Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts

Friday, July 4, 2008

Two More Miracles

Gina is a a young CFer who just came out of double lung transplant surgery, literally hours ago. She is having a rough time in her first few days.

Anthony is a 12 year old CFer who is also just a few days out of a double lung transplant. He is doing as well as possible.

From experience, both Anthony and Gina and their families could use the same encouraging words that you gave to us a few months ago, so please, take even just a minute to swing by their blogs and lift them up.

And, of course, there are two more donor families who could use your thoughts and prayers right now...

Thanks.

Nate

Tuesday, July 1, 2008

Please, Watch This Video

There is hope...



Please, Read This.

Please, Be Part of the Hope.

Please, share this video with others.

Nate

Wednesday, June 25, 2008

5 MILLION HITS!!!

WOW!

You people are crazy. Am I really that good looking that you keep coming back for more?

I'm taking the day off from work to get some fun beach time in with the Krazy Kirschners, and this evening I'll be taking some family pics of everyone out on the beach.

I hope you enjoy your day as well!

Nate

PS. My time with the Chamber went well this morning...we'll see if it produces anything.

Tuesday, June 24, 2008

OBX Chamber of Commerce Tomorrow

FYI

I've been invited to speak to the Outer Banks Chamber of Commerce Board of Directors tomorrow morning at 8:30am about our Great Strides Walk for CF. These people are some of the movers and shakers of our community, and it will be a great opportunity to get some key people/businesses on board to help us reach our walk goal of $60,000.

Thanks!

Nate

Saturday, June 21, 2008

Better Late Than Never!

This might be the cutest thing ever...we don't know these kids, but I hear they're faithful blog readers!



Thanks, Bogart Family!

Nate

Friday, June 20, 2008

Remembering Haley Palmer

Hmmm...seems the video does not want to work here, so Read the Story and Watch the Video of Haley's family and community remembering Haley.

Nate

Thursday, June 19, 2008

CFer Blog Roll Call

While we drive home, here's something to do...

If you are a CFer, or a caregiver of a CFer, AND you blog on a consistent basis about CF, please, consider leaving a comment with your blog address as well as a brief description of who you are/your CFer is and what your blog is about (you don't have to include the description if you don't want to).

I'll put all of the blogs together in one post, later to be used as another resource for those looking to connect with other CFers and learn more about the disease.

I'm specifically looking for blogs that write about CF from an experiential basis. Please, ONLY post if it is your blog...don't post somebody else's blog address. And, please, don't comment under this blog if this doesn't apply to you so that we can keep the comments on point.

Thanks!

Nate

Friday, June 13, 2008

Choose To Be

When your life involves Cystic Fibrosis, it also involves death. Unless a CFer dies in another premature way, they will die because of their CF, until a cure is found. And, there's no way to know when.

CF is an unforgiving disease that takes no prisoners. Nobody chooses to be a CFer, and there is no easy road for a CFer, even the most healthy. Death is a harsh reality, and those who choose to ignore it tend to die much younger than they should have. To attempt to prolong death means considering incredibly painful and risky surgeries, medications, and other treatments.

And, it's incredibly unfair and unpredictable. The same common cold that might kill one "healthy" CFer might go unnoticed with another. The same drug that could help prolong one life could irreversibly damage another. Some are diagnosed early and live for 30+ years without any major issues, while others aren't diagnosed until their 30's and die a few months later.

When Haley was born 12 years ago, her parents were probably told that their daughter had a 50/50 chance of living to see her late 20's. She didn't even make it half that far. Yet, there are a few thousand other 12 year old CFers living right now who will survive into their 30's.

In the time we've been at Duke during the past 6 months, no less than three people we have met and known personally at Duke have died because of their CF.

One was in her early 20's, just months removed from her second double lung transplant, the first one having failed her after only a few years.

Another was much older, diagnosed just last year, hoping to work her way onto the transplant list before her body gave out on her.

The human will can only take one so far...unlike most cancer and many other diseases, CF is one that simply cannot be "beaten", and even the most determined person can't do a single thing about it when their body turns against them.

Yet, despite all of this, I have never witnessed a CFer complain. I've never heard a CFer say, "I can't". I've never seen a CFer not be able to smile. I've never known a CFer who didn't love and care for others more than themselves.

Perhaps it's the closeness to death that gives these people so much life. Maybe it's the pain and frustration that causes them to find such joy. All I know is, at the end of the day, they are blessed if they choose to be.

And those of us who know them are as well.

Nate

(Bump) Haley Palmer

Haley passed away just a little while ago. Please, take the time to visit her site and leave an encouraging message for her family. CF is a horrible disease, but we can make a difference together.

I've been watching Haley Palmer's Story, and, though many of you are already aware of her, I thought I'd mention her for those who aren't.

Haley is 12, with CF and in desperate need of a transplant, but first, she is in critical condition because of other issues. Her family remains hopeful, praying for the same kind of miracle that Tricia and Gwyneth received.

A few of our family who have also been following Haley's blog have noted how much Haley reminds them of Tricia at that age, and I have to agree (from what I've been told of Tricia at that age).

I know that Haley's family would appreciate your thoughts and prayers right now.

Thanks!

Nate

GearUp4CF.org

Our CF/TX friend, Eva (65redroses.livejournal.com) is helping her dad raise money for CF in a really cool way.

Bill Markvoort is joining GearUp4CF to raise money for the Canadian Cystic Fibrosis Foundation by riding across BC, Canada. The 10 day ride begins in just a few days, so don't miss out on this opportunity to support CF research.

Eva put together the video below to help her dad raise as much money as possible to help find a cure for CF. Check it out, and please, consider Clicking Here and sponsoring Bill by donating the the CCFF today!

Thanks!

Friday, June 6, 2008

Another CF Story

To look at her, you'd never know Meagan VanEngen is living with Cystic Fibrosis.

But the vibrant, happy and successful 18 year old takes 12 medications daily, underwent six surgeries in just six years, from 2001 to 2007, and is prone to four-week stints in the hospital with lung infections several times a year.

On Friday, May 31, the Maple Valley High School senior took to the stage — graduating with a 3.992 grade-point average as co-valedictorian of her class... (Read More)

Stories like Meagan's and Tricia's are becoming more and more common because of support for the Cystic Fibrosis Foundation from people like you.

Have fun at LU, Meagan! Let us know if you need anything!

Nate

Tuesday, May 27, 2008

$900+

That's how much the HUGE Yard Sale made over the past two weeks!

Most of the donated items not sold went to the Salvation Army, and a few things are being held to be sold at other fund raisers throughout the year.

A BIG thanks to Amy and Donna and the several volunteers who helped pull it off, and for the many people who donated items! All of the money goes to the CFF to fund the search for a cure!!!

Thanks!

Nate

$983.40

That's how much Lisa Leonard raised for the CFF yesterday! Too cool!!!

Thanks, Lisa, and all those who made a purchase, for helping us find a cure for CF!

Nate

Monday, May 26, 2008

(Bump) Monday, Monday, Monday!

This Monday (May 26/TODAY!), our friend and personal jeweler (haha), Lisa Leonard is going to be donating 20% of all sales ordered from her website today to the Cystic Fibrosis Foundation!!!

If you're looking for something different and very cool, Check It Out! Below is the piece that she helped me design for Tricia a few months ago!



Thanks, Lisa!!!

Nate

Sunday, May 25, 2008

Blogroll (+1)

Somebody asked me a while back who's on my blogroll. Without telling you everything about myself, here are a few blogs I check out daily (even though I've already mentioned them before)...

> All the blogs of my family (at least those I know are blogging). Check out My Dad, Uncle Andy and BIL Terry if you like church ministry related stuff. Check out my SILs Megan and Janet if you like some very funny stories and insights on family life.

> 65Pounds4Pattysue because 1) he's raising money for the CFF with Tricia as his inspiration, and 2) because he's very funny with his stories about tight pants and such.

> It'sTheLittleThings because she's super creative, a good photographer and has a beautiful family...I always smile when I read her blog.

> JessicaClaire because her photography is amazing and she's basically the nicest person ever.

> LivingLifeBreathlessly because she's a good CFer friend, I love South Africa and we get a sneak peek at what the post-TX life is like two months into the future...

(I left this last one off the first time...meant to post it)

> TheLockwoodFamily because they really need your thoughts and prayers right now...

There are a few more on my list, but they'll be kept a secret. Whose blogs do you read?

Nate

Friday, May 23, 2008

Yard Sale Update!

The HUGE Yard Sale went very well last Saturday, raising over $700 for the CFF!!!

They had so much stuff, in fact, that they're doing it again tomorrow from 8 until...

So, if you get a chance, check it out! (ignore the old date below)

Nate

Wednesday, May 21, 2008

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

Saturday, May 17, 2008

Yard Sale Still Going!

It's noon now, and there's so much stuff that they'll be out there for at least a few more hours if you get a chance to go by. I picked up a couple of sweet t-shirts for Tricia and I. Lots of good cookies too!

Nate

Friday, May 16, 2008

Yard Sale Tomorrow!!!


Be there or be square!

There is some seriously good stuff to take a look at...here's an email I received a few days ago from one of the organizers...

We have more clothes than WalMart!! We have microwaves, a convection oven, computers, printers, lots of kitchen and household stuff, washing machine and the list goes on and on.

We are also having a raffle:
a 42 piece tool set
2 gift certificates from hair dressers
an autographed photo of Mickey Rooney
limited edition photo of Lucille Ball
a gift certificate for free car detailing
a gift certificate for house cleaning
agift certificate for tupperware
an autographed CD from Coastline Band.

I'm going to do my best to try to make it out there at some point for a little while. Hope to see you there! The weatherman just said it's going to be a "Beautiful Day!"

Nate

Tuesday, May 13, 2008

Happy Birthday Tricia!!!

Happy 26th birthday, my love! You continue to amazed me with your grace and beauty through all things, especially this past year.


If you'd like to say "Happy Birthday!" with more than words (and she totally appreciates the words!), please consider donating to Tricia's Personal CF Great Strides Fundraising Goal (click "click to donate" at the bottom of the linked page) to help insure that Tricia gets to spend her 27th year healthy and happy!

Hundreds of people (thank you!) have already donated to CFF in Tricia's honor, helping us to already raise nearly nearly $10,000 for our Great Strides Walk on the OBX in September! If every person who visits this blog every day were to donate just $1, Tricia would more than triple her personal goal of $5000 and we could literally help hundreds of thousands of people!

Thank you!

Nate