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

[2xx1xy1JD]

cfhusband.blogspot.ca/

I'm not sure if anyone here follows this blog. They are devout Christians who make reference to their faith, but the main story is Trisha's struggle with cystic fibrosis. In 2007, her condition had deteriorated to the point that she was going to be placed on the list for a lung transplant - and then she found out that she was unexpectedly pregnant. Doctors informed her that both she and her unborn baby each had a 50% chance of dying if she continued the pregnancy. She chose to continue the pregnancy. The blog details how her health declined, and how she needed an emergency c-section at 24 weeks. The baby survived, although she has some health issues (hearing loss, some delays). A few months after the birth, Trisha got her double-lung transplant. She later had post-transplant lymphoma, a cancer caused by suppression of the immune system, but recovered after treatment. Other than that, though, she was doing well with the new lungs, looking fairly healthy and enjoying life with her family.

Now, it looks like Trisha is in rejection, which is a common post-transplant complication. Her husband, Nate, writes that the doctor was emphasizing "how close to dying she is". They've been through so much already, and managed to beat the odds before. I really hope she manages to pull through again, and not leave her little girl motherless.

I don't know if this would be considered a "fundie" blog. Like I said, they aren't shy about their faith, and they clearly felt that abortion was not an option because of that faith, but the activism on the blog is all about cystic fibrosis, organ donation, premature birth and lymphoma. I can appreciate that they aren't using the blog to declare that nobody ever has a reason to abort, but instead tell their own story without sugar-coating the truth (Nate was blogging all through this, documents Trisha declining health before the transplant, and had no way of knowing if either Trisha or the baby would survive. It's clear that they were both in critical condition.)

[mrs]

That is really sad. I'm sending prayers their way. I am happy the child survived. I hope the mother can overcome her current condition. :(

[Katiebug]

I've followed their blog since their daughter was born.

Gwyneth was pretty much their only chance at having a biological child. I believe they have been foster parents for a while, although when Tricia's condition deteriorated a few months ago they thought they'd have to give up the foster child. I'm glad for them that she has pulled through and done reasonably well, and unlike the Duggars they don't try to hide that their 24 week preemie has delays and permanent issues related to prematurity.

His Twitter account may make you see red. He's a rabid Republican and is much more vocal there about his political views than he is on the blog. Lots of anti-Obama ranting (and links to the same).

[RosyDaisy]

I don't care what their politics and religious beliefs are. My heart goes out to this family. Hopefully Tricia can beat the odds again.

[2xx1xy1JD]

I don't follow Twitter feeds. We discussed how the term "pro-life" gets manipulated and abused in some other threads. IMHO, this blog is genuinely pro-life, in the best sense of the word. Donating to cystic fibrosis research, to lymphoma research, to prematurity research and encouraging organ donation are all things with the power to save lives.

[Koala]

That's heartbreaking. I truly wish the best for Tricia and her family. I can't stand the thought of that little girl losing her mother

[lilwriter85]

I don't think I ever visited this blog. I have looked through it and my guess is they are conservative Christians maybe fundie lite. I think they are on the same conservative Christian spectrum that couples like Ben/Katie and Ian/Larissa are on. Looking through this blog is heart breaking especially because of the struggles that they have gone through. I give Nathan credit for being upfront about Gwyneth's struggles and I thought the picture of him holding his daughter after the cochlear implant surgery was very sweet. My heart goes out this family.

[lilwriter85]

I just came across this posting where Nate talks about how they were almost featured on CBN or the 700 Club. He dislikes Pat Robertson.

cfhusband.blogspot.com/2011/09/dear-pat-robertson.html

Dear Pat Robertson,

You remember that one time a few years ago when your Cristian Broadcasting Network (CBN) contacted me about running a story about our family? Do you remember that I decided not to allow you to run a story about us because I disagreed with many of the theology and values of CBN? Do you remember that I told you that I didn't want people to associate my beliefs and the beliefs of my family about God, sickness, family values, etc. with your beliefs? Remember how it was a tough decision, and I didn't really tell anybody about it then because I didn't want to look like I was being judgmental?

Well, right now, I'm incredibly thankful that God helped me make that decision, because it is painfully (and yes, I do mean that it pains me) obvious that the God and Bible you believe in are very different than the God and Bible I trust.

A question posed to you, Pat Robertson this week:

"I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore, and, as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he's started seeing another woman. He says that he should be allowed to see other people, because his wife as he knows her is gone...I'm not quite sure what to tell him. Please help."

Your, Pat Robertson's response:

"I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again...to make sure she has custodial care and somebody looking after her. If you respect that vow...you say until death do us part...this is a kind of death."

Pat, I am thankful that I know better than to listen to your words and "logic" about marriage and death. I am thankful that I know the Bible and the heart of God well enough to believe with everything I am that God can do amazingly beautiful things in a marriage even when one person is sick and on the brink of death.

Your response to this person comes from a heart that either does not know God's Word or refuses to trust His Word when it doesn't make sense to our sinful hearts and minds. I am disappointed but not surprised. I am a sinful man with an incredibly sinful heart, and I know that I allow my human brain to rebel against the commands and promises of God far too often as well. I know, looking around me, in my church and in the Church (universal) that we all allow Satan to trick us with human logic into rebelling against God's perfect plan.

But, I also know that marriage is sacred, that God hates divorce, and that those who honor their marriage vows despite the difficulties that come with age and poor health are being fully obedient to His Word. I have never once considered leaving my wife because of her illness, not because I am a "good" person, but because I know that God desires that I remain committed to my vows, and because I trust that He works all things together for good for those who love Him and are called according to His purposes.

I don't expect you or the person who asked you that question to ever read this, and I certainly don't expect that my words would ever change your heart or mind about this. But, I want the world to know that there is another way, that those who stay committed to their vows even in the difficult times can come through it with miracles and incredible blessings. The love I have for my wife today is beyond anything I ever experienced during the time we spent together before she became so sick.

Pat Robertson, I love you in Christ, but you are flat out wrong. I know this because the Bible tells me so. My wife would tell you the same thing.

Sincerely,

Nathan Lawrenson

I do think what Pat said was kind of fucked up. But Nate also needs to realize that some people in difficult situations involving illness or injury have divorced their spouses and sometimes it was difficult thing for them to do.

[fundiefan]

They are totally fundie. Nate and I 'got into it' once and he had the expected tantrum and stomped off.

While I have no problem with people making decisions for themselves, when they bring others into their choices they open themselves up for response. Nate didn't like my response.

They weren't unexpectedly pregnant either - they tried/never took steps to prevent. They worked for that little girl.

While it's sad that they are struggling so much again, and it looks like she may not make it, they made their choices. Against the advice of the doctors they rely on - they rely on that medical knowledge for every second of her life, but ignored it when it came to pregnancy. They picked and chose entirely.

That little girl has issues, although fortunately not as extreme as they could have been. Trisha is in rejection, which is not a surprise. Nate is going to be raising his daughter alone.

It's hard to not sound like a bitch - I've followed them since she was pregnant. I don't want to be judgmental, but I can't seem to find a way to be anything else.

I am sad for their daughter, I am sad for what they have to go through because of her health.

But, I also know that her health was second to their insistence on pro-creating. They didn't care enough about her health to protect it at any and all costs. They rely on the medical world to keep her alive - but relied on their god when she became pregnant.

Such a contradiction.

I don't want her to die. But, I can't be more sympathetic to them than to anyone else with life threatening health issues. And, I can't help but think they brought it on themselves.

I know two people who had lung transplants. One, a lung and heart transplant. Both prevent pregnancy at all costs because of the damage it will do. Both are more than a decade post-transplant. Yes, luck had something to do with it because rejection is always possible and often likely, but they have done everything possible to continue their lives and not take risks. They're not only grateful for their second chance at life, they worship it and take care of it and preserve it.

Pro - life - it applies to far more than conception being carried to birth.

[BelieveinScience]

They are totally fundie. Nate and I 'got into it' once and he had the expected tantrum and stomped off.

While I have no problem with people making decisions for themselves, when they bring others into their choices they open themselves up for response. Nate didn't like my response.

They weren't unexpectedly pregnant either - they tried/never took steps to prevent. They worked for that little girl.

While it's sad that they are struggling so much again, and it looks like she may not make it, they made their choices. Against the advice of the doctors they rely on - they rely on that medical knowledge for every second of her life, but ignored it when it came to pregnancy. They picked and chose entirely.

That little girl has issues, although fortunately not as extreme as they could have been. Trisha is in rejection, which is not a surprise. Nate is going to be raising his daughter alone.

It's hard to not sound like a bitch - I've followed them since she was pregnant. I don't want to be judgmental, but I can't seem to find a way to be anything else.

I am sad for their daughter, I am sad for what they have to go through because of her health.

But, I also know that her health was second to their insistence on pro-creating. They didn't care enough about her health to protect it at any and all costs. They rely on the medical world to keep her alive - but relied on their god when she became pregnant.

Such a contradiction.

I don't want her to die. But, I can't be more sympathetic to them than to anyone else with life threatening health issues. And, I can't help but think they brought it on themselves.

I know two people who had lung transplants. One, a lung and heart transplant. Both prevent pregnancy at all costs because of the damage it will do. Both are more than a decade post-transplant. Yes, luck had something to do with it because rejection is always possible and often likely, but they have done everything possible to continue their lives and not take risks. They're not only grateful for their second chance at life, they worship it and take care of it and preserve it.

Pro - life - it applies to far more than conception being carried to birth.

You said what I was thinking.

[fundiefan]

I don't follow Twitter feeds. We discussed how the term "pro-life" gets manipulated and abused in some other threads. IMHO, this blog is genuinely pro-life, in the best sense of the word. Donating to cystic fibrosis research, to lymphoma research, to prematurity research and encouraging organ donation are all things with the power to save lives.

Are they really pro-life? They put Tricia's life at risk to have their daughter. Tricia's life is so worthless that all the known risks were irrelevant in order for her to carry her fetus?

There is no guarantee things would have been different had she not carried her pregnancy, but really, what value did they place on the existing life in order to give birth?

Pro-life is pro-LIFE, all life. Having a child was given far more precedence than preserving the life that already existed; the life that was already fragile and needed the medical community to support.

Yes, they love their daughter. Yes, they are decent people and their motives aren't entirely twisted. But, I'll never believe they're truly pro-life when they flat out chose the life of the fetus over the life of the mother.

[chaotic life]

I've had an altercation with Nate as well. He adhamantly insists that all CFers are smarter, stronger, sweeter and kinder than everyone else. Well, that's a nice dream to live in, but having CF does NOT give you better genes in every other way, like a subset of the CF community likes to tell themselves and Nate is part of that subset. My attempt to point out that my son was violently Bipolar, profoundly Autistic and low IQ *with* CF got me called bitter and told he pitied me.

Honestly, I hate to be callous, but there is ONE reality about CF. It is a selfish disease. It ALWAYS wins and you ALWAYS die. Nate knew that when he married Tricia. Tricia has known that her entire life. When she got pregnant with Gwen, Nate *always* knew ultimately he would raise her alone. I swear I don't mean to be callous, but exactly how did he *think* this story was going to end?

DH's best friend died two weeks before Christmas and left her 12 year old daughter behind. NOTHING is fair about this disease.

I have some big feelings about getting a second set of lungs. There are too many others desperate for one extension on their clock, imo.

I do feel awful for all of them. I just walked this path this summer. Unlike Nate, I know Tricia and my son were alike in this battle, even if my son failed Nate's litmus test to be a "real" CFer.

[Flummoxed by fundies]

Terrible story, but jeez I can't understand the logic (or lack thereof) behind this deliberate drive to procreate with apparently little thought given to the possibility of a sick child, or the probability of a sick child growing up without a mother.

[fundiefan]

I've had an altercation with Nate as well. He adhamantly insists that all CFers are smarter, stronger, sweeter and kinder than everyone else. Well, that's a nice dream to live in, but having CF does NOT give you better genes in every other way, like a subset of the CF community likes to tell themselves and Nate is part of that subset. My attempt to point out that my son was violently Bipolar, profoundly Autistic and low IQ *with* CF got me called bitter and told he pitied me.

Honestly, I hate to be callous, but there is ONE reality about CF. It is a selfish disease. It ALWAYS wins and you ALWAYS die. Nate knew that when he married Tricia. Tricia has known that her entire life. When she got pregnant with Gwen, Nate *always* knew ultimately he would raise her alone. I swear I don't mean to be callous, but exactly how did he *think* this story was going to end?

DH's best friend died two weeks before Christmas and left her 12 year old daughter behind. NOTHING is fair about this disease.

I have some big feelings about getting a second set of lungs. There are too many others desperate for one extension on their clock, imo.

I do feel awful for all of them. I just walked this path this summer. Unlike Nate, I know Tricia and my son were alike in this battle, even if my son failed Nate's litmus test to be a "real" CFer.

I agree, completely. They got their miracle and a second one is, to me, beyond realistic and entirely selfish and full of entitlement. A second transplant, when you squandered the first? Sure, she gave birth to her child before the first transplant, but that put strain on her entire body so that her new lungs had to work that much harder. She was on the list for a transplant when she found out she was pregnant. They chose to delay the transplant and all the prep for it in order to continue the pregnancy. They chose to use up her body's resources. Now, they want prayers and blessings for another transplant? There are people waiting for transplant who have only one shot. How is it 'fair' to give a third shot at life to reckless people over the second chance of someone else?

Like you, I don't want to be callous. I debate myself every time the Lawrenson's are thought about and/or discussed. But...they treated her life with such carelessness, why should they get another shot over anyone else? Why should someone else who is a match for a set of lungs be denied for them?

I swear, I am not heartless or hateful. But Tricia relies on technology and medicine to survive, when it suits her. She took risks and got her daughter and her four years. There is nothing that makes her more special than someone else waiting for and needing a transplant. Her god gave her CF; her god determined her life. It is science and human beings that kept her and her daughter alive. There is a serious disconnect. Without the doctors and medicine and technology they rely so heavily on, their god would have taken Tricia a long, long time ago.

She is not owed anything for thwarting her god in the name of science - and her choices.

If there is a god, I will willingly allow him/her to strike me dead in retaliation for having little sympathy.

[Beeks]

I used to follow them but haven't now in some time. It's sad to hear she's doing so poorly, but surprising considering the nature of her illness and how long she has already survived.

Is she waiting for another set of lungs? How does that work?? She only had thisnset of lungs a few years, right?

[Flummoxed by fundies]

Forgive me for sounding harsh but don't their actions seem as if they are tempting(testing) God?

[fundiefan]

Forgive me for sounding harsh but don't their actions seem as if they are tempting(testing) God?

Yes. They're not trusting their god, they're saying they are special enough that their god will go against all he's done already and give them what they want.

They don't have much faith in their god when you look at how far they've pushed his will.

[Beeks]

I agree, completely. They got their miracle and a second one is, to me, beyond realistic and entirely selfish and full of entitlement. A second transplant, when you squandered the first? Sure, she gave birth to her child before the first transplant, but that put strain on her entire body so that her new lungs had to work that much harder. She was on the list for a transplant when she found out she was pregnant. They chose to delay the transplant and all the prep for it in order to continue the pregnancy. They chose to use up her body's resources. Now, they want prayers and blessings for another transplant? There are people waiting for transplant who have only one shot. How is it 'fair' to give a third shot at life to reckless people over the second chance of someone else?

Like you, I don't want to be callous. I debate myself every time the Lawrenson's are thought about and/or discussed. But...they treated her life with such carelessness, why should they get another shot over anyone else? Why should someone else who is a match for a set of lungs be denied for them?

I swear, I am not heartless or hateful. But Tricia relies on technology and medicine to survive, when it suits her. She took risks and got her daughter and her four years. There is nothing that makes her more special than someone else waiting for and needing a transplant. Her god gave her CF; her god determined her life. It is science and human beings that kept her and her daughter alive. There is a serious disconnect. Without the doctors and medicine and technology they rely so heavily on, their god would have taken Tricia a long, long time ago.

She is not owed anything for thwarting her god in the name of science - and her choices.

If there is a god, I will willingly allow him/her to strike me dead in retaliation for having little sympathy.

I don't think you sound callous or hateful at all - it seems compassionate to be thinking of the others who have only one shot at this.

Does anyone here know more about how transplant lists work? Will the fact that Trisha already had one transplant and has a terminal illness be "factored in" so to speak?

[mockingbird]

I don't think you sound callous or hateful at all - it seems compassionate to be thinking of the others who have only one shot at this.

Does anyone here know more about how transplant lists work? Will the fact that Trisha already had one transplant and has a terminal illness be "factored in" so to speak?

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.

[bekkah]

I know lung transplants have one of the highest rejection rates. They usually only last five years and I haven't clicked on to the website to find out how along they are post transplant.

The list is regional so it is dependent. I think it varies by region. Most organs are local. They do factor in terminal illnesses and things like that. The reason Dick Cheney got a heart is because it best fit his needs. You have to be similar in age and similar in size to receive certain organs. Source: http://www.organdonor.gov/about/orgando ... l#process6 They explain the process in much better detail then I can.

[Rowan]

I have no personal experience but from my understanding, yes it will factor. A large part will be the scarring issues from the first transplant which could make it harder for a second set to heal well and function as best they can.

[Minerva]

Isn't anything you need a lung transplant for considered a terminal illness, though?

[Beeks]

Isn't anything you need a lung transplant for considered a terminal illness, though?

Well, I assume some can actually be "cured" by a lung transplant. CF will kill you no matter what.

[Minerva]

Well, I assume some can actually be "cured" by a lung transplant. CF will kill you no matter what.

Right. I should have known that.

[treemom]

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.