My parnter has cf, have some questions

[anonymous]

Hi all. i am very new to this, so am hoping i am doing this right<img src="i/expressions/face-icon-small-smile.gif" border="0">
I am living with my partner who has cf, for the last 6 years, when we first got together he told me he was unable to have children, at the time i was a lot younger and didnt think much of it at all, I actually presumed that this meant we could NEVER EVER have our own children, but in recent days we sat down and talked a lot about children, he mentioned to me that he would like to maybe try ivf but wasnt too sure of the outcome. We are going to see a doctor in a few weeks to talk about our options, but in the meantime i would like to try and do a bit of research myself. I have noticed on a few other sites that there is a few couples with the male been cf whom are going for ivf, on reading this i am feeling a lot more content knowing that maybe there is a chance for us. Could anyone help or maybe give an answer to what our chances are on this?
My partner is 27 now and I am 24. he was diagnosed with cf when he was 2 yrs old and spent most of his younger years in and out of hospital. I am very happy to say in the last 7 years he hasnt been in hospital ( touch wood) well only on one occasion to have his port flushed, he is extremley healthy, attends the gym 4 times a week, plays football, has a mammoth appetite<img src="i/expressions/face-icon-small-smile.gif" border="0">, we have a great life together and i couldnt be happier with him, i think for us to try and have a child of our own would really complete us, but would rather know sooner than later if there is no point going any further?
Any help would be appreciated

 

[AngieM]

Hi. I know of a guy who is 30 w/ Cf, diagnosed at 8 yrs old who is having a baby, TWINS!, w/ his wife, no CF. They had her baby shower last week!! I believe they tried 3 or 4 times before getting pregnant. My husband just had a vasectomy reversal last month in Seattle by a urologist in a fertility clinic. He said he's "worked on" about 20 CF males. I think its a hopeful situation.... money being the biggest problem. Isnt IVF like $10,000.00 a time?? Also, I'm curious if you were tested for the CF gene. I was and they found nothing, although to my knowledge all CF genes have not been identified. Hope I helped.

Angie (stepmom to 10 yr old girl w/ CF/CFRD)

 

[anonymous]

Annonymous,

Yes, IVF has been used and successful on males with CF. You and your partner will both need to have a work up to make sure that for both of you all FSH and LH levels are normal. Then for him they will also need to make sure that his testosterone levels are normal. For you, they will do some other invaisve checks (or they should if you are seeing a good doctor) to make sure there aren't going to be any issues from the female side. Then they use egg stimulating medications to hyperstimulate you ovaries so they can retrieve numerous eggs when they do a retrieval. For your partner, they should use the MESA (Microsurgical epididymal sperm aspiration) procedure to extract his sperm. This method is so far the most advanced and they take the sperm from the epididymus where ie is the freshest and newest produced. This is a very good procedure for men with CF because the sperm don't really have the opportunity to swim anywere so when they are retrieved they aren't mobile (or if they are just very slightly) so extracting them from the epididymus gives you the confidence that they are taking the best sperm to use. Some doctors will also take a sample from the inside tissue of the testicle for a couple of reasons. It might provide some extra sperm, and they can compare it to the sperm they retrieve from the epididymus and use their choice from that.

You are also going to need to use the ICSI (intracytoplasmic Sperm Injection) method in combination with the IVF. If you dont' know, that is the method where they need only one single sperm and it doesn't need to be able to swim. They inject the sperm into the nucleus of your egg and watch it grow. Most offices will fertilize every single egg they retrieve from you to see which ones grow the best. They have monitor the egg growing for three days and then they implant the egg or eggs into you. Most of the time there will be some embryos left over and most clinics will freeze them (for a fee) so you can come back later and have another baby without having to do another egg and sperm retrieval.

My husband and I are going through IVF in October (although we might postpone it because I am in the Navy and due to go out to sea Next year, don't want to leave a brand new baby at home) so we have both been through all the prep work, just not the retrievals yet. I have been talking to a family where the man has CF and they had twins 18 months ago. If you want, I can ask her if I can pass her email address onto you if you are interested.

If you have any other questions, you can email me if you like at division902@hotmail.com

Julie-RN (wife to Mark 24 w/CF)

 

[anonymous]

hi Angie & Julie

Thanks so much for your help, on reading just your 2 replys i already feel a bit more at ease about the whole thing. So far the only research i have been doing is basically flicking through the different pages on this site and a few others, although they have been of great help to me I am still a bit confused with a few things. I read on one site that there was a few different methods, one of which was the ICSI, I was unsure if this method was only used in certain cases or if it HAD to be used combined with IVF.
I am living in Ireland and so i understand the fee for this will be crazy but if i thought there will be a chance for us then than i am more than willing to go ahead. I am covered with my own insurance but i dont think this would be covered. There is only so many cf specialists here in Ireland so we are waiting on an appointment to see one, the sooner the better!! I will be tested for the cf gene also on the same day so hopefully they will find nothing.
I am so thankful for both your help on this and sure Julie it would be great to speak to the lady who has just given birth to twins if thats okay and i am sure i will email you myself with some further questions too<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi Anonymous
i am also from ireland(dublin) and my bf(kinda bf long story) has cf. Please keep us up to date. i'd love to know how you get on. Are you going to the rotunda for your appointment. I've also looked into all this but unfortunetly i have the BIGGEST fear of neddles ever(suppose i might have to get over that!!!). So if you anything happens please keep me posted. Do you know how much it costs here.
Anyways keep me posted.if you want i'll give you my e mail addy.
bye

 

[anonymous]

Hi there
Isnt that weird, I too have the biggest fear of needles<img src="i/expressions/face-icon-small-smile.gif" border="0">
Well my partner attends Vincents now so i think that is where we will go for our appointment, i really hope it will work out for us, to be honest i am not too sure of the fees but knowing Ireland it will be crazy, I have VI but i dont think i would be covered for this. i was on a cf website in America the other day and was trying to work out what the fee would be based on their fee in dollars, it should be in the region of 9000.00 euro to 12,000, thats just my guessing though. Are you trying to have a child with your partner too? I am just curious<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi,
Thats so expensive isn't it. No i'm not trying right now to have a baby but just looked into it for the furture. Yeah needles are a BIG no no(lol but look who we pick as bf's).I'd be curious to know like what the succes rate is and stuff. Good luck with your appointment.

 

[anonymous]

IVF is for the woman. For a man who has CF and doesn't put out sperm (95%) they have PESA and MESA. These two options are virtually the same with a few distinctions, in both cases they essentially aspirate the testicle to retrieve sperm. CF men usually don't have a vas deferens, the delivery tube that is usually attached to the testicle. I have looked on fertility sites regarding PESA and MESA and depending on the clinic they will charge you $10K-$12K for a singular attempt, or they will charge you $25K for countless attempts and the guarantee that for $25K they will get you pregnant, though is isn't clear if this means you carry the baby to term. PESA and MESA stand for Percutaneous Epididymal Sperm Aspiration and Microepididymal Sperm Aspiration respectively. Much of the success is dependant on whether the testicle is producing sperm. This can only be determined by the procedure.

 

[anonymous]

The 10-12K that you quoted for the MESA/PESA procedure is a bit large, are you refering to the entire procedure? Our urologist charges $2500 per MESA attempt (you usually only need one, but couples who come back later and want more children...). Then the IVF with ICSI ranges from about $7000-$12000 depending on the clinic you use, your age and what state you live in. ICSI is not a procedure that can be done on it's own, but is used in combination with Invetro. Some couples just use "old fashioned" (good lord, it isn't even that old) method of IVF where a whole bunch of eggs and sperm are put back inside the female. Whereas with ICSI, you need only ONE good egg and ONE good sperm. The sperm is injected directly into the egg and the growth is monitored for three days. It givs a better success rate with men who have slow or non motile sperm, which is the case in CF me who have no vas defrens.

Your partner will want to MAKE sure he gets an estradol level, FSH level, LH level, Testosterone Level before you even consider paying for a retrieval procedure, because they can guage from that whether or not there is a good chance of sperm being there. As the last poster said, the only sure way of knowing is by actually doing the procedure, but if a man has a really low testosterone level, that is a good sign that he won't be producing any or much sperm. If the testosterone level is low, there are things that can be done (we have been through and it and it has been successful) but that is a discussion for another day.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

Hi thanks to you all once again for your more than welcome help. A question that i wanted to ask and its one that may sound a bit silly or even a bit petty, but i have to ask, for those of you that have been through IVF with ICSI or even just researched, if after a few weeks a heartbeat is detected and it is a success, is the actual following 9 months the exact same as to a normal pregnancy? what i mean is, because the child has not been concieved in the natural way, will there be a LOT more pain & discomfort than usual and will ht e mother have to be monitered on a day to day basis? or is she left to continue with the 9 months as normal? I am just curious, of course if our doctor tells us there is a chance for us, we will be going ahead with it no matter what but I just wanted to really find out what the added complications are, if any?

 

[anonymous]

I'm a 25 year-old male with CF and my doctor at children's hospital in Boston told me the success rate of the procedure is 100%. He also told me the procedure would be covered by insurance.

 

[anonymous]

The insurance coverage really depends on your state and the insurance company.

here is a link to companies that offer some infertility coverage: <a target=new class=ftalternatingbarlinklarge href="http://www.inciid.com/article.php?cat=benefits&id=243
">http://www.inciid.com/article.php?cat=benefits&id=243
</a>
Here is a link of states that mandate insurance coverage, I don't believe this list is up to date (I believe there are more states that offer coverage) but this is all I have been able to find today. <a target=new class=ftalternatingbarlinklarge href="http://www.inciid.org/article.php?cat=benefits&id=275
">http://www.inciid.org/article.php?cat=benefits&id=275
</a>
Here is a link that talks about some indepth infertility things you should know if you are considering an IVF procedure:<a target=new class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/infertility.html
">http://www.nlm.nih.gov/medlineplus/infertility.html
</a>
Here is information on current bills in congress where people are lobbying for states to mandate certain companies who have over a certain number of employees that they offer infertility coverage. If you feel strongly about it, please write to your congress people and representatives. I have and I have a letter if anyone is interested in an example: <a target=new class=ftalternatingbarlinklarge href="http://www.stanford.edu/class/siw198q/websites/reprotech/New%20Ways%20of%20Making%20Babies/Legislat.htm
">http://www.stanford.edu/class/siw198q/websites/reprotech/New%20Ways%20of%20Making%20Babies/Legislat.htm
</a>
Another great website for information on infertility. They are a company that advocates for infertility rights and coverage and they are the ones where I got ideas and names of my representatives (and the names of the bills that deal with infertility insurance coverage) to send letters to, requesting that they support the bill when it goes to congress. <a target=new class=ftalternatingbarlinklarge href="http://www.inciid.com/index.php?page=benefits
">http://www.inciid.com/index.php?page=benefits
</a>
Hope this helps,

Julie (wife to Mark 24 w/CF)