HOME AT LAST!!!

We are so excited to tell you that we made it home just three days before the first day of school for our kids!  We are happy beyond words to be back in our house in time for the kids to start school!  We have been insanely busy trying to get our house back in order after being away for over ten months, but we are loving every minute of it!

Tricia continues to get stronger, although she is still having trouble putting on any weight.  She is getting her rehab in at a local gym.  We are returning to Duke about twice a month for checkups and other appts.  Tricia's latest bronch showed that her new lungs are continuing to improve.

Gwyneth is LOVING Kindergarten! She has been talking about it for what seems like forever, and she was so excited the first day.  She recognized a few friends the first day and has made several new friends.  We're very encouraged to see how much she is learning and growing already!

It's hard to imagine that we've been gone for ten months.  Our last memories of being home were from this time of year last year, so everything seems like it just happened yesterday even though it has been an entire year...it's a very odd feeling.  So many things have changed while we've been away, including several new neighbors (with kids!) who we are getting to know.  We have been able to enjoy a few days at the beach and are catching up with friends.  Life is slowly returning to normal.

We have so many people to thank for the past year of our lives, including those of you who continue to read and pray and encourage.  This has been, by far, the most difficult part of our journey to date.  I'll write more about this later, but while we prayed and hoped, neither Tricia nor I realistically believed that she would survive this past winter and spring.  So many obstacles were place in her way, and yet, God continued to bless us far beyond what we could ever deserve.  We continue to hold the Duke staff in the highest esteem and are so thankful for their amazing knowledge and care and for the way God used them to bring Tricia back to life.

To Tricia's two donor families, wherever you are, whether you ever read this or not, thank you.

Nate

(Bump) Organ Donation Myth #1

(I'm writing this because I myself have heard this myth and at one point believed it could be the truth)

Myth - Doctors, EMS etc. will not do as much to save my life in a medical emergency if they know I am an organ donor.

Truth - All medical professionals are sworn to keep the Hippocratic Oath which basically states that they will do everything within their power to maintain the life of the person they are serving.

It makes zero practical, medical and ethical sense to "allow" one person to die (in this way) so that others might possibly live. Organ donation is never a sure thing for the recipient, and every single medical professional I have talked with about this subject (either on a professional or casual level) has given me complete assurance that they could not imagine anyone ever giving teeth to this myth. When you are in a medical emergency, their complete focus is on saving your life.

In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Please, read more about Organ Donation Myths.

I'd hate to think that the only thing keeping somebody from becoming a donor is a lie.

Nate

(Bump) Organ Donation Myth #2

(This myth can actually go two ways)

Myth 2a - Even if I never tell anyone, as long as I am registered as an organ donor on my driver's license and the medical personal are aware of that fact, my organs will be used.

Myth 2b - Even if I am registered as a donor on my driver's license, my organs will not be used unless I tell my closest of kin of my wishes and they are able to follow through.

The truth and false to these two myths really all depends on what state (in the US) you live in. Up until recently, Myth 2b was true for every state. If your next of kin either could not be contacted or was unwilling or unable to confirm your intent to be a donor, the indication on your driver's license meant nothing, legally. The family ultimately had the final say.

But, recently, several states have passed laws similar to the one passed just a few months ago in NC that make Myth 2a true. The Heart Prevails Act of NC declares that, even if the next of kin either cannot be contacted or is unwilling to consent, the little heart symbol on your NC driver's license is legal consent to allow medical personnel to begin the process of organ recovery. (Tissue donation still must be consented to by family.)

These new laws/acts are incredibly beneficial, for several reasons:

1) They help to insure that the wishes of the deceased are carried out.

2) They help take the pressure off of the family to make the final decision.

3) The make the entire organ recovery and donation process easier, quicker and safer, insuring that recipients have a better chance of survival.

4) They increase the number of available organs.

It is still incredibly important, no matter what state you live in, to notify your family of your wishes, even if it is just to help them be prepared.

Take a few minutes to Click Here and discover how you can become an organ donor in your state of residence and how to help insure that your wishes are carried out upon your death.

Read more about Organ Donation Myths.

Thank you!

Nate

(Bump) Organ Donation Myth #3

Myth - A deceased donor and/or family will be charged a medical fee for the organ recovery/removal.

Truth - There is NO cost to the donor and/or family for organ OR tissue donation.

In fact, the cost for organ recovery is charged to the organ/transplant recipient. The donor/family will be charged for any and all final efforts to save the donor's life, and sometimes those bills are misinterpreted as costs related to organ donation, but, again, the cost of organ donation is the responsibility to the recipient, NOT the donor.

As a side note: there are organizations set up that offer financial assistance to transplant patients/families who may not be able to pay for the cost of transplantation on their own. A good place to start is Transplants.org

Thanks!

Nate

Organ Donation Myth #1: Will the Doctors Save My Life?

Organ Donation Myth #2: Is My Driver's License Enough?

(Bump) Organ Donation Myth #4

Myth - An open casket funeral is impossible after organ donation.

Truth - Unless you plan on being naked at your funeral, organ donation does not effect an open casket funeral in any way.

In fact, throughout the entire organ recovery process, the deceased body is treated with the utmost respect and care, in large part to insure that an open casket funeral is possible. Even bone, skin and eye donations are completely undetectable under normal circumstances (again, if the body is clothed and eyes are closed).

Thanks!

Nate

Organ Donation Myth #1: Will the Doctors Save My Life?

Organ Donation Myth #2: Is My Driver's License Enough?

Organ Donation Myth #3: Will It Cost My Family and I Money to Donate?

(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

3rd Transplativersary

So much to be thankful for today, and we truly are.

But, although we do not know who they are, there is a family somewhere out there who is mourning the 3rd anniversary of the death of a loved one today.

Please pray for Tricia's donor family with us today.

Nate

65_RedRoses Documentary PreSale!

The DVD of Eva's documentary, "65_RedRoses" is now on presale through the end of May! I'm ordering my copy today Here. I've seen an abbreviated version, and can't wait to see the rest!

Eva did more than just about anyone else I know to raise awareness of Cystic Fibrosis and Organ Donation during her life, and with this film, she'll continue to do the same for a long time coming.

Nate

Radio Interview about Eva

A Canadian station interviews one of the filmmakers of Eva's documentary, "65_RedRoses". A great insight into Eva's passion for CF and Organ Donation awareness.



The documentary is not currently available on DVD, but hopefully it will be very soon. I've seen an edited (shorter) version of the film, and it's amazing!

Nate

Eva's Legacy

(Bump) A Sober Reminder

There's no delicate way to say this...

Every year, the late hours of New Years Eve and the early morning hours of New Years Day yield a high number of transplant calls.

Please, don't drink and drive. And, if you must go out on the roads without alcohol, be extra careful.

Organ donation/transplantation is a wonderful thing, but not so much at the expense of somebody's stupidity.

Thanks.

Nate

Rough Winter

The cold, germy months of winter are the toughest for CFers, especially those who are already hanging by a thread. Just in the past few weeks, I've read of a half-dozen CFers passing away, some who were waiting for their new lungs.

Please, take the time to pray for the Cystic Fibrosis community this winter. And, if you haven't already, please, please, please, consider becoming an Organ Donor. Here are a couple of quick Organ Donation & Transplantation facts:

> There are over 100,000 people, the size of a small city, on the transplant list in the US.

> There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

> In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

> From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

Nate

Lego Your Organs!

Thanks to Alice and Eva for this!


And, while I've got your attention, check out This Story of a young CF mother waiting for her double lung transplant...we're not the only ones with a powerful story to tell!

Nate

Thank You, Revisited

Many of you who have been following my blog since this time last year will remember my "Thank You" Post to Tricia's donor and family. Not a day goes by that I don't think about the donor's sacrifice and his/her family's loss. And, certainly with all that has happened this past year, we are even more thankful now, if that is even possible.

As much as we are celebrating life by remembering Tricia's transplant this coming week, a family somewhere out there will most certainly be remembering the death of a loved one...the person who gave Tricia her second chance at life more than likely passed away on the 2nd of April, the same day Tricia went into surgery.

With tears in my eyes, and a heavy weight of gratitude and compassion, I ask, with all of my heart, that you'll join us in praying for Tricia's donor's family this week.

Thank you.

Nate

(Bump) National Organ Donor Sabbath

This Sunday, November 16, 2008 Nags Head Church will be participating in National Donor Sabbath.

In the US, the weekend of November 14-16, 2008 will be observed as an interfaith celebration of the gifts of hope provided through organ and tissue donation and transplantation. We will be encouraging those who are members and attenders at NHC to consider becoming organ and tissue donors for the first time.

Please, consider talking with your church/religious organization leaders about participating in this life-changing event. For more info (including how to receive a box of info to help people in your church/religious organization become organ donors), visit the link below.

Organ Donor.gov

Thank you!

Nate

Free Bone Marrow Registration

It appears that the NMDP is not making this easy...I contacted them to inform them of the difficulties and to ask if they could make it easier. For now, follow the directions below, and, hopefully, you'll be able to register for free.

Go to www.marrow.org
On the right side of the screen, under "Events" click on the link that says "NASCAR Foundation Drive"
About 3/4 of the way down that page, click "Join online now"
Fill in the online info and the Promo Code will automatically generate

Beyond organ and tissue donation, another huge need is bone marrow donors. Fortunately, you don't have to be dead to donate bone marrow, but you do need to be registered and tested. Over 6000 people are currently searching for a bone marrow match.

Through September 22, the National Marrow Donor Program is waving the normal fees for registration (usually about $50).

Because we have a family member who may need a bone marrow donor at some point, this is something that we are very passionate about. Please, consider Registering Today!

Thanks!

Nate

(Bump) For My UK Friends (and everyone else)

Adrian passed away last night.

Adrian Sudbury of the UK has an incredibly rare type of cancer...in fact, he has been told that he is the only person in the world to have been diagnosed with this exact condition.

Although it is too late for a bone marrow transplant to save him, Adrian wants to make a lasting difference for years to come. He is attempting to make it compulsory for 16-17 year olds in the UK to receive education about bone marrow, blood and organ donation at college by taking on the government and the media. Having already had meetings with the Prime Minister and having been on TV and radio, Adrian has set up a Petition (UK residents only may sign) with well over 8000 signatures to date.

Because of Tricia's recent diagnosis, bone marrow has now entered our radar as something that may (very small possibility) affect our lives in a very direct way sometime in the future. I encourage you (especially if you're a resident of the UK) to take a look at Adrian's blog and consider signing his petition.

BTW, today (originally written on July 15, 2008) is Adrian's 27th birthday.

Thanks!

Nate

Fund-Raising

We're now at 91% of our goal of $3000 for the Leukemia and Lymphoma Society!! Looks like I'll be going bald for sure!

Also, I'm at 70% of my goal of $15,000 for our Great Strides Walk which takes place in a little more than a month!!!

Thanks so much to everyone who is partnering with me to support blood cancer research through the LLS and a search for the cure for Cystic Fibrosis through the CFF!! I continue to be amazed and humbled by how kind and generous total "strangers" can be.

A commenter pointed out earlier today that I seem to be spending a lot of time recently with fund-raising, and asked if I could "get back to the good old days" of just blogging about life and family, when I wasn't "asking for money all the time". Yeah...well, just a few thoughts...

1) If you want me to really "get back to the good old days", you'll notice that 10 out of 40 of my posts from last September (the first month that this blog was in existence) talked about fund-raising for CFF and/or organ donation. That's 25%. My average (of posts related to fund-raising efforts) over the entire existence of this blog is about 20%. You do the math...

2) Life flows in cycles. I, for one, am incredibly thankful that I can spend more time blogging about fun and world changing things like CFF and LLS instead of what I ate for lunch in the hospital... If you're not into what I'm blogging about this week, but you sure did love me last week, just show a little patience, because I promise it will come back around. It just so happens that our Great Strides Walk is upcoming in five weeks, and my wife is experiencing the effects of her first round of CHOP, all in the same short time-span...it's a natural thing that I'll be spending more time than usual talking about fund-raising.

3) Fund-raising is a HUGE part of my life now. You want me to blog about my life...well, here it is!!! You find yourself married to a CF, TX, cancer, diabetes, etc. patient and then try to tell me that I should stop blogging about fund-raising and just "blog about my life". If you don't like my life, don't read it! Simple. I blog about what I'm passionate about, and I'm passionate about helping my wife and the millions of others affected by these health issues. Unfortunately, that means talking about finances at times...some people find that uncomfortable...those are just the facts of life.

My blog readers are incredibly generous and compassionate people. I never demand or expect anyone to come with me, but I'll always extend the invitation to people to become passionate about the things I'm passionate about, whether that means giving monetarily, praying, offering encouragement, or simply becoming more educated. Anyone who continually comes back to read about our journey is my hero, no matter how involved they become. The fact that the extreme majority of people who read my blog are totally supportive says a lot about what I blog about.

Neither have I ever tried to take advantage of the fact that I have so many readers. Yes, the fact that thousands of people read my blog every day does shape my blogging to a certain extent, but I'd still be blogging about all of this stuff even if I was still having 50 hits/day (like I was in Sept.)...I might just be asking for $300 instead of $3000. However, I do realize that I've been given a platform, and, with the help of those who are willing and able, I can use that platform to do good things for a lot of people.

So, once again, Tricia and I say THANK YOU! to the thousands of you who read and, through your words, actions, and even silence, show my family and I (and the thousands of others who find themselves in similar situations) unconditional love and support. We wouldn't be here without you!

Nate

PS. I encourage you to read through the comments sometime...the stories that others share in the comments are no less inspiring than our own.

Another Newspaper Article

If you're anywhere near Murray, KY today, pick up a copy of today's Murray Ledger & Times to read an article about us and Organ Donation.

If you're like me and have no idea where Murray is, you can read part of the article online.

Thanks!

Nate

Answers

Wow! You people really know how to ask some questions.

There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.

I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.

To make it easier, I split these up into categories.

Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.

Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!

Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).

Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.

Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.

Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.

I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.

Thanks!

Nate