Wednesday, 30 June 2010

That warm fuzzy feeling...

It just isn't there anymore.
Between me and the Swedish clinic that is.
It seems the more questions I ask, the less love I'm getting back.

I sent an email about a week ago to Dr. Boss Lady and haven't heard back so today I decided to call. My favorite Nurse Inga answered the phone and was happy to hear we're looking at joining the circus again this fall. She immediately gave me the tentative run-down of "wandings", "shoot-ups", "pick-ups" and transfers, but I stopped her in her happy ramblings by saying:
- I do have a few questions before we commit to anything.


She asked me to go ahead, and I started down my list of questions for Dr. Boss Lady:

• Our first round of IVF gave us four blastocysts. The fresh transfer resulted in a miscarriage. Our first FET was negative (with a faint second line that disappeared the day after). Our two remaining blasts did not survive the thaw.
Do you have any theories about why we had a statistically bad outcome? Egg, sperm, and/or embryo quality? Immune problems or a combination? Any suggestions to improve the stats this time is greatly appreciated.

Nurse Inga: - You realize we have very high standards for the embryos we freeze here, and there's an 8% risk of embryos not surviving the thaw in spite of being top notch.
Me (thinking, not saying): - Um, yeah, but last time I checked 2/3 is more like 66%. If this happened in any other situation I'd assume the team responsible would at least have an internal discussion of what went wrong.

• Do you believe that we can increase our chances by going through additional testing? Karyotype and immunology testing.
Should I have a hysteroscopy to look for polyps since I'm experiencing similar symptoms as before my polypectomy in Feb 2009?

Nurse Inga: - I'm writing, immune testing, polyps...

• I've heard of positive effects of using baby aspirin in combination with IVF, I also understand that there's no studies to prove it. My question is: Can it hurt?

• Egg retrieval of my left ovary was complicated because of its location and required the pain management nurse to assist the doctor by pressing down on my abdomen, leaving her unable to administer more meds. Can I request an additional person in the OR?

Nurse Inga: - Oh my, I'm sorry to hear that, we'll make sure a third person is available for your retrieval this time. You shouldn't be in pain.
Me, (thinking): - You think! (saying): - That would be great.

• Diver Dude's planned PESA turned in to a TESA when they were unable to find a sufficient amount of sperm. Is there any reason for a back-up plan such as donor sperm?

Nurse Inga: - Well, we don't have a donor program at our clinic...
Me, saying this time: - What? so what happens if there's no sperm? We just pack up and go home?

• Can you send my prescriptions here, or can a family member pick them up at the pharmacy for me?

• If necessary can I have some of the evaluating ultrasounds done locally?

• Could you please send copies of our medical records, electronically or via snail mail?

When I finished my list of can-do?'s the other end of the line was quiet.
- Hello? Are you still there? Nurse Inga let out a small sigh and asked me if I would like to schedule a phone consult with Dr. Boss Lady. I told her it sounded like a good idea and we agreed that August 11 would be a good day. After Nurse Inga promised to send our record promptly we ended the conversation.

Now I've got a bad taste in my mouth. I shouldn't feel like I'm inconveniencing them by calling. I shouldn't feel pushy or rude for not wanting to be "just a patient" and demand personal attention. Should I? This clinic in Sweden has one of the best statistics in Europe and the their prices for treatment is about half of what it is here in England, and oceans away from american IVF costs... Should I just trust that they know what they're doing and go with it?

I could get a second opinion, but I'm not sure we could really afford going anywhere else. Possibly another clinic in Sweden... I don't know, I don't think that I have much of a choice.

Any success stories you have of pregnancy in spite of a less than perfect relationship with your clinic and/or RE would be greatly appreciated. Or, I guess, success stories of changing clinics/REs would be helpful too.

19 comments:

  1. Just my two cents....you should feel totally comfortable with your clinic and the staff. There is just too much riding on each cycle not to have all your questions answered. This is their job. Have you thought about doing a consultation some place else just to hear what they have to say? Not that you need to change clinics, but another opinion may be in order. wishing you the best of luck.

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  2. this willtake some time, go get a drink...:)

    I started my treatments with my OB/GYN and stayed with them out of loyalty and being with her forever, I loved her and ran right back when I got PG.

    However, the dr's at the fertility clinic were half and half for me. There are two dr's that started the clinic, the woman (please don't take away my feminist button) is a total B*tch, seriously, after our consult with her I didn't believe I could catch a cold, let alone get PG. She'd been on the TODAY show, she was published and famous etc, but she had NO bedside manner. In fact one of my early follicle finding wandings she did, it took HER 15 minutes to do it because she didn't know how to work the machine. UGH. It would have been fine if she laughed along with us or whatever, but she didn't. Then there was another dr who did our initial consult and he was Ok...just ok. I liked him, John loved him...he did a lot of my wandings and phone calls right before our ER..and I'd leave every day not knowing what he'd had to say about anything. It was always good news, but I never EXPECTED good news...you know???

    the one dr we adored..was actually the one who finally found the twins in my uterus after the PA at the satellite clinic couldn't...NO I'm not kidding. He met us THAT day and was just amazing..

    the nurses were fabulous, the Other PA , AWESOME. That's why we stayed, because the support staff was just amazing. Like family, I still keep in touch

    now that I've talked your ear off, I do think that you should feel comfortable asking questions, geting them answered and just generally feeling good about your experience there. I will tell you the day of my ER, I had the BIG BOSS again (PITA) and before the ER she was worried about my blood pressure and how many eggs she'd get etc, setting me up for the "bad", when I came to...she was SMILING, I never saw her smile except in pictures for her brochures. LOL and telling me she got 15..and they looked Good.

    I in a drunken stupor with her standing there, said to John "Did Dr xxx just smile???" he guffawed and she actually laughed.

    You just never know...and she was back to being a PITA in seconds, but hey her support staff got and kept me PG....I guess after all this, my best advice is just FOLLOW YOUR HEART and listen to it.

    Love my friend, love. xo

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  3. No success stories here, BUT we dumped our local clinic in favor of a very well-known clinic that believes the immune system/pregnancy connection. Money wasn't really an issue, both clinics were charged typical U.S. prices (you are right, it costs a bloody fortune). Even though we weren't successful, I don't regret for a minute that we used the clinic we did. While I am still coming to terms with the grief of it all, we did everything we could.

    If your DH is only on board for two more tries, then getting a second opinion from a clinic in England might be a good idea. That would only cost a few hundred Euros, right? You'll probably get quite a bit of insight from having someone else look at all your records and make a recommendation.

    Best wishes to you.

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  4. You know that in Sweden you have to be pushy to get stuff done in a timely fashion!
    May I suggest looking into Sophiahemmet - they offer donor sperm if need be!
    Have DD's swimmers morphology been tested?
    I agree with cgd & Heather - at the very least get a second opinion!
    Not to rub your nose in it or anything, but have you seen the picture on my blog?

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  5. Ugh I hate dealing with doctor's and nurses when they give you the impression you are inconvieniencing them. Hello??? I'm paying you and you work for me, if I want answers to 10001 questions, that's your job. Honestly I was never jumping for joy or thrilled to work with our clinic. Our insurance didn't allow us to choose clinics, but we were considering switching and paying out of pocket if our last IVF hadn't been successful. Obviously we were very lucky, but I will tell you I still have questions today that have never been answered. If you are able to get a second opinion I would totally do that. It can't hurt and you may end up feeling like somewhere else is exactly where you're supposed to be. Good luck!!

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  6. Hi Princess, first of all i have to say i'm a great believer that you have to feel in tune with your clinic and doctors. IVF is stressful enough as it is without you having doubts that you could add something to your treatment to have a better outcome. Of course you are perfectly entitled to ask as many questions as you want and they have to come up with sound answers that will convince you it's the right path (whichever the path is). Your clinic seem to be very good at the natural part (natural FET!! I envy that! Even just the possibility of it!) but for example my clinic is much more on the "aggressive" path, they leave nothing untouched. you can email me if you want to consider Ireland as an option, not sure about costs versus Sweden but it's no harm checking it out! Much love, Fran

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  7. I would say to stick to your guns and see how they respond. Inga might not have been prepared for you to be so forward and informed. Maybe the conversation with Dr. Boss Lady will go better and then I would say you should re-evaluate from there. If you still feel like you're not getting answers to your questions that you would like, I would say you might want to at least do a consult somewhere else. I changed RE's and (while still not pregnant) the level of service and responsiveness to me has improved incredibly at the new clinic. I have only done two treatment cycles with the new doc (vs. 8 with the old) and already have learned so much more about myself, my treatment plan, etc. than before. There are definitely many, MANY RE fish in the sea and I wouldn't close yourself off from switching but maybe give them another shot to make sure Inga wasn't having a bad day.

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  8. I'm sorry you have so many unanswered questions from the RE's office. Unfortunately, as a patient, you have to stay on top of them to get answers.

    I hope the nurse will take you seriously and the dr will be able to provide answers and direction. :)

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  9. I think most of these posts said it all. Maybe you jsut caught the nurse off guard with all the questions. I say go for a second opinion in England. See what that RE thinks of your file. But please remember that your IVF was successful and that many many women have miscarriages, even the fertiles. Go with your gut, but I swear I believe it's going to happen for you!!!

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  10. My clinic is a pain in the ass, to be honest. 70% of the nurses are nice, but 30% are not so much. It is a group practice, so you get instructions from whomever is covering that morning, which leads to some serious lack of continuity issues, and has had me given instructions that conflict with what my RE says. And my RE, while I think she is super competent, is not all that "squooshy" and can be hard to reach. So that's why I was planning to switch. But all that said, I'm kind of gestating something right now, so I guess I'm a tentative success??

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  11. No, you shouldn't feel badly for asking questions - you are RIGHT to want more information.

    My clinic uses baby aspirin for every patient - some evidence it helps, no evidence it hurts - just an FYI. I think if you do not feel comfortable with your clinic, you should consider other options. BUT, the upcoming convo might go well with Dr. Boss Lady. I'd discuss other protocols, too - sometimes, a change of meds can do a lot for embryo quality. We only got 9 eggs (and I have PCOS, so we expected a LOT), and only 7 were mature, only 6 fertilized, and by transfer day, we only had 4 growing, 3 transferred, and none to freeze. When I discussed it with my RE, he said he'd change up the protocol for our next IVF (we assumed the IVF would probably fail). He felt I stimmed a little too fast, and he wanted to keep me on lupron longer and adjust the follistim/luveris ratio, etc. So, I'd talk to your doctor about the protocol and see if that gives you any more news.

    Sometimes, especially when all the eggs are from the same cycle, you just don't get the "perfect" quality - so a fresh cycle can bring you better luck. The fact that you had a chemical and then an FET didn't take isn't necessarily a sign of something else wrong...but may be a sign that your fresh cycle just didn't get a top quality embryo, and a new fresh cycle might.

    Good luck! - Tkeys

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  12. I think all nurses get that tone. I think stats are what really tell you about the clinic. I really hated the last doctor's clinic but the fact is that they don't have to be patient with your questions or nice to get you knocked up. If they have the best stats...stay with them (unless you are going to need DS). It's such a pain to push them, but make sure that you get your questions answered. I'm so glad you are going forward. Hugs

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  13. Hopefully the phone consultation with Dr Boss Lady will go well and you'll get back on track. My experience is that once our second IVF failed, I lost confidence in my clinic - largely because the protocol on IVF #2 had been identical to IVF #1, and they weren't planning to change anything for the third attempt. I couldn't understand why they were willing to put me through all that again (and again and again) if it had already failed twice and there were other protocols that they could have tried. It was a hard decision, though, as I loved the nurses there.

    Our new clinic couldn't be more different - much bigger and less 'cuddly', but the top consultant reviews the file of everyone undergoing treatment daily, and daily dosage of drugs is determined on the basis of daily blood tests and regular scans. The treatment is totally tailored to you, and if you get a BFP, they continue the monitoring and care during the pregnancy. They are also very big on diagnosing and treating immune problems which might affect implantation or cause early miscarriages. I haven't been successful with them yet, but their results speak for themselves, and my DH and I have absolute faith that if anyone can get us pregnant, they can. Might be worth a consultation with them, just to get answers to a few of your questions - they're in Upper Wimpole Street. xx

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  14. I think it's time to get a second opinion! You deserve better treatment:

    http://infertilitydoula.blogspot.com/2010/06/getting-second-opinion-its-not-cheating.html#comments

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  15. Deinitely time for a second opinion!!! I don't really have any success stories or anything, but I think it's very important to feel both comfortable with and confident in your doc and clinic.

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  16. Unfortunately, we are doing our one and only IVF cycle with the clinic where we started and we love them so far, so I don't have a lot of experience, really, in this arena. We never had to shop around, and it's gotta be rough. I imagine that if you are worried, it's not going to hurt to get a 2nd opinion. Plenty of women ride 2 clinics until they figure out which one they like the best....

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  17. I'm new to your blog and I'm sorry to hear about the stressful experience with your clinic. I loved mine right away except for one doctor that just irritated me for some reason. I think you should feel comfortable but at the same time if you can't afford to go to another clinic I say stand your ground. Ask all the questions you have. You are paying them. And I have no idea or advice on your questions. However my first IVF no baby aspirin= no baby. My second IVF with approval from my RE I took aspirin and I got pregnant. Could be nothing but I like to think it helped. Good luck!

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