Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 I'm sorry for what you're going through. As if the expected waiting isn't stressful enough... We too went through this when I was pregnant with Mikayla. We found out when she was 20 weeks. The final results took longer than we were told and I ended up calling Genzyme myself too. " They " just don't get it. They don't understand that even some report is more helpful than no report. It's the waiting that was so stressful. Your message brought back memories and I just wanted to let you know you're not alone. I hope the results come back soon so you can relax and enjoy this special time with your little guy. Donna (13 ncf) and Mikayla (15 month wcf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 I honestly do not know who to be more annoyed with, the Genetic counselor who gave me the wrong info to begin with or Genzyme for being so silly. They have my blood test done, they could at least compare mine to baby's, when it's done, and let me know if he has my mutation............... I am really trying to be patient about it all now that I have a better timeframe in mind. I am sure that in 2 weeks I will be going out of my head again if the results do not come in at least close to on time! ...amnio I'm sorry for what you're going through. As if the expected waiting isn't stressful enough... We too went through this when I was pregnant with Mikayla. We found out when she was 20 weeks. The final results took longer than we were told and I ended up calling Genzyme myself too. " They " just don't get it. They don't understand that even some report is more helpful than no report. It's the waiting that was so stressful. Your message brought back memories and I just wanted to let you know you're not alone. I hope the results come back soon so you can relax and enjoy this special time with your little guy. Donna (13 ncf) and Mikayla (15 month wcf) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 This seems crazy to me, ; the first time there were a lot of delays and they got one mutation wrong anyway; the second two came back in a flash and the third was identical to the first; both were done by Quest Diagnostics in San Capistrano, their only genetics lab in the state, to my knowledge; Stanford just automaticly sends everyone there! I feel so bad for you--now if I were running the world, they would test for every related disease on that giant chromosome #7 while they were at it as so many have multiple conditions, of which cf is often the last to be tested for! However, I have insufficient funds to fun for office at this time! Hang in there; we are all pulling for you and for your child, n Rojas ...amnio I'm sorry for what you're going through. As if the expected waiting isn't stressful enough... We too went through this when I was pregnant with Mikayla. We found out when she was 20 weeks. The final results took longer than we were told and I ended up calling Genzyme myself too. " They " just don't get it. They don't understand that even some report is more helpful than no report. It's the waiting that was so stressful. Your message brought back memories and I just wanted to let you know you're not alone. I hope the results come back soon so you can relax and enjoy this special time with your little guy. Donna (13 ncf) and Mikayla (15 month wcf) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Whoops! " The third was identical to the second test. " Still nuts from Club Dread! Love, n Rojas ...amnio I'm sorry for what you're going through. As if the expected waiting isn't stressful enough... We too went through this when I was pregnant with Mikayla. We found out when she was 20 weeks. The final results took longer than we were told and I ended up calling Genzyme myself too. " They " just don't get it. They don't understand that even some report is more helpful than no report. It's the waiting that was so stressful. Your message brought back memories and I just wanted to let you know you're not alone. I hope the results come back soon so you can relax and enjoy this special time with your little guy. Donna (13 ncf) and Mikayla (15 month wcf) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 It was not so bad for me to be tested, as I had already been accurately diagnosed; waiting for the blood test on our third, who does have cf, and the opinions of the doctors were running 50/50 was rough; they did do the right thing, though, and treat the " kid " as if having cf even prior to confrim ation of the dna test as the sweat chloride was so high--not like waiting for an amnio and the development of the foetus. I have cf, two adult cf carri ers, and one wcf--all still kicking! Glad about your child! As we increase in technological development, we hang ourselves in ever greater sus pense, inevitably it seems! Love to you and to yours, n Rojas Re: ...amnio Hi, We too had an extra long wait with Genzyme. First they lost my blood, I had to have blood drawn all over again and mail it out to them. Then they didn't have enough of the babies cells yet and had to wait for them to grow further. It is all very frustrating and no one knows what it is like to wait unless you have been there. They say they understand at the lab but there is no way they do. Finally we got the results and we were so lucky that our boy Sam is only a carrier. Hugh sigh of relief!!! He is now 5. Good luck and hang in there. I wish you the best of outcomes!!!! Mom to Josh 10 wcf & Crohn's and 5 nocf but wants to do therapy for his brother and always keeps him company. Quote Link to comment Share on other sites More sharing options...
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