32 y.o. male - only diagnosed with CF after experiencing infertility

wanderlust

New member
Hi there!

Just today, we found out that my husband carries two mutations for cystic fibrosis, Delta F508 and 5T. We're still in a state of shock (not uncommon, I imagine!) as he's otherwise healthy. The only reason we had testing done is that we've been trying to have a child for the past year.

Two sperm tests last fall revealed his azoospermia, coupled with low volume. We moved on to a well-respected fertility clinic and saw both their urologist and their genetic counselor. His urologist says that he technically has a "genital form of cystic fibrosis" since it's only affecting his fertility. A previous urologist had done an ultrasound and not noticed anything amiss, but our new doctor thinks he's missing part of his vas deferens.

Soon, I'll be tested to see if I carry any mutations for CF, too. We know that IVF is our only option to have a biological child, and we're definitely weighing all of our options. I have a wonderful 7 year old son from a previous relationship, and we have discussed not having any more children or looking into adoption.

It's still overwhelming, and I thought I'd post to see if anyone else has been in our situation. I found a number of posts from folks who were diagnosed with CF as adults, but many of them seemed to have symptoms. I'd also love to hear from any others who've dealt with IVF or PGD, too.

Wanderlust
 

wanderlust

New member
Hi there!

Just today, we found out that my husband carries two mutations for cystic fibrosis, Delta F508 and 5T. We're still in a state of shock (not uncommon, I imagine!) as he's otherwise healthy. The only reason we had testing done is that we've been trying to have a child for the past year.

Two sperm tests last fall revealed his azoospermia, coupled with low volume. We moved on to a well-respected fertility clinic and saw both their urologist and their genetic counselor. His urologist says that he technically has a "genital form of cystic fibrosis" since it's only affecting his fertility. A previous urologist had done an ultrasound and not noticed anything amiss, but our new doctor thinks he's missing part of his vas deferens.

Soon, I'll be tested to see if I carry any mutations for CF, too. We know that IVF is our only option to have a biological child, and we're definitely weighing all of our options. I have a wonderful 7 year old son from a previous relationship, and we have discussed not having any more children or looking into adoption.

It's still overwhelming, and I thought I'd post to see if anyone else has been in our situation. I found a number of posts from folks who were diagnosed with CF as adults, but many of them seemed to have symptoms. I'd also love to hear from any others who've dealt with IVF or PGD, too.

Wanderlust
 

wanderlust

New member
Hi there!

Just today, we found out that my husband carries two mutations for cystic fibrosis, Delta F508 and 5T. We're still in a state of shock (not uncommon, I imagine!) as he's otherwise healthy. The only reason we had testing done is that we've been trying to have a child for the past year.

Two sperm tests last fall revealed his azoospermia, coupled with low volume. We moved on to a well-respected fertility clinic and saw both their urologist and their genetic counselor. His urologist says that he technically has a "genital form of cystic fibrosis" since it's only affecting his fertility. A previous urologist had done an ultrasound and not noticed anything amiss, but our new doctor thinks he's missing part of his vas deferens.

Soon, I'll be tested to see if I carry any mutations for CF, too. We know that IVF is our only option to have a biological child, and we're definitely weighing all of our options. I have a wonderful 7 year old son from a previous relationship, and we have discussed not having any more children or looking into adoption.

It's still overwhelming, and I thought I'd post to see if anyone else has been in our situation. I found a number of posts from folks who were diagnosed with CF as adults, but many of them seemed to have symptoms. I'd also love to hear from any others who've dealt with IVF or PGD, too.

Wanderlust
 
M

mneville

Guest
Sorry about the recent diagnosis but glad that he is doing so well. We have a two year old with CF, Double Delta. We just went through IVF/PGD to get pregnant with a second. I am due in June. I have to go now as my two year old is screaming but I will post more about IVF/PGD if you want..

Megan
 
M

mneville

Guest
Sorry about the recent diagnosis but glad that he is doing so well. We have a two year old with CF, Double Delta. We just went through IVF/PGD to get pregnant with a second. I am due in June. I have to go now as my two year old is screaming but I will post more about IVF/PGD if you want..

Megan
 
M

mneville

Guest
Sorry about the recent diagnosis but glad that he is doing so well. We have a two year old with CF, Double Delta. We just went through IVF/PGD to get pregnant with a second. I am due in June. I have to go now as my two year old is screaming but I will post more about IVF/PGD if you want..

Megan
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

Kelli

New member
Wanderlust,
I'm sure you and your husband are shocked by the diagnosis. Most of us are, but most of us were diagnosed younger (I was 10) so you kind of 'grow up' with CF.
Try to keep your hopes up and keep both of your spirits up. You are going to read a LOT of scary stuff about CF, but it doesn't always happen to everyone that way. I am 29 (female), graduated college, have a very busy and good life, good marriage, good step kids, my husband and I own our own business, etc. So just carry on and don't let CF over-power your life. Let (or make, you know how men are) live a normal life and do everything as he always has.
CF is an important aspect of my life, meaning I have to listen to my body and do what I need to do to be healthy, but it doesn't control my life. I just have to 'listen' to it.
Good luck with the IVF stuff, I chose not to have kids (my husband is 18 years older and already has 5 kids). But there are some really amazing people on here who can give a lot of advice to you.
Best wishes to you and all the best to your husband as well. I hope you find comfort in knowing that perfect strangers out here that do care and do hope for the best for you and your family. I think you will find some amazing support!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 f w/CF
 

biz

New member
Hi Megan. i have a son with CF and we going to do IVF/PGD to have our second. we have met with the fertility clinic and talked withe the doc and pretty much got the procedure from him. we also did a lot of info research on it also so we went in pretty aware. how was it for you? im really interested in the details from someone who has done it. want to know what to expect. did you get pregnant on the first implantation? and did you see that post from another woman who did the PGD also and still ended up with a child w/ CF. i couldnt believe that when i read it. shocked! hope we can talk if you want to PM me that would be fine


Elizabeth
mom to Aidan 15 months w/ CF
 

biz

New member
Hi Megan. i have a son with CF and we going to do IVF/PGD to have our second. we have met with the fertility clinic and talked withe the doc and pretty much got the procedure from him. we also did a lot of info research on it also so we went in pretty aware. how was it for you? im really interested in the details from someone who has done it. want to know what to expect. did you get pregnant on the first implantation? and did you see that post from another woman who did the PGD also and still ended up with a child w/ CF. i couldnt believe that when i read it. shocked! hope we can talk if you want to PM me that would be fine


Elizabeth
mom to Aidan 15 months w/ CF
 
Top