Monday, September 21, 2009

The FDA...

So I had a post that I wrote 2 weeks ago that I wanted to include with my posting on the FDA Final Rule... After reading it I decided that it was just too angry of a post that was meant to be informative. So I figured I would wait till after my appointment with my new RE and then see if I could revisit the post and be less angry.

Well I am not. Well I am still half angry. While the new RE is great and is willing to work with us and our situation to have my embies transferred, what I learned from her was more unsettling. Aside from her reassuring us that we had not violated any laws she also went over my chart and I learned all kinds of stuff about myself my cycles that my old RE never told me.

I am not a "new" patient, meaning that having survived 3 kinds of cancer to date and a host of other problems I have become familiar with how it feels to sit in front of a doctor and get bad news. So I was very surprised to learn from my new RE that my old RE never told me that I have two MTHFR gene mutations. Even though when my husband and I were sitting in her office to get the lab results she simply said, "The only thing we found was that you have low B12 so we are putting you on Folgard". I sensed that she was not telling me the whole truth so I probed her further... "I said that is it? That is all you found"? and she relied with a curt and short "Yes". I said "Okay well this sure was a big production just to tell me that I had low B12, I don't understand why I needed to take time off work to come to this appointment". She just shrugged and said that she would talk to my nurse and let her know that in the future they will give me my lab results over the phone. That was it, she got up and left us sitting in her office without even a goodbye. I was not quiet sure if we were done till a minute or two later the nurse came in and said we could go and that there was no need to go to check out. The END. Done.

So what I learned from my new RE is that my old RE really meant nothing personal by giving us a hard time with our donor. My old RE really just never gave a damn about me or my life or if I ever got pregnant. This concerns me because, it would indicate that my RE never intended to help me get pregnant from the moment I walked in the door and for that I am once again sad and in mourning. I am mourning the loss of 3 years and 3 IVF cycles with someone I thought would help me only to learn they never had my best interest at heart. I was just a price tag to them, dollar signs that floated in her eyes when she looked at me. Maybe I meant a new purse or a new custom pair of specially made orthopedic shoes to her. Whatever the case for three years when I sat before her she never saw me, not once not as a person or a human being anyway. So I spent the weekend mourning the loss of trust that I had for a doctor. I know that there are lots of people that have bad experiences with a doctor but this is my first and I have been to almost every specialist there is.

However, while I mourned the one loss I celebrated many gains. I gained new knowledge of my self and I gained a new trust for a new RE who spent hours reading and studying my chart before she saw me so that she could discuss everything little detail with me on my first visit. I was impressed with how she knew so much of what we had been through already. From the moment that I sat in her office to meet with her, I noticed one thing that I never felt before with my old RE. I felt a sense a peace. I felt comfortable sitting across from her talking to her something that I never felt with my old RE. Whenever I would sit in my old RE's office I always felt so small and diminutive and nervous, even if she was not in the office I felt this way. The first time I sat in her office I thought to myself I want another doctor but I said you have to meet her before you think that silly, so I squashed the feeling. So I tell you to trust your feelings, your gut reactions, because often those are cues telling us that something is not right for us.

With that if your gut is telling you to use a directed donor, then do what your heart tells you is right. Here at last is the link to the FDA's website on the final rule. I hope it helps you to find your own bit of peace.

http://www.fda.gov/BiologicsBloodVaccines/TissueTissueProducts/QuestionsaboutTissues/ucm102842.htm

Blessings,
Adela

3 comments:

  1. Oooooh, I angry for you all over again! To not tell you about the MTHFR is so wrong. Will the new RE put you on Lovenox? I only have one MTHFR mutation, which theoretically should make no difference, but I started Lovenox on the day of my second donor embryo transfer (didn't use it on the first cycle) and stayed on it until week 8. Don't know if it made any difference, but I'm 28 weeks today!! :-)

    BTW, I have 2 full boxes of it. Lovenox comes in sealed, pre-filled syringes, so they are tamper proof. Do you want them?

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  2. Thanks so much for your comment...I had to learn the hard way before we got to our 3rd fertility doctor....after the first 2 were a disaster! Good luck!
    www.wishtobeamommy.com

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  3. Hello!

    My name is Elisabeth, and I am an infertility / repeated pregnancy loss "veteran". You can read a little bit about me and my experiences in my blog: drhousewife.blogspot.com . I am completing a PhD in Counseling Psychology, and my dissertation is focused upon the impact of infertility on marriage. I believe strongly that there is a need for better support services for men and women who are undergoing IF diagnosis and treatment, and my hope is that this study will aid in the development of such services.

    I am contacting you after stumbling across your blog. I am recruiting participants for my study, and wanted to invite you and your husband to take part. All that would be involved would be the completion of an online survey, that would take approximately 20 minutes. All couples who complete the surveys will receive a voucher good for a pair of free movie tickets at a Regal Cinemas.

    Please let me know if you are interested by emailing me at UTInfertilityResearch@gmail.com .

    Best,
    Elisabeth

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