Follow up with Dr Harry

V

Vampy

New member
SO i went back to dayton today and Dr O an Dr Harry was really impressed. I gained 4.5 lbs, i am up to 130 i was always 114. My pfts before stay was 65, and my pfts after are now 73, which are still climbing ( i hope lol) I talked to them about me and my fiance maybe trying for one more baby and Dr O said he has full confidence that i could have one more and be perfectly fine. He gave me the full go ahead seal of approval!
Mutations i found out are N1303k and f508del. I talked to them about the new medicine for 508 and they in deed are doing two studies one for double delta and one with one gene of 508, keep our fingers crossed <img src="i/expressions/face-icon-small-smile.gif" border="0">
I know that some ppl with cf may been help from a OBGYN to concieve a baby so i asked my goofy incredibly hilarious dr if i should call mine and have her help, he said noooo u need his help (talking about my fiance) LOL we busted out laughing and he sat beside me and said "now do we need to have the talk about the birds and bees" OMGOSH i laughed so hard, im like no i think i figured that out w my first pregnancy.
secretions are still thin and watery ty to the hypesal. no more mucus plus and no more shortness of breath lol dr Harry put me on strict exercise 5 times a week of Zumba. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Zumba is great lol no need for coffee with zumba.


OOOOO and my diabetic test was NORMAL!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
2

2005CFmom

Super Moderator
I see in your signature line your son has a completely different mutation than you carry. How sure are you that he has that mutation? Genetically he would have to receive one mutation from you, so he has either N1303k or f508del. If it has been confirmed earlier that he indeed has G411D also, that would mean he has CF. It would definitely be a wise idea to have a doctor look at all this info and have him checked.
 
H

hmw

New member
I was wondering along the same lines as Teri- upon seeing g551d in your sig I wanted to ask if you were on Kalydeco and how you were doing, and then saw that you have been dx'ed with entirely different mutations. What led to this confusion? And as Teri said, what about your son? He has one of your mutations as well... if he also has g551d he has cf. Now that they have straightened out your genetics hopefully they will do the same for Luke.

In any case I'm glad you are doing well and hope it keeps up! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JennifersHope

New member
I am so happy you ate doing well. I am glad your doctor thinks you are healthy enough to have another child. I just have some concerns I can't help express. Like others have said, if Luke really has that other mutation, then he has CF. you have to get him straight first. Having CF yourself, then possibly another child with CF, then getting pregnant is huge. It is going to drain you a lot. Financially, how are you going to support two children? I am only asking because of previous posts you have made, including losing custody of Luke for a while.

I just want the very best for you, you and Luke deserve it. It sounds like you got yourself a great boyfriend. I am so happy for you and if you chose to move forward with a second child best of luck to you
 
G

Gorf

Guest
Congrates on your health Vampy. Dr. O and Harry are the greatest. Here's hoping you get your wish, and God bless.
I will have to ask them about the bird and the bees when I see them Monday.
 
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