My Final IVF Cycle or Reasons #13, 14 & 15 of Why I Hate Cooper!
I should update my blog on all my recent drama. On Tuesday May 3rd, I started what is to be my final IVF cycle before moving on to donor eggs. I planned to cycle on the DL, since talking about my progress just gets me more anxious. But then all the shit started to hit the fan, and I just had to post on the TTC boards in order to vent my spleen. Now that things are more stable (I think), I’m OK enough to do an update here.
As my luck tends to work, my starting this cycle coincided with my being on service last week. As such, I couldn’t get in for baseline ultrasound and only did labs. I got the call Monday night on my voicemail to start the microdose lupron that evening and then twice a day, but to start stims on Tuesday morning. The weird thing is that the chick gave me a starting dose of meds that was not what Dr. Check and I had agreed on. Then she called back saying that she had made an error and gave a different dose of meds, still not what had been planned. I called and left a message for the nurses saying that I was told 300 of Follistim in the morning and 150 Follistim and 150 Repronex in the evening. I asked them to check on the difference between what Dr. Check and I had planned and what this nurse had said. Carol called me the next day saying that my values were the correct ones and she doesn’t know where those other numbers came from. So I happily went along and started stims.
Because of being on service, I wasn’t able to come in for my first ultrasound until Saturday. During those days of stimming, I was suddenly having a lot of bloating and pain, something that had never happened before. Could my body have been responding to the MDL regimen or was it fooling me again? Well the answer was both.
I went in for blood and ultrasound on Saturday and found that I had a giant cyst (33mm) on my right ovary. I had another small follicle of 11 mm. And the best news: my E2 was only 51! Awesome! NOT! So I stopped the MDL since this was the only change I had made from previous cycles and in those cycles I did respond better. The on call doc said that it was OK to stop it. My plan was to add Cetrotide if I ever get to an E2 of 200 or my follicle size gets to 14-15mm. The only good news about the cyst was that it seems to be nonfunctional since my E2 is not higher. As such it will prove to be more of a mechanical issue than an endocrinological one.
I sent a fax to Dr. Check saying that my opinion is that I should just continue stims for the 14 days we talked about and just see if we get anything. But stopping the cycle, taking the pill for a month and trying a new cycle was not an option. I cannot go through another cycle. Luckily for me, Dr. Amuri didn’t change anything. She just told the nurse to tell me that they would discuss the results with Dr. Check on Monday and get back to me.
On Monday I get a call asking why I hadn’t had labs or ultrasound. I replied that no one told me on Saturday to come in Monday for labs or ultrasound. Sheesh. So I went in on Tuesday.
Here’s the big weirdness. That giant cyst (33mm) that I had on Saturday was G-O-N-E on Tuesday! It just disappeared after I stopped the MDL. The sono tech was stunned. The nurse was also aghast since she said that the Lupron usually shrinks cysts, but in this case the MDL seems to have either caused it and stopping the Lupron cured it. How bizarre is that?
I knew something was up since I stopped having all that pain and bloating, but I didn’t think it would have disappeared completely! Otherwise after 7.5 days of stims, I had one follicle at 13mm, 2 at 7mm on the right and 2 small 5mm ones on the left. On so onward I went with the game is still on. I was not optimistic, but I did find the disappearing cyst to be fascinating.
Tuesday was also Mason’s 38th birthday. I’m at work wrapping his gifts when I got the call from Cooper with my labs and instructions. My E2 went up to 135, progesterone 0.9, LH 7 and FSH 33 (reflecting all that I have been giving myself). So I was thinking, cool, we will just continue as planned. Nope. The nurse says, “Dr. Check wants you to stop all your meds and come in for labs and ultrasound tomorrow.”
I’m like WTF?!! Stop my meds?!! “Why?” I ask her. She doesn’t know. “Is there a problem?” I try again. She doesn’t know.
“Why is he changing our plan?”
“I don’t know. These are just his instructions…”
“Are you sure that Dr. Check remembered that this was my last cycle and I wanted to see it through to the end. We planned to stim for 2 weeks and possibly aspirate the dominant follicle…”
She’s like, “This is what he said. If you want, when he comes out of the room I will ask him again.”
So I went back to wrapping Mason’s presents and preparing to go to Morimoto for dinner. On the drive over there the nurse calls back and says that she rechecked with Dr. Check and he wants me to stop my meds and come in for labs and ultrasound tomorrow.
“Why?” I cried out.
“I don’t know. These are his instructions.”
“This doesn’t make sense. It isn’t what we planned. Can I speak to him about this change?”
“No”
“Well tonight is his callback night. Can he call me back to explain?”
“No, there is a 2 week wait for callbacks.”
“But this doesn’t make sense! I need to know why he’s making such a change! Can’t he even leave me a quick voice mail message?”
“Sorry.”
“Well let him know that I am very unhappy about this and need to know what is going on.”
“I’ll make a note in your chart,” she replied before hanging up.
I ended up in tears in front of the restaurant crying when Mason came up to me. I explained everything that had happened and he was incensed. “How can they just change the plan and not tell you why? That isn’t right.”
I ended up calling back in a rage saying that I wasn’t comfortable with the change and would not stop stims until someone explained to me what was going on. I said that I would return for labs and ultrasound on Thursday. The nurse was pissed, but was like fine, I’ll tell Dr. Check.
Of course this threw a major pall over dinner from my point of view. Mason was so sweet trying to help me process my feelings. He suggested calling my friend Dr. Mama to see what he thought, since I trust his judgment. I agreed to do so on my way home. But I kept the cell phone on the table in case they called me back.
Driving home I called Saifudden. He was his usual wonderful self. The upshot of his thoughts was that neither he nor I are REs. If Dr. Check knows that a) this is your final cycle; b) you want to stim long enough to grow more than one follicle; and c) you both agreed on this plan and he put it in writing, then clearly something in the labs or US result made him alter things in some way and I had to trust that he was working in my best interest. He asked if I trusted Dr. Check. “Honestly,” I responded, “I don’t trust anyone with regard to my fertility and this whole process. I question everything and everybody.” He asked whether it would harm this cycle to do what they said. I didn’t know. Would it harm the cycle to continue stimming despite their telling me not to. I didn’t know that either. So he convinced me to follow their plan and press for a better answer from Dr. Check the next day.
So I took no meds Tuesday evening and Wednesday morning. The amusing (NOT) thing was that when I got home on Tuesday night, there was a message saying that Dr. Check was willing to talk to me but I wasn’t home. They were going to try the other number. But they never called my cell! It was sitting on the table the whole time. Of course on Wednesday I got in to work and found that the idiots called my private line at work! It was the cell that they called me on in the first place. Why wouldn’t they call that line when Dr. Check was available?
Onto Wednesday. This is where it gets really good. I had my labs and then put my name on the list for an ultrasound. I waited for a half hour but the techs kept passing me by. Why? Because I didn’t have an appointment. I’m like, but they told me at 7 PM the night before to come in this morning for an US. I couldn’t make an appointment. Sorry, they said. They had to take the patients with appointments first.
Then I tried to speak to one of the IVF nurses to explain that I had a doctor’s appointment in Philly that I was going to be late for and I couldn’t get the US since the techs wouldn’t take me. They were too busy to come out and told the receptionist to tell me that they would call me later with my instructions based on my labs. And Dr. Check hadn’t even come in yet.
I drove to my shrink appointment (lucky timing) in an utter rage of helplessness. What the hell is going on? Is he canceling me? What is he doing? I just don’t understand.
So yesterday I got to spend the afternoon in a in a tizzy all day until the nurse called me. This is not how I wanted my last cycle to go.
And as if this weren’t bad enough, my donor choice from the Renew program was selected by another couple and is now off the books for at least 5 months. I felt like jumping off a bridge.
If this wasn’t happening to me, I would never have believed it.
At 4 PM yesterday, while in with a patient, the nurse Jill calls me. She wants to know why I hadn’t had my ultrasound. I explained once again that I waited for 30 minutes but kept being passed over and had to get to another appointment. She’s like, “Well Dr. Check likes to have the ultrasound to correlate with your lab results and he won’t be happy that it wasn’t done.” She then asked if I could come back that afternoon and have the US done. “I don’t think the patients I am here in my office seeing would like that,” I replied.
I asked her why he stopped my meds. “I don’t know,” she answered. (This is getting be a common refrain)
“Is he planning to cancel me?”
“I can’t imagine him doing that since your estradiol is 190 and looks good.”
“Then why did he stop my meds?!” (You know what she answered and I don’t need to repeat it.) She said that they would call back later with my instructions after talking to Dr. Check.
At 6:30 I get a call from the nurse…still no Dr. Check. She tells me that Dr. Check wants me to continue off my meds. For the 45th time I ask why he wants me off meds.
“Well you’ve done better since you stopped your meds on the 7th, so he wants to continue off meds and see what happens.”
“What are you talking about?!! I didn’t stop my stims on the 7th. I only stopped them last night because you guys told me to!”
“Well it says here that you stopped your Lupron on Saturday…”
“Yes, I stopped the microdose Lupron but have continued on the Follistim and Repronex.”
“Oh, we thought you stopped everything.”
“Of course not! I never said that! I’ve got small follicles. How would they grow without stims?! That’s why I pitched such a fit about your making me stop last night”
“So you are still taking the 150 of Follistim…”
“No,” I cut her off, “I’ve been taking 300 units of Follistim in the morning at 150 of Follistim and 150 of Repronex in the evening.”
“That’s not the right dose. We have that you were told to take 150 of Follistim in the morning and 75 of Repronex in the evening.”
“Well that’s an error. Last Monday night someone called and left instructions that didn’t match the plan that Dr. Check and I had agreed on. Then she called back and changed the med doses again, but they still were not what he and I agreed on. So I called that evening and left a message for the IVF nurses to clarify what dose I was actually supposed to take. I spoke to Carol the next day who said that according to the paper she had, my dosing was correct and she didn’t know where the nurse had come up with the other dosing. So that’s the dose I’ve been on all this time.”
“Oh. I’m going to have to call you back,” she said.
Five minutes later she called back saying that Dr. Check wanted me to restart Follistim at 225 in the morning and Repronex at 225 in the evening. I am to have blood and ultrasound again tomorrow.
So there you have it. The level of gross incompetence of Cooper outdoes itself. I ended up stopping my meds for no good damn reason. I just hope that it didn’t screw things up totally. I ended up giving myself an extra dose of Follistim yesterday evening to make up for the missed morning dose.
I found Dr. Check’s cell phone number when I got home. My dear husband wanted to have a very pointed chat with Dr. Check last night. I just wasn’t up to it.
Having managed to make an appointment yesterday, I managed to have my ultrasound done today. The news was encouraging. I had my dominant follicle at 16 on the right, but there were also 3 other follicles of 8.6, 7.6, and 8 mm as well as two on the left at 8.6 and 8mm. So continuing to stim will allow this other cohort of smaller follicles to grow. Now the challenge is in reminding Cooper of the plan to ignore the large follicle, letting the smaller ones mature. I’m sure that is going to be another battle for today.
Mason did reach Dr. Check yesterday. It was his birthday and he was driving home late for his party. Mason said that he tried to impress upon him several times that serious lapses and misinformation caused the unnecessary stopping of my meds, but somehow Dr. Check kept focusing on the protocol and the med choices and didn’t seem to get the point of the call. I told Mason that he should take it up with Matt Check, the director of the practice instead.
Don’t this just beat all?!!!
What shit I’ve had to deal with during my last IVF cycle. Is there any wonder why I can’t do any more of this?
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But wait! I’m still confused. Why DID Dr. Check order you to stop your meds? That question was never answered.
All I can say is, I’m sure glad that I decided against going to Cooper. I’m so sorry for all the needless bullshit and frustration you are being put through.
And the Renew donor! ARGH! That is the icing on the shit, isn’t it? Please email Robin and tell her to notify you immediately if the other couple changes their mind and releases the donor (that happens a fair amount). Make sure she knows that YOU have her next! Ugh.
Well, here in my part of the world, the morons THREW AWAY my cycle day 3 labs because they couldn’t find my ID number on the requisition form . . . . It was there, they just didn’t see it. THREW ‘EM AWAY. So I had to wait a whole other month, which turned out to be a 3 day religious holiday so I couldn’t get them drawn then either. What the heck?
I hear you.
I never know which blog of yours to comment in these days, so today I’m just going for both.
Yay for the good follies today. I’m so glad they’re still developing. You do what you think you need to and what you think will work best for you, CC be damned.
Hope you don’t have to have another fight with them but my money’s on you.
Wessel: I think Dr. C said to stop my meds because he thought I had already stopped them myself on Saturday, based on what the nurses had told him. It doesn’t quite make sense to me either. Seems like the nurse would have said on Tuesday, “continue off your meds…” and then I could have replied, “I’m not off my meds…” But that would have been too logical.
And so sorry about them throwing away your CD3 labs. What idiots!!
Millie: I don’t think there will be any more fights because I’m just going to do what I want to do…period. The nurses can kiss my ass!