lesson learned.
Again, thank you to all of our friends and family for your prayers and support. We love you.
4 months ago
6 comments:
I am with you and your stethoscope. Hope is teething as well and I have thought some bad 'heart' thoughts, rather than thinking about the obvious...teething. I have 2 older boys, so you would think I would remember 'normal' baby stuff.
You continue to be in my thoughts and prayers.
Hahaha, love your 'note to self', so funny. Good luck with the medication change, no fun!
Your valentine was so cute! Thanks for keeping us in mind. I hope that things keep going great and the teeth keep coming!! Can't wait to see you and have a diet coke! Lots of Love!! Andrea
That is really funny about the difference between Tacro and Prograf. We have never noticed a difference between the two meds, and we have been told that there is not difference. We do, however, have to make Beckham fast and hour before and a half hour after he takes the med. I know it sounds weird, but we almost never have problems with it because of the fasting. Do you do this?
So glad that her heart is doing so well! Good luck with lock down...it never gets easier!
-Kim
I love your Valentines Day card! It is perfect in every way!
Wait, HOW many meds is she on?? Aliyah is only 5 weeks out from transplant and she's only on 2 immunosuppressants - cellcept and neoral, asprin & prevecid. Our transplant center said they are very motivated to get kids off medication as quick as possible. So if you don't mind my asking, what is Madison taking? On one hand I'm really thankful that she's on less, but it makes me wonder if she really SHOULD be on more.
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