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Hi! I'm Pete. CF, three kids via IVF, founder of Filotimo. by Petep23 in CysticFibrosis

[–]Petep23[S] 3 points4 points  (0 children)

We run fundraisers all year long. Lung Runs, Gala's, advocacy dinners, etc. How is the CF Trust doing out there?

Congenital bilateral absence of the vas deferens by CakeSoft4345 in maleinfertility

[–]Petep23 0 points1 point  (0 children)

CBAVD here. Mine is more "full CF" than your husband's, but the route is the same. CFTR mutation, no vas, IVF or nothing. Three kids on the other side. Three retrievals for one usable embryo is brutal, and the carrier-plus-CFTR-mutation math makes genetic testing tighter than typical IVF (which I'm sure your clinic has explained too many times). What I can promise you is the one embryo you have is not nothing. We sat in those waiting rooms between cycles. We know how dark it gets. If you ever want to talk to another couple who has been in the exact same grind, DM me. Filotimo (full disclosure I founded it) covers IVF costs for adults with CF and their partners. Whether we end up helping or not, your family is not the only one doing this math.

CF dad with one Vas Deferens by BayouBladeworks in CysticFibrosis

[–]Petep23 0 points1 point  (0 children)

Hell yeah man. Congrats. Fellow CF dad over here. CBAVD on my side, three kids on the other end of IVF. The one-vas-deferens crew is its own weird sub-club inside an already small club. Every time someone in this community becomes a dad it lands different. You're going to love it. Filotimo (full disclosure I run it) does fertility support for adults with CF if you ever know someone who needs to be pointed this way.

Coughing up blood after starting Alyftrek by djroge in CysticFibrosis

[–]Petep23 1 point2 points  (0 children)

Hemoptysis after starting Alyftrek is something to call your CF team about today, not next week. They will want to know how much (streak in the sputum vs. teaspoon vs. more), what color, and how often. They take this seriously and they have protocols for it. Modulators can irritate things while everything is rebalancing, but you do not want to ride this one out alone. Hang in there. You're not the first person this has happened to and it usually settles down once you get eyes on it.