Thursday, June 26, 2014

When is Enough Enough? (Edited)

If you haven't noticed- I'm a pretty anxious person and I worry more than most. I also hate making decisions and hate confrontation even more.
But right now it has come to the point where something with my RE has to change. I feel so incredibly sad about this since I really liked him, referred him to others, and thought he was a great doctor. I am just concerned I am not getting the best possible care. DH is writing a letter to him explaining all the issues we've had and seeing how we can change it. We are thinking about giving up on my nurse. She's a ditz, but my RE asked me to give her another try...that was over a year ago.
At this point I feel like I'm supervising her.


  • I emailed her before starting my IUIs (which we planned for since January) asking if there was any paperwork I needed to fill out. And I had 4 packets to complete and needed updated bloodwork for me and DH.
  • On CD1- after I emailed her I had CD1 of my super predictable cycle- I had to remind her to order my drugs.  And they needed preauthorization that was never done- so I had to drive to the pharmacy twice to get them. (It's a specialty pharmacy about 90 minutes from home- so not convenient)
  • And since she waited until that day, another RE ordered my drugs. So, it was the wrong trigger and wrong needles since I typically take menopur IM.
  • After my CD3 monitoring she did not call until almost 4pm to tell me I shouldn't follow the plan. By that point I had already taken the drug for the day. (ok- maybe we share equal blame here- from now on I'm waiting until being told to take meds)
  • When I asked about the HSG she wrote back to take more estrogen and she would order doxy for the procedure. I had to remind her that she needed to order the estrogen and that I cannot take doxy so she needed to order a z-pak instead. (I get that she might not remember or think to read my chart about the doxy- but if you tell me to take a drug, shouldn't you ask me if I need it ordered?)
  • When I told her I was nervous about taking the estrogen she responded that I shouldn't worry because the estrogen would already do it's thing. Does she not have a clue that estrogen caused my eggs to be rotten my last medicated IVF cycle. What a shitty thing to say... I know not a huge deal...
  • After talking about the HSG for days, having it scheduled, I still had to remind her I needed a script for it.
  • So after the whole weekend with the 'plan' changing and I missed it in an email, I was told my nurse would email on Tuesday. So I find out Tuesday that my plan changed again and to start one of the drugs that night. That was it. Nothing else.
  • Wednesday- I wait around to see if my nurse writes again since I am taking more than one drug this cycle. I am also hoping DH would handle it, since I didn't want to be involved, but I was free and he was having a rough day. So I wait until the last minute to call her. She says she was on her way out the door and I ask when to start my other drug. She tells me I start tonight. (How the fuck was I supposed to know that? Were you going to call me? Why do I need to double check this? Why?!?) And then tells me that the plan was changed again (And I knew that how?) So now in an effort to not feel blindsided, I ask when I come back in. (Also, I'm trying to coordinate an appt with the RI, so any advance notice helps). She tells me I am still scheduled to come back in on July 1st.  So she knows my plan changed and everything else was moved up 4 days and tells me to take these drugs for a full week unmonitored. Completely dangerous and would cause me to lose the whole cycle. So I had to tell her that it seemed like an awfully long time to be on menopur without monitoring. (Like HELLO?? Are you sure you work in a fertility clinic? And as a nurse?) So she gets an idea that maybe it should be moved to 2 days after starting the menopur, like the original plan but she wasn't sure if that would be ok, but she'd check. 
I guess the part that really ticks me off is this responsibility I feel. If I am not looking out for me, who will? I know from my own research and asking questions to my RE that the letrozole can only be taken for 5 days. But would my nurse have told me to stop if day 5 is before a weekend? And she sometimes emails at 11pm on Fridays- I don't think any patient should be tethered to the email that late. It's kinda crazy. I will be asking my RE when to stop on Friday. The part that really sucks is I really need to step back mentally, I am way too involved. I don't want to research any protocols, I just want to have faith in the plan- but with all of this- I feel like I can't do that. I feel like something will go wrong.

Like last December when a nurse called and told DH trigger was on Saturday, and then called me and said it was on Sunday. And I even called the on-call RE to confirm which one. He said my chart said Sunday- so I did my first IUI 12 hours after trigger- and not 36, which is the norm. And I did question an RE.. I can't keep wasting this expensive donor sperm.. I keep saying I just want 2 IUIs to fail before I move onto Donor Eggs, but is it so hard for me to expect to nothing will go wrong and I might get the whooping 10% chance I'm actually supposed to have? 

So this all happened yesterday.. right before therapy. DH is fuming mad. He wants to write the founders, the doctor and the nurse. And I'm sure he will. He wants daily phone calls. I preferred e-mails and to know what to expect a few days in advance (like a real plan). So we need to square that away. My therapist was also fuming mad. She knows I'm kinda done with advocating for myself. I didn't think it would feel like a full-time job.. 

Like I said before, I don't like confrontation- but enough is enough, right?.. I need to step back and know someone has my best interests and some knowledge about IF. I know DH has my best interest, but he wouldn't know about the monitoring or how long you should take drugs or any of that. I'm not even sure he would know to ask for a script for tests. 

We are also pretty upset with the RE for not calling me last week- and I feel like this could be avoided if I was in the loop- but whatever. That's kinda how I feel..

(Edited to add)I forgot to mention- DH is so upset and he keeps saying we should threaten to leave. He doesn't get it. They are wildly successful clinic and we have uterine problems, egg problems, and zero sperm. Other clinics may not allow me to use my eggs, or have really crappy results, or a horrible lab. Even though I'm not confrontational, I'm more scared they would drop us as a patient. I know that doesn't mean I deserve less care- I get that. And I truly hope they aren't putting all their effort into patients who really have a chance, and I'm a pity patient. I don't even want to think about that because I am hoping no one is thinking about me that way. I just want to have less stress and responsibilities. 

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