MALES with CF trying for baby?????

[anonymous]

I am trying to locate any men out there who have CF and are either going through in infertility process right now, or have had past IVF-successful or unsuccessful- treatment.
I would love to talk a little more candidly and specifically about lab values and any "problems" your doctors encountered, so I think it might be more appropriate to do so by email. If anyone has any information I welcome it. My email address is division902@hotmail.com.

Just a little history, my husband is a 24 year old with CF and congenital bilateral absence of the vas defrens (as most CF males do). We are on an IVF/ICSI list for March. It was suppose to be october, but they had a cancellation so we jumped at the chance. Everything with me checks out great, but the problems we are running into is although we are working with wonderful doctors, they have never dealt with a male with CF and infertility treatment-never. So we are brand new to them and they are like, "oh are these labs normal, abnormal, ok????" They have no clue and neither do I. His FSH levels are .05 (barley a trace) and they should be like 15-20, his testosterone is low about 250 where the norm is 800. They are toying with the idea of putting him on HCG to stimulate testosterone production but they really aren't sure what is the best thing to do now.

So any help, experiences, anything at this point from anyone would be wonderful!

Thank you,

Julie and Mark

 

[miesl]

Find a clinic that has done CF-related cases before. This is a VERY costly venture, make sure you're going to be dealing with a group of specialists that know what's going on.

Didn't your CF clinic refer you to a special group?

 

[anonymous]

I don't want to find a clinic that has done CF cases before because we are doing it through the miltary and it is costing us $5500 as opposed to $14000-so...

Thank you anyways,

Julie

 

[anonymous]

Hi, I’m a 26 year old male with CF. My wife and I are going threw IVF via icsi right now at the University of Minnesota, they specialize in people with CF. I had the same issue with low testosterone and they put me on Clomid (Clomiphene citrate) for 30 days and that got my T and FSH level back to normal. HCG would be the next step if Clomid did not work. I’m assuming that they will be doing a testicular biopsy, for mine they wanted to 90 days after my T level was back up as it takes 90 days for sperm to develop.

I know this is not what you want to hear but…. my wife and I looked a some cheaper options and came to the conclusion that it would be worth it to spend more money and get a baby than to get a deal and risk it. If you haven’t done so already make SURE to find out what your providers success rate is, and if they don’t have any are if they only give you national statistics be wary. You can also get an idea of a program's strengths and weaknesses, by talking with former or current patients, they should be able to give you a reference.

If you have any other question let me know.

 

[anonymous]

To the last poster, Thank you so much for your reply! I will talk to the urologist about that option. Our urologist referred us to another urologist with experience with CF males and infertility. Our first appt. is in two weeks, so hopefully we will get something started then! I am doing my IVF/ICSI through the military so it only costs (only-yeah I know) 5500 (or 4500 if you don't want to freeze the embryos) as opposed to 10-15k. If we do have success, or don't and need to try again, it is only $400 to unfreezed and insert (for lack of a better word) the embryos. We figure we'll give this initial time a chance, and any other subsequent attempts with any of the embryos we might have left over and after that, it's probably adoption. The infertility specialist we see though the Navy, coordinates his invetro procedures with another very reputable clinic here in San Diego where I live and I have checked out everything on both the military side and their clinic side. I understand what you mean, we don't want to risk anything. both for our health and for any baby that we might be able to have. I am for it, but he's kind of on the fence, his brother and sister have biological kids and I think it's a big issue for him. But we will see.

If you ever want to send me any more information that you just don't want to post on this site, my and my husband's email address is division902@hotmail.com

Thank you so much,

Julie

 

[anonymous]

Zach,

This is Julie, I wanted to let you know I recieved your email although Hotmail put it in my junk mail box so I just read it a few days ago. I did send you a reply, and have some more questions so I will email you again, hopefully you email isn't putting me in your junk box too.

Thank you for all of your help!

Julie

 

[Zjordan]

Julie, I got your email and sent you a reply. Let me know if you don't get it.

Zach
www.jordanshome.com

 

[anonymous]

When my wife and I started to look at IVF, I spoke with a Urologist. I learned something new. I always thought that the VasDeferans were blocked. He informed me that in CF, they don't exist. He talked about a procedure of extracting sperm via syringe (a new process at that time.) I hate to tell you what the original procedure was. Extract the testes through a minor incision (ouch). Anyway, as we were reviewing these options, my wife tested positive for the CF Gene. She has a cousin on her grandmother's side that has CF. That made our decision real easy for us. We decided to go w/ a sperm donnor. I don't do well with 50/50 chances and after what I've been through, we as a couple decided against trying to use me for the IVF.
So the message here is to be completely informed. I do not want to sway your decision. This was our experience. So naturally, everyone's experience will be different. If my wife hadn't tested positive, then we definitely would have proceeded as normal.

Good luck to both of you.

By the way, we have very beautiful twin girls. We haven't decided how and when we'll share this information with them.

 

[anonymous]

Thanks for your post. We've been through all the genetic counseling and I am not a carrier. I am also a RN so I have done the research as far as the sperm extraction (called MESA) for microsurgical epididymal sperm extraction. Our urologist is going to extract sperm that way (where they take a needle and extract sperm from the epididymus where it is the freshest and least comprimised) as well as a biopsy of the inside of the same testicle. They are doing this in hopes that we will have enough for a few cycles if the first attempt doesn't work, and some left over in case we are successful and want to do it again in a few years.

How many attempts did it take for your wife to become pregnant? did they do an IVF procedure alone or was it coupled with the ICSI procedure. We are going to do the IVF with ICSI.

How old are your twins now? Congratulations to you and your wife and thank you for your post. There are definetly a lot of things to consider and keep in mind when going through such a procedure. Had i tested positive to be a carrier, adoption would be our choice. But thankfully I didn't.

Julie

 

[miesl]

Zach - of all the funny places to run into people you know. It's Michelle - my boyfriend is your wife's coworker.

Good luck to the two of you!