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Little Tolvaptan quirks

Due to the risk of 'serious and potentially fatal liver injury', the dispensation of Tolvaptan is very closely monitored and the PHARMACIES THEMSELVES need to be certified under the Risk Evaluation and Mitigation Strategy ('REMS') Program.

Because of this, there are currently only three specialty pharmacies in the US that are certified to fulfill Tolvaptan prescriptions: AllianceRx (Walgreens), Avella (Optum) and PANTHERx.

If you're ever in a situation where you need to go through a specialty pharmacy, check out online reviews to see how others have fared from a customer service standpoint. SERVICE MATTERS! I queried members of the Tolvaptan Community on Facebook when I had to choose. Based on their recommendations, I decided to try Avella.

As I'm quickly approaching my one month anniversary of taking Tolvaptan, I was pleasantly surprised to receive a call last week from Avella. A very personable customer service rep asked me about my experience so far, making note of any side effects I'd experienced. [Side Note: it's so nice to talk to someone who actually 'gets it' - or has at least been trained to understand what we're going through]

She also noted that my doctor had only placed a one month prescription and that she'd already reached out for a renewal and that they'd be contacting my insurance for pre-approval if my dosage increased.

Wow! A proactive company. #love

By Friday I'd received a call back from the company (which I didn't notice until Monday afternoon - oops). I returned the call first thing Tuesday and am currently waiting for my next day package to deliver my next month's meds.

No muss. No fuss. Just solid service and delivering on a promise. The 'hassle' of going through a specialty pharmacy is actually worth it.

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And so it begins

At my last appointment, the nephrologist actually offered to give me a referral for transplant. And then a week later I got THIS in the mail from my insurance company. Crap! It's getting real now. If something like that doesn't take the wind out of your sails, I don't know what will. Granted I had let my doctor know a couple of months ago that I wanted to be screened and ready to go as soon as my eGFR hit 20. Did I think it would be this year? No. My estimates were three years from now. Yet the combination of the four point eGFR drop + the transplant referral leads me to believe that my DOCTOR believes I should hit 20 within the year. I don't think I'm going to be able to last until the artificial kidney comes out. :-(