Wednesday, September 21, 2011

In Need Of Positive Thoughts

I have not been in the mood to write lately. There was a tragedy in the CF mommy world recently that really struck me. It has made me question everything and made me think about my choices for the future. I remember asking my OB if she ever lost a CF mommy or a baby (with a CF mommy) during pregnancy in which she firmly answered no. I felt (falsely) assured that as long as you were healthy enough to sustain a pregnancy and no other factors came into play (for example early miscarriage which is common in ALL woman) the pregnancy would be successful with the biggest fear being preterm labor. Of course CF complications don't wait until the "perfect" time to expose themselves.

I guess the reason I don't feel like writing lately is I feel that with something so horrible happening right now talking about my mundane life feels almost disrespectful. Please send some positive thoughts or vibes or prayers (whatever is your style) to a Cyster that is in dire need of them right now. 


  1. I hear you cyster. I have also been questioning my decision following this tragedy. I was also led to falsely believe that if my CF was under control, then I would have a successful pregnancy. This situation has raised a lot of fears and concerns for me.

    I have been keeping her and her family in my prayers ever since hearing about it initially 2 weeks ago. It's just so sad.

  2. Hey Ladies, I have to say that I was surprised at how the two of feel like you were falsely informed about CF and pregnancy. I can just imagine how you feel, my doctor was pretty straight with me this summer and it bummed me out.

    Hearing the news about the tragedy really hit me hard, too. Now, I understand why my doctor is so reluctant to let me start TTC. I feel like I am my healthiest and she still has reservations and wants me to be stable for at least 6 months. As we all know, none of us are getting any younger and it is frustrating to have to wait but I trust my doctor 100% and would never go against her wishes because I know that she would never put me in danger.

    Just wanted you all to know that I am feeling the same way as you and wish you ladies had the same CF center that I do.....I have read in other posts how your doctor's can be a bit frustrating.

    Lets keep our chins up and pray for a healthy recovery for our fellow CFer and hope that one day we will not have to this pit in our stomach about wanting to have a baby.

  3. Hey girls!
    I haven't heard any updates recently which makes me a little nervous. Hoping for the best.

    I guess I should clarify about the information I was given about CF and preg. My doctor was straight forward that there were always several potential outcomes with CF and pregnancy including the loss of one or both mommy and baby. I guess that the more questions I asked I started to believe the risk wasn't that big because I asked how many babies or moms from my clinic did not make it or came close to dying. Doc said none. I then asked my high risk OB that has experience with CF and she said none as well. You know what they say about assuming, but I guess I assumed that although there was risk that it was low as my clinic and high risk OB had yet to see a case that ended in tragedy or close to it. JWags-If you are willing I would love to know your PFTs, BMI and any other factors that you Dr feels are necessary for you to obtain before you conceive. I feel like I want a third and forth opinion now.

  4. Not a problem! I didn't mean to sound rude in the previous post, I reread it and didn't like how I worded it. Sorry.

    Just last week I had a doctor appt....
    FEV1: 60%
    Weight: 123
    BMI: 21.5

    I just had to start checking my blood sugars and am going to take some insulin before meals so my doctor would like that under control for a few months. My blood sugars weren't too high but since pregnancy is a possibility in my future, she would like me to be on insulin before I would get pregnant.

    I should mention that this past summer I had my gallbladder removed so six months prior to that I was not feeling well. I can understand how my doctor feels but its just that I have waited my whole life to find my hubby and now we want to start a family and I am being impatient.

    The CF Care Center I go to is the one I have been going to since I was five years old and have had my current doctor since I was 15. She knows me rather well and knows that I have high expectations and do not like getting sick, so she wants me to extra healthy. Let me know if you have any other questions.

    P.S. I just LOVE having some other people to talk to about this....thanks!!

  5. It's so nice to hear other stories and what other cyster's doctors say. Thank you for this!

    My doctor was actually all thumbs up about our decision. She had no reservations (other than putting weight on) and she encouraged us to start trying. She said she didn't see it being a problem because of how high/stable my PFTs are (FEV1 is around 81%)...but now I just find myself double-guessing the whole thing... I don't know.

  6. I have to say that having other cysters to talk to is invaluable and I am so grateful for all of your input! This is a crazy journey we are on and it is nice to know we are not the only ones.

    Jwags- Don't worry I did not find your first post rude at all :) I knew we were similar as far as numbers go, but man we really ARE similar! I currently have PFTs just under 60 and I weigh about 125 with a BMI guessed it 21.5! That is so crazy. I am glad your doctor is really making sure you are healthy before pregnancy. I understand not wanting to wait though like you said we have waited our whole lives and none of us are getting any younger, but I am glad she is looking out for you.

    Megan- Can I have some of your FEV because I don't know if you really need all 81%? That is awesome though! 80s are considered "normal" lung function which is unbelievable. I think I was only 80 once in 2003 and only while drugged up on prednisone!

  7. I know - I have been beyond extremely blessed. I do find myself really concerned with losing those high numbers though. I don't think CF stops to look at our PFT values before it's very non-discriminatory in that regard. I worry (with recent events) that a pregnancy may cause those numbers to crash due to the increased stress my body is under...especially with the CFRD.

    Who knows but I agree..I don't know HOW I would handle this journey withought you cysters :)