Wednesday, November 28, 2012

November 28 Update

I have taken most of the blog offline temporarily.  I am hoping to restore the blog in the near future, and will definitely do so before a transplant surgery takes place.

In the meantime, we deeply appreciate your continued prayers for Tricia.  You are welcome to follow me on Twitter if you want to continue to receive updates.  CLICK HERE for my Twitter page.  Thank you.

Nate

Monday, November 26, 2012

#PrayForTricia

We need your prayers tomorrow (Tuesday) from 7-10am.  Tricia is still inactive on the list.  We believe that she has done everything that has been asked of her and that the issues that caused her team to deactivate her have been resolved.  Tricia's breathing is becoming more difficult, and we know that her window of opportunity for a transplant is getting smaller each day.

Tricia's transplant team meets every Tuesday morning to discuss all of their patients.  PLEASE, pray that they will discuss Tricia and decide to reactivate her on the list.  If you would pray anytime tomorrow, but especially between 7-10am, we would greatly appreciate it.  We would also appreciate it if you would invite others to pray for Tricia as well.  Use the hashtag #PrayForTricia and link to the blog if you can.  Thank you in advance.

Nate

Tuesday, November 13, 2012

Deactivated

Tricia was deactivated today because she has been having some issues with her stomach for about a week.  The pain became so severe that we ended up in the ER late Sunday night.  We have no idea what the problem is, and her team is running a bunch of tests this week to try and identify the problem.

Deactivation means that she is still on the list, but they will skip her name if lungs become available.  Reactivation is very simple, but they have to identify and fix the problem before they'll reactivate her.  As I explained in my last post, it is imperative that she gain as much weight a possible...obviously, if she's having stomach pain, it's going to affect her ability to take in calories.

PLEASE, pray that her team will be able to take care of this issue as quickly as possible.  Thank you.

Nate

Friday, November 9, 2012

LISTED!!!

Tricia was listed and activated late yesterday afternoon.  We are incredibly thankful.  It appeared for a while that it might not happen...not everyone is offered a second double lung transplant, so we consider this a huge blessing.

Here are some details and thing you can be praying for:

> While the success rate of a first double lung transplant for CFers is well over 90%, a second is typically much more difficult.  As Tricia's surgeon explained to us this week, "not ten times more difficult, more like 100 times."  This isn't true for everyone...we have one friend who tells us her second TX was much easier than her first...but, we are preparing ourselves for a long recovery.  There are bigger risks, like bleeding, clotting, infection, and considering Tricia's immune system is still shot because of the CAMPATH, she is at an even greater risk than most.  We've been told, and we know from watching the experience of friends who have gone before Tricia, that Tricia could be in the hospital for several weeks or months as she recovers.

> Unlike her first transplant, when we were told that there was a less than 1% chance of finding her a match, she should be a much easier match this time around.  The antibodies that were in her system due to blood transfusions and being pregnant with Gwyneth are long gone, which creates a much larger donor pool for her.  This is a blessing.  However, Duke is more stringent that they were 5 years ago, and because her blood type and antibodies is easier to match, they will be looking for the best set of lungs possible.
Five years ago, Tricia was at the top of the list at Duke and in this region, which meant that she was first in line for any set of lungs that were a match.  This time around, although we're not sure where she is on the list, we know she's not at the top.  The average wait on the list at Duke is around two weeks, and considering she was on the list for six weeks the last time, we are encouraged that she will not wait long.

> Her TX team had a difficult time making a decision to put Tricia on the list.  She is borderline at best with her weight and strength.  Ideally, we would love for her to gain about ten more pounds and be able to spend more time at physical therapy without becoming fatigued.  It is incredibly important that she be as heavy and strong as possible going into surgery because she will lose at least ten pounds immediately after surgery.  There is the possibility that she could be taken off the list if she were to become sick or lose weight.  We are incredibly thankful for her team for making the decision to get her on the list.

> We know that Tricia will only get worse from here out.  The rejection has caused irreversible damage to her lungs, and she says it feels like every day it gets a little harder to breathe.  She is on O2 24/7, about 1 liter at rest and 4-6 liters when active.  Her situation is much different than five years ago when she was on a ventilator in the hospital and unable to move from her bed without complete assistance.  In many ways she is not as sick as she was then, but in some ways she is more sick. She is dealing with several related issues as well like high blood sugars, high blood pressure, and congestion in her lungs.  She is very close to dying...the slightest cold or infection will probably be deadly and, even without those factors she is not going to last much longer with her lungs as they are.

We continue to trust God completely.  Some things that took place this past week which I can't share with you have proved to us once again that He is the only One Who knows exactly what will happen with Tricia.  We don't anticipate anything at this point except that God is in control and will continue to do what is best for Tricia.  Humanly speaking, we hope this means new lungs and an extended life, and we understand that the medical odds are against us again.

Thank you for your prayers.  Let me know if you have any questions.

Nate

Thursday, November 1, 2012

November 1 Update

Tricia has had a few rough weeks.  Her breathing is continuing to become more difficult.  She had had a consistent low grade fever.  Yesterday she had her portacath replaced because it may have been infected, and sure enough she woke up today without a fever.  Her lung infection remains but doesn't seem to be getting any worse.

Her doctors explained to us yesterday that they want her to add a few more pounds and continue to build her strength up before listing her for a transplant.  She is getting nearly 100% of her calories from her feeding tube now.  Her docs emphasize how critical a position Tricia is in...how close to dying she is right now.  We continue to covet your prayers.

Nate

Saturday, October 27, 2012

Huffington Post Live

I participated in an online conversation about Cystic Fibrosis last night.  Check it out.

Wednesday, October 24, 2012

Pray for Tricia

A friend made this for us and it is being shared by hundreds of people on Facebook.  If you'd like an easy way to ask others to pray for Tricia, feel free to download and then share as well...and feel free to point people to the blog.

Nate

Friday, October 19, 2012

Discharged

After over a week in the hospital, Tricia was discharged on Wednesday.  She began her physical therapy at Duke yesterday.  She will go every weekday for about four hours to help strengthen her body in preparation to be placed on the transplant list.

I did not realize how sick Tricia has become until she got "home" on Wednesday.  Her breathing is incredibly laborious.  I was up most of that night in bed listening to her breathe...the bed literally shakes with each breath because she puts so much effort into it.  It reminds me of this exact same time five years ago when she was pregnant with Gwyneth and I would wake up several times a night just to make sure she was still breathing.

I am very concerned for her.  This has all come on so quickly, and I know it has her really worried that she won't be able to be strong enough to get on the transplant list.

We are in Durham now, Tricia is full time and I'll be traveling back home on the weekends whenever possible.  This was much easier the first time when we did not have children.  We are thankful for our family and friends who are helping us.

Please continue praying for Tricia, that she will be strong and healthy enough to be listed as soon as possible.  Please pray for our children, Gwyneth and our foster child.

Nate

Thursday, October 11, 2012

Thursday Night Update

Tricia is still feeling the same.  Infection is still there, she is on O2 as needed.  She had a very simple procedure today to fix her portacath because it wasn't able to draw blood.  She is having another simple procedure tomorrow to change her feeding tube from a G tube to a G-J tube.

If all goes well over the weekend, she will be discharge early next week and will immediately begin physical therapy at Duke to prepare for a transplant.  From what we've been told, she is now in the window, but needs to build her strength up to prepare for surgery.  I'll refer you to This Post from 2008 for a description of how the whole transplant process works at Duke.

You might remember from her first transplant that she was a very hard match because of the antibodies in her blood. We've been told this time that, because her antibodies have changed, she should be a much easier match. But, she probably won't be at the top of the list like she was before, so there is no telling when the call might come once she's on the list.

Thank you for your continued prayer.

Nate 

Monday, October 8, 2012

Need Your Prayers

We have appts on Wednesday, but we are going a day early because Tricia is not doing well.  The past two weeks, she ha gone downhill fast.  We need your prayers.  If she is not yet at the point of being listed she is quickly approaching it, and if she does not get rid of this infection soon, the window might close before she is ready.  Thank you.

Nate

Sunday, October 7, 2012

Home Again

I brought Tricia home on Friday, but she is not doing any better.  Her medical team did what they could for her, put her on some different meds.  The more time she spends in the hospital the more likely she is to pick something else up that is detrimental to her health.  She is not currently on O2, but we think she will be soon.  We go back to Duke this week, and wouldn't be surprised if they either keep her in the hospital or tell us that she is ready for transplant.

Nate

Monday, October 1, 2012

Difficulty Breathing

Tricia is having more difficulty breathing this week.  She is heading to Duke tomorrow to be admitted.  Please pray that her medical team will be able to get this infection out of her lungs ASAP.

Nate

Thursday, September 27, 2012

Lung Infection

Tricia had a sinus infection last week which is now in her lungs.  She has been on antibiotics since the beginning of the week, but she woke up this morning with a fever for the first time.  The CAMPATH she received a few months ago seems to have slowed or stopped the progression of the rejection, but the damage has been done, and she still has no immune system, so this lung infection could be very dangerous for her.

It has been a very rough year for Tricia so far.  This time last year she weighed nearly 50 pounds more than she weighs today and was feeling as healthy as she had in many years.  Her weight has not been as low as it is today since she was still in grade school, and her breathing numbers are approaching what they were before her transplant. 

We have been back and forth to Duke about a dozen times since the end of the spring, and we are both feeling the effects of spending all of our "free time" on the road and in the hospital.  So far, Tricia has not needed O2, but with the winter approaching that may change soon.  She had a procedure to place a feeding tube (her third in her life, but first since her transplant) last week which she is utilizing at night while she sleeps for some extra calories.

Her medical team tells us that, as long as she remains "stable" she will not need to be placed on the transplant list, but in the meantime, she is doing as much as she can with testing and physical therapy to be prepared when the time comes to be listed.

Needless to say, we appreciate your prayers right now.

Nate

Friday, September 14, 2012

Friday, August 31, 2012

Mauli Ola Foundation

There is a big surf contest this weekend on our beach.  The charity sponsor for this event is the Mauli Ola Foundation.  Tricia and I first heard about Mauli Ola from our dear friend Emily Haager...you might remember me posting a few photos of us with Emily from a several years back whenever her family would vacation here from California.

We again heard about Mauli Ola today from another CF family (the Whiddons) who have become friends of ours recently...they told us that some of the surfers and MMA athletes who work with this organization were in town for the event this weekend.  We found out that they were going to be at one of our favorite local restaurants tonight, so we took the kids and met our friends for dinner.  The Whiddons introduced us to Kala Alexander and Nissen Osterneck.  They were both super nice...Kala remembered all of our names, and they both signed autographs for the kids and talked with Tricia a while about her CF.  We're hoping to hang out with them tomorrow during the contest, maybe even do a little surfing with them if the waves are up.


 Make sure you check out this video and see what Mauli Ola is doing for kids with CF!  And, see our friend Emily, who passed away a few years ago, around the 1:27 mark.


Saturday, August 11, 2012

Activation Successful!

Just a quick not to tell you that Gwyneth's cochlear implant activation was successful!  It will take some time for her to get used to this new device on her head, and probably a few months if not more before we begin to see her speech improve because of her new hearing.  We'll return a few times over the next several months to have the audiologists adjust the settings until they get it exactly right for her needs.

If you want to learn more about the exact implant system Gwyneth has, you can read about the Cochlear Nucleus System here.

Gwyneth's last photo pre-activation!

Gwyneth's new hearing!

Gwyneth's new friend, a koala with implants just like hers!

Highlight of our trip...Gwyneth bumped into a North Carolina hero in the lobby at Duke...do you know who this is?

Nate

Tuesday, August 7, 2012

Cochlear Implant Activation Tomorrow!

We are so excited about Gwyneth's activation tomorrow!  We have no idea how she will react...she has enough hearing in her left ear that we don't expect it to be too dramatic.  We know that kids her age often have a difficult time adjusting, and considering she has had almost no hearing in her right ear for at least a few years, we are anticipating she might not be too happy with it at first.

We'll let you know how it goes!

Nate

Saturday, July 21, 2012

Cochlear Implant Surgery Report

Warning...a photo with blood below...

Gwyneth's surgery went very well.  Took about 3 hours, and before they woke her up, they tested the device and took an x-ray to make sure it was positioned and working correctly.  It was an outpatient surgery, so we were at our hotel no more than two hours after the surgery ended.


Gwyneth always wakes up from anesthesia very grumpy (we've been told some people react this way).  She remained grumpy until she fell to sleep late that night.  She was feeling a little better on Friday morning.


Tricia spent Friday morning at Duke beginning the transplant evaluation process.  And, we were back home by 3:30 that day.  By bedtime last night, we had weened Gwyneth off the heavy pain meds and she was showing signs of "normalcy".  This morning, Gwyneth woke up feeling much better, and we were able to take her bandage off.  By bedtime tonight, she was full of energy and laughter...amazing how quickly she recovers.


We return next week for a post-op appointment to make sure everything is healing well.  In 3-4 weeks, we return again to activate the cochlear implant and run some tests to get it set up to best help her.  We are very excited!  Thank you for your prayers!

Nate

Thursday, July 19, 2012

Wednesday, July 18, 2012

Cochlear Implant Surgery

After about a year of research and discussion and prayer, we have decided to move forward with a cochlear implant surgery for Gwyneth.  While she only has moderate hearing loss in her left ear, she has all but complete hearing loss in her right ear.  Because of her hearing loss, her speech is very delayed, and only those who spend a great deal of time with her are able to understand more than a few of her words.

Gwyneth will receive an implant only in her right ear and will continue to use her hearing aid in her left ear.  The surgery is schedule for tomorrow, July 19, and about a month later we will return to the hospital to have the implant "activated".



Nate

Tuesday, July 17, 2012

Fundraiser

Some amazing friends approached me last week to inform me that they have organized a fundraiser to help with Tricia's medical bills. Such amazing friends we have!  The information is below in case you would like to attend. You can also find out more by checking the Facebook Event Page.

Nate

Monday, July 16, 2012

Re-Transplant

We got word a few weeks ago that Tricia's medical team is moving forward with a plan to get Tricia back on the transplant list for a second double lung transplant.  We are waiting for the word from her team to know what the timeline is, so we really don't have much to tell you other than that.  We are still praying that the CAMPATH will work and reverse this rejection, and would appreciate your continued prayers about this as well.

Nate

Friday, July 13, 2012

July 13 Update

Nothing much new to share with you.  Tricia is feeling about the same, about every other day is a "good" or "bad" day.  On the good days, she is able to get out of the house and spend some time with friends and family, on the bad days she spends a lot of time in bed.  Our friends and family have been a huge help, spending time with the kids so I can keep as "normal" a work schedule as possible, providing meals and just spending time with Tricia.

We are blessed.

Nate

Tuesday, July 3, 2012

Bad Report

We were back at Duke yesterday, and the report was not good.  If the CAMPATH is working, her Pulmonary Function Tests should be showing improvement and her weight should be stabilized if not increasing.  But, her PFTs and weight have both dropped since our last visit a few weeks ago.  In addition, she has developed a sinus infection, which will be incredibly dangerous if it is not dealt with quickly.

Tricia needs things to turn around very soon and very quickly.

Nate

Friday, June 22, 2012

Friday Update from Tricia

Feeling at my weakest now. But I need to be reminded of the grace in my life & of God's goodness. Thankful for this lesson from the Jesus Calling, "Thank Me for the very things that are troubling you. You are tempted to indulge in just a little complaining about My treatment of you. The best protection against this indulgence is thanksgiving. It is impossible to thank Me and curse Me at the same time...your thankful words, prayed in faith, will eventually make a difference in your heart. Thankfulness awakens you to My Presence, which overshadows all your problems."

Thursday, June 21, 2012

Day Five

We were told that often the effects of the CAMPATH do not present themselves until day 5-7.  Tricia felt great for the first four days after her treatment...better than she has felt in several weeks.  She woke up on day five with a lot of fatigue, the same on day six.

Recovery from CAMPATH is unpredictable.  Some people recover within about six weeks, while others take over a year to recover.  We are not sure if Tricia will feel fatigued every day like this until she recovers, or if she will have ups and downs.

Thank you for your continued prayer.

Nate

Saturday, June 16, 2012

CAMPATH Report

Tricia received her CAMPATH treatment on Friday.  We were at the hospital for most of the day.  She became sick about halfway through, so they slowed the med down a bit and she made it through the rest without any major problems.

We drove home that evening, and by the time we arrived home she was experiencing some flu-like symptoms, but by this morning was feeling much better.

We took it easy today, and she'll be doing the same for the next several days until we figure out how this is going to affect her.  Her medications have radically changed, including new meds and new doses of old meds.

Gwyneth and Tricia at the Duke Gardens on Sunday.
We would appreciate your prayer as I head back to work tomorrow and we learn how to balance things...this will be our first real week of summer with the kids out of school and all of us at home, so it should be interesting, especially if Tricia experiences any kind of fatigue.  Thankfully, we have amazing family to help us.

Nate

Thursday, June 14, 2012

CAMPATH Tomorrow

Hey friends.

Tricia has had two good days since being discharged, but we need your prayers for Tricia tomorrow as she begins the difficult CAMPATH treatment.

If you are on Twitter and/or Facebook, please use #prayersforpattysue on Twitter and Facebook on Friday at 11am EST. Post link to the blog as well if you can. cfhusband.blogspot.com/

Thank you!

Nate

Wednesday, June 13, 2012

Discharged

Tricia was discharged from the hospital yesterday afternoon.  She has been placed on several new meds to help maintain her "health" and to help rid her body of the C Diff.  As long as she is healthy enough, she will be receiving the CAMPATH this Friday morning around 11am at Duke.  We are staying with some awesome friends until then, and if everything goes well with the CAMPATH treatment, we will be home by Friday evening.

Specifically, please pray that the C Diff is gone by Friday and that there are no other infections in her body before or after.  Any infection could be life-threatening with the CAMPATH.

As it has been explained to us, CAMPATH is a type of chemotherapy that attacks the same cells that AIDS attacks, so being treated with CAMPATH is very similar to having AIDS.  Tricia's immune system will be shot for a long time, even up to a year, which means she will be a huge risk to become sick from any number of other illnesses.  She will be wearing a mask out in public and will be avoiding anywhere and anybody that could make her sick.  Also, CAMPATH can cause severe fatigue...this was Tricia's biggest issue with her cancer treatment 4 years ago.

The goal with the CAMPATH treatment is that the rejection will be stopped, that her PFT's will improve, and that she will be able to regain some of her lost body weight.  We have been told though, before things get better, they more than likely will get worse.

Our life is about to drastically change.  We would appreciate your prayers for Tricia's safety over the next several months.  The slightest infection or illness could quickly lead to very bad things.  Also, your prayers for me as I relearn how to balance my life around Tricia's health needs.  For our extended family as they provide us with support and help, especially in caring for Gwyneth.

Nate

Tuesday, June 12, 2012

Good Day

Tricia had a good day on Monday.  Tests showed that her CO2 is normal, which means she doesn't have to sleep with a CPap machine at night.  She also does not have a sinus infection, which she thought she had.  It was also thought that she might have ulcers in her esophagus, which she does not.

However, her doctors cannot decide yet how to treat her rejection.  She does have a GI bacteria called C Diff, which could cause some major issues if she receives any med that reduces her immune system.  They are all having a meeting this morning to make a decision, and we would appreciate prayers for wisdom.

Nate

Sunday, June 10, 2012

Rejection is Back

Tricia is back in the hospital, and the doctors say things look "very bad".  She has been having trouble breathing the past week, so much so that we had to cut our time with family short in NJ and fly her down to Duke on Saturday.  The doctors believe her rejection is back, in the form of something called BOS.  She is set to receive a medication called CAMPATH, which is a chemo drug that will wipe her immune system out for up to a year.  But, she has a sinus infection that must be cleared up before the CAMPATH can begin.

I drove the kids home on Saturday, and Gwyneth and I are packing the car right now to drive to Duke.  Tricia desperately needs your prayers.  Her PFTs are down in the 20's, which is just a little higher that when she received her transplant, and her weight is actually lower than her transplant weight.  She is in a very precarious situation.

Please, pass this along to anyone you know.  I will be blogging as much as possible, but if you'd like to receive more updates, you can also follow me on Twitter.

Thank you.

Nate

Thursday, April 12, 2012

GREAT NEWS!

Got a call this morning from Duke...Tricia's rejection is GONE! Thank you God! And, thank YOU for praying for Tricia!!!

She'll be tested again in a few weeks, but it appears she is out of the woods with this.

Nate

Tuesday, April 10, 2012

Duke Today - Retesting

At Duke today, testing again for rejection. PRAYING for GREAT NEWS!!!

Nate

Friday, April 6, 2012

(Bump) A Very "Good Friday"

This was originally posted on April 2, 2010.

Have you ever wondered why the church calls today “Good Friday”? What’s so “good” about the fact that the One who Christians acknowledge as their “Savior” died such a horrible and “unexpected” death?

As humans, isn’t it hard for us to see death as a good thing? Most of us will spend all of our lives living in fear of death…doing all we can to avoid death. Many of us try to eat right, exercise, and stay generally healthy so that we can live long lives…and the rest of us feel guilty about not eating right and exercising.

But, Jesus said that He came to the earth, to live for a short 33 years, to have a public ministry of just 3 years, and to die, all so that we might be able to live an abundant life. To our simple human brains, that doesn’t make a whole lot of sense. The idea that death can bring life is what we would call a “paradox”.

A paradox is a seemingly absurd or self-contradictory statement, idea, person or thing that is true or may be true. In other words, a paradox is something that is true even though it might not seem to make any sense to our human intellect.

For example, the statement, “This sentence if false” is a paradox. If the statement is true, then the statement is false. In which case, the statement is true, which means the statement is false...and so on for infinity.

Another paradox: “You can't get work without experience, but you can't get experience without work.” Somebody explain to me how exactly that’s supposed to play out.

How about this: “The customer is always right.” So, if two customers say that the other is wrong, both are right, and therefore, both are wrong that they are both right that they are both wrong that they are both right that they are both wrong, etc.

God is a God of paradox. For example, have you ever tried to think about the fact that God “Always has been”? For God, there never was a beginning. That’s a hard thing for us to wrap our minds around, considering we know without doubt that everything we experience as humans had a beginning at some point, even if we weren’t there to witness it.

Or, how about the idea of The Trinity – God is One and Three all at the same time. Even our best attempts as humans to explain this idea fall short. Maybe you’ve heard somebody use water to illustrate the Trinity of God…water can be a solid, liquid and gas. But, water cannot be all three of those things at the same time.

And, just as God often reveals Himself as a paradox, Jesus’ life on this earth was a paradox…listen to this:

JESUS had no servants, yet they called Him MASTER...
JESUS had no degree, yet they called Him TEACHER...
JESUS had no medicine, yet they called Him HEALER...
JESUS had no army, yet KINGS feared Him...
JESUS won no military battles, yet He CONQUERED the WORLD...
JESUS committed no crime, yet they CRUCIFIED Him...
JESUS was buried in a tomb, yet He LIVES TODAY...

It probably seems odd to most people outside of the church that Christians would gather together once a year to remember and celebrate the anniversary of Jesus’ death, but it’s because of this paradox, that Jesus’ death means life for you and I, that we have reason to celebrate. Death on a cross is a gruesome thing…bloody and painful and humiliating. Yet, there is a beauty in the death of Jesus, knowing that He willingly died because of His great love for us.

Maybe that still doesn’t make a whole lot of sense to you…so, let me share a short, personal story that might help illustrate why we call today “Good Friday”.

Two years ago today, on April 2, 2008, I woke up in a hospital room at Duke University Medical center in Durham, NC. I had slept there that night, just as I had many nights before those past few months, on the floor at the foot of my wife’s bed. Tricia was dying of Cystic Fibrosis and, at that point, had been bedridden at Duke for about three months.

A month earlier, Tricia had been placed on the double lung transplant list. A transplant, her doctors told us, was the only option Tricia had left. She was literally growing sicker and weaker every day, and the prognosis was that she would be dead by the end of that summer if her medical team could not find her a new pair of lungs. In fact, just the day before, on April 1, Tricia’s right lung had collapsed, which was a sign that her lungs were at the very end.

There were a few big factors that made finding a donor for Tricia very difficult:
1) Tricia’s blood type is very rare…so rare, in fact, that the doctors would later explain to us that there was less than a 1% chance of finding a donor that would be a good match for Tricia.
2) Lungs deteriorate more quickly than other donated organs while being moved from the donor to the recipient, so the window of time between the death of the donor and the actual transplant surgery would have to be extremely short. Unfortunately, transplanted organs are often moved thousands of miles from donor to recipient.
3) Because she had to have a double lung transplant, she could not have a living donor. Her donor had to be a deceased donor. Donating organs after your dead doesn’t hurt much (in case you’ve ever wondered), but, unfortunately, very few people make the decision to be an organ donor, so the “supply” of healthy lungs is very limited.

So, the chances that Tricia's medical team would locate a match and have the time to retrieve the lungs and perform the successful 9-hou surgery were incredibly small. Which is why, when we got the call that April 2nd morning that a match had been found and that Tricia would be going into surgery that evening, we were full of mixed emotions.

Knowing that a match had been found also meant knowing that somebody had died that day, probably unexpectedly and possibly tragically. It meant knowing that there was probably a mother, father, brother, sister, wife or husband, maybe even children who were experiencing a great loss, and others who were just being told the news of the death of their friend.

But, it also meant that somebody had made the decision during their life to become an organ donor…to offer the chance for Tricia to experience abundant life. So, not because of death, but because of life, we both prayed a prayer of thanksgiving for the donor and peace for the family AND we celebrated.

And, two years later, on this anniversary, we continue to remember the death of Tricia’s donor and the pain that this day might bring his or her family and friends...we pray for their peace and comfort today, and we continue to celebrate the abundant life that Tricia has been given.

So, tonight, at Nags Head Church, we’re also going to remember and celebrate, because we too know that Jesus’ death was meant to give us life, abundantly here on earth and for eternity. We will remember His death, thank His Father God for sacrificing His one and only Son for us, and celebrate our new life together.

Nate

Monday, April 2, 2012

Greatest Gift

Four years ago today, I received the greatest birthday gift ever...from a total stranger. We still do not know who Tricia's donor was, and we probably never will, but we will never stop being thankful for that person's gift, and we will never stop praying for that person's family.

The video below might be the second greatest birthday gift I've ever received.



Nate

Friday, March 30, 2012

Rejection

We received the very bad news at the end of last week that Tricia has grade 2 acute and chronic rejection. Just short of four years (April 2 is her fourth transplantiversary). As I've told you in the past, the two big killers for transplant recipients are infection and rejection. Most likely, the rejection is a direct result of this pneumonia/RSV infection she has been fighting for nearly two months now.

The horrible thing about rejection is that nobody knows a whole lot about it. Despite years of research, we still don't know exactly how, when and why rejection happens, which means fighting it is a bit of a guessing game.

Tricia has been put on some very strong meds and steroids to try and reverse the rejection. We would desperately appreciate your prayers right now. We are asking God for another miracle. If the rejection cannot be reversed, Tricia will be in very serious danger.

You can read more about this on Tricia's Blog.

Thank you,

Nate

Friday, March 23, 2012

Spot

A spot has been discovered on one of Tricia's lungs. It could be infection from the RSV and pneumonia, and it could be the return of the post transplant lymphoma. A pet scan last week was inconclusive. We will learn about the results of yesterday's biopsy sometime next week.

Tricia has been up and down in the past few weeks. Some days she's feeling good, others not so much. She has been on a home IV antibiotic for three weeks, and they've just changed her to another med for another few weeks.

Nate

Sunday, February 19, 2012

Tricia Update

Thank you all for your prayers! Tricia woke up Friday morning feeling a whole lot better. She finally had enough energy to get out of the house on her own. Her appetite also seems to have returned. The past two days have been more of the same, so we're hopeful that she's past the worst of it.

Nate

Thursday, February 16, 2012

Please Pray for Tricia

We are coming up on three weeks of Tricia being sick. She has not been sick for more than a few days since she was declared in remission from cancer. I refuse to worry, but it is frustrating, especially for Tricia.

Although she was discharged from the hospital last Wednesday, she was discharged with the diagnosis of RSV and (walking) pneumonia. Since coming home, she has no energy and has only left the house once and has spent almost all of her time in bed or on the couch enjoying time with our kids. She began complaining of having trouble breathing after coming home, and she has been sleeping most nights with a nasal cannula for O2. She has almost no appetite and has lost quite a bit of weight. She has had a fever off and on about every other day.

Her doctors are concerned for her, and we are scheduled to return to Duke next week unless they decide she needs to come earlier.

She is very frustrated and a little scared. It's difficult for somebody who has been through what she has been through and then to live life so well for the past few years to get sick like this again. It brings back a lot of bad memories and fears for her. And, CFers are notorious for their ability to know when something in their body (especially their lungs) is not working correctly even before the doctors can detect it.

We honestly expect that this will pass, but it is frustrating in the meantime. RSV and pneumonia are two things that take a long time to recover from for those with lung disease and a suppressed immune system. There are some very high risks that come with RSV and pneumonia, including greater lung infection and a specific type of lung rejection that is caused by RSV. Basically, Tricia is in a place where it could easily get better, or could easily get much worse.

I would appreciate your sincere prayers for Tricia.

Thanks,

Nate

Saturday, February 11, 2012

Friday, February 10, 2012

Questions about the Book

I'm fielding questions and suggestions about the CFHusband book on Facebook. Would love to get your input! Click Here!

Nate

Thursday, February 9, 2012

More Ladies' Home Journal Article

Here are a few photos I took from my phone of the magazine article. We found it in Walmart today, earlier than expected!



Nate

Wednesday, February 8, 2012

Finally! Ladies Home Journal Article

After over a year of waiting, the article about our story is finally being publish in Ladies' Home Journal. You can pick up your copy in stores next week, or read the article online Here!


We'd like to thank our friends, David and Tammy Molnar for the photos that appear in the article!

Nate

Coming Home Today!

Tricia is coming home from the hospital today! We have missed her! She is feeling much better. Thanks for your prayers!

Nate

Tuesday, February 7, 2012

CFHusband - The Book

I officially began writing the book yesterday, although I have been considering the thought for a few years. I've had way too many people encourage me to do so to completely ignore the idea, and it is a project that has definitely intrigued me.

Our story has been well documented and publicized thanks to the power of the internet. Thanks to a handful of friends and family using mostly word of mouth, emails and blog comments our story went “viral”. As of today, the blog has received over thirteen million (13,000,000) unique hits, including one single day that surpassed 100,000 hits.

I have been encouraged by many people, family and friends and total strangers to write a book about our story. If I’m going to take the time to put a book together, I want to produce something that people, from the avid CFHusband blog reader to the person who has never even heard of Cystic Fibrosis would consider purchasing and reading…and sharing with others. Which means, a book about our story should offer something, if not many things, that can not be experienced by reading the blog. Which, brings me to answering that question, “Why a book?”

Let’s face it, if the only thing I were to do with this book was to copy and paste my blog, I wouldn’t even bother to read the book myself for grammatical errors…I certainly wouldn’t expect anybody else to want to purchase a copy when they could read it for free online.

What I am really excited about with this book is that I have had over four years to process the events that took place in 2007 and 2008. I now have a new and different perspective on those events and have been able to filter our story through what has taken place since. If you wish, you can think of this book as a revised, second edition of the blog.

I've created This Facebook Page as a way to keep myself accountable to consistently work on this project. I'll be posting updates there concerning my progress, as well as some information about the book as that information is available.

Saturday, February 4, 2012

In The Hospital

Tricia is in the hospital.

On Tuesday she was diagnosed with RSV after a trip to our local ER. She had a fever and other symptoms. RSV is a common virus that is not dangerous for most adults. But, with her low immune system and weak lungs, Tricia is at a much higher risk for more severe problems. RSV could cause lung damage and has been known to bring on rejection, both of which could be deadly for Tricia.

We arrived at Duke yesterday and she began her treatment last night. She is placed in a "tent" for 6 hours while she is sleeping and given an inhaled medication, every night for five nights. She is on contact isolation, which means she is not allowed out of her room, and visitors must wear masks and gloves and gowns. She should be discharged on Wednesday if everything goes well.

I am driving home today to get back to Gwyneth and our foster child and work. Tricia will be lonely and is frustrated to be in the hospital after being so healthy for so long. I know it would make her smile to receive an ecard from anybody who would like to encourage her. If you would like to send her an ecard, go to This Link and type "Patricia Lawrenson" for her Name and "N/A" for her Room Number.

Thanks!

Nate

Wednesday, January 18, 2012

(Repost) Our Choice

The following was originally posted on January 20, 2008, less than two weeks after Gwyneth was born and just a few days after Tricia woke from her coma. I thought that today was a good day to repost it. I've changed a few dates so that they are accurate for today.

For all of her life, Tricia has been praying a very specific prayer, that God would use her life with CF to do something amazing and extraordinary. And, for the past few years, she has added a second specific prayer. Until recently, this second prayer was a secret from all but a few people...it was even a secret from me.

But, first, let me give you a little background about us.

Tricia and I met about 11 1/2 years ago one Sunday morning at our church (I promise I'll give you the whole story another time, 'cause it's good). It was love at first site for me, and we began dating almost a year later. I was (and still am) Tricia's first and only boyfriend.

I knew that this was the girl for me, and very early on in our relationship I explained to Tricia and her parents that I fully (or at least as fully as I could at that point) understood Tricia's disease and what that might mean for my future. While we wouldn't be married for another three years, I told them all that I was committing, then and there to becoming the caretaker that Tricia would need. I promised that I was looking to marry Tricia, and that if I had any doubts up to that point, I would have already bailed because I knew Tricia didn't need the stress of a hurtful relationship on top of the hardships of her disease.

I was 20 and Tricia was 19.

Tricia was in good health while we were dating, with just a very slow descent. Even when we married, you would never have known she had a killer disease. But, we knew that there were no guarantees, and that even a simple cold could literally become deadly for her in the matter of a few days. Talk of marriage came early, and we soon decided that we wanted to take advantage of every minute of our lives together. On August 24, 2003, we became engaged. We were married less than a year later on June 27, 2004.

The day after our honeymoon ended, I began my first full-time job (as worship leader at Westwood Hill Baptist Church) in VA Beach. Neither of us had finished college at that point, because, again, we wanted to make the most of the time we had. Some people thought we were foolish, and it wasn't an easy decision, but looking back, we know it was exactly what God wanted for us.

We knew we wanted to start a family, but we also wanted to have at least a little time all to ourselves, so, we gave ourselves about a year to just enjoy being two. That first year of marriage was full of fun and excitingly new things for us.

God did not make a woman more perfectly fit to be a mother than Tricia, and, although being a father scared me (and still does), I've always known that it was what I wanted as well. For nearly two years, we tried to get pregnant.

I know that this is not a long time compared to many stories I've heard, but, because of Tricia's declining health during that time, we knew our window of opportunity was not very large. And, because of Tricia's CF, as well as some other issues, we knew that conception was a small chance and pregnancy a huge risk for the two of us.

All during that time, while Tricia's CF doctors informed us of the risks, they were also very supportive of our decisions. In the spring of this past year (2007), however, they finally told us that a pregnancy would be more risk than we were willing to take. So, although it was very difficult, especially for Tricia, we halted our pregnancy plans.

At that same time, Tricia's docs also advised us to consider being evaluated for the double lung transplant that could save Tricia's life. The 5-day evaluation process took place at the end of June (2007) with good results (meaning Tricia was a candidate), and we began making our plans to transition to living part-time (and later full-time) in Durham.

All this time...all the while that we'd been married, Tricia had been praying that secret prayer. She knew, that what she was praying for would take something that beat the odds, that defied science and that could only be explained by God.

Tricia was praying for a "miracle baby".

We decided that September 4 (2007) would be the day that we would officially make the transition to Durham and Duke to begin the physical therapy that Tricia would need before being placed on the Transplant list. We moved out of the house we'd been renting for two years (in Nags Head, NC) and placed most of our belongings into storage while taking our bedroom furniture, medical supplies, clothes and a few other things into a spare bedroom at my parents house (where we planned on staying when we cam home on the weekends).

September 3 was a Sunday, and that night, as our church gathered together for a service, I took the stage to share the new and plans with many of our closest friends and family. Tricia stayed home because she was not feeling well (not unusual). Little did I know that, literally as I was sharing our plans with the church, Tricia was finding out that God was about to take us on a huge detour.

When I arrived home that night, feeling a sense of relief from telling the church about our plans, Tricia met me at the door with, "I have something to tell you, and I'm not sure how you're going to react..." Of course, I'm thinking our dog had gotten run over by a car, or something crazy... She took me into the bathroom, showed me the pregnancy tests (I think she used three just to be sure) and told me that she was pregnant. God was giving Tricia her miracle.

The next day, when we arrived at Duke, we immediately set up appointments with the transplant doctor, the OBGYN and Tricia's CF docs. The transplant doctor's reaction is not something I want to repeat (it went something like "holy ......!"). He advised us that our best choice would be to terminate the pregnancy.

The OBGYN told us that she had never once recommended to any of her patients to terminate a pregnancy, but in Tricia's case, she was making the exception.

Tricia's CF doctors already knew exactly what our decision was going to be about keeping/terminating the baby, and other than a look of shock, they were very supportive (as was everyone else once we told them of our choice).

This Sunday morning, thousands of churches across our country are remembering National Sanctity of Human Life Day. (read My Dad's Blog for more about the history/purpose of this day)

In years past, I've taken part in considering what this day is all about, but it's always been just a passing thought. I'm sure there have been a few years when I didn't even really think about it at all.

But this day has now taken on such a completely different meaning. In the past, it has been about standing up for what my Christian world view tells me is right and against what is wrong. But, now I'm seeing those things as the smaller picture.

God is showing me, through the life of my wife and my daughter, that today is really about two things.

1) Sanctity of Human Life is about trusting God.

No matter what side we may fall on with the issue, abortion is not a belief. It is a choice that is birthed out of a belief. Our belief was that God wants what's best for lives, that it was God Who allowed this pregnancy to happen, and that it needs to be God who determines the final outcome. Because of our belief in God, our choice was easy.

For us, abortion was not about life or death, murder, right or wrong, etc. Our choice simply came down to whether or not we were seriously willing to trust God. And really, what else did we have to hang on to at that point? To abort would mean to turn our back on God...Tricia's chances of surviving the pregnancy were 50/50, Gwyneth's were even less, and the window of opportunity for the transplant seemed to have come and gone. But we knew, beyond a shadow of a doubt, that God was answering Tricia's prayer by giving us this opportunity.

2) Sanctity of Human Life is about making the most of our time with others.

If I have learned anything during the past few months, it is that my time with Tricia, and her time with me and others she loves is never a guaranteed thing. I have probably spent more time with Tricia in the past 5 months than I had the previous 3 years of our marriage, by her bedside nearly every moment.

I have seen my attitude and perspective change about certain things regarding my role as a care-giver. The things that used to make me cringe, I do with joy. The tasks that caused me to roll my eyes because I missed a few minutes of television show, or a few seconds of football game have become the things that I look forward to the most. My favorite part of the day now is getting into my Jeep and driving to the hospital, knowing that I have a full day of just being with or around Tricia and Gwyneth.

It would only take a few moments for me to easily become a childless widower. But, that's really how all of life is. We never know what the next second will bring. I hope to never look at life the same, never again choose to take my family and friends for granted, and never pass by another stranger without looking for an opportunity to be a blessing.

I am not perfect. In fact, I consider so many others in my own life to be much more spiritual and strong and loving than I am. All I know is that, the moment we made that choice to trust God, my entire life changed.

And, for me, that is what Sanctity of Human Life is really all about. Simply living life in pursuit of loving God and loving people does so much more to change hearts and minds and lives than any hellfire sermon, political personality, or picketing campaign will ever accomplish.

Tricia literally came within a few breaths of sacrificing everything to give Gwyneth life. If that had been the case, and even if that is still what happens, to know that we have trusted God with our choice will get me through today and tomorrow.

God is answering both of Tricia's life prayers, at the same time...He is doing something extraordinary with her life by giving her the miracle baby.

I pray that today, you will take time to consider that human life is sacred because it comes from God, spend time appreciating the life you've been given, and love on the people you find yourself with.



Thanks!

Nate

Monday, January 16, 2012

Sunday, January 8, 2012

Happy Birthday Gwyneth Rose!!!

Our Gwyneth Rose turns four today! So excited to celebrate with her! If I can find the pug toy, I'll take a photo for you.

Nate