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

Interested?

There are a few national media groups (I'm not allowed yet to say who) are interested in our story. I've been asked to find out if any of my blog readers who have changed their minds about organ donation or have decided to become an organ donor for the first time because of reading our story might be interested in sharing their thoughts with a reporter or two.

If that's you, and you are seriously interested in helping us tell our story, please leave a comment under this post (don't email me!) with a brief synopsis of how/why our story has helped you make the decision to become an organ donor, including your previous thoughts/opinions about organ donation.

I don't know for sure if anything will come of this, and I won't be the one making the decision about who might be selected.

Thanks!

Nate

Bone Marrow Myths

Somebody asked me about a bone marrow myth. Since I'm not well educated about this subject, I'll direct you Here for any questions you might have.

Nate

Bone Marrow

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.

Over the next two weeks, the normal fees for registering are being waved by the National Marrow Donor Program in honor of Mother's Day.

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

Thanks!

Nate

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?

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?

Are You?

Edit - I realize that not everyone can participate in the following poll...many people have been organ donors for a while and many others are unable to be an organ donor for many reasons...this post is not meant to make anyone feel left out or guilty. The goal of this poll is simply to find out who may have been moved by Tricia's story to become an organ donor. I purposely didn't add other options, such as "I have always been an organ donor and have always known it's important", but please, feel free to leave a comment about yourself if you are unable to participate in the poll. Thanks!

During the 40 days that Tricia was on the transplant list (Feb. 22 - April 2), approximately 712 people (sons and daughters, parents, siblings, grandparents) died while awaiting an organ donation.

I have literally received thousands of comments and emails from people who have told me that they have become organ donors for the first time because of reading Tricia's story. I'm very curious to find out just how many people Tricia's story has effected in this way, because I think it is incredibly encouraging to know that we all have the ability to be used to change lives.

Please, take a few seconds to answer the following poll honestly. You can answer multiple times if more than one member of your family can participate. And, feel free to comment about your decision.

Thanks!

Nate

CF Story

Not a coincidence that This ran in the Virginian Pilot on the same day as Tricia's story. We were living in the Chesapeake area when all of the fundraising for this (now) 12 year old CF girl was happening.

Not everyone gets a second chance at life...

Consider Donating to the Cystic Fibrosis Foundation to help insure that other kids don't have the same fate as Emily.

Nate

Q&A

I thought I'd answer some questions (as there have been a lot the past few weeks) first. I still have over 2000 comments I've yet to read from right after the transplant (I've already knocked out about 2000 over the past few days), so, as always, if I don't answer your question, it's because I can't, don't want to, already have or just haven't read your question yet (or because I plan on answering it soon in another post).

> Gwyneth is wearing clothes...has been for several weeks. The primary purpose of her clothes is to keep her warm. All of the clothes she wears are just like regular onesies, only a whole lot smaller, and most have been given/sent to us as gifts as we have yet to buy anything for her. Some come from the NICU, but just when she runs out of clean stuff we've brought in. The nurses usually dress her. Mico-preemie clothes are difficult to find except on the internet. Hopefully, someday, we can give what we're receiving away to somebody else in need.

> "Blood gas" is the level of O2 and CO2 in the blood. They take a few blood gases (draw blood to test for the levels) from Tricia every day to make sure her lungs are working the way they're supposed to. They're especially watching for dangerously high levels of CO2.

> Somebody left a comment a few days ago saying that organ donation NEEDS to be outlined in a living will...this is NOT true (at least, not in most states). Yes, a living will is one good way to insure organ donation, but most states (and soon, every state) have new laws that declare that either the drivers license or online registry is all that is needed for the deceased to insure that their organs are donated.

> I take 99% of the pictures you see here on the blog...even the ones of me holding Gwyneth. Thanks to family and nurses for the shots that even my long arms can't handle.

> Gwyneth doesn't have reflux issues. Her crib (as was her incubator) is tilted to help insure that it stays that way.

> As I've mentioned before, I'd prefer not to go into great detail about the transplant surgery....as you can imagine, it's pretty hard-core and I don't want to gross anyone out. You can very easily find lots of reliable (and lots of unreliable) info with a quick google search...I've even been told you can find a video of an actual surgery. I'll give you some of the basics of the surgery in anther post soon.

> To answer This Puzzle (like anyone even remembers), Rosie owned a house in Nyack, NY while I was a student there at Nyack College '99/'00...I could even show you which house it was (actually, could just show you the really tall fence and gate).

Thanks!

Nate

Another Amazing Transplant Story

You seriously need to check out this story about tragic death and an incredible gift.

This is happening here locally in Durham and began the same day Tricia got her transplant call. The back story is that two young brothers were killed last week when they ran out into traffic.

Make sure you click the first link first, watch the video/read the story, and then click the second link.

Watch This First

Watch This Second

Organ donation is such an incredible way to celebrate the life and honor the death of a loved one.

Thanks.

Nate

She wants people to know the facts about organ donation.

As Nathan has written before April is Organ Donation Month. What I think is so phenomenal is how many commenters on this blog have said Tricia's story has motivated them to register as organ donors.

Maybe you're hesitant and have questions. If so here's a link to a great article about how a tragic death resulted in so many being helped.

Think about it. Why throw away organs that could allow someone else to live or have sight or recover from burns....? It makes no sense to me.

Rick Lawrenson

While We Wait...

No word yet on the TX. In the meantime, here are a few things I think you should check out:

> I occasionally write for an online resource called Worship.com. They just published an article of mine titled 100 Days that relates to this blog that I thought you might like to read.

> Tricia's sister, Megan, recently blogged about Life As a CF Family (and, there's a pic of Tricia from a few years ago).

> My Dad is waxing nostalgia about me and saying some nice things about Tricia's family on His Blog.

> Uncle Andy's April Fools joke was almost as good as mine!

> NC just created an online Organ Donation Registry! Check it out and sign up if you live in our great state!

> If you haven't yet, consider voting in one or all four of the categories the CFHusband blog has been nominated for HERE (it just takes a few minutes)! I don't really care much about winning, but a win would mean more exposure for CF, Organ Donation and Premature Birth! As a side note, we're leading all vote getters! Rosy O'Donell's blog is in second place, which is funny because we used to be neighbors...just thought I'd throw that out there.

> Unrelated to the above blog awards, I received a blog award Here! Don't know what it means, but thanks!

Thanks!

Nate

TX CALL #2!!!

The transplant team just walked into our room (10:45 am) and told us that they have another pair of lungs that they are flying out to look at. Based on the little into they gave us, these sound more promising than the last, but there's always a chance this could be another dry run.

We won't know anything for sure until at least mid-afternoon, and if it's a go Tricia should be in surgery by this evening. I'll update as soon as I know something.

Tricia is, understandably, more apprehensive about this call than the last, but we are both praying that this is the one!

Thank you for your thoughts and prayers for us, our families and friends, the transplant team and the donor and family.

Nate

Organ Donation Month

Nearly a year ago, Tricia and I received an email that would affect us very deeply.

For the first two years of our marriage, I was on staff at a small church in VA. Jess Jackson was our pastor, and he and his wife, Carol, quickly became two of our greatest friends and supporters.

When it was most valuable, in the earliest years of our marriage, we had, in the Jacksons, a nearly perfect (and I say "nearly" because nobody's perfect) couple to watch and learn from and model our own relationship after.

We spent hours with the Jacksons, inside and out of the church. Tricia and Carol would meet together for coffee or lunch, sometimes multiple times a week, forming a bond that has only grown stronger in the few years since we moved away.

Jess invested hours in spending time with me, in ministry and in my everyday life. I have never known a more humble or kind man. Never once did I hear Jess speak poorly of anyone, and he always expected and looked for the best in me and everyone else he knew and loved.

Last June, almost a year to the day that we moved from VA Beach to Nags Head, we received an email telling us that Jess had suddenly and completely unexpectedly passed away. I can remember exactly where we were sitting, exactly what I was thinking, exactly how I felt that day and for a long time after.

Not to mention his church and, I'm sure, thousands of sincere friends and family, Jess left behind Carol, two grown sons, two daughters-in-law and a handful of beautiful, little grand-daughters.

This past year has been a difficult one, for sure, for the people Jess left behind, but Tricia and I have been encouraged to watch the Jackson family remember and honor Jess with faith and grace.

Just this past week, Carol emailed us again with some incredible news. The following is part of her email:

Yesterday our family received a thank you letter from someone (it was directed through the donor bank for anonymity) who received donor tissue from Jess' eyes. My reaction when I got the letter was not really what I had thought; I thought I would be much more sad. It really had a positive impact on me, to know that someone is able to see because of Jess' eyes.

I knew that Jess had wanted to be an organ donor, but to actually do it seemed somewhat strange at the time, but now it seems like a natural thing. Jess was always such a sacrificial giver, to family, church and even at our most tragic moment something good came from it. I am praying that someone else's family will make that decision for lungs for YOU, Tricia--and that they, too, will be comforted by their decision.

Reading this email made me pause and remember Jess just as much as the email from last June, but for completely different reasons. What a gift, to both the recipient of Jess' donation and to those of us who are still grieving. I can't think of anything else, beyond knowing that Jess is in a much better place, that could help bring peace and comfort to those of us who are still searching for the "good" of Jess' death.

Again, as I've written before, thank you to those of you who are donors, and to those of you who have watched a family member or friend give the gift of life through death.

April is Organ Donation Month in the US. The only reason there is a waiting list for transplant patients is because there are far too few who have seriously considered giving the gift of life to another. Please, if you haven't already, consider becoming a donor today.

Thank you.

Nate

TX Update (2:25am)

I just received a second phone call (2:09am) from the transplant coordinator. The lungs are "no good". That is all I know.

We're are going to try and get some sleep now and look forward to a good day tomorrow. It's been amazing to see the support tonight, especially the huge number of people who came out of the woodwork to comment for the very first time. Thank you all for your prayers and thoughts, and for those of you who mentioned us on your own blogs over the past few hours.

We are humbled by the sincere care and support of so many who may never even meet us on this earth.

Please, continue to pray for the donor's family, as they may still be grieving. We hope that the lungs and/or other organs were good for somebody out there...

Nate

TX Update (7:43pm)

We've learned that the transplant team is flying out of state to examine the lungs and donor. We may not find out for sure if it's a go for a few hours, and the surgery would not take place until at least early tomorrow morning.

They are getting Tricia ready. She has already given about 15 vials of blood and has had an EKG.

Please, also be thinking about and praying for the donor's family. Even if this isn't Tricia's match, somebody has died today willing to give the gift of life, for which we are always thankful.

I'll update again when I learn more.

Nate

Helicopters

Tricia's window is directly under the path that the medical helicopters take when landing on the roof at Duke. We hear and see every single one. Every time, I wonder if this is the one that is carrying Tricia's new lungs.

We've been told that the transplant team has received several offers for Tricia, but none of them have been the right match for her upon deeper examination.

Being at the hospital has its blessing in that we don't have to worry about "dry runs".

A dry run takes place when the hospital calls you to say that they have a potential match and would you please come in to be prepped...but the offer eventually doesn't pan out. Some patients make it all the way through surgery prep before being notified that the donation is not a good enough match.

We've been told (and can only imagine) how much of an emotional roller coaster this can be. We've talked with some transplant patients who have had multiple dry runs.

But, because we are already at the hospital, the transplant team has some extra time to determine for sure if an offer is the right match for Tricia, which means, hopefully, we will only be receiving one call.

Until then, we'll continue to listen for the helicopters.

Nate

Front Page!

Click Here to read the article online (make sure you click on "Photo Gallery" as well)!

Our story made the front page of today's Sunday edition of The News & Observer newspaper here in Raleigh/Durham!

Yonat Shimron (writer) and Corey Lowenstein (photographer) did an incredibly outsanding job of capturing our story in words and photos (respectively), and we thank them for the hours they spent with us (and, obviously, many more hours spent in research, composition and editing) over the past few weeks.

We are humbled to have this opportunity to share our story, and we pray that God will use this and other opportunities to show Himself and bring our passion for awareness of and support for Cystic Fibrosis, Organ Donation and Premature Birth to the minds and hearts of even more compassionate people.

Thank you!

Nate

Life & Death

Tomorrow, Tricia and I will join with millions of others as we remember the Death and celebrate the Life of One so long ago that has given the hope of Life for All.

I wanted to write something about the meaning and importance of Easter to Tricia and I, but I remembered this post and really couldn't think of anything that I could say better than what has already been written.

The following was originally posted on 2.22.08 (exactly one month ago, the day Tricia was listed).

Death is a reality of life. Depending on your views of God, family, religion, life, ethics, etc., you may look at death in a different way than we do...but none of us can deny that the physical death of our bodies is inevitable.

Organ Donation, whether from a living or deceased donor, is perhaps the greatest gift one person can give another.

Today, we have celebrated the fact that Tricia has been activated to receive a double lung transplant. We celebrate because Tricia is being given an opportunity to continue living beyond the next few months. We celebrate because there are people in this world who have chosen to use their death to be a blessing to others.

A healthy organ donor can be a blessing to up to 7 different people through their death.

Today, 78 people (in the US) received the organ donation that they have been waiting for.

It is for these reasons that we celebrate.

But, for Tricia and the nearly 100,000 other patients waiting for an organ donation to continue living, people who have made the choice to be donors have to die. And for those people (and their families) who gave the ultimate gift yesterday, today and tomorrow, we say "thank you" with all sincerity and humility.

We do not celebrate the death of an organ donor. But, we do celebrate their gift of life.

We do not pray for a donor to die (God knows that death doesn't need any more of our "help"). But, we do pray that through their gift of life, their family is going to be helped in their grieving process because of their loved one's gift of life.

We have been waiting for this day for a long time, knowing, as much as humanly possible, all that it means for us and the donor and our families and friends. We have also been praying for the donor and family and friends for just as long.

We ask that you pray and think about Tricia's donor with us. For some more great insight on how to do this, please take a few moments to Read This.

Thank you very much.

Nate