Met with Mass General's PGD doctor, not impressed, actually disappointed.

In light of my test results which came back today, my son tested as Trisomy 10. I can only assume his twin and brother from 2 years ago are the same. This is attributed to advanced maternal age. Here is a tale of my experience with Mass General.

Hubby and I went Tuesday to meet with the PGD "specialist" at Mass General. Hubby at this point is "along for the ride" and is letting me take the reins. Aside from letting me drastically changing his diet and eating habits (only caused 2 major anxiety attacks ~ bye folic acid ~ ) MY method has allowed him so far to lose 5 pounds in a few weeks which is working better than the experimental drugs Mass General's weight center doctor was pumping him full of, but I digress...

Aside from having major issues trying to get my records from BIVF in a timely fashion (totally pissing me off!!! but wouldn't expect anything less from them at this point!), we got my records from my OB (who is fantastic and gave me my records weeks ago in anticipation of our journey). We went in with expectations that were far from met. At this point I have to say I'm greatly disappointed and annoyed with the way things started off with this new doctor. I was informed in preliminary chats with the coordinator that we would have the opportunity to discuss our concerns with the doctor and start a treatment plan that will not only get to the bottom of our issues (recurring miscarriages) and correct them prior to cycling with them. For a doctor who has been involved in PGD for 15 years, she was about as informative as a dead mouse (clearly seeing it's dead, it's that obvious, with no explanation as to cause of death ~ you get the idea)

We spent more time updating my information (isn't that WHY we faxed it over in the first place to NOT have to go over it again in the computer?). We already knew going in that they wouldn't do gender, but when I asked questions relating to gender and odds, I was quickly dismissed with "that would happen anyway, you could get 5 boys in a row" ummm, yeah, if we were doing 1 at a time!!! NOT creating many and seeing the odds split so drastically.

I felt through the lack of information that every time I brought up a concern or question it was quickly dismissed with a non-sense basic answer and wasn't accurately answered to my satisfaction. I tried to address diet and supplements that I started myself on, expecting the usual "that's not scientifically proven, it's a bunch of non-sense" but instead I got a flat "ok, keep on them". She wouldn't even listen to what I was taking! I could be taking 1,000 mg of arsenic a day and she didn't even flinch. WTF? I want someone to understand what I'm doing/taking and go over them with me as to if they are beneficial or not or if I should add/take away anything. I'm looking for someone who will go over everything with me and explain it as we go, not just do things, be very vague if they give information at all (example, I still don't know my FSH level from the last 2 tests!!! I would like to have this information!!!)

She was more concerned why we chose to do PGD at our age (and in the past) and basically told us there was no reason for us to do PGD and would prefer NOT to do it this cycle. I tried to explain to her that #1 we already know from previous cycles that 1/2 of our embies come back with mosaicsism and #2 we DO NOT wish to create a child that could potentially have a serious birth defect that we would place the burden of responsibility to my two daughters once we are gone. Her response was "If there's a problem, it will abort anyway". Ummm, yeah, not always and I am TRYING TO AVOID another miscarriage!!! Did she not see we've already had 2 in two years???? DUH!!!!

Since I'm doing what I can based on what I've read (intensively) and discussed in depth with women who have taken time, supplements, yoga, etc... I understand that to create the healthiest cycle you can with the changes I'm doing it realistically takes 150 days (6 months, minimum 3 months). Not with her, she's ready to start the cycle in JULY!!! That's only 8 weeks or so away. I'm NOT ready emotionally or financially to jump in so soon without positive results. While I understand some women can bounce right back quickly then get pregnant immediately, I do not wish to put my body or mind through that so soon. As much as I want to start again as soon as possible, I at least know that my body and mind need to heal over what I just went through. 4 months of heartbreak is traumatizing, but clearly not her concern.

Then we were rushed to set up blood/semen testing in the next week for hubby and month for me. The only thing in her favor for that is she's ordering a full karyotype work up for hubby and me to see if we have any chromosomal abnormalities. And a test on my white blood cells to be sure they aren't attacking anything still, but I have to have my OB order that, so why are we using her???? Her nurse was trying to rush us out of there (I understand there are other couples waiting to talk to her, but she was already running an hour behind schedule and I deserve the same consideration as anyone else for her time). Then we're told we may not see her again that they work as a group and will probably see others. Sorry, I want someone who will get to know ME, stay with ME, and work WITH ME to address my concerns. Yes, it IS all about ME!!! lol.

The other thing in their favor is they do all PGD testing on-site (not that it matters if she won't do it!) and they do a day 5 probe with a day 5 transfer. But she's convinced that since I already have 4 kids (did she not understand the part that it takes us YEARS if we're lucky and all other dr's have said #4 was a miracle ~ hubby did tell her that) that we should be able to get pregnant in the next 2 months on our own. HAHAHAHAHHAHAAAA! Even after 7 years of not using any protection we haven't even had a late day.

I felt like I had to go fishing for information as none was offered up. I mentioned I wanted to do a mind and body wellness program (as they offered it) and I was told to take a sheet off the desk that would explain it. Then I mentioned I wanted to do yoga, again, "here's a card of some lady others have used". WTF???? What kind of treatment plan is THAT??? As it was explained to me prior to coming in, they were pioneers in this field and everything will be done to be sure we achieve a baby. Yeah, I don't think so!!!

I've been trying to bounce all of this off hubby but since he's been listening to me about it for years now, he's tuned most of it out and only responds back that whatever I want he'll do. URGH!!! Frustrating! So glad everyone on this (and the other) forum understand what "I'M" going through and offer great advice, for that, I thank all of you!

So I'm still calling Women and Infants in RI and setting up an appointment with them as well. I don't see myself going back to MG any time soon. I am also calling Reprogenics in NJ again and ask who they deal with in MA and RI that do PGD for gender with a 3 panel probe then contact those places. Worst case we get all of our testing done with a hospital then (God forbid) try BIVF, but will be a cold day in Hell before I go back there!

So now I'm annoyed and disappointed in our meeting but I won't let it get me down, I'm on a healthy roll to do something to help me (and hubby) and there's many other places we haven't explored yet. I will not be rushed this time, I will go into another cycle as healthy as I can be, and very well informed!!! NO doctor will tell me what to do if I don't feel comfortable with it. Don't get me wrong, I understand they are there to provide a service, and there's tons of couples who need help, but I don't want to feel like a cattle, just a number, I want some sense of personal connection and I just didn't get that. Without it, we're destined to fail again and would be no further ahead than a year ago.

I did just reserve Julia Indichova's books at my local library and will read them cover to cover before I meet with another doctor!!! My body, My future, MY KIDS!!!! :)

Hope all is well with everyone and as always, any advice is greatly appreciated!!!

B

I feel for you. I really do. Definitely shop around for a doctor who understands your needs and who you can trust. I hope you will find one soon.
Wish you luck!

Sorry you have gone through so much. Sounds like with your two miscarriages you should do pgd and check all 24 chromosomes. That way you transfer the healthiest one.
Best of luck to you.