Confessions of a CF Husband - Trisha "close to dying"

[2xx1xy1JD]

I think if his book does get indeed published it was have small niche audience kind of like Stephanie Nielson and her book. I got sucked into Nate blog right before he took it down. I remember some of entries before and after the little girl was born. He is pretty nasty on twitter, but I have to laugh at some of his sports related tweets. He praised Tebow the other day.

I don't think it would be that hard for him to get the book published, based on how many readers the blog had. He'd definitely have a niche in the Christian/inspirational market.

OTOH, part of what was making the blog so compelling is that it was happening in real time. Someone told me about it right when they found a donor set of lungs that matched, and I was reading about the surgery without knowing whether Trish would survive. There was no flipping to the back pages to find out how it ends.

I'm disappointed to learn about the Twitter feeds. On the blog itself, you definitely knew that they opposed abortion, but it was in the context of their own decision with Gwyneth and not in-your-face anti-abortion rhetoric.

[Always_Save]

that newest picture of her and her little girl is so sad :(

i guess they didn't reactivate her, either. i feel for that little girl..i cant even imagine. i lost my mom when i was 19 and that was hard enough.

[Katiebug]

I found the blog very compelling when I first found it - it was when she was pregnant and in ICU, and then a few weeks later when she got her transplant. However I've had a serious distaste for Nate since I found his Twitter feed and read what an asshat he is towards people he has political and religious differences with. It's a side that isn't presented on the blog (which is why I've suspected a book deal was probably in the works for a while).

I'm sad for Gwyneth that Tricia has not been re-listed for transplant; it isn't easy for a child to lose her mother and Gwyneth seems like a sweet child. One thing I give the Lawrensons credit for is that they've never hidden or glossed over G's multiple medical issues and developmental delays related to her extreme prematurity.

Not being re-listed basically means that the surgeons don't think she'd be able to survive and a good set of lungs would be wasted, for lack of a better word. If they don't re-list her soon she will likely die.

[Always_Save]

i am not trying to be offensive in saying this..but i am on a lot of special needs groups and forums, and there are a lot of parents who have the gene for CF, and they have several kids that are born with it, and maybe 1-2 that aren't..to me, that seems awfully selfish to have a kid that has a very good change of having a fatal disorder in the hopes of getting 1 "normal" child. maybe the first one, because you didn't know..but to knowingly inflict that misery on a child seems cruel.

[RosyDaisy]

I agree, Always_Save. It is cruel indeed. If I knew there was a good chance of me having a child with a fatal condition, I wouldn't even dream of having children in the first place. I I would make sure I couldn't get pregnant in the first place.

[Always_Save]

hell, even if my little guy was my first, i dont think i would have anymore kids..we still dont know exactly what he has, which honestly makes it even scarier that things can just crop up, despite normal test results during pregnancy...a lot of people see disabled kids as blessings, and they ARE..but at the same time, i wouldn't knowingly inflict that on anyone, if i can help it.

so you can be too sick for a transplant? i thought that one would make you better?

[2xx1xy1JD]

hell, even if my little guy was my first, i dont think i would have anymore kids..we still dont know exactly what he has, which honestly makes it even scarier that things can just crop up, despite normal test results during pregnancy...a lot of people see disabled kids as blessings, and they ARE..but at the same time, i wouldn't knowingly inflict that on anyone, if i can help it.

so you can be too sick for a transplant? i thought that one would make you better?

As Nate explained it, the tricky thing about transplant lists is that you have to obviously be very sick to get on it, but not so sick that you are unlikely to survive the surgery and recovery. From what I understood, Trish's weight loss was a problem, since the process itself results in additional weight loss.

While Trish would have passed on the CF gene, it is a recessive trait and Gwyneth didn't inherit it from Nate as well, so she does not have CF. I agree with you that if I was a carrier, married to a carrier, I would not risk having children with the disease but would either adopt or do pre-implantation genetic diagnosis. I plan to make sure that my kids do the Jewish genetic diseases screening (thanks to a limited gene pool, there are genetic diseases that are more common in Ashkenazi Jews) before they start serious dating.

[Black Aliss]

That's such a weird thing to say. Begins and ends with. Does he mean that it's the only violence against children? Or that it's the only important violence against children?

Both. To the anti-choice crowd, life is sacred from the moment of conception until the moment you are born. After that, you're on your own, kiddo.

[chaotic life]

Nate posted on the blog at one point that he was tested and they knew for certain he was not a carrier before they ever tried to have a biological child.

Even if one parent has CF, unless the other parent has a mutation for it, the child will definitely be a carrier but not have the disease. It will be the grandchildren who you will have to worry about, because the child is guaranteed to be a carrier for CF.

I lived CF and I buried my son from it. I would not choose to get pregnant if I knew there was ANY chance of passing CF onto a child. There are a few adult CFers who will knowingly have children when they have a partner who is a carrier, but most refuse to pass it to their children and get their partners tested for the genes, go with pre-conceptions screening infertility treatments or seek adoption.

Tricia is not the only CFer in trouble this week. We lost two in the community already this week, one of which was herself married to another CFer and we have a third who got her lungs but has not been recovering from the transplant well. Sadly, we in the CF community online know and keep an eye out for each other, praying for those struggle and mourning when our joy is forced into sorrow. I haven't seen any updates from Nate in his usual communication format, but I will hear if Tricia loses her battle. Just like Micah's death such news passes quickly through the online CF community when we mus mourn our own.

[lilwriter85]

I found the blog very compelling when I first found it - it was when she was pregnant and in ICU, and then a few weeks later when she got her transplant. However I've had a serious distaste for Nate since I found his Twitter feed and read what an asshat he is towards people he has political and religious differences with. It's a side that isn't presented on the blog (which is why I've suspected a book deal was probably in the works for a while).

I'm sad for Gwyneth that Tricia has not been re-listed for transplant; it isn't easy for a child to lose her mother and Gwyneth seems like a sweet child. One thing I give the Lawrensons credit for is that they've never hidden or glossed over G's multiple medical issues and developmental delays related to her extreme prematurity.

Not being re-listed basically means that the surgeons don't think she'd be able to survive and a good set of lungs would be wasted, for lack of a better word. If they don't re-list her soon she will likely die.

I'm still a new reader to Nate's blog, twitter feed, and IG. I give him and Tricia credit for not hiding Gwyneth's issues. I thought the pic of Nate hugging G after her cochlear implant surgery was a sweet picture.

[Jana814]

I have to agree with above I just could not knowingly pass on a possible genetic disease to my children. I once saw a story of a pair of twins (boy/girl) who were adopted (together) the woman's son had CF, they were searching for their birth parents to get some answers for a medical backround. The woman even said that if she knew she was a carrier of CF she would have done testing to see, but because she did not know her history, it never occured to her that could have a child w/ CF.

[Emme]

As Nate explained it, the tricky thing about transplant lists is that you have to obviously be very sick to get on it, but not so sick that you are unlikely to survive the surgery and recovery. From what I understood, Trish's weight loss was a problem, since the process itself results in additional weight loss.

While Trish would have passed on the CF gene, it is a recessive trait and Gwyneth didn't inherit it from Nate as well, so she does not have CF. I agree with you that if I was a carrier, married to a carrier, I would not risk having children with the disease but would either adopt or do pre-implantation genetic diagnosis. I plan to make sure that my kids do the Jewish genetic diseases screening (thanks to a limited gene pool, there are genetic diseases that are more common in Ashkenazi Jews) before they start serious dating.

I'll be doing those. My mom is Jewish, dad is Irish, so they didn't get tested, but if I marry a Jew I will definitely get tested. If I have any of them, I'll adopt. Well, I'm adopting anyway, but yeah.

[Morton Fan]

Nate posted on the blog at one point that he was tested and they knew for certain he was not a carrier before they ever tried to have a biological child.

Even if one parent has CF, unless the other parent has a mutation for it, the child will definitely be a carrier but not have the disease. It will be the grandchildren who you will have to worry about, because the child is guaranteed to be a carrier for CF.

I lived CF and I buried my son from it. I would not choose to get pregnant if I knew there was ANY chance of passing CF onto a child. There are a few adult CFers who will knowingly have children when they have a partner who is a carrier, but most refuse to pass it to their children and get their partners tested for the genes, go with pre-conceptions screening infertility treatments or seek adoption.

Tricia is not the only CFer in trouble this week. We lost two in the community already this week, one of which was herself married to another CFer and we have a third who got her lungs but has not been recovering from the transplant well. Sadly, we in the CF community online know and keep an eye out for each other, praying for those struggle and mourning when our joy is forced into sorrow. I haven't seen any updates from Nate in his usual communication format, but I will hear if Tricia loses her battle. Just like Micah's death such news passes quickly through the online CF community when we mus mourn our own.

Agreed ... I'm a part of the CF community also, and it's quite an amazing one. I really ache for Trisha and her family.

[Vex]

I'd read the blog and thought they sounded like sweet, brave people - until I read here. It's a shame that Nate sort-of idealises something as awful as CF. He needs to open his mind and heart. People with terminal illnesses aren't always strong and brave and super intelligent. That's just life. They can be average people, or mentally challenged, or scared and unpleasant.

It doesn't make their deaths any less painful for those left behind, or their short lives any less meaningful.

[crazyforkate]

hell, even if my little guy was my first, i dont think i would have anymore kids..we still dont know exactly what he has, which honestly makes it even scarier that things can just crop up, despite normal test results during pregnancy...a lot of people see disabled kids as blessings, and they ARE..but at the same time, i wouldn't knowingly inflict that on anyone, if i can help it.

When I was twenty, I took a DNA test that revealed that I'm a carrier for CF. I don't plan to have children for a while, but you can bet that when I do the father will be tested, and he will have to be willing to take steps to not have a child with CF (gamete donation, pre-implantation diagnosis, abortion, or simply not having biological children). And if I got pregnant and didn't know the father's history? I'd abort, no question. It's just not something I'm willing to put a child of mine through, and I have insisted that my nieces and nephew get tested for the gene as well.

[2xx1xy1JD]

I have to agree with above I just could not knowingly pass on a possible genetic disease to my children. I once saw a story of a pair of twins (boy/girl) who were adopted (together) the woman's son had CF, they were searching for their birth parents to get some answers for a medical backround. The woman even said that if she knew she was a carrier of CF she would have done testing to see, but because she did not know her history, it never occured to her that could have a child w/ CF.

Knowing your medical history wouldn't necessarily make a difference. It's a recessive gene. Carriers don't have any symptoms, and the birth parents may never have had any reason to be tested for the gene.

[2xx1xy1JD]

When I was twenty, I took a DNA test that revealed that I'm a carrier for CF. I don't plan to have children for a while, but you can bet that when I do the father will be tested, and he will have to be willing to take steps to not have a child with CF (gamete donation, pre-implantation diagnosis, abortion, or simply not having biological children). And if I got pregnant and didn't know the father's history? I'd abort, no question. It's just not something I'm willing to put a child of mine through, and I have insisted that my nieces and nephew get tested for the gene as well.

Your decision, but you are talking about aborting an otherwise wanted hypothetical pregnancy due to a 1% risk. The CF gene is present in 1 out of 25 people of European descent (it's lower in other groups), and if two carriers make a baby, there is a 1 in 4 chance that the baby will have both defective genes, so that = 1 in 100 odds of a child with CF if a known carrier gets pregnant by father with unknown status.

Amniocentesis or CVS could also reveal the genetic status prenatally.

[treemom]

I am just boggled that someone thinks having an opinion is worthy of deportation.

from â€@NathanLawrenson

"In other news, I would love nothing more that to see piers morgan deported. "

Also judging from a post from yesterday things aren't looking good for reactivation.

[mirele]

I agree, Always_Save. It is cruel indeed. If I knew there was a good chance of me having a child with a fatal condition, I wouldn't even dream of having children in the first place. I I would make sure I couldn't get pregnant in the first place.

One of my nephews was born with a partial albinism. My sister and brother-in-law went and had a genetic screening done and learned they had a one in four chance of having a child with full albinism the next time around. They didn't like the odds, so my brother-in-law got a vasectomy.

[lilwriter85]

It looks Nate is pissed about Piers Morgan's recent comments on gun control. I confess I only watch Morgan's show once in awhile. I watched a few weeks back when he had Cory Booker on. I'm mixed on gun control and what it should be done. But I think Nate is an idiot to want deportation for Piers Morgan. A lot of American born citizens share the same feelings.

I also noticed that one of Nate's fanboys chrisfromcanada also frequently tweets a friend of a friend of mine.

[crazyforkate]

Your decision, but you are talking about aborting an otherwise wanted hypothetical pregnancy due to a 1% risk. The CF gene is present in 1 out of 25 people of European descent (it's lower in other groups), and if two carriers make a baby, there is a 1 in 4 chance that the baby will have both defective genes, so that = 1 in 100 odds of a child with CF if a known carrier gets pregnant by father with unknown status.

Amniocentesis or CVS could also reveal the genetic status prenatally.

That would be IF the father had the gene. He would ideally be tested before kids were on the horizon.

[treemom]

He confirmed she was not reactivated yesterday.

[lilwriter85]

I still feel sorry for them. But I I still agree with a previous poster, that someone else should be given the chance for new lungs.

[Spider Burps]

One of my nephews was born with a partial albinism. My sister and brother-in-law went and had a genetic screening done and learned they had a one in four chance of having a child with full albinism the next time around. They didn't like the odds, so my brother-in-law got a vasectomy.

I missed this while I was gone for the holidays, but I felt compelled to bump this thread to say W.T.F.? A) Albinism is not a fatal condition, and B) what in the name of all that is good and holy is "a partial albinism"? Do you mean ocular albinism or do you just mean "any sort of albinism other than that one that 'Powder' had"? :roll: And who decides not to have children because they might be doomed!!!!! to a life of *gasp* glasses and *swoon* hypopigmentation? I'm not easily offended, but... ugh... WTF?!

Signed,

one of FJ's pigmentally (shh, that's a word now) challenged

[PennySycamore]

I missed this while I was gone for the holidays, but I felt compelled to bump this thread to say W.T.F.? A) Albinism is not a fatal condition, and B) what in the name of all that is good and holy is "a partial albinism"? Do you mean ocular albinism or do you just mean "any sort of albinism other than that one that 'Powder' had"? :roll: And who decides not to have children because they might be doomed!!!!! to a life of *gasp* glasses and *swoon* hypopigmentation? I'm not easily offended, but... ugh... WTF?!

Signed,

one of FJ's pigmentally (shh, that's a word now) challenged

:clap: :clap: :clap: :clap: :clap: :clap: Well said, Spider Burps, very well said indeed!

-Penny, grandmother to a healthy granddaughter with total albinism