Help at Shady Grove

Help at Shady Grove

Joined: August 18th, 2010, 6:45 pm

November 2nd, 2011, 9:54 pm #1

So the nurse coordinating my cycle doesn't return voice messages or, as of today, return emails. They already delayed my cycle by over a month by misreading my blood work. I picked my donor back in September and I was the final recip in a shared cycle.

A week ago, the last I heard after I emailed to make sure I was doing this right, was to start my BCP and they would "email me my schedule". And so far nothing even though I left a VM yesterday followed up by a email today. (Yes these were polite messages.)

In theory I should be taking Lupron soon. But I still don't have a prescription for it (or the schedule for taking it). I know I am panicking but I have a bad feeling about this sudden lack of communication. Also they just sent me a bill for "additional storage" for my husband sample because of the delay in the cycle.

Anyone have any suggestions as to who I should call next?
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Joined: September 13th, 2009, 11:17 pm

November 2nd, 2011, 11:25 pm #2

I was thinking about you earlier today and wondering what was happening with you cycle. I'm sorry to see you are having a difficult and frustrating time. Did you have these communication issues when cycling with OE? Is it possible that your nurse is on vacation? They must have a coverage system. I would think the other recipients are anxious to get going too. I would just keep calling or call the main # and explain the situation and insist on a response from someone by the end of the day. Do you have a contact # for MD. If yes, I would not be shy about using it if you do not get a response. Could Your screening coordinator help. I rec'd the intro email from my screening coordinator and got the impression she worked closely with the RN. Hope you get a response soon. I sent an email to the out of town liaison early yesterday and got a response after 8 pm last night. I was surprised she was working so late. good luck and ((hugs)).
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Joined: October 22nd, 2010, 7:15 am

November 3rd, 2011, 2:38 am #3

So the nurse coordinating my cycle doesn't return voice messages or, as of today, return emails. They already delayed my cycle by over a month by misreading my blood work. I picked my donor back in September and I was the final recip in a shared cycle.

A week ago, the last I heard after I emailed to make sure I was doing this right, was to start my BCP and they would "email me my schedule". And so far nothing even though I left a VM yesterday followed up by a email today. (Yes these were polite messages.)

In theory I should be taking Lupron soon. But I still don't have a prescription for it (or the schedule for taking it). I know I am panicking but I have a bad feeling about this sudden lack of communication. Also they just sent me a bill for "additional storage" for my husband sample because of the delay in the cycle.

Anyone have any suggestions as to who I should call next?
was extremely happy once those were ironed out.

For our 1st cycle there (I was in the 3rd position), I felt the clinic liaison was the most responsive an energetic when it came to information. The only thing was that her area was limited (as is most everyone at SG because they specialize in certain areas...the nurse, the doctor, the donor coordinator, the financial coordinator). The system was wonderful, but at 1st it was frustrating.

I always contacted my own nurse, regardless of the fact that there was another nurse coordinating the cycle. On the first cycle, I tended to not be able to reach my nurse as quickly as I wanted, and I did not always feel like I was given complete info (things like, once the eggs were retrieved and fertilized, I was always told that they were dividing and progressing...WHAT DOES THAT MEAN???). Basically, it was not until we got to transfer that I learned that we had pretty cruddy embryos (not that babies have not been born from poor quality embryos, but I wish I had some more idea that if the embies implanted that would have been against the odds, BEFORE I got to transfer) That cycle ended with a BFN.

When we cycled the 2nd time, I was in the 1st position. We actually ended up with the same low number of eggs as the 1st cycle (5). 4 of them fertilized and 2 became great quality blasts. The difference was that after being on this board, I knew more about specific questions to ask and how to understand the information.

So I say all of this to say, if you are having trouble getting answers, I would just try to go through my assigned nurse instead of the one who's over the cycle. If that doesn't work, I would give a call to the general number in Rockville and ask for any nurse on the DE side. Tell her, in the nicest way, what's going on without making it look like one of her co-workers is not being responsive to you. In fact, you might say that you realize it's probably an oversight, but that you have been waiting since September without a schedule, and that you certainly don't want to end up being the hold up since you are still on bcps and since lupron has not been ordered for you. Then ask if there's anything that she might suggest you do.

I must tell you, during my 1st cycle, I waited about 3 or 4 weeks for my schedule, but then things kicked into high gear and we were just days away from our lupron injections (and although I was worried, I did get my meds in time).

Bottom line, I love SG, but I had to find a way to make it work for us. During the 2nd cycle, I feel like I had a better grasp of what was going on and I felt that the nurse had more of an interest that time (don't know why, that's just my interpretation of our interactions).

Sorry for the long, wandering post. I hope I answered your question somewhat.

Also, what's the deal with the storage fee for your dh's sample? I didn't know that could happen.

I hope your cycle begins soon.
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Lenebene
Lenebene

November 3rd, 2011, 3:20 am #4

So the nurse coordinating my cycle doesn't return voice messages or, as of today, return emails. They already delayed my cycle by over a month by misreading my blood work. I picked my donor back in September and I was the final recip in a shared cycle.

A week ago, the last I heard after I emailed to make sure I was doing this right, was to start my BCP and they would "email me my schedule". And so far nothing even though I left a VM yesterday followed up by a email today. (Yes these were polite messages.)

In theory I should be taking Lupron soon. But I still don't have a prescription for it (or the schedule for taking it). I know I am panicking but I have a bad feeling about this sudden lack of communication. Also they just sent me a bill for "additional storage" for my husband sample because of the delay in the cycle.

Anyone have any suggestions as to who I should call next?
I had a similar exp. as Veesha. It took them several weeks to get me a schedule once everyone was matched. I got my prescriptions, once I got my schedule (they just sent them to their pharmacy and never asked whether it would work for me, so I had to fight to get them to send them to mine pharmacy). I also never got an email or call about my schedule, they mailed it to my house (another issue, I should have been called). I found that my nurse was not the head nurse, so it was kind of frustrating to get information out of her since she wasn't managing that donor cycle. I found out the head nurse and called her after a while, so that I could get more information, since my nurse wasn't answering emails/phone calls.... Anyway I'm happy that my first cycle worked but it was a lot more stressed than it needed to be.

I would call your nurse directly and if no return call then I would call the head nurse, if again still no call, then call your doctor... communication is something that the DE nurses/team lack. I never had a problem with my OE nurse and that was the main reason I went back to SG.
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Joined: August 18th, 2010, 6:45 pm

November 3rd, 2011, 3:22 am #5

I was thinking about you earlier today and wondering what was happening with you cycle. I'm sorry to see you are having a difficult and frustrating time. Did you have these communication issues when cycling with OE? Is it possible that your nurse is on vacation? They must have a coverage system. I would think the other recipients are anxious to get going too. I would just keep calling or call the main # and explain the situation and insist on a response from someone by the end of the day. Do you have a contact # for MD. If yes, I would not be shy about using it if you do not get a response. Could Your screening coordinator help. I rec'd the intro email from my screening coordinator and got the impression she worked closely with the RN. Hope you get a response soon. I sent an email to the out of town liaison early yesterday and got a response after 8 pm last night. I was surprised she was working so late. good luck and ((hugs)).
My previous OE cycles were in my home town and OOT at NYU. SG came recommended from a friend who had success there after several failed OE IVFs in our home town, from people in this forum and from my home town RE.

I honestly just can not understand what is happening to delay this like this.... I am so worried I will lose my donor. She was perfect - literally opened the data base, there she was and everything was exactly what I hope for. Plus she had already made a match with another recipient.

I'll let you know what happens tomorrow because I will not stop calling until I get an answer. Of course I will be at work which will be a pain but I am not going to give up.
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Joined: August 18th, 2010, 6:45 pm

November 3rd, 2011, 3:29 am #6

was extremely happy once those were ironed out.

For our 1st cycle there (I was in the 3rd position), I felt the clinic liaison was the most responsive an energetic when it came to information. The only thing was that her area was limited (as is most everyone at SG because they specialize in certain areas...the nurse, the doctor, the donor coordinator, the financial coordinator). The system was wonderful, but at 1st it was frustrating.

I always contacted my own nurse, regardless of the fact that there was another nurse coordinating the cycle. On the first cycle, I tended to not be able to reach my nurse as quickly as I wanted, and I did not always feel like I was given complete info (things like, once the eggs were retrieved and fertilized, I was always told that they were dividing and progressing...WHAT DOES THAT MEAN???). Basically, it was not until we got to transfer that I learned that we had pretty cruddy embryos (not that babies have not been born from poor quality embryos, but I wish I had some more idea that if the embies implanted that would have been against the odds, BEFORE I got to transfer) That cycle ended with a BFN.

When we cycled the 2nd time, I was in the 1st position. We actually ended up with the same low number of eggs as the 1st cycle (5). 4 of them fertilized and 2 became great quality blasts. The difference was that after being on this board, I knew more about specific questions to ask and how to understand the information.

So I say all of this to say, if you are having trouble getting answers, I would just try to go through my assigned nurse instead of the one who's over the cycle. If that doesn't work, I would give a call to the general number in Rockville and ask for any nurse on the DE side. Tell her, in the nicest way, what's going on without making it look like one of her co-workers is not being responsive to you. In fact, you might say that you realize it's probably an oversight, but that you have been waiting since September without a schedule, and that you certainly don't want to end up being the hold up since you are still on bcps and since lupron has not been ordered for you. Then ask if there's anything that she might suggest you do.

I must tell you, during my 1st cycle, I waited about 3 or 4 weeks for my schedule, but then things kicked into high gear and we were just days away from our lupron injections (and although I was worried, I did get my meds in time).

Bottom line, I love SG, but I had to find a way to make it work for us. During the 2nd cycle, I feel like I had a better grasp of what was going on and I felt that the nurse had more of an interest that time (don't know why, that's just my interpretation of our interactions).

Sorry for the long, wandering post. I hope I answered your question somewhat.

Also, what's the deal with the storage fee for your dh's sample? I didn't know that could happen.

I hope your cycle begins soon.
I really appreciate your response! I know I sound a bit frantic but its just that my DH and I run our own business and I need to have some sense of what is going on from a logistical stand point. And I think because I am used to handling large projects with lots of dollars involved (you know - like DE cycles!) I can't understand not returning a message with a quick text or email even if you don't have time for a conversation.

And to be honest, if I lost my donor I think they owe it to me to tell ASAP. SG is the reason for the delay so far. Not me.

Thank-you again.
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Joined: August 18th, 2010, 6:45 pm

November 3rd, 2011, 3:33 am #7

I had a similar exp. as Veesha. It took them several weeks to get me a schedule once everyone was matched. I got my prescriptions, once I got my schedule (they just sent them to their pharmacy and never asked whether it would work for me, so I had to fight to get them to send them to mine pharmacy). I also never got an email or call about my schedule, they mailed it to my house (another issue, I should have been called). I found that my nurse was not the head nurse, so it was kind of frustrating to get information out of her since she wasn't managing that donor cycle. I found out the head nurse and called her after a while, so that I could get more information, since my nurse wasn't answering emails/phone calls.... Anyway I'm happy that my first cycle worked but it was a lot more stressed than it needed to be.

I would call your nurse directly and if no return call then I would call the head nurse, if again still no call, then call your doctor... communication is something that the DE nurses/team lack. I never had a problem with my OE nurse and that was the main reason I went back to SG.
The nurse I have been in contact with is the only nurse I have met so far. But if I don't get any response from her tomorrow I will call the intake coordinator, and then everyone else who's business cards I have including the doctor.

I almost have to laugh. You would think that after 7 years of trying whats a few extra weeks? Aargh!

Thank you so much for the input! I really appreciate it.
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Joined: August 18th, 2010, 6:45 pm

November 3rd, 2011, 2:58 pm #8

So the nurse coordinating my cycle doesn't return voice messages or, as of today, return emails. They already delayed my cycle by over a month by misreading my blood work. I picked my donor back in September and I was the final recip in a shared cycle.

A week ago, the last I heard after I emailed to make sure I was doing this right, was to start my BCP and they would "email me my schedule". And so far nothing even though I left a VM yesterday followed up by a email today. (Yes these were polite messages.)

In theory I should be taking Lupron soon. But I still don't have a prescription for it (or the schedule for taking it). I know I am panicking but I have a bad feeling about this sudden lack of communication. Also they just sent me a bill for "additional storage" for my husband sample because of the delay in the cycle.

Anyone have any suggestions as to who I should call next?
A bitchy voice mail by me this morning got a response. Of course I got the "oh I left you a message I can't imagine why you didn't get it..." response. NOT TRUE. I have been tied to my phone since I began BCP. Whatever.

So it looks like I cancelled my Thanksgiving dinner party for no reason and all of my business travel. They won't even be ready for retrieval until mid December. In other words the nurse's earlier estimate was off by at least three weeks even though she knew when I started BCP.

If you have been doing this as long as I have you know this is BS. These protocols are pretty standard at least in the syncing up phase. Everyone goes on BCP, after a set number of days, Lupron followed by lining prep and, after a set number of days, stims for the donor. Not that hard to figure out once everyone is on BCP and if you look at a calendar.

I am so pissed right now.

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Anonymous
Anonymous

November 3rd, 2011, 7:18 pm #9

Is there no withdrawal bleed? I always heard the guideline was that retrieval is @ 6 weeks from when the last person starts BCP.
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Joined: August 18th, 2010, 6:45 pm

November 3rd, 2011, 10:20 pm #10

They are telling me I must be on BCP pills for 16 days total I start Lupron on BCP day 14 and continue with the BCP for two more days. After being on Lupron for one week I have BW/US and then begin delestrogen. Then, according to the calendar she outlined on the phone I will be on delestrogran until the transfer which is not until an estimated 25 days later. That's a seven week time frame.

Does this sound right? Do you think I am supposed to get a period in there some where?
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