physician help

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physician help

Postby Cecca » Jun 15, 2004 11:18 am

Hi Anna,
Thanks so much for your support and kind words. Coincindentally I just went this morning for my post-op (post-termination) OB visit and told my doctor that I had regrets about not inquiring before terminating about other medical options there might have been for me. I asked her what other tactics they might try if I did decide to become pregnant again. She said that other than the "older" and "more tested" drugs like Phenergan they occasionally use Meclizine and Zofran as a second line of defense. She also mentioned that Zofran can cost about $40 per pill and some insurance companies cover it but some do not. That was about all she had to say, which I thought was pretty little in terms of my feeling confident that they have a plan or protocol. She did say that immediate or preconception treatment can be considered. All in all, I would still be very interested in finding someone else who was more progressive/aggressive in this field.

I live in Deep River, CT, which is about 30 miles from New Haven. As I mentioned I delivered my daughter at Yale-New Haven Hospital, which one would assume is pretty darn good. I have also heard good things from other Moms about Hartford Hospital, about 50 min. from me. I am a medical professional myself (physical therapist) and I am a great believer in the quality of medical care being far more important than convenience. Therefore, I wouldn't consider driving time to be an impediment if there was some OB within 90 min. of me worth checking out.

Thanks again for your reply. My own non-religious prayers go out to everyone on this board, and especially everyone who has yet to find this board. Being in contact with others who know this awful "disease" has been like an oasis in the desert for me.

Cecca

DS-Reilly 5/1/2000
DD-Sonia 12/30/2002
lost angel 6/3/2004 :cry:
Cecca
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Re: physician help

Postby MamaLily » Jun 16, 2004 10:41 am

Cecca -

It really sounds like this doctor is not the right one to help you with any future pregnancy. I am sure we can find someone great, who will be proactive with care and not dismiss a drug such as Zofran because your insurance may or may not cover it! :?

If you can give me a few days, maybe I can find a few names of potential doctors. I suggest you see a perinatologist, or at least have one lined up for consultations.

I'll be in touch!

- Anna
"The little reed, bending to the force of the wind, soon stood upright again when the storm had passed over." - Aesop
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Doctor find

Postby Cecca » Jun 16, 2004 12:20 pm

Thanks Anna,
I will wait to hear more from you. I am not sure I will ever be able to get myself to go through pregnancy again. On the other hand, being totally prepared for what may come could make the difference. Along those lines I'd love to have a new doctor or two to consider. Thanks so much for your help.

Cecca
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Re: Doctor find

Postby MamaLily » Jun 18, 2004 10:59 pm

Cecca -

I just looked at the website for Yale-New Haven Hospital (www.ynhh.org). It is very impressive. You can search for a physician online, and they also have a referral phone number that you can call 24 hours a day.

Anyway, I did a quick search for doctors with a Maternal-Fetal Specialty and came up with these 6 names: Joshua Copel, Errol Norwitz, Michael Paidas, Donna Neale, Edmund Funai, and Urania Magriples. They are all in New Haven. You can read about them by looking at the website.

I think it would be worth looking at the website for this hospital and possibly caling the referral number. In my opinion, you definitely ought to be with a perinatologist/Maternal-Fetal specialist.

Once you find a few names, you can begin to talk with doctors and ask questions about their treatment of HG. I can help you, if you want!

I know that I can't begin to understand the grieving process you are going through right now. My thoughts are with you. I want you to know that if you ever do decide to try for another pregnancy, I will be there for you. And I know you can make it through - with the right info, support, and doctor.

Let me know what you think of all this.

- Anna
"The little reed, bending to the force of the wind, soon stood upright again when the storm had passed over." - Aesop
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Postby MamaLily » Jun 18, 2004 11:06 pm

Cecca -

I just found this interesting website...about a Yale High-Risk Pregnancy PROGRAM. Exciting, don't you think?

http://www.yalemds.org/ProgPage.asp?nam ... cy+Program

They have a phone number you can call. Wouldn't it be great if you could get lined up with a GREAT doctor?

And here is the link for their Maternal-Fetal Medicine:

http://www.yalemfm.org/

- Anna
"The little reed, bending to the force of the wind, soon stood upright again when the storm had passed over." - Aesop
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Great work!

Postby Cecca » Jun 19, 2004 3:40 pm

Hi Anna,
Thanks so much for all of your efforts. I feel like such a dud not having done this myself a long time ago, like two pregnancies ago. I have not looked yet at the links because I wanted to send my thanks right away before I get absorbed in the info.

One other question for you- can a perinatologist or maternal-fetal medicine specialist also act as OB, or would it be a scenario where you saw two doctors during the pregnancy? Just wondering how that works. Anyway, off I go into cyberspace. I'll report back with any good info. I get. Thanks again!

Cecca
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Re: Great work!

Postby MamaLily » Jun 22, 2004 12:14 am

Cecca -

I'm so excited to hear about your findings. Please keep me posted!

Yes, a perinatologist/MFM specialist can act as your "regular" OB. You do not need to see 2 different doctors. (Check with your insurance to verify, of course.) If I ever have another pregnancy, this is my plan - to just see a perinatologist.

Good luck to you. I'm very hopeful!

- Anna
"The little reed, bending to the force of the wind, soon stood upright again when the storm had passed over." - Aesop
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Spoke with Yale

Postby Cecca » Jun 22, 2004 1:44 pm

Hi Anna,
Just to keep you updated, I called the High Risk Pregnancy Program number and was directed to the Continuity of Care Coordinator, Candace Kohn (don't know spelling but last name rhymes with "cone"). She was very helpful and spent about ten or more minutes on the phone with me discussing my past pg. experiences and the sad story of my termination. She also outlined all the meds and approaches they try with HG women, though cautioning of course that "There is no guarantee that any of it will work!" Anyway, I can have a "pre-conceptual consult" (which she encouraged me to discuss with my insurance co. as it runs $350-$500 and is sometimes not covered), or just come and see them when I am already pregnant.

Disturbingly, she knew of my OB/GYN group (they all work at Yale of course) and said they are among the best in the area! I told her I felt they had not been proactive or progressive in their treatment of me. She was surprised that they had never tested my thyroid nor offered me home IV services, especially since I'd had pretty severe ptyalism all three times.

Thank you again for getting this info. for me. IF I decide that another pregnancy is an option (still feel like that third child was a gift that came to us on it's own, and now that it's gone I should just hang it up and let go of my childbearing years) I'll keep you posted on any doctors that seem promising for listing in your network.

Best to you and everyone here,
Cecca

HG pg #1: DS b. 5/1/2000 Reilly
HG pg #2: DD b. 12/30/2002 Sonia
HG pg #3: lost angel, terminated 6/3/2004 and will regret it until the day I die and forever after.
Cecca
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Location: Connecticut

Re: Spoke with Yale

Postby MamaLily » Jun 26, 2004 12:25 am

Cecca -

Thanks so much for the info. I'll have to keep Candace Kohn on future lists for people in your area. I'm curious to know the meds and approaches they try...if you remember what they are, please let me know.

I don't know what to say about your physician group. She thinks they are some of the best doctors for HG? That is just strange. Did she have any other names of doctors who might be great? I really hope you find a great one - for YOU (and not just for the network)!

Good luck to you. I want you to know that I am here for you, whether you have another baby or not. Thinking of another baby while your loss is still so fresh must be very hard. Perhaps a little more time will help you come to a peaceful decision about what is right for you and your family. Take care of yourself, and please keep me posted on how you are doing.

Great big hugs to you...

- Anna
"The little reed, bending to the force of the wind, soon stood upright again when the storm had passed over." - Aesop
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