Lots of Questions..........Please help
Lots of Questions..........Please help
Here is my story for starters.....TTC 5 months, BFP in March of 2008, heart stopped beating last week & I had a D & C a few days ago. In the meantime, we just found out my DH's father has Huntington's disease. My DH has already begun having symptoms but has not yet been tested. He is scheduled to be tested in June. It's been a really trying month all in all. Neither of us has fertility problems that we know of and we were able to get pregnant. The fetus died at 7.5 weeks but it was not going anywhere so by week 12 we proceeded with the D & C. It was heartbreaking because we were able to get pregnant before we actually knew the disease ran in DH's family. My husband has a 50% chance of inheriting Huntington's from his father and if he does, our children will also have a 50% chance. It is a horrible disease that causes an immense amount of suffering and eventually death. I did some research and found a clinic about 7 hours from us that does IVF with pre-implantation genetic diagnosis for Huntington's disease. This is our only option aside from getting pregnant naturally again, getting the fetus tested and terminating the pregnancy if it has it. Neither of us can go through with terminating our own child once I am pregnant. So my first question that I can't seem to find the answer for is 1. Will our success rate for IVF increase a lot because we don't have infertility and are both young (both 27, DH will be 28 in a few weeks)? Also, how do most of you afford IVF? It's a lot more expensive with the PGD so we are curious how people actually pay for it. Any other input as far as experiences go is appreciated. My OB here has never even heard of PGD. Thanks, Jenna
jensrae-
I can't even imagine how difficult things have been for you! Your basic questions are pretty easy, but your situation is far from that.
1st off money matters- all of us are different, some people have insurance coverage also are paying for everything. Out of those paying for it ourselves some of us have the money saved and others (that would be me and my DH) are taking out a healthcare loan from citibank. the loan we got was for 12K at 3.99% from 24 months then the rate skyrockets. my new job i'm starting in the summer will have better coverage.
Regarding your chances- All clinics have different success rates, you have to do your homework. the vast majority have the best numbers for younger couples in your situation.
I have to mention that this process is really grueling and I think it is really great the genetic screening is available for couples such as yourself. I'm sure you've already thought about this but i have to comment- REALLY think about the timing. You guys are going through SO much right now. when were you thinking?
I can't even imagine how difficult things have been for you! Your basic questions are pretty easy, but your situation is far from that.
1st off money matters- all of us are different, some people have insurance coverage also are paying for everything. Out of those paying for it ourselves some of us have the money saved and others (that would be me and my DH) are taking out a healthcare loan from citibank. the loan we got was for 12K at 3.99% from 24 months then the rate skyrockets. my new job i'm starting in the summer will have better coverage.
Regarding your chances- All clinics have different success rates, you have to do your homework. the vast majority have the best numbers for younger couples in your situation.
I have to mention that this process is really grueling and I think it is really great the genetic screening is available for couples such as yourself. I'm sure you've already thought about this but i have to comment- REALLY think about the timing. You guys are going through SO much right now. when were you thinking?
Me-34- 1 tube shy of a pair
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
I think just about every IVF clinic will do PGD for you, and screening for Huntington's is pretty standard.
Your lack of infertility issues puts you a little ahead of the typical IVF patient in terms of pregnancy chances. At your relatively young age, you might ask about their safety record. You might be high risk for OHSS, so you might want to be sure they know what they are doing with respect to safety.
PGD is around $4000 for the entire embryo cohort, no matter how large or small.
Your lack of infertility issues puts you a little ahead of the typical IVF patient in terms of pregnancy chances. At your relatively young age, you might ask about their safety record. You might be high risk for OHSS, so you might want to be sure they know what they are doing with respect to safety.
PGD is around $4000 for the entire embryo cohort, no matter how large or small.
First, thank you for the responses.
SDtrying-I do realize DH and I are going through a lot, but I think having something positive in our future to focus on is helping us to cope. That positive thing being a child. We both wanted one so badly and have been thrown for a loop with all of this. Assuming my DH does have the disease (although I am praying really hard he doesn't), time is not on his side. His symptoms are identical to the way his father's were about one year ago. His father has since decompensated a ton, can no longer drive, figure out how to write a check or do math, struggles getting dressed, and is losing his speech. When Huntington's is passed on paternally, the age of onset is younger. There is a early, middle and late stage, w/ death occurring in the late stage. My father in law is in the middle stage and the dr. said each day will be his last "best" day. My DH and I both work in the mental health field and are pretty aware of what this has done to us but we love each other more each day (we've only been married less than a year) and really are best friends. The in vitro clinic is currently booked through august so we did want to make an appointment now, in case the test is positive. It has been a hard decision for him to get tested because he really doesn't want to know. But the chance of my children getting the disease fairly young is much more than I can take. I know I will be already caring for him and can't imagine watching my children suffer, knowing I could have prevented it. I do fear the entire IVF process and what the drugs will do to my body. But I've been through so much that if it gives me a healthy child and peace of mind, it is worth it.
Ghost-I actually had a really difficult time locating a clinic that tested for Huntington's. The majority did PGD but not for Huntington's, which I found a bit frustrating but am relieved now.
I do have one more question.....how long does the process take, like from first appointment until you get the final results?
SDtrying-I do realize DH and I are going through a lot, but I think having something positive in our future to focus on is helping us to cope. That positive thing being a child. We both wanted one so badly and have been thrown for a loop with all of this. Assuming my DH does have the disease (although I am praying really hard he doesn't), time is not on his side. His symptoms are identical to the way his father's were about one year ago. His father has since decompensated a ton, can no longer drive, figure out how to write a check or do math, struggles getting dressed, and is losing his speech. When Huntington's is passed on paternally, the age of onset is younger. There is a early, middle and late stage, w/ death occurring in the late stage. My father in law is in the middle stage and the dr. said each day will be his last "best" day. My DH and I both work in the mental health field and are pretty aware of what this has done to us but we love each other more each day (we've only been married less than a year) and really are best friends. The in vitro clinic is currently booked through august so we did want to make an appointment now, in case the test is positive. It has been a hard decision for him to get tested because he really doesn't want to know. But the chance of my children getting the disease fairly young is much more than I can take. I know I will be already caring for him and can't imagine watching my children suffer, knowing I could have prevented it. I do fear the entire IVF process and what the drugs will do to my body. But I've been through so much that if it gives me a healthy child and peace of mind, it is worth it.
Ghost-I actually had a really difficult time locating a clinic that tested for Huntington's. The majority did PGD but not for Huntington's, which I found a bit frustrating but am relieved now.
I do have one more question.....how long does the process take, like from first appointment until you get the final results?
???jensrae wrote: Ghost-I actually had a really difficult time locating a clinic that tested for Huntington's. The majority did PGD but not for Huntington's, which I found a bit frustrating but am relieved now.
Typically one cell is taken from each embryo on day 3 of development, FedExed to the genetic testing lab, and the test result are faxed or emailed to us the next day.I do have one more question.....how long does the process take, like from first appointment until you get the final results?
I don't know anything about PGD but can tell you that the whole IVF process from initial visit to pregnancy test can take awhile, but don't be discouraged.
Most women need to get a bunch of tests done before they get going because the RE is trying to figure rule out any treatable cause of infertility. They might skips those for you (although I'm not sure). You will however need quite a few baseline labs and DH will need some blood work, semen analysis and culture also.
Then they'll decide on your protocol which is different for everyone. It seems that the period of down regulation (when they have you on birth control) can very from none at all for some women and several weeks for others. At some point into taking the BCP you'll typically add lupron (everyone's meds are a little different but the actions are similar). You'll continue the lupron and stop the BCPs and wait for your period for a few days. (This was a two week period for me 1 week on BCPS alone, 1week on BCPs and lupron).
Once you get your period, your IVF cycle is really beginning. You'll get some labs and based on your results they'll give you your doses for "stimulation" this is a period between 8-14 days (typically 10) which they watch you very closely to make sure your estogen levels are adequate or not to high and to watch your follicles grow. When you have a couple follicles at about 18mm (different for each clinic) they'll tell you its time to "trigger" your ovulation- so you get a shot of HCG. Then they go the egg retrieval and 3-5 days after that they transfer them back to you. Then you enter the dreaded 2ww.
So short answer is that the shortest time it could be from the appt to the cycle would be about 2 months, i think, if they're moving really fast and don't do too much testing. So this is why most of our threads are May/June cyclers or April/May, etc.
Now how PGD effects this- i don't know.
sorry for the long post- i'm just trying to get you as much info as i wanted when i was looking into it. BTW, I am very familiar with Huntington's (not personally) but I'm in medical and have several patients with the illness. I admire your courage and commitment. Good luck with whatever you choose to do.
Most women need to get a bunch of tests done before they get going because the RE is trying to figure rule out any treatable cause of infertility. They might skips those for you (although I'm not sure). You will however need quite a few baseline labs and DH will need some blood work, semen analysis and culture also.
Then they'll decide on your protocol which is different for everyone. It seems that the period of down regulation (when they have you on birth control) can very from none at all for some women and several weeks for others. At some point into taking the BCP you'll typically add lupron (everyone's meds are a little different but the actions are similar). You'll continue the lupron and stop the BCPs and wait for your period for a few days. (This was a two week period for me 1 week on BCPS alone, 1week on BCPs and lupron).
Once you get your period, your IVF cycle is really beginning. You'll get some labs and based on your results they'll give you your doses for "stimulation" this is a period between 8-14 days (typically 10) which they watch you very closely to make sure your estogen levels are adequate or not to high and to watch your follicles grow. When you have a couple follicles at about 18mm (different for each clinic) they'll tell you its time to "trigger" your ovulation- so you get a shot of HCG. Then they go the egg retrieval and 3-5 days after that they transfer them back to you. Then you enter the dreaded 2ww.
So short answer is that the shortest time it could be from the appt to the cycle would be about 2 months, i think, if they're moving really fast and don't do too much testing. So this is why most of our threads are May/June cyclers or April/May, etc.
Now how PGD effects this- i don't know.
sorry for the long post- i'm just trying to get you as much info as i wanted when i was looking into it. BTW, I am very familiar with Huntington's (not personally) but I'm in medical and have several patients with the illness. I admire your courage and commitment. Good luck with whatever you choose to do.
Me-34- 1 tube shy of a pair
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
SDtrying-Thank you so much for the lengthy explanation. Any info that you have/experiences in working with Huntington's is welcome. We are so young and having a difficult time relating to our friends or helping them understand. Even our doctors know little/nothing about the disease. It is a really difficult decision to make with regard to trying naturally or IVF. I go back and forth about it. I have found a really supportive woman online whose mother in law has it and her DH never wanted to get tested so they conceived naturally, which she says the majority of those at risk do. I am torn. My DH doesn't want to get tested at all and wants a baby naturally. But he did make the appointment to get tested anyway and is terrified. I feel guilty on one hand for not wanting my children to suffer but putting him through this instead. However, I keep telling myself that it is the right thing to do and that I am saving DH the amount of guilt he will eventually feel if our children get it. I don't know the right answers but I also don't know how I could cope with looking at my children and knowing I made that choice for them. There is a local family here where the husband had symptoms in his twenties, like my DH, but they progressed really bad in his thirties and he was placed by CPS in a nursing home because he was becoming aggressive towards his three children. All three of those little girls have juvenile onset huntington's. When I think of how much they are suffering, the answer seems easy to me. It's just looking at my DH and his fear that makes me question myself. But I keep telling myself, once that baby is in our arms and we know it's been saved from the disease, nothing else is going to matter. I still don't know how we are going to afford it. We are young and own only our house and vehicles. We have about half of what it would take to pay for it in our savings. But I look at the amount I will have in student loans when I am done w/grad school ($60 grand) and I think, IVF to save my children is nothing. I just really hope it works for us and that I don't end up with OHSS. My doctor told me she thinks I may hyperovulate as fraternal twins run in my family and I have experienced a very painful ruptured ovarian cyst that put me in the hospital shortly after we began ttc. I don't know if we are the norm w/regard to trying another route to avoid passing on huntington's, but I do feel obliged because the medical field has options. I am fearful of our insurance finding out when we do the PGD as there are no laws in michigan to protect them from dropping us. We are trying to make it so that they don't. The clinic that is doing my DH's testing is anonymous and based on a numerical system. I am still grieving the loss of our life before we found out and the loss of my recent pregnancy. My BF here is much younger and began ttc her second when she found out we were ttc. Her due date is a week ahead of what mine would have been and I am ashamed to admit it haunts me constantly to think of the way I will feel when she has her baby. Thanks again for the info and any more added will be great. Is there a different protocol to prevent OHSS?
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JustinesBaby
- Regular
- Posts: 470
- Joined: Sun Nov 06, 2005 6:30 pm
Jenrae- Your situation is very difficult and no one can tell you what's "right" to do. There are no right answers when life throws you such things to deal with. I really don't like giving advice at all in these kind of situation because SO many people will want to tell you their 2 cents and right now you don't need anyones opinion- rather you need our support! From everything you have written you are thinking very clearly and weighing all the different factors, I have no doubt you will do what is right for you and your family.
Regarding Huntington's, I'm not a neurologist therefore not a specialist in the field, but I do have a unique training back ground that has exposed me to a few more patient's with huntington's than most doctors (I'm completing my residency training program in 2 month in Family Medicine and Psychiatry- its a combined program). The patient's I have worked with that have huntington's have been on the inpatient psychiatric unit (Keep in mind it is uncommon to have patients with the disease in this setting- I've dealt with unique cases) Really the only thing that I would encourage for you and your husband is to really sit down with a lawyer and draw up health care power of attorney papers. You don't have to run out and do it right now, in fact EVERY couple should do it, but it your situation I would make it a priority a bit sooner. As you mentioned, many time there are personality changes with Huntington's and it would be good to have this stuff done when you are sure that he is making choices that make sense.
Regarding OHSS, I'm not a specialist in this field so really many of the women on this board know more about this stuff than I do. However I can tell you that the more closely they monitor you the less like you will be to get it. I'm turning 32 this month and have insanely regular cycles and a low FSH- so was at risk myself. I was monitored closely and they stopped giving me the Follistim when my estrogen shot up. Also, my understanding is that you only risk OHSS if you get the HCG shot- so if they catch you early they wouldn't put you are risk. You'd lose a bunch of money though.
Regarding money- I forgot to mention that many of the women her are enrolled in studies. Any places near you where you could find a study to be in? With your unique situation it might be difficult, but might be worth it.
Regarding Huntington's, I'm not a neurologist therefore not a specialist in the field, but I do have a unique training back ground that has exposed me to a few more patient's with huntington's than most doctors (I'm completing my residency training program in 2 month in Family Medicine and Psychiatry- its a combined program). The patient's I have worked with that have huntington's have been on the inpatient psychiatric unit (Keep in mind it is uncommon to have patients with the disease in this setting- I've dealt with unique cases) Really the only thing that I would encourage for you and your husband is to really sit down with a lawyer and draw up health care power of attorney papers. You don't have to run out and do it right now, in fact EVERY couple should do it, but it your situation I would make it a priority a bit sooner. As you mentioned, many time there are personality changes with Huntington's and it would be good to have this stuff done when you are sure that he is making choices that make sense.
Regarding OHSS, I'm not a specialist in this field so really many of the women on this board know more about this stuff than I do. However I can tell you that the more closely they monitor you the less like you will be to get it. I'm turning 32 this month and have insanely regular cycles and a low FSH- so was at risk myself. I was monitored closely and they stopped giving me the Follistim when my estrogen shot up. Also, my understanding is that you only risk OHSS if you get the HCG shot- so if they catch you early they wouldn't put you are risk. You'd lose a bunch of money though.
Regarding money- I forgot to mention that many of the women her are enrolled in studies. Any places near you where you could find a study to be in? With your unique situation it might be difficult, but might be worth it.
Me-34- 1 tube shy of a pair
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
SDtrying-thanks again for even more info! It all helps. I just told my DH that whatever he decides to do I support him and he said that for his kids sake, he thinks he should get the test. I guess I am kind of more worried now that IVF won't work and we will have spent all of that money for nothing. I think because of the hand we have been dealt lately, I am more pessimistic about everything. I actually am going to school for my masters in mental health counseling and currently employed as a foster care worker. My DH is a recreational therapist on an inpatient psych. unit where I used to work. One of the lawyers I work with offered to draw up all of our legal documents pro bono so DH and I have accepted his offer and are just waiting until after the testing. DH thinks knowing is important financially for our future as well, i.e. not investing in retirement since he may not make it that long and rather investing in accessible things in case I need it while caring for him. I agree that there really is not a "right" decision but what is right for us personally. Either way, we are gambling with our future from my point of view. The closest clinic that even does what we would need is 6.5 hrs away and in another state. I will ask about studies though. My DH's uncle was actually diagnosed as paranoid schizophrenic, but now they think it is Huntington's. Good luck this week and thanks so much again.
Jensrae- I'm sure you feel a mess right now, but as an outsider and someone who doesn't know you my first impression is: "wow, this women is really doing everything she can in a rough situation" Some people just melt down and can't make plans. Good for you for everything you are doing and preparing for. You will be in my thoughts and prayers. Hope is everything- pessimism is easy- a woman like you've proven yourself to be doesn't do things the easy way, right? Hang in, the women on this message board are pretty great at support.
Me-34- 1 tube shy of a pair
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
DH 33- 6% morphology
TTC- since 1/07
IVF 5/2008-- BFP! (joy to the world)
DS born 1/25/09
planned FET mid-November 2010
still tryin' in the meantime!
Hi Jensrae,
My heart goes out to both you & your husband. I have a good friend that was diagnosed with HD a few years back & it's been devastating to him & his wife. I'm not sure how much longer she will be able to keep him at home. Their story actually reminds me a bit of yours -they were also trying to get pregnant, she went through 2 painful m/c's & then he got the diagnosis.
I would never presume to try to tell you what to do in such a hard time, but I do want to suggest that you & DH consider IUI with donor sperm. It's a fraction of the cost of IVF and you could choose a donor who closely resembled your DH.
I do hope testing shows your DH doesn't have HD. I understand his reluctance at getting tested -Im sure I'd feel the same way. But on the other hand, how could you live with the guilt of passing it on to your child knowing you could have prevented it? Again, such a hard/heartbreaking time for both of you. Please take your time in making whatever reproductive decision.
I'm hoping for the best for you. Please take care,
2ndtimer
My heart goes out to both you & your husband. I have a good friend that was diagnosed with HD a few years back & it's been devastating to him & his wife. I'm not sure how much longer she will be able to keep him at home. Their story actually reminds me a bit of yours -they were also trying to get pregnant, she went through 2 painful m/c's & then he got the diagnosis.
I would never presume to try to tell you what to do in such a hard time, but I do want to suggest that you & DH consider IUI with donor sperm. It's a fraction of the cost of IVF and you could choose a donor who closely resembled your DH.
I do hope testing shows your DH doesn't have HD. I understand his reluctance at getting tested -Im sure I'd feel the same way. But on the other hand, how could you live with the guilt of passing it on to your child knowing you could have prevented it? Again, such a hard/heartbreaking time for both of you. Please take your time in making whatever reproductive decision.
I'm hoping for the best for you. Please take care,
2ndtimer
[img]http://tickers.TickerFactory.com/ezt/d/1;20732;19/st/20080808/k/c515/preg.png[/img]
2 IVF's & 2 FET -all BFN
3rd IVF -BFP!!!
2 IVF's & 2 FET -all BFN
3rd IVF -BFP!!!
Jensrae, I'm so sorry to hear about all that you are going through. You sound like such a smart and level-headed person. I'm sure this is very difficult for you, but I'm so impressed with your clear thinking. You are a strong woman.
We're here to support you on thing board. I know you have many difficult decisions to make. I hope I can help in some small way with information. I see that SD has provided a lot of good information on the IVF process in general. I've been through 3 cycles, and I thought I'd share a few of my thoughts.
On preventing OHSS, it's true that the clinic can withhold the HCG trigger shot if you are at too high a risk.
There is another way to lower the risk of severe OHSS. The most severe forms of OHSS are associated with pregnancy. So they can go ahead with the trigger shot and egg retrieval, fertilize the eggs and freeze all the embryos to transfer later. (I'm in this situation now. My eggs were retrieved last week, but the embryos were frozen. I'll have a frozen embryo transfer (FET) in early July.)
As for how to pay for it, I know there are some clinics that offer money back packages. I'm sure the PGD would be extra. They cover a certain number of cycles and all associated frozen transfers. You get all or a portion of your money back if you don't get pregnant. Different clincs offer different arrangements. You may have to travel to a clinic that offers this option, but some of the monitoring can be done in your home town to minimize the travel. Just a thought.
This whole process is overwhelming when there aren't other circumstances to consider. If you have any other questions that we might be able to address, we'd love to help. Hugs to you.
We're here to support you on thing board. I know you have many difficult decisions to make. I hope I can help in some small way with information. I see that SD has provided a lot of good information on the IVF process in general. I've been through 3 cycles, and I thought I'd share a few of my thoughts.
On preventing OHSS, it's true that the clinic can withhold the HCG trigger shot if you are at too high a risk.
There is another way to lower the risk of severe OHSS. The most severe forms of OHSS are associated with pregnancy. So they can go ahead with the trigger shot and egg retrieval, fertilize the eggs and freeze all the embryos to transfer later. (I'm in this situation now. My eggs were retrieved last week, but the embryos were frozen. I'll have a frozen embryo transfer (FET) in early July.)
As for how to pay for it, I know there are some clinics that offer money back packages. I'm sure the PGD would be extra. They cover a certain number of cycles and all associated frozen transfers. You get all or a portion of your money back if you don't get pregnant. Different clincs offer different arrangements. You may have to travel to a clinic that offers this option, but some of the monitoring can be done in your home town to minimize the travel. Just a thought.
This whole process is overwhelming when there aren't other circumstances to consider. If you have any other questions that we might be able to address, we'd love to help. Hugs to you.
Me 34, DH 33
1st IVF: DD born 6/06
2nd IVF: 2/08 BFN
3rd IVF: 5/08, transfer cancelled
1st FET: 7/08, chemical
2nd FET: eventually...
1st IVF: DD born 6/06
2nd IVF: 2/08 BFN
3rd IVF: 5/08, transfer cancelled
1st FET: 7/08, chemical
2nd FET: eventually...
jensrae-
I'm sorry to hear that you and DH are having to go through this so young. My DH and I are young too, 28 and 33...and we have tons of school loans (over 120k). Luckily we have several clinics in town, but the cost of IVF itself was well over 10k as we don't have insurance coverage. We saved up for 2 years, and have made several sacrifices to come up with the money(no eating out, no movies, no vacations). We paid cash as we didn't want to take on more loans.
I am not trying to be negative, but I would say you need to consider several things, including the travelling and time off from work if your clinic is far away. Is there a clinic closer that can do the PGD by mail?
Also keep in mind that while you are stimulating, you have to be monitored every other day, I had to go in a total of 6 times I think. I wouldn't necessarily worry about OHSS, its a risk but I think for the most part they can control/monitor for it.
Have you considered adoption or donor sperm? I know both are expensive, but if you are concerned about passing on Huntington's to your children, it may be a viable option.
Good luck with your decision, and God bless you!
-Michele
I'm sorry to hear that you and DH are having to go through this so young. My DH and I are young too, 28 and 33...and we have tons of school loans (over 120k). Luckily we have several clinics in town, but the cost of IVF itself was well over 10k as we don't have insurance coverage. We saved up for 2 years, and have made several sacrifices to come up with the money(no eating out, no movies, no vacations). We paid cash as we didn't want to take on more loans.
I am not trying to be negative, but I would say you need to consider several things, including the travelling and time off from work if your clinic is far away. Is there a clinic closer that can do the PGD by mail?
Also keep in mind that while you are stimulating, you have to be monitored every other day, I had to go in a total of 6 times I think. I wouldn't necessarily worry about OHSS, its a risk but I think for the most part they can control/monitor for it.
Have you considered adoption or donor sperm? I know both are expensive, but if you are concerned about passing on Huntington's to your children, it may be a viable option.
Good luck with your decision, and God bless you!
-Michele
Me: 29
DH: 33
TTC: 2 years
1st IVF/ICSI April '08- BFP!
Its a girl! EDD 1-13-09
DH: 33
TTC: 2 years
1st IVF/ICSI April '08- BFP!
Its a girl! EDD 1-13-09
To everyone who has replied to my posting, thank you so much for the kind words and input. I feel like my head is spinning at the sudden lack of options for us but at the same time, I have to do what I can to take control of the situation and because my DH is already exhibiting what we presume to be symptoms of the disease, time is really important to me. I want my children to know him before the disease takes the majority of him away, so they can have the memories both they and he deserve. My DH and I both have insurance, and it is actually quite decent, but we are losing the fantastic coverage beginning in September and being dropped to a less satisfactory plan that provides no coverage for IVF or out of network docs. We live in a fairly rural area in upper michigan so any IVF clinic is a min. of 6-7 hours driving. I work in foster care, so I know a lot about adoptions and consider them a wonderful thing, however, not my first pick as far as options go. The process can be just as heart wrenching and fail, just like IVF, and I have seen it happen. I did get a little defeated today as I called to schedule our first IVF appointment at the place that actually does PGD for HD and they were no longer taking new patients and said they would call me back in June to possibly book into september. I am going to call a clinic in minnesota tomm. I found a federal law that prevents group insurance plans from dropping you or denying you enrollment based on genetic condition, regardless if it is pre-existing or not. There is no such protection at the state level but I would assume we are alright based on the federal law overriding the state law. I know my DH won't want to do donor sperm. He wants his own child and since there is a way for it to happen, I feel he should be able to have it. He is already not keen on IVF and I know if it weren't for me he wouldn't even consider it. I intend to fight my insurance company like mad if they will refuse to pay for as sufficient amount of our treatment. I consider PGD a preventative procedure, not just an elective one. It would be much more expensive for insurance to pay for a child with HD than without. I have been researching trying to find loopholes in our upcoming and existing plan. I feel fortunate that I have so many of the resources I do, even though it is a fairly small community. I was a nanny for a local neurosurgeon who I know would advocate for us, I am friends with lawyers, did my internship under two local neuropsychologists, and have made allies with as many people as I could along the way. I do intend to try to get as much satellite care done locally as I can and my OB/GYN doc has to be one of the kindest women I have ever met. My job is extremely flexible and fairly dispensable (except that I need the money). I have already gotten potential job offers upon completion of my degree, so that task has moved to the forefront since I would make much more money once I graduate. I am hoping we can pay for all of this with the equity we likely have in our house. I am trying so hard to stay positive and feel fortunate for the fact that we do have choices for our children. It is hard, the few days after the d & c I felt great but then had a rough night of a lot of pain and sudden bloody gushes last night. Tonights starting to look the same way. DH has decided to be negative about the IVF and his own testing today (it changes on a daily basis for him, which I understand), so he isn't speaking to me tonight. I just continue to watch videos of people with HD on youtube.com and it keeps me realistic as well as prevents me from making an emotional decision right now that would compromise my children's future. I am just praying I can keep DH on board long enough to get tested and go through with the things we need to do. I know someday he will understand better the way it feels to be a parent and watch your child sick in even the mildest way, but now is not that someday for him. Thanks for putting my mind at ease a bit about the OHSS. Also thanks to all of you women for being my only cheerleaders at the moment, you help keep me going. My DH's parents are coming up this weekend so I know I will be short on cheers then and probably resented a lot for introducing IVF with PGD as a solution to what is plaguing the remainder of the family who now doesn't have a choice with regard to their own fate. One of my foster parent's brought in her scrapbook on the IVF process she went through to conceive her daughter, and it was a bit overwhelming looking at the med schedule/monitoring calendar. But at this point I would do anything for baby without HD. Thanks again.