Nathan Lawrenson's Twitter

[tinylegs1]

And finally, never, EVER in her life was she even non-compliant or labeled non-compliant. Ever. The mere thought of people suggesting this makes me blood run cold. My sister has never been anything but amazingly thankful for the amazing gift of lungs some family was able to give her. Her pregnancy came before she was ever at Duke in the transplant program. No doctors ever colored their opinion of transplant based on their choice to have my niece and it has nothing to do with why she isn't listed now. At all. Those same doctors who believed abortion would keep her alive to get a transplant where the same who fought to keep her alive through pregnancy and used their amazing gifts and talents to not only keep her alive to deliver but to also become well enough to get her first transplant. When you live and work so closesly with a medical team your entire adult life, there is going to be bumps, misunderstandings and frustration, but no doctor has ever "penalized" them for their choice to keep Gwyn and no family member has ever even considered or believed that she is in a holding pattern because of a pregnancy 6 years ago that delayed her ability to be listed.

[chaotic life]

Why is your sister seperated from her children since October? Why does anyone think this is in the best interest of her OR her children? Exactly what do any of you hope to accomplish by her being near Duke and the children in the Outer Banks with family for months and months and months? Tricia sees her children through Skype and this is great and dandy WHY? Your sister still has CF, and always will. It sucks to have CF. But there is no cure for it. Lungs are not a cure.

My information about her getting pregnant against medical advice comes from your sister's own words on her own blog back when she GOT pregnant because she quit trying to deliberately get pregnant but prayed God would give her a miracle and didn't try to prevent. Those were HER words, not mind. You can get anger about that all you want, but I'm sure you are aware there was teremendously mixed response in the CF community to that decision, as there always is when an adult CFer gets pregnant after her doctors tell her it's time to stop trying knowing it can cost her her life.

As for what it's like to walk death, go re-read. I never spoke directly for Tricia, I spoke from personal experience. Throughout the course of this thread, NO ONE has condemned your sister nor shown anything but respect and compassion for her. Your BIL is a jerk, he shows that to the world, and that is what this thread has been about from the get-go. That your sister is an amazing person, and people on this thread fear she is not being given the dignity she deserves does not make your BIL less of a jerk. As for whether he is different in person than online, perhaps if he doesn't want to be percieved as a jerk, he sould act less like on in his consant online postings. When someone acts like a jerk, those who observe it in someone who claims to be a Christian are most definitely going to comment on the hippocracy. You don't get a free pass for jerky behavior when you have a dying spouse. Sympathy for her does not excuse the hate that spews out of his mouth.

[chaotic life]

You go ahead and attack me. It distracts you from the gut-wrenching pain you are feeling right now.

Clearly, your family feels this is worth every sacrifice you are calling upon Tricia to make to fight for her life, for the promise of a few more years that may come and may not come. That others disagree with that stance does not make anyone attaking Tricia but it makes a lot of people heartbroken to see a woman not allowed to laugh, to smile, to hold her child just for a promise that may or may not happen. There are no attacks on Tricia in this thread. There is a lot of opinions that this path is niether dignifying nor compassionate to her or her children. You don't have to agree with us, but that doesn't mean we are attacking her nor that our opinions are invalid.

[tinylegs1]

Why is your sister seperated from her children since October? Why does anyone think this is in the best interest of her OR her children? Exactly what do any of you hope to accomplish by her being near Duke and the children in the Outer Banks with family for months and months and months? Tricia sees her children through Skype and this is great and dandy WHY? Your sister still has CF, and always will. It sucks to have CF. But there is no cure for it. Lungs are not a cure.

My information about her getting pregnant against medical advice comes from your sister's own words on her own blog back when she GOT pregnant because she quit trying to deliberately get pregnant but prayed God would give her a miracle and didn't try to prevent. Those were HER words, not mind. You can get anger about that all you want, but I'm sure you are aware there was teremendously mixed response in the CF community to that decision, as there always is when an adult CFer gets pregnant after her doctors tell her it's time to stop trying knowing it can cost her her life.

As for what it's like to walk death, go re-read. I never spoke directly for Tricia, I spoke from personal experience. Throughout the course of this thread, NO ONE has condemned your sister nor shown anything but respect and compassion for her. Your BIL is a jerk, he shows that to the world, and that is what this thread has been about from the get-go. That your sister is an amazing person, and people on this thread fear she is not being given the dignity she deserves does not make your BIL less of a jerk. As for whether he is different in person than online, perhaps if he doesn't want to be percieved as a jerk, he sould act less like on in his consant online postings. When someone acts like a jerk, those who observe it in someone who claims to be a Christian are most definitely going to comment on the hippocracy. You don't get a free pass for jerky behavior when you have a dying spouse. Sympathy for her does not excuse the hate that spews out of his mouth.

I'm not going to speak to decisions made by them, but you don't have an understanding of when and how they see their children. Period. You assume much, but are incorrect on many accounts. Again, I can personally speak to my own experience in saying I have spent an enormous time with them AS A COMPLETE FAMILY, together, since October. So this notion that they've been "separated" since October is completely false and misguided. Beyond that, I will not divulge how their personal business but to say "seeing her on skype/find and dandy" isn't remotely an accurate representation of how the family spends time together. You have not been given privilege to how every moment has been spent or the amount of time spent together, physically. No one owes you any kind of explanation and I will not create one for you.

Regardless of what the online "cf community" or other communities feels about her pregnancy, it was certainty not an example of non-compliance to transplant protocol as she wasn't even in a transplant program. Also, since none of us her doctors or nurses, and if you were you'd be bound by HIPPA laws, it is ridiculous to try to deduce how the pregnancy happened. For all anyone may know, maybe measures to not get pregnant FAILED, despite efforts. Are you willing to divulge publicly all the birth control measures you and your partner have taken or not taken every time you've had sex? Should we all be required to do that to "pass a test" of validity when it comes to doctors making decisions about our care?

And again, with respect, I disagree. You have specifically posted erroneous information specifically about where she has been staying and their foster child. I've taken no issue with what people say about his outspoken stands on politics. I've been quite clear on several occasions, he is who he is and is a big boy. He knows his way around the internet and takes stands on what he believes are important to him. If people want to address that, go for it. He puts it out there and people have a right to discuss it. I'm not fighting that battle for him, never have, never will.

I can say personally, as someone who has known him for about fifteen years, he is a guy who loves my sister and their children, would lay down his life for them in a moment and only wants what is best for them. I have zero issues with how he treats my sisters and kids or anyone in his and our family. He is outspoken, conservative and blunt. But he is also a loving husband who has spent every day of his married life being a decent, loving husband and caregiver to a very sick person.

I will, however, every time, stand for integrity and truth. And your posts about who their foster child even is was wrong. Your posts about her laying in a hospital were wrong. You can distract, change topic, but your credibility on the issue is somewhat weak seeing as your premises some fundamentals of HER situation aren't even represented accurately. It speaks volumes to me that you won't even address that. Is it possible that since you don't even know who their foster child is or where she is living that you may be wrong in how much time they spend with said children? Or how they spend that time?

Continuing to argue about whether she should or shouldn't have gotten an abortion are ridiculous as are arguments based on what a "cf community" believes. Her pregnancy didn't cause her lungs to fail the first time nor did it the second time. Her pregnancy didn't put her in jeopardy with any of her medical team the first time she needed transplant, nor is it relevant now. It was made very clear publicly that while several doctors told them abortion would be in HER best interest, every doctor willingly used every talent they had to support their choice to carry it, without bias or prejudice and many of that same team is working with her now to get her over the obstacles towards listing, none of which have anything to do with compliance or a pregnancy 6 years ago.

[chaotic life]

Lastly, the assumptions that the medical team were less than respectful of her decision to carry the pregnancy don't come from ME. They come from NATE, who continues TO THIS DAY to misalign and speak derrogatorily of those SAME doctors YOU claim have always been so respectful and gentle with your sister. Really. Do YOU read your BIL's online stuff? Do YOU read his threats to go attack the doctors who handled your sister during her pregnancy? Do YOU see his pattern of nasty jabs at the doctors he claims 'wanted Gwen dead'? Because frankly, what YOU are saying about how the situation was handled is a complete 180 from what NATE says happened. So, whose truth is the real truth??????

Were the doctors gentle and respectful and only suggested abortion because they were thinking in Tricia's best interest? Or, where they AS NATE claims aggressive and vile and unforgivable in their writing his wife and child off? It can't be both, and it's not MY words that make that claim but your BIL.

Most here have ALWAYS assumed that the truth is that the doctors were respectful and supportive. Nate claims otherwise. NATE SAYS IT IN TWITTER ON A REGULAR BASIS, not I. So, don't assign to me what comes from your own BIL.

[tinylegs1]

You go ahead and attack me. It distracts you from the gut-wrenching pain you are feeling right now.

Clearly, your family feels this is worth every sacrifice you are calling upon Tricia to make to fight for her life, for the promise of a few more years that may come and may not come. That others disagree with that stance does not make anyone attaking Tricia but it makes a lot of people heartbroken to see a woman not allowed to laugh, to smile, to hold her child just for a promise that may or may not happen. There are no attacks on Tricia in this thread. There is a lot of opinions that this path is niether dignifying nor compassionate to her or her children. You don't have to agree with us, but that doesn't mean we are attacking her nor that our opinions are invalid.

I'm not attacking. Perhaps my tone is being read well. I apologize. Nor am in in a state of gut-wrenching pain. Please don't project onto me based on what you think is happening. I literally can not understand your disconnect with what you think is happening and what is actual truth.

I can't wrap my brain around it. Where on earth are you getting that she can't smile, or laugh or hold her child? What on earth? Our family skypes regularly with Tricia. Not sure which Tricia you are referring to, but the one I know, my sister, just skyped with me several times the weekend with kiddos on her lap while our girls giggled together about going to kindergarten and watching princess movies and we laughed about their little personalities. This wasn't her once in a lifetime experience, it is a regular experience.

Truly, I'm trying to understand where you are getting this information:

*that she is living in a hospital

*that their current foster a preteen girl

*that she has been separated from kids since October

[lilwriter85]

I gotta say I am less than thrilled with the attack on CL. Not hand slapping, but she hasn't led the gang in speculation. And the post about not being relisted months ago, and it was true at that time. She had been refused to be relisted.

And yeah assholes are good people all the time. Is anyone denying you can be both? But at the end of the day, they might be good people but they express repugnant ideas on a daily basis publicly.

I'm also not happy about the attack on CL. I think we can be admit that we have been speculating on this thread about certain things. But we have admitted to it along the way. I have re-read a lot of this thread and we stated in our posts about having theories or wondering what was going on with Nate and Tricia. I agreed with another FJer's statement that Nate and Tricia's situation is atypical. It is and I think a lot of speculation has resulted from that. I do believe he is doing church work while away. Technology allows people to work out of their homes and other locations. Nate is very lucky that he can do stuff, people in similar situations don't have that option. I had to wonder about the church because church politics can be crazy. A friend of mine left a church due to church politics after conflict about the son of the one of the pastors taking a job at the church Some of Nate's tweets and IG posts are a bit vague at times and sometimes it seemed as if Tricia had been hospitalized. I think people got confused at times about whether she was hospitalized or not.

I also don't see how CL or any of us were lying or speculating about Tricia not being relisted, Nate was the one who tweeted that she wasn't relisted. He asked for prayer that she be relisted a few times. I follow one of Nate's friends Dana R Brown Ritter on twitter and she did tweet once about asking for prayer for Tricia to be relisted.

When it comes to CL's posts, she was giving insight to what could be possibly happening with Tricia. Her experiences with her son were difficult and I felt sad at times reading about her son. She also gave us insight into how CF community is.

[chaotic life]

Since you insist there is nothing to worry about or unusual, then allow me to snark.

I thought CF kills. Clearly, I was mistaken. I assumed that fighting for six months to get relisted for a second transplant indicates someone whose health is not strong enough to get a second set of lungs and fighting for six months is nearly unprecedented. I was wrong. I apologize.

We all assumed that since Tricia posted on FB about skyping with her children, since she IS checking in with her transplant team daily for PT she must be somewhere around Duke and not where they live in the Outer Banks, and since Nate posts about the children bieng with grandparents Tricia is therefore frequently seperated from her children. I see I was wrong. Tricia cuddles her children on her lap and giggles with them while she does her rigorous daily PT. My mistake. I won't assume that what Tricia and Nate do post online is truthful because clearly it was wrong.

I assumed that it sucks to have CF, that trying to get a second set of lungs is exceptionally difficult and that someone to the point of physically needing that transplant is suffering a lot. Obviously, I was wrong. It's just a minor procedure and everything is a great love fest.

We have nothing to be concerned about whether Tricia is being treated with dignity here on FJ. We have no reason to question Nate's posting spewing hate all over the place. Clearly, Tricia has been cured and this is simply part of the process of being cured from her CF.

Just do me one favor, share your secret with the rest of us. Our loved ones suffer and don't recieve a cure from their CF. In fact, they struggle, wear down and die. That's clearly not what is happening with Tricia, so we don't need to be concerned for her at all. However, the rest of us would love to know the secret so we don't have to face that reality either.

[lilwriter85]

Lastly, the assumptions that the medical team were less than respectful of her decision to carry the pregnancy don't come from ME. They come from NATE, who continues TO THIS DAY to misalign and speak derrogatorily of those SAME doctors YOU claim have always been so respectful and gentle with your sister. Really. Do YOU read your BIL's online stuff? Do YOU read his threats to go attack the doctors who handled your sister during her pregnancy? Do YOU see his pattern of nasty jabs at the doctors he claims 'wanted Gwen dead'? Because frankly, what YOU are saying about how the situation was handled is a complete 180 from what NATE says happened. So, whose truth is the real truth??????

Were the doctors gentle and respectful and only suggested abortion because they were thinking in Tricia's best interest? Or, where they AS NATE claims aggressive and vile and unforgivable in their writing his wife and child off? It can't be both, and it's not MY words that make that claim but your BIL.

Most here have ALWAYS assumed that the truth is that the doctors were respectful and supportive. Nate claims otherwise. NATE SAYS IT IN TWITTER ON A REGULAR BASIS, not I. So, don't assign to me what comes from your own BIL.

I was also going to point this stuff out. Nate has posted on twitter several times about how the doctors wanted them to abort the pregnancy. Around the Roe vs. Wade anniversary or sometime after that he tweeted something about wishing he could tell the doctors who recommended abortion, "Why?" and then he posted a video of him holding Gwyneth as part of his pro-life attitude. I feel that the doctors were acting in the best interest of Tricia's health. I believe there was an article in Ladies Home Journal or a similar magazine in which there was a negative attitude towards the doctors who had recommended termination.

[tinylegs1]

I also don't see how CL or any of us were lying or speculating about Tricia not being relisted, Nate was the one who tweeted that she wasn't relisted. He asked for prayer that she be relisted a few times. I follow one of Nate's friends Dana R Brown Ritter on twitter and she did tweet once about asking for prayer for Tricia to be relisted.

When it comes to CL's posts, she was giving insight to what could be possibly happening with Tricia. Her experiences with her son were difficult and I felt sad at times reading about her son. She also gave us insight into how CF community is.

There was absolutely speculation or belief that she isn't relisted because she was "non-compliant" due to pregnancy in earlier portions of this thread.

I realize the dynamic of this forum and this thread, I'm not going to argue upstream, but perhaps, in the future, work to base opinions on actual facts as opposed to speculation or colored opinions from a twitter account.

[flyawaystray]

Why isn't Trish being seen by a CF doctor, though? She still has CF. Her transplanted lungs don't have CF but the rest of her body does. And as far as I know, sticky, thick mucus is everywhere, but in a normal body, only a little mucus is produced.

Transplanted CF'ers still go to clinic and everything.

I don't think any of us are lying, either. We get all our info from Nate's twitter.

Why is it wrong for us to speculate? Last I heard, it's not illegal. This is a private forum, anyway. You're (tinylegs and libbyliv) the one invading our turf and going on rants and stuff.

It is natural to defend someone but there's a difference between being polite, and being rude about everything.

[LibbyLiv]

*****, have you and ****** sought professional help for the anger and bitterness you're dealing with because of Micah's death?

Just working on a theory of mine, not attacking.

[chaotic life]

TAKE MY NAME OFF YOUR THREAD NOW

You are in complete violation of the ToS for this board.

[LibbyLiv]

*******? I wonder what your CF friends who supported you so much during your son's struggle and death would think of you're attitude toward Nate and Tricia?

[lilwriter85]

Since you insist there is nothing to worry about or unusual, then allow me to snark.

I thought CF kills. Clearly, I was mistaken. I assumed that fighting for six months to get relisted for a second transplant indicates someone whose health is not strong enough to get a second set of lungs and fighting for six months is nearly unprecedented. I was wrong. I apologize.

We all assumed that since Tricia posted on FB about skyping with her children, since she IS checking in with her transplant team daily for PT she must be somewhere around Duke and not where they live in the Outer Banks, and since Nate posts about the children bieng with grandparents Tricia is therefore frequently seperated from her children. I see I was wrong. Tricia cuddles her children on her lap and giggles with them while she does her rigorous daily PT. My mistake. I won't assume that what Tricia and Nate do post online is truthful because clearly it was wrong.

I assumed that it sucks to have CF, that trying to get a second set of lungs is exceptionally difficult and that someone to the point of physically needing that transplant is suffering a lot. Obviously, I was wrong. It's just a minor procedure and everything is a great love fest.

We have nothing to be concerned about whether Tricia is being treated with dignity here on FJ. We have no reason to question Nate's posting spewing hate all over the place. Clearly, Tricia has been cured and this is simply part of the process of being cured from her CF.

Just do me one favor, share your secret with the rest of us. Our loved ones suffer and don't recieve a cure from their CF. In fact, they struggle, wear down and die. That's clearly not what is happening with Tricia, so we don't need to be concerned for her at all. However, the rest of us would love to know the secret so we don't have to face that reality either.

I will also add that Nate has tweeted and posted about skying with Gwen several times. He has also tweeted stuff like, "G will be here in a few hours" "G is coming to see us" "We had to bye to G". It seemed that based on those tweets someone was taking Gwyneth to see them. On Valentine's Day, he said that they were away from Gwyneth and they had flowers delivered to her preschool. It seemed as if they were away from her. Another thing to add is that several of Nate's IG photos are phtomapped to the Duke Medical Center and other places around Durham.

[LibbyLiv]

It sucks when people make this personal, doesn't it?

[flyawaystray]

Okay, wow. Totally not cool posting full names here.

Instead of being angry and stuff about all the "wrong" stuff we've posted, why don't you just say it in a nicer tone? I wonder if one of ya'll is actually Nate or something.

[LibbyLiv]

I wonder if, when you complained about your nurses on forums, was somebody from your hospital watching and taking notes and withholding the proper care from Micah because of it?

[tinylegs1]

Since you insist there is nothing to worry about or unusual, then allow me to snark.

I thought CF kills. Clearly, I was mistaken. I assumed that fighting for six months to get relisted for a second transplant indicates someone whose health is not strong enough to get a second set of lungs and fighting for six months is nearly unprecedented. I was wrong. I apologize.

We all assumed that since Tricia posted on FB about skyping with her children, since she IS checking in with her transplant team daily for PT she must be somewhere around Duke and not where they live in the Outer Banks, and since Nate posts about the children bieng with grandparents Tricia is therefore frequently seperated from her children. I see I was wrong. Tricia cuddles her children on her lap and giggles with them while she does her rigorous daily PT. My mistake. I won't assume that what Tricia and Nate do post online is truthful because clearly it was wrong.

I assumed that it sucks to have CF, that trying to get a second set of lungs is exceptionally difficult and that someone to the point of physically needing that transplant is suffering a lot. Obviously, I was wrong. It's just a minor procedure and everything is a great love fest.

We have nothing to be concerned about whether Tricia is being treated with dignity here on FJ. We have no reason to question Nate's posting spewing hate all over the place. Clearly, Tricia has been cured and this is simply part of the process of being cured from her CF.

Just do me one favor, share your secret with the rest of us. Our loved ones suffer and don't recieve a cure from their CF. In fact, they struggle, wear down and die. That's clearly not what is happening with Tricia, so we don't need to be concerned for her at all. However, the rest of us would love to know the secret so we don't have to face that reality either.

Snark away. I'm a big girl. You are very misdirected, but by all means, share your thoughts.

My sister is most definitely in the fight for her life. She faces everyday like most people who are fighting their life do. With hope, determination and as much positive energy as she can muster.

No one in our family is naive to the fact that she is dying of terminal illness. We all deal with it differently, but no one is blind to what is going on. You have no reason to "know me" but anyone who does would fall off a seat laughing by the notion that all I see is giggles and snuggles and pretty ponies and such.

The beauty of my sister is despite that, she smiles, laughs, spends time with her children as much as possible and continues to cast the light away from herself onto others, as she has since the day she joined our family. I have hope for her. I believe her team is fighting for her. I also know that none of us knows what tomorrow or next week holds, the same has been true since this began. We hope. We believe in the power of prayer. We support. We love. We screw up sometimes. We are people. Shrug. No big secret there.

I love my sister with a fierce devotion. My heart breaks to see her suffer, but there is always hope. Whether that hope for her is in more time here on earth with another transplant or hope that her suffering will end and we move on without her knowing she is whole and healed in heaven.

But there are some assumptions you hold that just aren't true and I'm not understanding them because they seem to color so much of what you are saying.

[chaotic life]

Oh no, you aren't making a personal attack AT ALL, are you?

Removed for confusing posters and who was actually attacking me. So totally DID NOT mean to cause harm to someone not acting so vile.

[LibbyLiv]

Okay, wow. Totally not cool posting full names here.

Instead of being angry and stuff about all the "wrong" stuff we've posted, why don't you just say it in a nicer tone? I wonder if one of ya'll is actually Nate or something.

That would be convenient, wouldn't it? But of course, as ***** stated earlier, Nate is not involved with the CF community, so he wouldn't be aware of the information I've posted above.

As I stated before, I don't like to see people I know hurt, especially by those who know better. I'm sure I'll eventually get booted off of this forum, and what I've written here will be deleted, but it doesn't change the fact that what you all are doing here to fuel hatred and bitterness toward Nate and Tricia is wrong.

[chaotic life]

Libbyliv, you are pathetic and clearly fail on the concept of being a decent human being.

[tinylegs1]

I'm not going to engage in a personal attack and have no knowledge of any posters names or circumstances beyond this thread. The posts using personal details are unclassy and unnecessarily unkind.

As to post-transplant protocol, that is the norm. Once CF lungs are transplanted out of the body, the primary care transfers to transplant doctors and general pulmonologists. Other issues related to CF are handled by specific teams like endocronology, nephrologly, ect. I can attest to the fact, and it isn't secret, that Tricia hasn't seen a lung/cf doctor since she was transplanted because her lungs no longer have the CF dna or disease. That, I imagine, is quite standard protocol in any program. CF clinics are generally teams of doctors including all these, but once one doesn't have a CF lungs they no longer see a CF-centric team.

[lilwriter85]

Okay, wow. Totally not cool posting full names here.

Instead of being angry and stuff about all the "wrong" stuff we've posted, why don't you just say it in a nicer tone? I wonder if one of ya'll is actually Nate or something.

I agree, posting full names of members isn't cool. I know happy_atheist tries to check the threads every few hours. Hopefully, she will edited those posts soon. Maybe Buzzard or meda can mod on stuff.

[flyawaystray]

FWIW, I never had a bad picture of Trish, although I do wonder why as a CF'er, she thought getting pregnant was a good idea. All the pregnant CF'ers I know have suffered a lot because pregnancy takes a HUGE toll on the body and they've all had sharp declines in their PFT's.

One recently died. The other has lost 20 percent lung function after having her baby. Sure, CF'ers experience declines all the time, but these declines have only happened after getting pregnant and delivering their babies. There IS a correlation.

If I had CF, I would never, ever, ever get pregnant. It's not worth the risks.

The only one I dislike here is Nate, not Trish. Nate is, imo, an ass hat (based on his online persona, aka his Twitter, have you read it?)