I hesitated putting this in writing b/c I didn’t want to put anything bad “into the universe”, but my promise was to share with you all the good and bad about my transplant experience…
Today I have run into the situation that every organ recipient fears the most – rejection. It’s a huge needle that is popping my dreamlike bubble of post-transplant bliss…and it’s terrifying.
As anyone on anti-rejection meds knows, you have to stay on a very regimented medicine schedule that is imperative to the survival of your new organ or you risk the chance of your body rejecting it. You are not supposed to miss any doses. Well, due to the incompetency of my special meds pharmacy, my meds have twice been delayed and I have missed an alarming amount of doses that have now put Kirby in danger.
I just had a clinic visit today where they told me my bloodwork didn’t look good and my creatinine numbers were elevated. I’m supposed to go back for more bloodwork next week when they will decide if I need to get a biopsy. I have complete faith that my doctors will do everything they can to help me keep from losing Kirby, but there is still that fear. The fear of having to go through dialysis again, of having to be sick again, of having to go through the entire painstaking ordeal of a transplant again. I don’t want to go there again!
The most frustrating part is that this is due to something that is out of my control. I’ve done everything possible to be the most compliant patient, to follow all the rules in order to keep my kidney safe, and this pharmacy blows the entire thing to pieces with their inefficiency!
I am absolutely being very vocal to our company’s benefits team, our insurance company, the pharmacy, AND my transplant social worker to make sure that this doesn’t happen again. (They’re getting a good taste of my Irish temper coming to light!) We’ll soon see if our efforts are successful! If you have gone through something like this yourself, or know of anyone who has, please share any advice you have to give. I’ll happily take it!
For now, I’m asking for you to help send positive vibes and prayer that everything goes well and that we can keep Kirby alive and kickin’ for many many more years to come! It’s NOT his time yet! I will not allow it! *Enter me and Rick Astley singing to Kirby here…
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Things I’m thankful for today:
1. My office chair spins?
2. There is still hope!
3. Taco Casa – helps sooth the nerves… a bit.
4. As my friend, Kerrie, pointed out – if the situation was dire, they wouldn’t wait a week to see me, they would have pulled me in for a biopsy today! Very true…and I’m very thankful for that!
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