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

[Katiebug]

As recently as a few days ago, Nate tweeted: "Don't think this election is important? The next president could decide the fate of millions of unborn babies." Last week as his wife's condition was deteriorating, he was spending his time tweeting about how the Bible tells him he has to vote for the most pro-life candidate, most pro-Israel candidate, most pro-marriage candidate, etc. He says Obama is not a Christian because the President's version of Christianity isn't the same as his. Oh, and he's been pimping a book to publishers. They're a lot more religious and socially conservative than they let on for the blog.

I totally get being uncomfortable with the idea of abortion but also being OK with the right of others to make that choice. The Lawrensons make it very clear that they don't want others to even have that choice. If you read the story of Tricia's early pregnancy, her OBGYN said that she had never recommended that a patient terminate, but she was recommending it in that case. They chose to proceed and the pregnancy took a serious toll on her body. It sucks, but she still has CF. Even with the new lungs, her life expectancy is not anywhere near the average - 5 year survival for a lung transplant is only around 50%, with 10 year survival under 30%. From the beginning they knew that if they had a child the odds of Tricia seeing their child grow to adulthood were extremely slim. About the best outcome here is the fact that Gwyneth survived the pregnancy and the complications of prematurity and has grown into a sweet child who is obviously loved by her entire family, and Tricia has had four years with their daughter.

The thought of that little girl losing her mom at 4.5 years old is freaking heartbreaking. Regardless of their religious and political views there's no denying that Nate and Tricia are loving parents who have done anything they can to get her appropriate therapies and treatment to help with her issues due to prematurity. No one wants for a young man to lose his wife and a little girl to lose her mother. It's just that there's more to the story than what's on his blog.

[Anycah]

Fact is, with CF, she wasn't going to reach 40 most likely. It's a terrible disease. If having a child was that important to her, important enough to risk her life, then that is her choice and I respect it. It's not like they didn't understand going in that this was likely to severely affect her health, and from the story as written, it really sounds like she was more for this than her husband. In terms of not using protection, it's not unheard of for CFers to have fertility issues, and if they had tried for so long without it, I can't fault them for thinking it very unlikely.

I don't even necessarily think that they are discarding her life... I mean, it's not like they are trying for a full Quiver (that we know of anyway). It's probably not the choice I would have made, even as a current parent (sorry kiddo!), but I can somewhat sympathize with "I will probably die before 40, and I'd like to leave behind a piece of me for my husband" or "Having a child is important to me and I want to have that experience." This isn't a clear cut case of "live until 75 childless" or "die at 28 after having a kid."

Was the decision unduly influenced by their religious beliefs? I have no idea, but I really hope that it wasn't a case of "I won't be a godly wife until I have a child."

I'm not necessarily going to fault him for dealing with the terminal illness of a loved one by making her into a special saint of awesome. And, as their entire life is built around her (and Gwyneth's) medical care, I don't want to fault them too badly on some of the choices they have made. They aren't in the same league as fundies that don't take their children to doctors ever and have unassisted homebirths.

I will fault him for his political agitations and their belief that pregnancy should never be terminated. If Nate becomes more active politically, he could provide a frankly dangerous perspective on the "life of the mother" side of the debate.

I hope she gets more time with her daughter.

[chaotic life]

In the US, half of all CFers will live past their 18th birthday and half will not. The life expectancy statistic published by the CFF is a deliberately altered and false statistic meant to give hope and generate fund raising dollars. Most CF families are aware of that fact, even if they cling to the false projected statistic of 30+ that is given. Even if you are clinging to the CFF's "projected median age" number, it's early 30s.

Average lifespan for a CFers after transplant is 4-6 years. Tricia is precisely in that average. As tragic as this feels, she's not different than all CFers in this. There are mothers of babies waiting for lungs in the hopes they too can have a FEW years with their babies. There are teens and children whose only hope to see adulthood is those lungs.

Tricia is not progressing in an unexpected manner. She was given a precious gift both in a daughter who survived and four years with that baby. To me, it IS entitlement to say more years with her family is more important and valuable than another CFer needing one extension on their life. That's why I have big feelings about those who actively seek second transplants.

[Cherokee2000]

I'm sure there is someone who knows more but I understand the transplant lists to not only rank people in terms of how sick they are (people who are more in need get the organ first) but also take into account factors that may affect the success of the transplant because they want the people who get the organs to actually be able to use them. I have heard that needing a second transplant puts you at more risk for not surviving the transplant or surviving long after so I think you are correct on that count. In terms of CF being a terminal illness, I think that is a pretty common disease to get lung transplants for, but I imagine she could reach the point where because of how her illness has progressed it doesn't look like she will fare well even with a transplant which again could cause problems with her eligibility or ranking.

I've had experience with family members on both sides of the organ transplant situation. In 1985, my 30-year-old brother became brain-dead after a head injury. Five people benefitted from transplants of his organs.

In 2007, my then-59-year-old cousin received a double-lung transplant. Her disease, although not CF, would have been fatal. She had four good years after the transplant, and then had some problems. Apparently all organ recipients go into some degree of rejection at some point, and for her it was after the four-year mark. During the spring of this year, we did not expect her to survive, but after a very difficult summer, she actually went home. She is no longer "in rejection," but she will be on bottled oxygen for the rest of her life.

Is my cousin a candidate for a second lung transplant? Basically, no. As tough as it is to say, she's had her five years. Her children have grown up, so she is not similar to Trisha in that respect. But donated organs are exceedingly rare, and there absolutely must be a priority list. I'm not against people having a second chance, if and when we have an unlimited organ supply, but we're not at that stage yet.

Speaking as a person whose family signed the permission form to donate a loved one's organs, I do very much care that the organs will go to the person who is the best candidate. When my brother died, the heart transplant program was just starting here, and there was a long list of patients waiting for that first heart. His heart went to the person who was second on the list, since that person was a better match, probably related to size.

In spite of the "happily ever after" stories that you hear, realistically transplants are not forever. My cousin knows that, and so do we. My brother's heart eventually stopped beating some years later, when the recipient died of an unrelated illness. The point is, transplants are at best an extension of life, and people are lucky/blessed to get that extension.

I think that Trisha and Nate know that too, and are making the most of the time they have. Wouldn't it be wonderful if Trisha's rejection problems cleared up spontaneously like my cousin's did?

[Beeks]

While I wish that Tricia wasn't this ill and feel sorry for the family. They are fundies. I also got into it wit Nate. The transplant and lymphoma and march of dimes support was all done after these things happened to their family. They are rabidly anti-choice and were louder about it in the past.

I would never be so presumptuous to tell people when they should abort or should not. Nate however is.

How does being a loud, pro-life Christian make him a fundie? They wear pants, believe in college, and don't court, right?

[Minerva]

As recently as a few days ago, Nate tweeted: "Don't think this election is important? The next president could decide the fate of millions of unborn babies." Last week as his wife's condition was deteriorating, he was spending his time tweeting about how the Bible tells him he has to vote for the most pro-life candidate, most pro-Israel candidate, most pro-marriage candidate, etc. He says Obama is not a Christian because the President's version of Christianity isn't the same as his. Oh, and he's been pimping a book to publishers. They're a lot more religious and socially conservative than they let on for the blog.

I'm pretty sure being against 10% of the population getting married makes you anti-marriage. Wanting 100% of the population to be able to get married - that's being pro-marriage.

ETA and does he really believe electing Romney will prevent millions of abortions? Even if you're naive enough to think making abortion illegal stops it from happening...what does he think Romney is going to do? The president can't just snap their fingers and overturn Roe v. Wade, hence it still being legal after 8 years of Bush, and Romney is way more wishy-washy on abortion rights than Bush was. What a dumb thing to tweet...

[lilwriter85]

Fact is, with CF, she wasn't going to reach 40 most likely. It's a terrible disease. If having a child was that important to her, important enough to risk her life, then that is her choice and I respect it. It's not like they didn't understand going in that this was likely to severely affect her health, and from the story as written, it really sounds like she was more for this than her husband. In terms of not using protection, it's not unheard of for CFers to have fertility issues, and if they had tried for so long without it, I can't fault them for thinking it very unlikely.

I don't even necessarily think that they are discarding her life... I mean, it's not like they are trying for a full Quiver (that we know of anyway). It's probably not the choice I would have made, even as a current parent (sorry kiddo!), but I can somewhat sympathize with "I will probably die before 40, and I'd like to leave behind a piece of me for my husband" or "Having a child is important to me and I want to have that experience." This isn't a clear cut case of "live until 75 childless" or "die at 28 after having a kid."

Was the decision unduly influenced by their religious beliefs? I have no idea, but I really hope that it wasn't a case of "I won't be a godly wife until I have a child."

I'm not necessarily going to fault him for dealing with the terminal illness of a loved one by making her into a special saint of awesome. And, as their entire life is built around her (and Gwyneth's) medical care, I don't want to fault them too badly on some of the choices they have made. They aren't in the same league as fundies that don't take their children to doctors ever and have unassisted homebirths.

I will fault him for his political agitations and their belief that pregnancy should never be terminated. If Nate becomes more active politically, he could provide a frankly dangerous perspective on the "life of the mother" side of the debate.

I hope she gets more time with her daughter.

I found Nate's twitter awhile ago and based on a lot of stuff he posts, I wouldn't be surprised if he becomes more active in politics. I can see him also ending up as a spokesperson for pro-life organizations. Someone like Nate would gain a lot of support from the Christian circles that have the "never abort in any case" belief. On the Josh Duggar instagram thread, one of the Duggar leghumpers posted a comment about Salvation Army not being 100% pro life because they are ok with abortions in cases of rape, incest, or if the mother's life is in danger.

[lilwriter85]

I'm pretty sure being against 10% of the population getting married makes you anti-marriage. Wanting 100% of the population to be able to get married - that's being pro-marriage.

/quote]

I also thought that was very dumb. I think Nate and some pro-lifers really believe that somehow Roe v. Wade will be overturned someday. I wonder if Nate has heard or read about the story in which Romney during his days as LDS bishop tried to convince a LDS woman not to abort despite health issues. The woman was advised to abort by her doctors. She decided to abort and Romney showed up at either her doctor's office or abortion clinic and tried to convince her and her husband not to abort. If Nate knows about this story, he probably thinks the world of Romney. The couple that Romney dealt with already had 2 or 3 kids and the fact that they had kids at home played an important factor when it came to deciding abort.

ETA: I found an article about the Romney story and the woman had four kids at home at the time of her abortion.

http://www.huffingtonpost.com/geoffrey- ... 56568.html

[bionicmlle]

just caught myself up on this blog. These folks have their daughter, Gwyneth, AND a foster child? I may be super-judgy today but they don't seem like the best candidates for a foster child given the excessive medical needs of 2/3 of the family.

[valsa]

How does being a loud, pro-life Christian make him a fundie? They wear pants, believe in college, and don't court, right?

Skirts, courting, and SOTDRT do not a fundie make.

They believe that everyone in this country (and probably the world) should be forced to follow their beliefs. They are fundie.

[Minerva]

/quote]

I also thought that was very dumb. I think Nate and some pro-lifers really believe that somehow Roe v. Wade will be overturned someday. I wonder if Nate has heard or read about the story in which Romney during his days as LDS bishop tried to convince a LDS woman not to abort despite health issues. The woman was advised to abort by her doctors. She decided to abort and Romney showed up at either her doctor's office or abortion clinic and tried to convince her and her husband not to abort. If Nate knows about this story, he probably thinks the world of Romney. The couple that Romney dealt with already had 2 or 3 kids and the fact that they had kids at home played an important factor when it came to deciding abort.

ETA: I found an article about the Romney story and the woman had four kids at home at the time of her abortion.

http://www.huffingtonpost.com/geoffrey- ... 56568.html

I see, and they want an anti-choice president to be in office "when" that happens? Or is it that they think an anti-choice president could change enough at the supreme court level and lead to it being overturned?

Romney's a fucking asshat. I highly doubt he'd think it was ok for an acquaintance to show up at one of his sons' hospital births because they were an Elle-like homebirth activist who believed the interventions were going to kill Ann and the baby. Or to one of his sons' home births because they believed a lack of medical intervention was going to kill Ann or the baby. Or intruded on tearful goodbyes at the airport because they thought their son might get killed on his mission trip. But it's different if Mitt considers it a matter of life or death. I guess that's what happens when your ego is the size of Neptune.

[Minerva]

Skirts, courting, and SOTDRT do not a fundie make.

They believe that everyone in this country (and probably the world) should be forced to follow their beliefs. They are fundie.

I'm not arguing, because my definitions of fundie, fundie-lite, and non-fundie Christian are pretty shaky. But don't fundie lite people, Born-Again Christians for instance, typically want that too?

[valsa]

I'm not arguing, because my definitions of fundie, fundie-lite, and non-fundie Christian are pretty shaky. But don't fundie lite people, Born-Again Christians for instance, typically want that too?

There are variable definitions of the word "fundie" but I personally don't buy into the whole "fundie lite" thing. To me, that's like calling some "child-abuser lite" or "murderer lite". While some fundies are obviously worse than others, people aren't "fundie lite" just because they're slightly better than "completely horrible".

[lilwriter85]

I see, and they want an anti-choice president to be in office "when" that happens? Or is it that they think an anti-choice president could change enough at the supreme court level and lead to it being overturned?

Romney's a fucking asshat. I highly doubt he'd think it was ok for an acquaintance to show up at one of his sons' hospital births because they were an Elle-like homebirth activist who believed the interventions were going to kill Ann and the baby. Or to one of his sons' home births because they believed a lack of medical intervention was going to kill Ann or the baby. Or intruded on tearful goodbyes at the airport because they thought their son might get killed on his mission trip. But it's different if Mitt considers it a matter of life or death. I guess that's what happens when your ego is the size of Neptune.

I think they are hoping for something like that to eventually happen. They are idiots to think like that, I do have sympathy for Nate for the situations that Trisha and Gweynth are in. I respect for Nate and Trisha for choosing not to abort their daughter. It was their choice and they were free to make it. It annoys me that they feel that others shouldn't have the option to abort. I was looking through Nate's instagram and it obvious that he loves that little girl. I don't think he cares that other people's situations regarding whether to terminate a pregnancy might have various factors that he might not understand or relate to. The woman in the Romney incident was in a situation in which there was risk for her to die and leave four children behind.

I agree, Romney is an asshat and after reading about the incident in which he tried to pressure that a woman into giving her son for adoption because he didn't have a father around also turned me off. Adoption is another thing that should be the choice of natural parent or parents. After reading that, I think LDS adoption agencies probably do shady stuff.

[chaotic life]

After reading that, I think LDS adoption agencies probably do shady stuff.

That incident is only the tip of the iceberg of the horror stories of Mormon adoption agencies. Utah adoption laws are specifically set up under Mormon adoption principles and in any other state their practices would be recognized for the child kidnapping they are. Seriously, if you research it, especially read the lawsuits that have happened in the last several years, you would be horrified and heartbroken.

[DistantStar]

There are variable definitions of the word "fundie" but I personally don't buy into the whole "fundie lite" thing. To me, that's like calling some "child-abuser lite" or "murderer lite". While some fundies are obviously worse than others, people aren't "fundie lite" just because they're slightly better than "completely horrible".

Whereas what a lot of FJers call "fundie lite" is what I would call fundie, and what is called "fundie" I would call "extremist" or "ultra-fundie." At least if you were raised plain 'ol fundie you have a chance of a normal life if you want to leave; there might be major family conflict but you likely have some education and haven't been totally isolated from the real world. If you were raised extremist then you are in serious trouble and will need all sorts of special help to adapt because you didn't grow up in the real world and you don't know what the real world is actually like as you have been deliberately lied to.

[Katiebug]

just caught myself up on this blog. These folks have their daughter, Gwyneth, AND a foster child? I may be super-judgy today but they don't seem like the best candidates for a foster child given the excessive medical needs of 2/3 of the family.

Yes, they have a foster and were first approved as foster parents nearly 2 years ago when Tricia's health was in a much better state. Although when Tricia's health began to deteriorate again a few months ago Nate posted on his blog that they'd likely send the foster child back to the state, it appears that didn't happen. I have no issue with foster parents with chronic illness or disabilities, as long as they're able to suitably care for the foster child and provide a safe and nurturing home. I worry that with Tricia's recent decline they're really no longer able to do that effectively.

I feel for that foster child - a foster home is supposed to provide stability and security for a child whose family cannot provide those things. When Tricia was reasonably healthy and functional, it probably seemed like a great idea. Now they have a child who has become integrated into their family life and home and who likely has developed a bond with both of them (and vice versa), and who is now staying with various relatives of Nate and Tricia because Tricia's at Duke and Nate spends most of his time there with her. Yeah, the foster is with Gwyneth so that probably helps but it's still a ton of upheaval and emotional distress for a child who is already vulnerable by virtue of being in foster care to begin with!

Will the state allow Nate to continue to foster (or foster-to-adopt if that's the scenario) even if Tricia doesn't pull through? I thought most Southern states didn't look kindly on singles as foster parents, particularly single men, but I could be mistaken.

[treemom]

When I was going to be a living donor a few years ago (we ended up having issues before it happened) one of the reasons my potential recipient was looking for altruistic donors was because it was his second transplant after just a trainwreck of problems and it ended up being removed. He was goi g to have a hard time getting a second transplant even though he had no working kidneys because of a failed first time

[treemom]

How does being a loud, pro-life Christian make him a fundie? They wear pants, believe in college, and don't court, right?

I always am surprised that people have this view of fundie. Because I am sure Nate and Tricia would call themselves fundamentalist evangelical Christians. In fact this dresses only, no college, courting fundamentalist is relatively new to me. Nate and Tricia went to Liberty university which is without a doubt fundamentalist. They have those beliefs....they believe in a divinely inspired, every single word of the bible. They believe the bible has all their answers. They believe in no protected class for gay people. They don't believe abortion should be legal in any circumstances. They believe divorce is a grave sin an only reserved for rare circumstances. They are likely a liberal view of complementarian.

The fundie you describe is on the far end of the spectrum,

[treemom]

I'm not arguing, because my definitions of fundie, fundie-lite, and non-fundie Christian are pretty shaky. But don't fundie lite people, Born-Again Christians for instance, typically want that too?

They are fundie to me. Hell most of those people wear the fundamentalist tag as a badge.

[Sola]

If wearing skirts makes one fundie, then I guess this atheist here is really a fundie. Its the views that count, not the clothes, hairstyles or whatever. They are fundie, no doubt. I feel sorry for them, CF is devastating. But I don't like them.

[kb2]

I think that if you'd rather carry a pregnancy than survive, then that's your choice and I'd support it. I can understand wanting to experience a major event that most healthy people get to do, even if that event shortens your lifespan, and even if it would leave a child motherless.

However, forcing everyone in that situation to do the same thing? That's callous at worst, dangerously naive at best, and unforgivable either way.

I don't want to wish bad things on them because I think they deserve it, because I don't think voting differently from me really warrants a death sentence. But these people take their own luck and claim everyone else in the world will have the same outcome or better, and that people with worse outcomes deserve it or did something wrong. I wish they could have real empathy for people going through similar situations that turn out worse, and that they could continue to have good luck and Trisha could recover, and they could find a way to deal with their situation without protecting their emotions behind a bubble of, we-deserve-this-because-we-did-the-right-things.

[chopstix]

I've been reading their blog for a while and have always felt that Nathan had the attitude that he is better than everyone. A lot of his posts are condescending, IMO.

[lilwriter85]

I always am surprised that people have this view of fundie. Because I am sure Nate and Tricia would call themselves fundamentalist evangelical Christians. In fact this dresses only, no college, courting fundamentalist is relatively new to me. Nate and Tricia went to Liberty university which is without a doubt fundamentalist. They have those beliefs....they believe in a divinely inspired, every single word of the bible. They believe the bible has all their answers. They believe in no protected class for gay people. They don't believe abortion should be legal in any circumstances. They believe divorce is a grave sin an only reserved for rare circumstances. They are likely a liberal view of complementarian.

The fundie you describe is on the far end of the spectrum,

I bet they believe in protection for Trisha and Gweynth because they have disabilities and chronic illnesses My boyfriend and his family used to volunteer with Special Olympics. My boyfriend's mom is a retired occupational therapist and she inspired her kids to get involved with SO and similar organizations. My bf liked volunteering with SO for the most part, but he was annoyed by some of the parents he dealt with. Some of them were conservative Christians whose kids have Down Syndrome or other intellectual disabilities. Some of those parents use to clash with some of the more liberal parents over abortion and gay rights. My boyfriend has said that he always found it weird that the some of the parents wanted protection for their kids from bullying/discrimination, but they didn't want gay people to have that as well. My boyfriend held his tongue around those parents and he said he felt like telling them about how the Nazis also killed gay and disabled people during the Holocaust. My bf stopped volunteering with SO in early 2011, he broke his leg and decided to take time off to recover. After he recovered, other things came up with his job and his family. He is hoping to volunteer again with SO in the future. He is prepared to witness the usual conflicts over political issues. We sometimes read blogs about families that have kids with Down Syndrome. There is one blogger that is a devout Catholic and has said that she is pro-life. She and her husband have a 3 year old boy. In one of her recent postings, she talks about they had dinner at Chic-Fil-A. I know that might not mean anything and maybe she is ok with gay people. But it did make wonder if she is anti-gay.

I hate to say this, but Gweynth is going to deal with bullying and discrimination throughout her life. Not all children or adults are going to easily accept her. There are always going to be mean children and mean teens. I can see Nate trying to protect her and he has the right to demand that she not be discriminated against for her hearing impairment. But yet, he probably wouldn't want the parents of a gay teenager to have that same right.

[Beeks]

I always am surprised that people have this view of fundie. Because I am sure Nate and Tricia would call themselves fundamentalist evangelical Christians. In fact this dresses only, no college, courting fundamentalist is relatively new to me. Nate and Tricia went to Liberty university which is without a doubt fundamentalist. They have those beliefs....they believe in a divinely inspired, every single word of the bible. They believe the bible has all their answers. They believe in no protected class for gay people. They don't believe abortion should be legal in any circumstances. They believe divorce is a grave sin an only reserved for rare circumstances. They are likely a liberal view of complementarian.

The fundie you describe is on the far end of the spectrum,

I actually tend to agree with the more inclusive definition of fundie you give. I brought up a blogger here once though (now I don't even remember who) who was pro-life, anti-gay, spanked her toddlers, etc etc and was told she didn't count as a fundie because that was just regular Christian in the south. I figured my lack of Christianity made it hard to distinguish between the types, so I'm actually glad to hear that others have a more liberal definition of fundie than just the extreme cases we most often discuss here.