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Can male carriers have an absence of the vas deferens?
- Thread starter anonymous
- Start date
As an infant & child he was in & out of the hosptial w/ pnenmonia, whopping cough & bronch problems. He has always been thin...but that could be just him. As soon as he eats he needs to find a bathroom & it is almost always loose. (Sorry) And then with us having fertility problems I just think of it.....could just be over reacting too.... but he is my husband & I worry.<img src="i/expressions/angel_ani.gif" border="0">
Leah mommy 2 Reece w/cf
Leah mommy 2 Reece w/cf
It wouldn't hurt to have him tested. I think after someone in the family is diagnosed they recomend other family members be test if they show any of the symptoms. But if he is doing Okay healthwise now there probably are other things to do before you have him mention it to his doctor (like make sure life insurance is in order, and other things that maybe a problem getting if he is diagnosed). Anyway, just a thought but you need to do whatever you feel is best for your family.
For those of you above asking about infertility and CF. My husband (32) has CF and we successfully had a baby through IVF (and ICSI) this past June. ( first attempt). He had to have a minor surgery to remove sperm.
It has been the best thing we ever did and worth all the anxiety, frustration and money. It is a gamble, but we are so happy that this technology is available. Our little boy is gorgeous, healthy and inspires us to live and love each day to the fullest.
I AM concerned about the future and my husbands decline in health, but I have to Let go of that and take each day as it comes. I have faith!
Feel free to email me with any questions.
-lynda
It has been the best thing we ever did and worth all the anxiety, frustration and money. It is a gamble, but we are so happy that this technology is available. Our little boy is gorgeous, healthy and inspires us to live and love each day to the fullest.
I AM concerned about the future and my husbands decline in health, but I have to Let go of that and take each day as it comes. I have faith!
Feel free to email me with any questions.
-lynda
There is a very small percent (about 2%) of males with CF who can father children, so I have to disagree with the doctor who told you not to worry about it. Does your son to a CF clinic? Ask them about getting your husband tested. It is best to have the testing done at a CF clinic.
Leah,
I think it would be a good idea to have your husband tested as well -- sounds like he does have several red flag symptoms -- when we had my son tested it was because we had found the genes in his sister -- we did have to go through the PCP to get the referral to have it done at the CF clinic. I would recommend going through your CF clinic for the gene testing.
I think it would be a good idea to have your husband tested as well -- sounds like he does have several red flag symptoms -- when we had my son tested it was because we had found the genes in his sister -- we did have to go through the PCP to get the referral to have it done at the CF clinic. I would recommend going through your CF clinic for the gene testing.
Leah, do you know both or Reece's Mutations? Have you been tested (simply to find out what mutation you carry)? I would highly encourage you to have your husband to have a sweat test and or a blood test. I agree with everyone else about the red flag symptoms. As far as how/where to get tested, you can do a blood test through you family practice doctor but that usually only tests for 25-89 of the over 1,000 KNOWN mutations (finding new ones all of the time too). If your husband was a carrier of 2 genes and they were the "common" ones, that would be a good test. More and more often though, people seem to be carriers of the more rare mutations. Therefore, an expanded CF panel test through Quest diagnostics is what I would push for if I were you. Most insurance companies will cover a Quest test, and especially in your case where Reece actually has CF.
Feel free to email me (again) if you have any questions or need some assistance, I am happy to help.
Lynda, if you and your husband ever wish to share your story, I would absolutely LOVE to include it on my website! I am always always always looking for more success stories. My husband and I are hoping to go through our first cycle of IVF sometime this year and I am not sure if you've visited our website yet <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</a> but please feel free to do so and if you are interested in sharing any portion or all of your success I would be thrilled! If not, I do understand and feel free to let me know that you aren't interested also.
Feel free to email me (again) if you have any questions or need some assistance, I am happy to help.
Lynda, if you and your husband ever wish to share your story, I would absolutely LOVE to include it on my website! I am always always always looking for more success stories. My husband and I are hoping to go through our first cycle of IVF sometime this year and I am not sure if you've visited our website yet <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</a> but please feel free to do so and if you are interested in sharing any portion or all of your success I would be thrilled! If not, I do understand and feel free to let me know that you aren't interested also.
Reece has two copies of delta f508. We have never been tested to see what type of carrier we are. We were told that it was not that important?! When my brothers wife was pregnant w/ twins this past year, we wanted her to get tested, but they said it wasnt necssary.....So far the boys are fine but they are only 1 mo. old. And they were in the hosptial w/ low o2 & respirtory problems for 3 wks. So I think they will be fine......I pray. The docs were told about Reece having CF so they knew
it could be possible for the twins. Leah<img src="i/expressions/angel_ani.gif" border="0"> Thanks for the info again, Julie.
it could be possible for the twins. Leah<img src="i/expressions/angel_ani.gif" border="0"> Thanks for the info again, Julie.
Wow, I am continually amazed and surprised at the ignorance of doctors! If your brother and his wife aren't concerned, then so be it, but we made sure that Mark's brother, his wife and both of the kids (the oldest isn't biologicall his brothers) were tested for CF, just to be safe. It's such a tricky genetic disease that it can be very confusing and misleading. I would say that if they continue to have any sort of respiratory problems that they get tested, just in case but then again that's just me.
As far as you and your husband being tested, it's not really necessary simply because Reece is a DOUBLE DF508 so clearly you and your hubby both carry that mutation. The thing is, with all of your husbands health things, he should be tested to see if he actually HAS CF. So in that sense, testing on him to see would be logical. More or less for you though, if Reece had DF508 and some other mutation, testing would just be pure curiosity with an answer as to who carried what mutation. Does that make sense? But since your husband is somewhat symptomatic at times, it would be logical to do an extended panel of testing on him .
Julie (wife to Mark 25 w/CF)
Not hooked up online at home until Jan 6 2006, borrowing a computer and internet right now <img src="i/expressions/face-icon-small-smile.gif" border="0">
As far as you and your husband being tested, it's not really necessary simply because Reece is a DOUBLE DF508 so clearly you and your hubby both carry that mutation. The thing is, with all of your husbands health things, he should be tested to see if he actually HAS CF. So in that sense, testing on him to see would be logical. More or less for you though, if Reece had DF508 and some other mutation, testing would just be pure curiosity with an answer as to who carried what mutation. Does that make sense? But since your husband is somewhat symptomatic at times, it would be logical to do an extended panel of testing on him .
Julie (wife to Mark 25 w/CF)
Not hooked up online at home until Jan 6 2006, borrowing a computer and internet right now <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thank you so much for your info Julie. I definetly will watch my nefews....as I did when they were in the hosptial......They were only hrs old & they did X-Rays on them, my mom & I looked at each other & cringed. Both us were thinking CF. That is just always on my mind. Yes I understand what you said bout not needing to be tested to find out what mutations we carry. On one of the posts someone said to check w/ my insurance before he gets tested, what excatly do I need to ask? Then we should just go to his PCP to get blood work & a sweat test? Would they know what to look for? I mean you said to get a full work up? Sorry if I sound like a 5yr old, we have NEVER had to worry bout this w/ Reece, it was ALL taken care of. Thanks, Leah<img src="i/expressions/angel.gif" border="0">
It is always best to be tested at a CF Center.
Before your husband is tested, you two should take out any life insurance that you wish to take out on him, because IF he has CF, it will be difficult (if not impossible) to get insurance after diagnosis.
Also, some of my family members refuse to be tested for CF or have their kids tested, and you can't force them. If you make them aware that it is in the family, the rest is up to them.
Good luck.
Before your husband is tested, you two should take out any life insurance that you wish to take out on him, because IF he has CF, it will be difficult (if not impossible) to get insurance after diagnosis.
Also, some of my family members refuse to be tested for CF or have their kids tested, and you can't force them. If you make them aware that it is in the family, the rest is up to them.
Good luck.
I have family members (mostly cousins) who seem to think they are above any genetic problems. I use to get upset, but now I just inform & let them make their choices. I will gaurantee that should someone else in the family be born with CF that I will hear from a slew of people since I am the only known CFer at this point in the family. And if this happens, you know what......I will share my wisdom because that is what CFers do!
someone posted:
Before your husband is tested, you two should take out any life insurance that you wish to take out on him, because IF he has CF, it will be difficult (if not impossible) to get insurance after diagnosis.
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This might sound stupid, but this never occurred to me -- since both my kids have this diagnosis, life insurance (or lack of) will be something they will deal with. I'm assuming the above statement was made about purchasing a policy for oneself -- so my question is when employers provide you with an automatic policy of say $50,000 does it still get awarded/honored if you have the cf diagnosis? It seems to me that when my husband has changed jobs the last couple of times, he was automatically covered for a policy and pre-existing conditions did not apply. So I'm assuming my kids could hold out hope of getting something like that, through an employer, should it be available as part of the job benefits.
Before your husband is tested, you two should take out any life insurance that you wish to take out on him, because IF he has CF, it will be difficult (if not impossible) to get insurance after diagnosis.
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This might sound stupid, but this never occurred to me -- since both my kids have this diagnosis, life insurance (or lack of) will be something they will deal with. I'm assuming the above statement was made about purchasing a policy for oneself -- so my question is when employers provide you with an automatic policy of say $50,000 does it still get awarded/honored if you have the cf diagnosis? It seems to me that when my husband has changed jobs the last couple of times, he was automatically covered for a policy and pre-existing conditions did not apply. So I'm assuming my kids could hold out hope of getting something like that, through an employer, should it be available as part of the job benefits.
And if you do get life insurance DO NOT LET IT LAPSE......I let my coverage lapse because of not having the $$$ to pay the premium. It was a policy my parents took out at the time of my dx & because I had it for so long it would have paid for any pre existing condition. Sadly even tho the premiums were coming off the cash value of the policy (so I thought I was ok) I wasnt actually paying the premiums so they cancelled my policy. The only good thing is I did take a loan against the cash value at one point so I didnt completely lose out so to speak. I was quite pissed off at myself for allowing this to happen, but at the same time I didnt know!! SO I try to get the word out.........................