How was your experience with Mary Ellen Pavone?
I actually liked Dr. Pavone initially quite a bit and found her good at accepting suggestions and letting me pursue some more testing that a second opinion doctor had given me when we weren't making progress. She was open to trying knew things, up to a point, but we finally had to move on when she refused to try any other protocols and was convinced we should be moving onto DE (donor egg). I have DOR and was responding poorly to her protocols----she tried EPP with high doses of follistim/menopur and threw in ganirelix at the end, and when two rounds of that yielded very low follicles, she then tried clomid, followed by follistim/menopur/ganirelix when I commented on how I seemed to respond much better to clomid than I did all the expensive injectables. I did better on the clomid, but still not that great, yet she wouldn't try anything else, not even a micro-dose lupron protocol. If we wanted to proceed with her, it would have to be with the clomid protocol, which could only be done a few times due to limits on clomid exposure, and even then, she was pushing us to consider DE or adoption, which we had told her wasn't an option for us at this time. I do think that compared to the other docs at NW, she's one of the best and she's the most liberal (besides Dr. Marsh) and aggressive. She just gave up on my quicker than I think she should have, especially since I am only 37 (young for IVF, I keep being told).
What one piece of advice would you give a prospective patient of Mary Ellen Pavone?
Be proactive and keep doing your own research. She is not going to give lots of suggestions or think outside the box for you, but is open to trying things if you want to (ie, she let me have a laparoscopy after my 3rd failed attempt at ER when I asked about it and also did a huge panel of immunology testing at my request even though I hadn't had recurring miscarriages---I wanted testing b/c I wanted information preemptively in case it could prevent a miscarriage should we ever get pregnant).
During treatment, did you feel like you were treated like a number or a human?
It's complicated. The clinic definitely treats you like a number; the nurses do all the callbacks and all the communication. While monitoring, when you get your ultrasounds at Northwestern, the US techs are NOT allowed to discussed the ultrasound with you at all, so you have to awkwardly have your vagina probed by someone when you're dying to know if your follicles are progressing or not, but instead, you have to wait about 5-6 hours for a nurse who has never met you to give you your update. That part is very dehumanizing. Dr. Pavone, however, was more humane and if I had a question for her, she would attempt to answer it, although her written communication skills are very frustrating. and it often felt like she hadn't even read or comprehended my questions. Via phone or in person, she was much better, though, and I was satisfied with her answers. One thing about using any doctor at Northwestern is that your procedures will be done by whoever is on call and not actually your doctor, so you may have strangers doing your egg retrievals or transfers.
Describe the protocols Mary Ellen Pavone used in your cycles and their degree of success.
for IUIs---clomid CDs 2-6 and then ovidrel trigger, used ultrasound monitoring.
IVFs---1st and 2nd attempts, did estrogen priming then started follistim/menopur once menses started, then added in ganirelix towards the end. Pavone felt this was the best approach for women with DOR. Both of these cycles yielded very low follicle development; 2 mature eggs the first round, and then the second was converted to IUI (and only then b/c I insisted I wasn't wasting an insurance-covered ER on 1-2 follicles). First round had nothing to transfer. Obviously BFNs both those rounds
3rd and 4th IVF attempts: clomid 150mg CD 2-5, then added on follistim/menopur/saizen/ganirelix. Better follicle recruitment, 3rd round poor egg quality, but 4th round, finally with 3 perfect embryos to transfer. For the 4th attempt, it should be noted that I had started to use a ton of antioxidant supplements recommended by a 2nd opinion RE and had also started seeing a chinese medicine practitioner and was using chinese herbs and acupuncture weekly). BFNs both those rounds.
Pavone like the response to clomid and didn't want to change anything up if we proceeded with her.
Describe your experience with the nursing staff.
There was a high turnover with the nursing staff---some of them were great, but then I also had a couple who clearly didn't know how ovulation and the hormones were related (ie, checking progesterone the day of ovulation isn't actually going to show you anything b/c it won't have risen by then, but the nurse insisted on doing it anyways). One nurse clearly was in a bad mood when doing my IUI (they do all the IUIs at Northwestern---not the docs) which was really awkward. Half the time, they didn't know why I was there and I'd have to tell them, since they didn't seem to keep notes in the charts. Also, you have to play phone tag all the time b/c they never actually answer the phone, so you have to leave a message to call back and then hope you are able to answer it when they do.
Describe your experience with Northwestern Medicine.
it's a new clinic, so it's state of the art and has a beautiful view of Lake Michigan. The phlebotomists are friendly and so are the US techs, but you are not allowed to ask the techs anything about what they see on the US (also, you are not allowed to see the US screen when they're doing your US---how awkward!). It does run pretty smoothly, though, and you can be out of there by 7:30a if you have to go in for monitoring. It can feel a little like a cattle call, though, b/c women start lining up in the hallway before it opens and you are standing in line with a bunch of women whose hormones are raging and you're all pissed that you're waiting. I think if they just opened the doors and let people come sit in the waiting room, it would feel more civilized.
Describe your experience with your monitoring appointments.
See earlier comment about the clinic. Monitoring hours are 7a-7:45 M-F and 8a-8:30 on Sat/Sun. If you weren't there before 7 and standing in line, it could take up to an hour to get out, but it's faster than trying to get monitoring done at FCI.
Describe the costs associated with your care under Mary Ellen Pavone.
IUIs were about $1200 each with the ultrasounds, meds, and actual insemination. IVFs were covered under insurance once I changed plans, but would've been 8-9K for the package, not including medicine costs. Office visits were $250-350 and the labs were expensive, too, since they were through Northwestern.
What specific things went wrong at this clinic?
- Failed to call in prescriptions to pharmacy
- Failed to order appropriate test
- Provided conflicting information