Tuesday, June 5, 2012

Very Short Update

Very short update here as I have to be getting to work. I have neglected putting dates up about my IVF cycle because right after finding out about starting my Lupron injections, I also found out my right arm has a blood clot in it.

3 weeks ago, I had an IV for the colonscopy and had some issues with the IV. Sure enough, it decided to form a blood clot, and I am now on blood thinners for it. Ultimately, it's good that they caught it and are working to resolve it, but it does delay things on the IVF front.

I'm not sure how long the IVF will be delayed, but I should find out in the next day or two.  I'm just waiting to hear from my CF doc and then my R.E. It's irritating to be so close and then have another setback, but I do want to be in the best health possible for pregnancy, and a blood clot probably isn't a good way to start the actual pregnancy process.

On another note, I saw my sinus doctor yesterday, and everything looks good in my nose so I have avoided surgery yet again. I also saw a cardiologist for the clot, and for general sign off before pregnancy, and she told me she is 100% fine with me getting pregnant! YAY!!

So some bad news and good news all rolled into one! I will update when I know more!

Also, just saying prayers for my sister as she is supposed to get her latest PET scan results. This will be what determines if we go through with surgery on June 12 or wait and do more chemo. She decided to take a spontaneous road trip to Charleston, South Carolina...I think she needed to get away and stop thinking about it all.  


  1. Hi Megan:)
    My wife posted a comment on your last post (Maria anonymous)and I am glad to hear your thoughts have changed on the Lupron. Hang in there with that blood clot.:( I think its best to take care of it before the IVF begins but hey I am no doctor. The IVF road is a roller coaster ride for sure and stressful enough so take care of that and get it behind you.

    If I could offer one word of advice on this IVF journey I would have to say be patient and enjoy the ride. People "who make babies" the natural way do not get to see all this exciting science behind having a baby. It truly is a miracle and I hope you and your husband both get to experience the miracle my wife and I have. My wife is 21 weeks pregnant with our little girl Alayna!!!!!

    Did your husband get tested to see if he was a gene carrier??

    Also, I hope your family receives positive news on your sisters scan.

    Take care Megan and keep a positive outlook!!!!


  2. John,

    Thank you so much for commenting on my post. Your wife's comment made me feel much better as does yours. I am so happy to hear that you two are expecting a precious baby girl! It's so very exciting to hear fellow cysters/fibros who are becoming parents. Amazing how things have changed since we were born!

    Also, what a wonderful piece of advice. I think I'm always in a rush to get to the next step, and I never take the time to really sit and think about the miracle of it all. Your words resonated so loudly with me when I read this. Thank you so much!!

    As for the gene test, he did have the entire gene sequenced and came back negative as a carrier which was great news for us! :) Did you get tested as well?

    Thank you for the good wishes on my sister's news. I'm actually updating about that in just a few minutes!!

    Thanks again, John. Your comments truly made me feel great!

    1. Hi Megan,
      Sorry ahead of time for this short novel that I wrote.

      I am glad to hear that my advice made a positive impact on you!
      So let me tell you a little about myself (I hope to not write a book)
      So I was diagnosed with CF when I was 12 years old. Yea odd right. I had a sweat tests done when I was a little guy which came back normal. I always had a cough and was rail thin. So finally when I was 12 years old the allergist wanted me to have a sweat test done and a cheek swab for CF genes.
      Again, the sweat test came back normal but the cheek swab revealed CF :( My genes were DF508 and a rare gene 3849+10kb-C-T. It was a shock but I was glad we had an answer. One thing I am very thankful for is never being hospitalized. (Knock on wood!)I am relatively healthy which I do not take for granted. Another amazing thing is that I am fertile which most CF males are not over 95% are not.

      My wife and I never thought we would have trouble conceiving as I was fertile and we never thought she had anything wrong. So the first step in our conceiving process was for Maria to be tested to see if she was a CF gene carrier. My wife is (caucasian/asian) and my CF Dr. thought she wouldn't be a carrier but I wanted to be sure so we had her sequenced for over 1,000 genes at Ambry Genetics (Thanks Ronnie Sharpe for sharing info about Ambry). So the blood test results came back and she was a carrier of a CF gene. A very rare gene that my Dr. never seen. I guess this gene is derived in Japan. This was a very big shock. So now we wanted to make sure our future child would never have to worry of CF. So in order to do this we would have to do Pre Genetic Diagnosis with IVF.

      So then my wife had another test to see if she was infertile. The insurance required this before we begun IVF. Her test showed she had a blocked fallopian tube. Now insurance will pay for the IVF She then had surgery to remove the fallopian tube that was blocked and they also removed half an ovary and put a clamp on the other fallopian tube :( (MY WIFE IS A TRUE WARRIOR!!)

      So now we were ready to begin IVF with 1.5 ovaries which makes it a little more difficult. Bc of possibility of less eggs and the PGD. PGD is when they take the embryo at day 3 and remove a single cell and send it off to test for CF. The lab has my gene sequence and my wifes to check for CF on the embryos. Our first IVF we had two non CF embryo's implanted which ended in a chemical pregnancy. This was really hard but it meant my wife was able to get pregnant. Second IVF we had two non CF embryo's implanted and one of them took :)!!!!

      So the moral to this story, when you feel you have the whole deck of cards stacked against you, you can still beat it. Our journey had a lot of tears and sweat but this brought my wife and I even closer!!!

      Never give up Megan!!! If you want it to happen it will!! BEST OF LUCK to you and your husband.

      Prayers are being sent to your family and sister!

      If you ever have a question my wife and will be glad to answer it jtmloneil@gmail.com



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