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Monday, July 28, 2014

wow I forgot how much coordinating out-of-state treatment sucks

So we had some drama with coordinating my care over the weekend. For whatever reason, my blood test results didn't get to CCRM. I did my usual dance--got blood drawn. Called CCRM around 4 CST to find out if they received the results. A nurse returned my call around 5:15 stating that they did not. I called the hospital that drew my blood and asked them to re-fax the results. They said they would. I called CCRM back around 6 CST to find out if they had received the results. CCRM is closed at that time so I got the answering service. I asked the service to contact a nurse (because they are still at CCRM at that time--they just don't answer the phone anymore) to find out if they had received my results. The service said the nurses make those calls until 7:30 PM CST so I should wait and if the nurse didn't call back by 7:30 call the answering service back and they would get me a nurse. I asked whether a nurse would still be at CCRM to see if my results had arrived after 7:30 PM and the service said yes.

So, as you can imagine, they didn't call by 7:30. So I called the service. And, as I suspected, there are no nurses at CCRM after 7:30. So they paged the on call nurse who was at home and had no access to the fax machine to find out if my results had come through. She refused to call the lab to get the results (and the lab won't give me the results over the phone. They'll give them to a nurse over the phone but not me. I have to go there in person and sign a release. I've never tried impersonating a nurse to see if I can them over the phone that way because I hate lying. But it seems to me that's the loophole). The on-call nurse also seemed pissed that I was calling because they don't consider pregnancy med results "urgent" and they don't make changes to preg meds over the weekend.

You know, I consider changing my hormone levels while pregnant urgent. In fact, I'm pretty sure that's why my nurse ordered the blood test Fri instead of waiting for Monday's standing order. Because they made a change on Thurs and wanted to make sure all was OK.

The on-call nurse said "if the results are OK you'll stay on PIO every other day so just do that over the weekend". I asked "what if the results aren't OK? Wouldn't it be great if we could make a medically informed decision by getting my test results rather than guessing". She then advised me to call CCRM back first thing in the AM and find out what my results were. She's just making shit up.

So I did. But first I drove to the hospital to get my freakin' test results just in case CCRM still hadn't gotten the fax. When I called the after hours line on Sat, they were annoyed that I called on the weekend for my preg hormone results. But it turns out that the results were not "OK". My p4 was 13 and they want it over 15. So the Sat nurse advised me to go back on PIO every day until I could talk to my nurse on Monday.

Got my blood drawn again for my Monday standing order.

My nurse called me back Monday at 5 PM CST to let me know she got the results from Fri and today. She wanted to know what my meds were now. She seemed surprised that I was still on PIO every day. Goddammit. I could've been doing it every other day instead of every day?! But rather than put me on every other day, she opted to have me decrease my e2 and stay on PIO every day until Wed. Skip Wed shot then go in Thurs for blood draw to see levels.

She suggested I decrease my patches from 2 every other day to 1. I asked why are we decreasing patches instead of estradiol given that my e2 isn't really decreasing with decreasing patches so maybe we'd get more bang from decreasing estradiol. We did that order during DD's pregnancy. She said she usually weans off patches first because patients tend to complain about skin irritation with the patches and they are more expensive. But I'm lucky-my insurance covers my patches. So we're decreasing the e2. Only 1 pill per day starting tomorrow. So I'm nixing the morning one so I don't have to lay down for 1/2 hour each morning. Fingers crossed this decreases my e2 as I suspect it's contributing to my nausea and weight gain.

One thing I will not miss is coordinating care out of state. Esp since the CCRM IVF nurse line almost always goes straight to voicemail. Then they call back. And often I'm in a meeting or in the bathroom or something and miss the call. So then I have to call back and leave another message etc. I mean seriously?  A lot of us have jobs. Which is part of why we struggle with IF, right, because we delayed pregnancy?! So for them to expect us to be available whenever they call us back but don't pay us the same curtsey. I won't miss it one bit.

4 comments:

  1. I remember early in my pregnancy how hard it was dealing with my RE here in Oklahoma and my other specialist in Chicago. It was very trying on my nerves. Thankfully it all worked out and now all my doctors work together and get labs etc. on time and accurate. Good luck!

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  2. OH to be done with CCRM, you are almost there. I am not saying that is a bad way but this part of your life will be behind you and you will have 2 beauties after all the struggle. Glad to hear all is going well!

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  3. Congrats on your pregnancy! Hope it is a healthy one! Just curious, did you test before beta with your DD in July 2011?

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  4. thanks ladies!
    Yes I POAS for all my transfers. I just didn't post early results on the blog in case of "chemical pregnancies". Turns out I had positive HPTs for all 4 FETs (2 were chem pregs, 1 was DD, 1 Obie).

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