CF & Male Infertility HELP!

[anonymous]

Hello,

This is the first time I have ever done this so bear with me. I am 28 years old and my husband is also 28 and has CF. He has been diagnosed since he was a baby. I am not sure if i carry the gene in my DNA, we have only been starting to talk about having children.

I have searched online and have found a lot of information about men and infertiltiy along with the absense of the vas deferens. I see that there are procedures out there for CF men who would like to have children.

I guess my problem is i dont know where to start. We currently go to Iowa City to the pediatric deparement because doctors where we live are leary of even talking to a person with CF.
I guess what I am asking is what should i be doing? What are the proper steps? I spoke to the Iowa City doctor and he had NOTHING to give me besides the basics from what i have learned myself online. (which is a crock because he is suppose to be the head of the dept and it is Iowa City Hospitals which are a good place to go).

Has anyone heard of a male with CF having children without the procedures? My husband is pretty healthy and hasnt been in the hospital or had major problems for about 5 years.
If you have had surgical procedures ect, what have you been paying or what has worked for you.

I would appreciate any help that i could get, i am so confused.

Thanks,

Heather Schroeder<a target=new class=ftalternatingbarlinklarge href="mailto:schroederheather@excite.com">My email</a>

 

[anonymous]

Hello,

This is the first time I have ever done this so bear with me. I am 28 years old and my husband is also 28 and has CF. He has been diagnosed since he was a baby. I am not sure if i carry the gene in my DNA, we have only been starting to talk about having children.

I have searched online and have found a lot of information about men and infertiltiy along with the absense of the vas deferens. I see that there are procedures out there for CF men who would like to have children.

I guess my problem is i dont know where to start. We currently go to Iowa City to the pediatric deparement because doctors where we live are leary of even talking to a person with CF.
I guess what I am asking is what should i be doing? What are the proper steps? I spoke to the Iowa City doctor and he had NOTHING to give me besides the basics from what i have learned myself online. (which is a crock because he is suppose to be the head of the dept and it is Iowa City Hospitals which are a good place to go).

Has anyone heard of a male with CF having children without the procedures? My husband is pretty healthy and hasnt been in the hospital or had major problems for about 5 years.
If you have had surgical procedures ect, what have you been paying or what has worked for you.

I would appreciate any help that i could get, i am so confused.

Thanks,

Heather Schroeder<a target=new class=ftalternatingbarlinklarge href="mailto:schroederheather@excite.com">My email</a>

 

[coltsfan715]

Hey there,
I can't help you out with any place to get info, but I wanted to say that yes I have heard of a male with CF having kids without procedures. I actually heard about him through the local chapter of the CF foundation here in Jacksonville, FL. Until I heard of him I had not heard of a male having biological children without assistance of another procedure - the funny part was he was the first I had heard of and he was about 18 or something and ended up getting 3 different girls pregnant within a month of each other - I guess he was taking advantage of the probability he would be infertile.

I wish you the best - I am sure you will get plenty of info on here there are alot of people on this site going through similar things from the posts that I have read.

Best of Luck,
Lindsey

 

[coltsfan715]

Hey there,
I can't help you out with any place to get info, but I wanted to say that yes I have heard of a male with CF having kids without procedures. I actually heard about him through the local chapter of the CF foundation here in Jacksonville, FL. Until I heard of him I had not heard of a male having biological children without assistance of another procedure - the funny part was he was the first I had heard of and he was about 18 or something and ended up getting 3 different girls pregnant within a month of each other - I guess he was taking advantage of the probability he would be infertile.

I wish you the best - I am sure you will get plenty of info on here there are alot of people on this site going through similar things from the posts that I have read.

Best of Luck,
Lindsey

 

[Emily65Roses]

There's a woman on here named Julie who has the perfect site for you:
<a target=new class=ftalternatingbarlinklarge href="http://cysticfibrosismaleinfertility.com">http://cysticfibrosismaleinfertility.com</a>

<blockquote>Quote<br><hr>My husband is pretty healthy and hasnt been in the hospital or had major problems for about 5 years.<hr></blockquote>
If you're asking if he's more likely because he's fairly healthy... to my knowledge, there's no meaningful correlation between the two.

 

[Emily65Roses]

There's a woman on here named Julie who has the perfect site for you:
<a target=new class=ftalternatingbarlinklarge href="http://cysticfibrosismaleinfertility.com">http://cysticfibrosismaleinfertility.com</a>

<blockquote>Quote<br><hr>My husband is pretty healthy and hasnt been in the hospital or had major problems for about 5 years.<hr></blockquote>
If you're asking if he's more likely because he's fairly healthy... to my knowledge, there's no meaningful correlation between the two.

 

[anonymous]

Man, what fast responses. No I was just stating that my husband has been pretty healthy, i wasnt trying to correlate the two. His parents were both carriers of the gene and didnt knwo it (how could they!!). So they had my husband lance and then they were going to quit then accidently had his sister. Its amazing but he has been pretty healthy where she is in the hospital about every 6 months or so. its so strange that they are so different. She has a lot of problems with dating although she is such a cute girl. I think that telling people is so hard although i had no problem when my husband told me.

 

[anonymous]

Man, what fast responses. No I was just stating that my husband has been pretty healthy, i wasnt trying to correlate the two. His parents were both carriers of the gene and didnt knwo it (how could they!!). So they had my husband lance and then they were going to quit then accidently had his sister. Its amazing but he has been pretty healthy where she is in the hospital about every 6 months or so. its so strange that they are so different. She has a lot of problems with dating although she is such a cute girl. I think that telling people is so hard although i had no problem when my husband told me.

 

[JazzysMom]

I chat with a gentleman from New Jersey who has CF & is the biological father of children. He did it the old fashion way. He realizes that he is in the minority tho! It can happen without procedures, but is unusual that is where testing etc comes into play!

 

[JazzysMom]

I chat with a gentleman from New Jersey who has CF & is the biological father of children. He did it the old fashion way. He realizes that he is in the minority tho! It can happen without procedures, but is unusual that is where testing etc comes into play!

 

[julie]

Heather, I'm Julie, the one with the site on Male infertility and CF (thanks EM).

For starters, have you been trying without protection or birth control? From your questions and reasearch I could assume so but I want to be sure.

If you have been trying and no luck, the first thing you need to do (and it's fairly inexpensive) is have a semen analysis ordered for your husband, his family practice doctor should be able to do it. From there, the results will tell you if there is semen when he ejaculates. If there is semen, you should be evaluated for female things. If there is no sperm in the ejaculate then you proceed to the next step.

If there is no sperm, your husband should have the following blood tests: FSH, LH, TSH, Prolactin, Testosterone. Sometimes these labs will be abnormal yet there is still semen (in the case of my husband, ALL labs were abnormal but a testicular biopsy revealed viable sperm). If those labs are normal, you should then get into see a reproductive endocronologist (RE).

My husband and I are in the middle of an in-vitro cycle right now. When we attempted to do this last year, but weren't able to proceed because of finances, we were using an RE in san diego and then having Mark's sperm retireved and frozen a few weeks before my procedure by a urologist who specializes in male infertility. Our RE's office didn't have anyone on staff to do the "male" portion. We could have also elected to have Mark's sperm retrieval the same day as mine, but we didn't have any friends or family to drive us all over the place all day long (we would both be sedated) so we elected to have it beforehand. We never ended up going through with the procedures though.

Here in WA, our RE has experience in sperm extractions as well so mark's procedure will be done an hour before my eggs are retrieved and it will be done in the same clinic so there won't be all that running around.

There are a few different options for sperm retreival and the "outcomes"/most successful method vary greatly depending on who you talk to. Our old urologist in CA was going to do a Microsurgical Epididymal Sperm Extraction (MESA) and that was going to run about $3500.00 Here in WA, our doctor prefers to do a NonSurgical Aspriation with a needle (less invasive and much less expensive) and that is only $1000.00.

Because men with CF's sperm are trapped in the testicles, they aren't motile so IntraCytoplasmic Sperm Injection (ICSI) must be used to achieve any possible success. This is where they take a sperm and inject it into a single egg. This also works great because they don't need a huge amount of sperm. The ICSI is instead of putting the egg and sperm in a petri dish together and letting them find eachother and fertilize... it doesn't work with sperm that aren't motile. At my current clinic ICSI runs us $2000.00

The In-vitro Fertilization (IVF) itself is the most expensive part. In my clinic here in WA it runs $7800.00 and that doesn't include ultrasounds (They estimate you need about 8 at $100 each), blood draws (they estimate you need 10 at $20 each), Estradiol levels (they estimate they will do 8 at $80), Initial office visit at $350, Injection training at $125 (I skipped this one, I work in medical, plus if you feel comfortable you can find all sorts of videos and instructions online), follow up office visits (they estimate 4 at $150 each), Hystoplasiogram (not spelled right, you can read about it if you visit my site) is $400, Systograhm (not spelled right either) $350 and then any equipment they use along the way.

So our cycle is totaling about $12,500.00 and insurance won't pay for any of it.

Feel free to email me with more questions if you like, I'm happy to help. <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a> or <a target=new class=ftalternatingbarlinklarge href="mailto:cystic_fibrosis_male_infertility@yahoo.com">cystic_fibrosis_male_infertility@yahoo.com</a>

 

[julie]

Heather, I'm Julie, the one with the site on Male infertility and CF (thanks EM).

For starters, have you been trying without protection or birth control? From your questions and reasearch I could assume so but I want to be sure.

If you have been trying and no luck, the first thing you need to do (and it's fairly inexpensive) is have a semen analysis ordered for your husband, his family practice doctor should be able to do it. From there, the results will tell you if there is semen when he ejaculates. If there is semen, you should be evaluated for female things. If there is no sperm in the ejaculate then you proceed to the next step.

If there is no sperm, your husband should have the following blood tests: FSH, LH, TSH, Prolactin, Testosterone. Sometimes these labs will be abnormal yet there is still semen (in the case of my husband, ALL labs were abnormal but a testicular biopsy revealed viable sperm). If those labs are normal, you should then get into see a reproductive endocronologist (RE).

My husband and I are in the middle of an in-vitro cycle right now. When we attempted to do this last year, but weren't able to proceed because of finances, we were using an RE in san diego and then having Mark's sperm retireved and frozen a few weeks before my procedure by a urologist who specializes in male infertility. Our RE's office didn't have anyone on staff to do the "male" portion. We could have also elected to have Mark's sperm retrieval the same day as mine, but we didn't have any friends or family to drive us all over the place all day long (we would both be sedated) so we elected to have it beforehand. We never ended up going through with the procedures though.

Here in WA, our RE has experience in sperm extractions as well so mark's procedure will be done an hour before my eggs are retrieved and it will be done in the same clinic so there won't be all that running around.

There are a few different options for sperm retreival and the "outcomes"/most successful method vary greatly depending on who you talk to. Our old urologist in CA was going to do a Microsurgical Epididymal Sperm Extraction (MESA) and that was going to run about $3500.00 Here in WA, our doctor prefers to do a NonSurgical Aspriation with a needle (less invasive and much less expensive) and that is only $1000.00.

Because men with CF's sperm are trapped in the testicles, they aren't motile so IntraCytoplasmic Sperm Injection (ICSI) must be used to achieve any possible success. This is where they take a sperm and inject it into a single egg. This also works great because they don't need a huge amount of sperm. The ICSI is instead of putting the egg and sperm in a petri dish together and letting them find eachother and fertilize... it doesn't work with sperm that aren't motile. At my current clinic ICSI runs us $2000.00

The In-vitro Fertilization (IVF) itself is the most expensive part. In my clinic here in WA it runs $7800.00 and that doesn't include ultrasounds (They estimate you need about 8 at $100 each), blood draws (they estimate you need 10 at $20 each), Estradiol levels (they estimate they will do 8 at $80), Initial office visit at $350, Injection training at $125 (I skipped this one, I work in medical, plus if you feel comfortable you can find all sorts of videos and instructions online), follow up office visits (they estimate 4 at $150 each), Hystoplasiogram (not spelled right, you can read about it if you visit my site) is $400, Systograhm (not spelled right either) $350 and then any equipment they use along the way.

So our cycle is totaling about $12,500.00 and insurance won't pay for any of it.

Feel free to email me with more questions if you like, I'm happy to help. <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a> or <a target=new class=ftalternatingbarlinklarge href="mailto:cystic_fibrosis_male_infertility@yahoo.com">cystic_fibrosis_male_infertility@yahoo.com</a>

 

[schroederheather]

Julie:

Thank you so much for the information. My husband and I would like to try to start working on a family this year so now we currently are not trying. We are first going to try it without protection ect but i wanted to know what we are getting into if it is the worse case scenerio. I hope that we are able to have children the natural way but you gave me so much more inforamtion than i have been able to find anywhere else. This will be very informative when we start planning our family.

Good luck with the in-vitro cycle<img src="i/expressions/face-icon-small-smile.gif" border="0">

Heather

 

[schroederheather]

Julie:

Thank you so much for the information. My husband and I would like to try to start working on a family this year so now we currently are not trying. We are first going to try it without protection ect but i wanted to know what we are getting into if it is the worse case scenerio. I hope that we are able to have children the natural way but you gave me so much more inforamtion than i have been able to find anywhere else. This will be very informative when we start planning our family.

Good luck with the in-vitro cycle<img src="i/expressions/face-icon-small-smile.gif" border="0">

Heather

 

[julie]

Thanks for the good luck Heather. I too hope that your husband is one of the few that can have children naturally. There IS one guy on this site, his girlfriend is pregnant and they are just thrilled. He went to get a semen analysis and a few days AFTER they found out she was pregnant, they called and told him that there were sperm. He was like, "thanks, we know <img src="i/expressions/face-icon-small-smile.gif" border="0">"

Best of luck and if you find that you need any more information, feel free to get in contact with me anytime.

 

[julie]

Thanks for the good luck Heather. I too hope that your husband is one of the few that can have children naturally. There IS one guy on this site, his girlfriend is pregnant and they are just thrilled. He went to get a semen analysis and a few days AFTER they found out she was pregnant, they called and told him that there were sperm. He was like, "thanks, we know <img src="i/expressions/face-icon-small-smile.gif" border="0">"

Best of luck and if you find that you need any more information, feel free to get in contact with me anytime.