No joke, having a chronic illness requires so much time, effort, and management. I don’t know if this is the case in other states, but it sure as hell is here.
I was trying to get a refill on a medication from my doctor in PA. She said she had sent it to Walgreens here twice already. But they hadn’t received it, and the note in the computer said, “Denied by provider.” So I had to message her again with that info. She’s very nice but I could just hear her muttering in her head, “What the hell kind of hillbilly, swamp-water drinking [okay, bosque-water drinking], backwoods third world country IS this New Mexico?” Yeah, I mostly agree. Lots to love here. Medical crap ain’t part of that.
I got a message from her assistant saying that they called the prescription in so I should be good to go. All right. I went to my local Walgreens but… I couldn’t get it yet because it’s too soon. My insurance said I can’t refill it until June 8th. It’s a blood pressure medicine so I asked him if I should wait that long to take it (some blood pressure meds you just can’t stop taking. Bad things can happen). He said no, I really shouldn’t wait that long. The reason that this happened is because initially I was only taking one pill a day but then the doc upped it to two, but didn’t change the prescription. So of course I went through it twice as fast. I explained that to the pharmacist, and he said docs do that all the time with this type of result. I said, “Well, I’ll just pay for it.” “No problem but we’re getting ready to close for lunch now. Can you come back in a half an hour?” Nope, I couldn’t. I was heading to my standing Wednesday appointment at the cancer center, then heading 3.5 hours out of town for clinic today. But then a lightbulb went off in my head. Could I pick it up in Ruidoso, my destination for the evening? Well by golly, I could. So off I went.
Backtracking to Monday… I got a call from Walgreens specialty pharmacy about the Revlimid that was to be delivered to me (I was clearly wrong about it being the Kyprolis, but the oncology nurse manager person said I would be bringing it in with me. One of us was clearly confused. I’m sure it was me, but then again, she said she was new to oncology. Ha.). This phone call took 36 minutes. THIRTY-SIX MINUTES. Of my life. First of all, I called in, gave my info, then the woman said she would send me to a person who could help me. But instead, she put me back in the automated queue where I started from. So I got another person. Told her the same thing. She said she’d transfer me to someone who could help me. I said, “Am I going to get an actual person or am I going back into the automated system?” She said she’d stay on the line until I was transferred to a human. And it actually worked.
The woman with whom I spoke was very nice. But it just took forever. I don’t even remember all the questions she asked, except for setting up Kyle’s address as my ship-to address for the meds. After I spoke with her, I was transferred to a man at Celgene, the maker of the Revlimid. He was VERY nice, but man did he speak slowly. I imagine they are used to dealing with older people who maybe don’t hear well or process very fast (although these days I don’t process very fast). He had to ask me questions about my menstrual cycle (thank you menopause!) due to the potential for birth defects. He told me not to share this medication with anyone (at $1000 a pop? No worries there!). And he also said I can’t donate blood while on it and for four weeks after. Being anemic, I can’t donate blood regardless. I need all the blood I can get, but it was still interesting to know.
He then told me that these questions he asked me (and probably others) were part of the “survey” that I would have to complete every six months. Not too bad. I thought he was going to say monthly. Then he told me they had an app that I could download and just do it on there. “Now, would you like me to walk you through how to install the app?” “No thank you. I can do that.” “Well I’ll email you a sheet with the instructions in the event you need it. Do you know how to open an email?” Okay he didn’t really say that last sentence. Like I said, I think they’re used to dealing with people outside my demographic. BUT… as I mentioned, he was very nice and helpful. They’re dealing with people who have cancer with nearly every phone call. I’m sure they’re heavily trained on being nice.
Then he transferred me back to the first woman, and we confirmed the ship-to info, and she said it would be delivered yesterday. Okie dokie. Then I had to have a consultation with a pharmacist so I was transferred again. She reiterated much of what the gentleman from Celgene said about not sharing the meds, and also that if any pills were opened or damaged, I needed to call the manufacturer for replacements. That was about it for her. And then I was done with the phone call. Thirty-six minutes later.
Then the next day, Tuesday, I had a call from the University of Arizona specialty pharmacy. “Yes, we’re calling to schedule your shipment of your Revlimid.” Are ya kidding me? I told her I had already done all that yesterday. “For your Revlimid??” “Yep.” She was confused. She put me on hold, then came back on the line and said that for some reason, the order was placed with two different pharmacies but that I was good to go. My drugs should be arriving the next day.
Except they didn’t. (You saw that coming, didn’t you?) We’ll come back to this.
I got to the lab for my appointment, but I wasn’t really clear what was to be done. I thought I was just getting blood work to see if I needed the Aranesp shot but after my blood draw the nurse came and got me. I said “I’m confused. What are we doing today?” “We’re starting your Kyprolis treatment.” I didn’t even know it had been approved yet. But apparently it had.
For the first go-round, I had to get hydrated before and after the drug, so a bag of saline first, then the meds, then a bag of saline afterward. The whole process didn’t take very long, maybe an hour, and the bulk of that was the saline. I asked her if was supposed to start the Revlimid at the same time and explained that I was leaving town for a few days for work. The nurse said it was best to start them together but a few days either way wasn’t a big deal. At this point it was about 4:00, and the meds hadn’t shown up yet. If they showed up before I hit the road, Kyle would meet me somewhere with them. Maybe in a seedy alley for the drug exchange. But, they never showed.
And my hemoglobin was down to 9.8, so not terrible but it didn’t stay above 10 for very long like I had hoped. I just got the shot two weeks ago, so no six-week maintenance for me this time.
The nurse manager came out to see how it went with the Revlimid and if I had to pay a lot for it. I told her didn’t have to pay anything. She was really surprised at that until I told her I’d already hit my out-of-pocket expense, in theory anyway. “Oh. I see. Well, come the first of next year, you’ll probably have to pay for it.” A) I hope I’m not still going there every week for this come the first of next year, and B) my out-of-pocket expense is my out of pocket expense, regardless of who gets the money.
The nurse also answered some other questions for me:
- The Kyprolis and Revlimid are three weeks on and one week off.
- The Eliquis (the anti-clotting drug) is every day.
- The drugs are generally well-tolerated, with few side effects.
They do the hydration with the Kyprolis because it can be renal-toxic. Uh… wait a minute. I’m taking this drug for kidney disease. Renal-toxicity seems ill-advised. She said it’s rare, and it’s used very commonly for multiple myeloma, which affects the kidneys, and that’s why they do blood work every week. So I guess I need to chill, was the underlying message.
I hit the road and got to Ruidoso around 8:00, with my first stop being Walgreens. I got my meds in what was a relatively painless process. And hey, guess what? That GoodRx app? It really works! I’ve used it for my dogs’ medicine but never had occasion to use it for myself. But hey, it saved me some money so five stars.
Today I called the specialty pharmacy to try to find out why my meds hadn’t arrived. The woman I was speaking with initially wanted to start the WHOLE process all over again. Oh man, I just had to cut her off and tell her I’d already done all that. The drugs were supposed to arrive yesterday but they didn’t. She pulled up my file and said she needed to get someone from the insurance company on the line (ohhhh, I thought, maybe these pills AREN’T free!). And then they disconnected me. I mean, but of course they did.
I couldn’t call back right way because of my FIRST full-time job (pesky patients), and in the meantime, they called me back and left a message to call them ASAP. (Had they not hung up on me…) So when I had a break, I returned their call. I explained the first call this morning, blah blah blah, and the woman said, “The drugs weren’t delivered because we need your consent to ship them.” You need my consent to ship them. In the soul-destroying, long ass phone call on Monday, no one asked me for my consent to ship them? She said they may have but that since then, there were back and forth exchanges with my insurance company and so forth. “Let me read through the notes,” she said. “There are quite a few of them here.”
“No, how about we just cut to the chase? I give my consent for you to ship them.” She laughed. “Okay, we’ll get those out today, and they should be delivered tomorrow.”
My Negative Nelly self didn’t really believe that would happen, but lo and behold, when I logged into my Walgreens account, it said they would be delivered by 8:00 AM tomorrow (as in, in the MORNING). And I just got a text message from FedEx saying the same thing. So… we’ll see. Good thing Kyle is an early riser.
The question of how long I will be on this regimen is unanswered. It all depends on if my kidneys respond. The goal, I think, is to not be on the Kyprolis for too long but then stay on the Revlimid forever. It will suck to go through all this to not have it work but I gotta try it. Nothing to lose, I guess.
Now I just need to hire a personal assistant to make all these calls for me. I HATE talking on the phone. Despise it. And especially with stuff like this that requires so much time and so many calls to get one thing done. It’s so tedious, and I just don’t have the patience for it.
Hemoglobin: 9.8
Creatinine: 1.83
Low, Low, Low 