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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
at

87 comments:

  1. RebeccaJune 19, 2008 at 10:25 AM

    Hi there, I'm Becky, and I have 2 young children. My daughter, nearly 6, has CF & asthma. My son, nearly 4, has CF, asthma & autism. My blog is entitled Life As A Mum to 2 Children With CF. The address is http://beckyadrianserendylan.blogspot.com and I've been doing my blog for about 18 months now. Xx

    ReplyDelete
  2. TorJune 19, 2008 at 10:27 AM

    Ok I'm going to be brave and put my blog up! I am 21, have cf and am currently waiting for a double lung transplant in the uk. I update my blog about once a week. If anyone fancies a read you are most welcome!
    Tor x
    BTW i love reading your blog nate and wish you and your family well x

    ReplyDelete
  3. TorJune 19, 2008 at 10:27 AM

    Ok I'm going to be brave and put my blog up! I am 21, have cf and am currently waiting for a double lung transplant in the uk. I update my blog about once a week. If anyone fancies a read you are most welcome!
    Tor x
    BTW i love reading your blog nate and wish you and your family well x

    ReplyDelete
  4. KatelynJune 19, 2008 at 10:28 AM

    Hi Nate and Tricia! I'm Katelyn, a 22 year old student about to graduate from university and have CF too. My blog address is www.katelynharlow.blogspot.com and is titled "Katelyn Elaine".

    ReplyDelete
  5. CourtnieJune 19, 2008 at 10:28 AM

    Hi! I am Courtnie and I am the mom of a 10 month son w/cf. My blog is called Fighting Cystic Fibrosis One Day At A Time and the address is nomadicmommy.blogspot.com.

    I think that this is a great idea :)

    ReplyDelete
  6. KoriJune 19, 2008 at 10:52 AM

    I'm Kori and I my Husband Richard has CF as well as Stage 4 Recurrent Colon Cancer. www.lifeasacferswife.blogspot.com and Richard my hubby also has his own blog it's
    www.richardslongjourney.blogspot.com
    Thanks for checking it out we have been following you guys for a very long time and we continue to pray for you and your family. God Bless

    ReplyDelete
  7. Taylor and DevonJune 19, 2008 at 11:00 AM

    Hey there...Do not have a "CF" blog, but do have a blog for my children. Hausband is diagnosed with CF at age 45. Both children are carriers, and we are currently waiting to see CF specialist in the city for both children and husband. My name is Kathy and my husband is Jim. Our children are Taylor and Devon. Jim is not accepting things real well at this point on the topic of CF, but he is really trying to do as the Drs say. Again I will give you are blog site but my husband would not allow any CF info on it at this point, but I would love to have others to talk to....

    ReplyDelete
  8. Taylor and DevonJune 19, 2008 at 11:03 AM

    Nate...can't figure out how to give address, not real inclined to computers...email is kathyrossiter@aol.com

    ReplyDelete
  9. JayneJune 19, 2008 at 11:10 AM

    This comment has been removed by the author.

    ReplyDelete
  10. JayneJune 19, 2008 at 11:14 AM

    Hello,

    Ok, I have been following your story for aages and ages.. well ok.. since I found it in January.

    I have CF too. I'm 34 and I have a son who is 'CF Free'. He is 10 but has the mind of a 40 year old. I also have a dog and a complex about the width of my feet.

    My blog isn't ALL about CF so maybe it isn't what you are looking for but it does allude to it here and there. It is mainly about silly snippets of my life and family or just random thoughts. Or tales of hospital appointments or something.

    I tend to make black jokes about it all, which isn't everyones cup of tea, but it is just my way.

    I also would like to add my best wishes to you all. You seem like a fantastic family. Being a Mum is amazing and I love every single when I wake up and see my son. I was so excited for you all when I saw you were all able to go home.

    I will go now and take my stretched feet with me.

    Take care.

    Jayne

    www.myfamilyandotheranimals-jayne.blogspot.com

    ReplyDelete
  11. Alice VogtJune 19, 2008 at 11:29 AM

    I am 23 years old and have CF and had a lung tx in January this year. Doing amazingly well! www.livinglifebreathlessly.blogspot.com

    ReplyDelete
  12. TracyJune 19, 2008 at 11:43 AM

    Hi Nate, I love your blog and read it every day. I'm the mother of a CF child, she'll be 12 yrs old in August and her name is Molly.
    My blog is titled A Simple Country Life, it isn't all about CF but I do occasionally post CF stuff there, especially when we're at the hospital...blogging is a great way to keep family and friends informed in what is going on day to day.
    Take care ...
    Tracy in Alabama
    http://asimplecountrylife.blogspot.com

    ReplyDelete
  13. TaraJune 19, 2008 at 11:51 AM

    Ni Nate,

    I'm Tara, 32w/CF from California. I gave birth to twins in 2004 and I blog about my daily life raising twins. When CF is above and beyond the 3 hours of treatments I do a day (say...a hospital stay or even IVs at home) then I blog about CF too.

    I won't be offended if you think it's too much of a mommy blog to include in your CF list.

    http://tarabelletwins.blogspot.com

    ReplyDelete
  14. LorraineJune 19, 2008 at 11:59 AM

    Hello
    I'm Lorraine - mother to 2 boys who both have Cystic Fibrosis - Daniel is 13 and Joe is 5.
    I am an avid and dedicated fundraiser here in England for the Cystic Fibrosis Trust.
    This is a well known Blog in the CF Community over here for a Calendar created by myself to raise awareness and monies for the CF Trust:

    www.cfcalendar2008.blogspot.com

    I have a personal Blog which is linked from the Calendar Blog, but it's a bit boring!

    ReplyDelete
  15. KateyJune 19, 2008 at 12:10 PM

    Hi, I'm Katey and I'm 23. I have CF and had a living donor double lung transplant 4 years ago. I just started my blog but update it every day pretty much. I'm a full time student and will graduate next May. I'm currently experiencing several post-transplant issues as well. Here's my blog address:

    http://cftransplantmiracle.blogspot.com/

    ReplyDelete
  16. Norma Kennedy PlourdeJune 19, 2008 at 12:15 PM

    Hi,
    I am 46 with CF, live in New Brunswick, Canada, and have a CF site, that I started way before blogs were invented (11 years ago). You can visit it at:
    http://www3.nbnet.nb.ca/normap/CF.htm There are lots of personal CF stories there, especially in the "Personal CF Pages" area.

    ReplyDelete
  17. JenJune 19, 2008 at 12:34 PM

    HI, my name is Jen. I am 26 with CF and I am currently waiting for a double lung transplant in FL!

    http://myjourney-jen.blogspot.com/

    XoxoX

    ReplyDelete
  18. careysueJune 19, 2008 at 12:46 PM

    Hi Nate, My name is Carey and I have a son with CF his name is Rickie he's 7 in August. I have a blog and post about our life (I have six kids!) Keep relatives posted when Rickie is in the hospital. (womensprerogative.blogspot.com) My husband is started a blog specifically for Rickie its forrickie.com we will be doing fundraisers and raising money for CF.

    Your posting about blogs and CF blog roll came at a perfect time!

    Thank you,

    Carey

    ReplyDelete
  19. careysueJune 19, 2008 at 12:57 PM

    Sorry, my husband's blog will actually be 4rickie.com ...its not working yet, but it'll be up real soon.

    ReplyDelete
  20. JenniferJune 19, 2008 at 12:58 PM

    I am not a CF blogger in anyway but I have just spent much of the last 24 hours catching up on your entire blog after finding it on the blogger awards. Thank you for sharing this story with all of us, you will be in my prayers, and I am strengthened by your constant faith in Christ.

    ReplyDelete
  21. JacJune 19, 2008 at 1:02 PM

    I'm 29, have CF and received a double lung transplant 8 weeks ago. I started my blog almost 2 years ago to follow my journey towards transplant and beyond. I live in the UK and came across your blog on a post on the CF forum and have been following your journey since.

    'Up the Faraway Tree'
    www.weejac.blogspot.com

    ReplyDelete
  22. KristinJune 19, 2008 at 1:04 PM

    Hi Nate. My name is Kristin and I have followed your story since March. My husband, Ryan, just recently passed away because of his CF. There are about 2 months worth of posts on what life in the ICU is like while waiting for a transplant. Feel free to use our blog if it is what you are looking for.
    http://sweeney4.blogspot.com

    ReplyDelete
  23. CFstephJune 19, 2008 at 1:28 PM

    I am a 32 year old female with CF. I do blog about my CF.

    I have two blogs that I try to upkeep.

    http://blogs.cysticfibrosis.com/index.cfm?forumid=13

    and

    http://www.myspace.com/cfsteph

    ReplyDelete
  24. JulieJune 19, 2008 at 1:36 PM

    Hi, I'm Julie and my 2 year old son, Seamus, has CF. Seamus spends a lot of his time in doctors' offices and hospitals (he's been admitted 13 times). I started my blog because I didn't want that to be the only thing he remembers about his childhood. It's called MuggaBugga.blogspot.com because when he was just starting to talk he loved to say "Mugga Bugga".

    ReplyDelete
  25. cindy baldwinJune 19, 2008 at 2:12 PM

    This comment has been removed by the author.

    ReplyDelete
  26. cindy baldwinJune 19, 2008 at 2:13 PM

    AWESOME!!! I have been thinking for months that somebody needs to put together a big CF blogroll.

    My name is Cindy. I am almost 20, have CF, and blog regularly. I write a lot about the various aspects of living with CF-- lately I write especially about all the challenges that come with marriage and CF as I am getting married in 2 months.

    My link is beingcindy.blogspot.com.

    ReplyDelete
  27. CaraJune 19, 2008 at 2:33 PM

    Hi Nate! What a good idea! I'm Cara, a 26 year old CFer. I blog about once a week, but lately my poor blog has been a bit neglected b/c we are in the process of remodeling an 80 year old home. I was thisclose to making my blog private, but you've made me decide to leave it public. I love meeting other people in the CF community!

    ReplyDelete
  28. AnonymousJune 19, 2008 at 3:03 PM

    I'm so looking forward to reading this list. My CF blog is fairly new, but I'm putting up older entries from my other blogs right now to catch people up. My blog is http://65rosesinbloom.blogspot.com and it's about my CF life. Right now I'm trying to list for a double lung and liver transplant, which hasn't been done yet in my home state of Massachusetts.

    ReplyDelete
  29. Taylor and DevonJune 19, 2008 at 3:13 PM

    Nate...I re-read your blog and i do dont blog on a consistant basis about CF, so I guess I need to be excluded. thanks anyway...
    Kathyrossiter@aol.com

    ReplyDelete
  30. DebJune 19, 2008 at 4:06 PM

    Hi Nate,
    I do have a web page that I keep for our daughter who had a double lung transplant three years ago last Friday!! Yes, Our God is an Awesome God!!! We actually have two children with c.f. Our webpage has a lot of information about the day to day life of our daughter living life after transplant, the info regarding the transplant and then just our day to day life with two children with c.f.
    We follow your blog daily and you are all in our prayers constantly!!
    God Bless you,
    Debra Gabehart
    The address to "Christena's Journey"
    is: www.geocities.com/debgabehart

    ReplyDelete
  31. Princess TalanaJune 19, 2008 at 4:10 PM

    Hey Nate,

    I have my blog at http://talanaf.blogspot.com.

    Usually a few posts a week, mostly about my life with CF, as I slowly creep closer to needing a transplant.

    ReplyDelete
  32. CarolynJune 19, 2008 at 4:32 PM

    Hello, I have two sons that have cf. My blog is about things going on in our life but I do write about cf also. The address is kylerbransonjade.blogspot.com

    It is called A Thousand Pictures

    Thanks for doing this!
    Carolyn

    ReplyDelete
  33. The Liberto FamilyJune 19, 2008 at 4:48 PM

    Nate,
    My name is Traci and my daughter Meliss who just turned one on June 17, 2008 has CF. Our blog is about our family, mostly of Melissa. You can check out our blog at www.libertoblog.blogspot.com
    I started this blog when we found out that Melissa was on the way for our family and friends to keep up.
    I might start a new one some day just about Melissa life with CF as she gets older.

    Traci

    ReplyDelete
  34. EmilyJune 19, 2008 at 4:56 PM

    I'm 26, got a transplant (almost!) three years ago, and I write about CF, post-transplant life, and medical things related to transplant at

    http://bucketofparts.blogspot.com

    Emily

    ReplyDelete
  35. AnonymousJune 19, 2008 at 5:48 PM

    I am a 34 year old mom with CF.

    I write two blogs--
    1) About life as a mom with CF- domesticmoments.blogspot.com

    2) Education about the illness and related stuff
    cysticfibrosisawareness.blogspot.com

    ReplyDelete
  36. KristenJune 19, 2008 at 7:04 PM

    Hi Nate. I recently spent the past month reading your entire blog and it is definitely heartwarming and inspiring! I am Kristen and am 31 years old with CF. My blog is about trying to get pregnant and (hopefully) going through pregnacy with CF:

    http://cfpgjourney.blogspot.com/

    ReplyDelete
  37. Somer LoveJune 19, 2008 at 7:59 PM

    Hey Nate,

    What a GREAT idea!! I am 29 year old with CF and blog about my life with CF and my 2 lil pugs. I love meeting people with CF through my blog. Every story is always so inspirational. I am very involved in The CF community and educate and raise awareness whenever I can. I am an artist and I donate my paintings raise money to find that sought after cure!!

    My Blog address is:
    www.lovetobreathe.blogspot.com

    My brother has put together a web site for me for our annual fundraiser and that is:

    www.lovetobreathe.com

    Travel safe! You guys remain in my prayers as you start this new journey.

    Somer

    ReplyDelete
  38. ToriaJune 19, 2008 at 8:24 PM

    Hi, I'm Toria I'm 23 I have CF and have six month old son called Edward. I've had a blog for a while across various sites with limited success however I am trying really hard to keep my current one up to date.

    It's not specifically about CF, in-fact at the moment I'm having so much fun I don't have time for CF, however (if history is anything to go by )I'm sure in darker and harder moments it will come more to the fore.

    My blog addy is http://an-antithesis-of-sorts.blogspot.com/

    I think this is an EXCELLENT idea Nate, just reading the replies makes me realize once again that I'm never going through this alone.

    Love to this bizzare CF community of ours and of course your wonderful family xox

    ReplyDelete
  39. ChristyJune 19, 2008 at 8:30 PM

    www.colormehealthy.blogspot.com
    and
    www.caringbridge.org/visit/christyhamilton

    I post random thoughts.. some about CF and transplant on my blog, and use my caringbridge strictly for health updates.

    I am 37 year old CFer with a 12 year old healthy daughter. I am post-double lung transplant and pre-kidney transplant.

    ReplyDelete
  40. ChristyJune 19, 2008 at 8:34 PM

    oops.. my caringbridge link didn't work.. here it is..

    www.caringbridge.org/visit/christyhamilton

    ReplyDelete
  41. TiffanyJune 19, 2008 at 8:47 PM

    Hi!
    I'm Tiffany Christensen--34 (almost 35, yay!) year old CFer who has had 2 double lung transplants. My blog is sickgirlspeaks.blogspot.com and I post about things related to life with illness, my life post-transplant and Patient Advocacy.

    Thanks for doing this Nate! I have been thinking of Trisha all so often since I heard she had to go back into Duke. I'm so relieved that this looks like a small bump and you get to go home!

    Much Love!

    ReplyDelete
  42. NikkiJune 19, 2008 at 8:49 PM

    This is so amazing that you are doing this for all of us! I am a Mom to a 3 year old CF kid. Here is my blog that is just getting started ;)
    http://godsmightaswell.blogspot.com/

    ReplyDelete
  43. MamaJoanneJune 19, 2008 at 9:20 PM

    I am not in the practice of blogging, but want to! I am the mother of a 22 year old with cf. We have been following your life story for months after being introduced by Haley Palmer's CaringBridge website. We live in Tulsa and our daughter is in Dallas. I am interested in learning as much as possible and connecting with those whose challenges on this journey are similar. Thanks!

    ReplyDelete
  44. MamaJoanneJune 19, 2008 at 9:23 PM

    I am not in the practice of blogging, but want to! I am the mother of a 22 year old with cf. We have been following your life story for months after being introduced by Haley Palmer's CaringBridge website. We live in Tulsa and our daughter is in Dallas. I am interested in learning as much as possible and connecting with those whose challenges on this journey are similar. Thanks!

    ReplyDelete
  45. summerskyeb@hotmail.comJune 19, 2008 at 9:48 PM

    I am a 40 year old with CF diagnosed at the age of 2. I have kept a caringbridge site for about a year. It is a journey through a lung transplant evaluation and how that fit in my life as a wind instrument player on a worship team. Thank you both for having the bravery to share your story. I just read somewhere on the internet yesterday about a young man with CF who is post-transplant....he accepted Christ and is going to church because of the peace and openness he saw in your lives:):) That is awesome! My site is www.caringbridge.org/visit/karenbarach

    God Bless

    ReplyDelete
  46. AnonymousJune 19, 2008 at 11:05 PM

    I am 36 with CF and awaiting double lung transplant (currently at the top of the list). I've been told I'm also at signifiantly higher than usual risk for lymphoma because of my EBV status, so I can relate a little as to what your wife is going through.
    My blog is about God, life, CF, and lung transplant.

    ReplyDelete
  47. AnonymousJune 20, 2008 at 12:30 AM

    Okay, my blog is fairly new. I am a CFer who's 31 years old, with two kids (11 years old and 2 years old) and I am waiting for a double lung transplant in Michigan. My blog address is based off my fave song (thousand foot krutch) "breathe you in." It is breathingYouin@blogspot.com. I am praying for you all, Nate, Tricia and Gwyn and always will.

    Looking forward to checking out other blogs!

    ReplyDelete
  48. FroggymamaJune 20, 2008 at 1:26 AM

    What a fabulous idea Nate!

    I have a daughter "Froggy" with CF. She's 2 and a half.

    I'm a writer and stay-at-home. I've put my career on hold to keep my kiddo healthy and to be her super Froggymama and advocate. My husband is in school to become a Respiratory Therapist, and he is a wonderful Froggydadda.

    I blog almost everyday and sometimes it's the only thing that keeps me sane.

    I think about you guys everyday and keep you in my prayers. Take care. Elise(Froggymama)

    ReplyDelete
  49. FroggymamaJune 20, 2008 at 1:27 AM

    Duh, I forgot my link, kind of important!

    www.froggy-mama.blogspot.com

    ReplyDelete
  50. EmilyJune 20, 2008 at 1:32 AM

    Thank you so much for doing this- I've been wanting to connect more with other CFers through blogs!

    I just started a blog a few months ago. I decided to begin blogging about my life with CF as God continues to bless, challenge, grow me and also use my life and story for His glory.

    I'm 25 with CF and live in california
    :)- Emily

    http://journeywithem.blogspot.com

    ReplyDelete
  51. KristenJune 20, 2008 at 1:39 AM

    I'm Kristen, and I've been bloggning about my daugther Kivrin's CF and life in general for almost 4 yrs now. Kivrin is 3.5 yrs old with CF and 22q11.
    its www.xanga.com/shaylasolo
    Laters
    K

    ReplyDelete
  52. hollyJune 20, 2008 at 2:58 AM

    Hello...
    I have a two-year-old daughter, Ojaio with CF. My blog is www.ojaiolux.blogspot.com. I am only a few months into it, but so far my goal is to spread awareness for CF by sharing our experiences. Please check it out.....Holly.

    ReplyDelete
  53. Chatty FamilyJune 20, 2008 at 7:53 AM

    Hi! I am a mom of two girls and a boy. My son is 2 and has CF. I have a blog that can be added to the "family" category. I write about our family happenings and CF to keep my family updated and friends aware. Like some others, I'm not sure if you want a family blog, so use it at your disgression. We are trying to keep CF from being the center of our lives for as long as possible. Thank you for your blog and for sharing your family with us. www.chattyfam.blogspot.com

    ReplyDelete
  54. AnonymousJune 20, 2008 at 10:20 AM

    Hi, I am 27 y.o and have good ol CF. I am 8 years post tx and yes there are many bumps in the road but I am truely greatful for being able to live the best 8 years of life with my husband that were almost taken away from me. But with the help of God guiding the doc's at Duke, I was able to breath again...God is good all the time! God bless you and your family you have been in my prayers since the blog started:)

    ReplyDelete
  55. AnonymousJune 20, 2008 at 10:24 AM

    hey how about I forgot to put my link,https://jayljern.blogspot.com/

    ReplyDelete
  56. Blankenship BabblesJune 20, 2008 at 10:48 AM

    Hi Nate...Not sure we would be one you would want to include but we blog often on our fundraising for CF...and started a blog for our Great Strides team to keep in touch on...it's www.jeffsentourage.blogspot.com

    My name is Mandy...my identical twin sister (Sam) and I started this blog in memory of our brother, Jeff...or as we called him, Bubba. He lived 26 wonderful years with CF, found the love of his life, had 3 amazing furbabies (that were his life) and along the way touched numerous lives with his courage and dedication to finding a cure. Our brother was on the double transplant list, but didn't make it...but we know he is smiling down on us and is proud of us for keeping his dream for a 'Cure Found' alive. We talk about all the amazing times we had with him here on our blog, and about the things we feel on a regular basis without him in our everyday lives. It is amazing how every CFer has a presence about them that is unlike any other...we have been following you and Tricia for over a year now...and you have given us HOPE. Thank you for that...

    ReplyDelete
  57. LeslieJune 20, 2008 at 11:01 AM

    Great idea! We have two beautiful daughters. Our oldest is 5 w/o CF and our youngest is 3 with CF. We are also in the process of adopting. So our blog is about both of our children, including the CF updates. It is my desire for others to learn more about the disease but also know that God is in control of it and our lives. I have already been able to connect with a few other CFers or mom's of CFers, through blogging, which has been very neat! And your blog (Nate) has been such an encouragement to me (and many of my friends and family)! Thanks so much!
    Our blog is: www.schellenbergs3as.blogspot.com

    ReplyDelete
  58. JessJune 20, 2008 at 12:03 PM

    My name is Jessica and I'm a 21 year young CFer who is getting closer to needing a transplant. I'm from Tampa FL and a full-time student at USF who blogs once in a while, usually about my health.

    Love your blog and am always keeping your family in my thoughts!
    www.xanga.com/letmebreathe18

    ReplyDelete
  59. AimeeJune 20, 2008 at 1:52 PM

    Hey there I am Aimee and I have CF. I am also a military wife. My blog is titled The Adventures of a Military Wife with CF. the url is www.larryandtink.blogspot.com

    ReplyDelete
  60. UnknownJune 20, 2008 at 2:08 PM

    Tricia and Nate
    I am not sure how I got to your blog someone connected me possible thru the work I'am involved in in Africa. We are involved in fighting for basic medical needs for Nigerians and work at a clinic called Faith Alive in Jos .May God bless and protect you both and I will pray for God to be present in all of your trials.
    with great hope
    russ mccahan

    ReplyDelete
  61. UnknownJune 20, 2008 at 2:09 PM

    Tricia and Nate
    I am not sure how I got to your blog someone connected me possible thru the work I'am involved in in Africa. We are involved in fighting for basic medical needs for Nigerians and work at a clinic called Faith Alive in Jos .May God bless and protect you both and I will pray for God to be present in all of your trials.
    with great hope
    russ mccahan

    ReplyDelete
  62. UnknownJune 20, 2008 at 2:10 PM

    Tricia and Nate
    I am not sure how I got to your blog someone connected me possible thru the work I'am involved in in Africa. We are involved in fighting for basic medical needs for Nigerians and work at a clinic called Faith Alive in Jos .May God bless and protect you both and I will pray for God to be present in all of your trials.
    with great hope
    russ mccahan

    ReplyDelete
  63. KatieJune 20, 2008 at 2:37 PM

    Hi Nate, your blog is great - I read it all the time and have followed your story for a while now. I am almost 30 and have CF. My blog tells a story of my desire to have a family with details of all the problems I encountered along the way. Sadly things did not work out for me. I stopped writting the blog last year but it may be interesting to anyone else out there with CF who discovers there partner is a carrier!

    katie-lou@blogspot.com

    Take care,
    Katie

    ReplyDelete
  64. OceanDesertJune 20, 2008 at 3:16 PM

    Hi, What a good idea, Nate! I'm 30, have CF and have been listed at UCLA for a little over two years now for a dbl lung tx. I started my blog as a way to keep family and friends updated when I get the tx, but I also blog regularly about CF and my blessed life with the best husband, family, and friends a girl could ever ask for!!!

    ReplyDelete
  65. UnknownJune 20, 2008 at 4:02 PM

    Hi I'm Salty and Sweet. Salty for CF and Sweet for diabetes. I'm 31 and was diagnosed with CF related diabetes about 7 years ago, but only recently come out of denial with it. I couldn't find any info on the net about CFRD except medical papers so I started my own blog. A little CF a little more CFRD and a lot of me! :)
    My blog is at Salty and Sweet.

    Thanks Nate for your blog. I love reading about your family. So nice of you to share it with us! :)

    ReplyDelete
  66. 65redrosesJune 20, 2008 at 4:43 PM

    Hey Nate...

    Thank you from the very depth of my heart for posting that video...it has had over 6000 hits! Also my dad is leaving for his ride tomorrow and wants to thank you for your kindness and for donating to his cause. In your difficult time you still are so generous.....thank you.
    As you know, I am Eva, with CF, 8 months post transplant and also give thanks to God for the glorious gift of breath. I try to keep updating as my normal life picks up speed. It was easier to post when I was sick all the time! Now I am busy out there living!!!!! Tomorrow I am paddling on a dragonboat team called the 'Gift of Life' with other transplant recipients and some mothers of sons who have died and were donors. Our team is dedicated to giving thanks to our donor families and to raising awareness that organ donation WORKS!!
    I write about CF, transplant, paddling, life, love, God and the documentary that is being filmed about my life.
    Thank you Nate for helping us all to connect and know that we are not alone.
    Eva
    65redroses.livejournal.com

    ReplyDelete
  67. KathieJune 20, 2008 at 4:56 PM

    I am Kathie and my daughter has CF. I have been keeping up with her stuff on carepages, but I am trying to transfer it to blogger. http://cfforsamantha.blogspot.com/

    Kathie

    ReplyDelete
  68. 65rosesqueenJune 20, 2008 at 5:56 PM

    Nate: I blog about my daughter, Megan, who is 21 and awaiting a double lung transplant. We move to St. Louis in 6 months to be activated. We live in Louisville, KY now. Her address is:

    www.caringbridge.org/visit/meganpayne

    God bless you and Tricia. We pray for you guys everyday.

    ReplyDelete
  69. The BrownsJune 20, 2008 at 9:16 PM

    Hi,
    Im alisha and Im 26 with CF. My Blog is named The Browns...Life in Clarksville. It's a good way for extended family to keep up with the latest on me and my husband.
    The name is http://brownclarksville.blogspot.com/

    ReplyDelete
  70. Will's familyJune 21, 2008 at 1:11 AM

    Hello
    I am a mother of a 34 year old man who has been dealing with CF for many years. He was able to get a double lung transplant on the 23rd of Feb. this year. He has been in the University of Utah hospital intensive care since then. On Sat. we will have been here 16 weeks. He has had many set back but still feels God is working to make this all worthwhile.
    His blog spot is willharbison.blogspot.com
    We had to leave Idaho to come to Utah for the transplant and so we set this blog spot up for all our wonderful family and friends to follow our journey. It has been a God send for us since this road has taken many bumps. We have been blessed by many, many people praying many, many prayers for healing for my son.
    God bless you and your sweet family.

    ReplyDelete
  71. CarlaJune 21, 2008 at 12:58 PM

    Hi! I was just checking in and I saw this post, and I knew I had to comment.

    I'm Carla, 21 (soon to be 22) with CF, and try and blog daily. Currently I am in Europe, so it's not as often, but I will be home in a week.

    the address is
    http://dancing65roses.blogspot.com

    ReplyDelete
  72. LaurenJune 22, 2008 at 1:46 AM

    I have 2 blogs. One is called Breathing Deeply: My Life with CF and the url is http://livingwellwithcf.blogspot.com it's the personal journal sort of blog. My other blog is called Blogging about CF and the url is http://understandingcysticfibrosis.blogspot.com
    There I post informative articles about things relating to CF. I'm always adding to it. It's been in operation for about a year now, and has over 100 articles posted to it.

    ReplyDelete
  73. RebeccaJune 22, 2008 at 11:22 PM

    Hi, Nate. I am Rebecca and have a two year old son, Blake, with CF. I am not computer savvy enough to have a blog, but I do have CaringBridge page that I update quite frequently. If that fits your criteria, here it is:

    www.caringbridge.org/visit/blakesmith

    Your family is such an inspiration to me and many other CF Families. Thank you for bringing CF to the attention of so many in the world.

    God Bless you and your family, Nate!

    ReplyDelete
  74. Lil' Chris' MomJune 23, 2008 at 10:42 AM

    Hi Nate and Trisha,
    I blog about my son Lil' Chris who has CF. He just turned 1. The reasons I started the blog was to keep a record of everything (different meds, doctor visits, colds, etc.), and to keep far away family updated, and to get in touch with other CF moms or families or CFers to get good advice from them.
    So far, I've learned so much from other CF moms that read my blog like...easier ways to give meds, to watch out for the purple spots that the Prevacid Solutabs leave on clothes, 20 minutes is better than 1 hour for the enzymes to work, and so much more.
    Now, I'm finding that I'm not only getting good advice, but that unknowingly, I've been giving good advice to others! I've been emailing a CF mom(who reads my blog) of a 27 year old daughter who never heard of the Vest. Thanks to my blog, she is now trying to get one to better her life! There is nothing I would love more than to help others. It is such a great feeling!
    I'm so glad you are doing this, b/c I've been wanting to get in contact with more CF moms and CF families and CFers! I just didn't know how. Thank you so much:)
    My blog is acure4lilchris.com
    Thanks again,
    M

    ReplyDelete
  75. JulieJune 23, 2008 at 1:21 PM

    I am the wife of a 27 year old CFer. We have 3 children, Tristan Cassandra and Ryland. Our blog is www.our3.blogspot.com and I also run a CF/male infertility website at www.cysticfibrosismaleinfertility.com

    ReplyDelete
  76. life with usJune 23, 2008 at 1:33 PM

    You inspired me to start a blog!! I am the parent of a cf child. http://gustafsontimes.blogspot.com

    Thanks Nate

    ReplyDelete
  77. TinypoppetJune 25, 2008 at 9:57 AM

    This comment has been removed by the author.

    ReplyDelete
  78. TinypoppetJune 25, 2008 at 9:59 AM

    Ooops, I removed it. Don't know how....

    Anyway it said:

    Emily, 24 with CF, UK, double lung transplant January 07. Also Vice-Chair of Live Life Then Give Life :)

    www.pinkandsmiley.blogspot.com

    www.livelifethengivelife.co.uk

    ReplyDelete
  79. TiffanyJune 27, 2008 at 10:01 AM

    Hi Again,

    Ever since you posted this, I have been slowly making my way through the comments and checking out people's blogs...holy cow! There are some amazing people on this blog roll. I am so grateful you did this--I am "meeting" such inspiring, interesting people that I would have never seen without this post. Thank you so much for doing this. I hope you still plan to organize these in a blog roll because, just as you are amazing, there are so many people on this list that the world needs to know about!
    Thank you, thank you, thank you!!!

    Tiffany
    www.sickgirlspeaks.com

    ReplyDelete
  80. AliciaJune 28, 2008 at 11:38 PM

    http://experiencingeachmoment.blogspot.com/

    I am a SAHM to Timothy, 5 yrs old, no CF, and Samantha, 2 yrs old, with CF. My blog's focus is learning to embrace each thing we face, knowing that whether it seems good or bad it always gives us the opportunity to depend on Christ more than we were before. Because of that, it is not always about CF. However, I blog about CF the 8th of every month because Sam's b-day is the 8th. Sometimes it's about her quarterly appt, sometimes it's explaining to my friends a particular treatment we give her, and recently it was about our first Great Strides walk where we raised over $3300! I tag my CF posts "Cystic Fibrosis" which should help anyone trying to weed through all the other posts. I'm looking forward to creating a CF blogroll of my own out of these comments. Thanks CF Husband!

    ReplyDelete
  81. ElizabethJune 29, 2008 at 4:42 PM

    Hi -- I'm going on two weeks with the new blog (abandoned previous one, which is not a great recommendation, but I hope to do better). Write occasionally about my partners CF, lung Tx (in 2001) and subsequent complications (cancer 2x, largely), when they are major players in our life. Address is:
    www.liam411.blogspot.com

    Best to you and yours; hope the Rixtumab is working great and the treatments are going well.

    ReplyDelete
  82. JessicaMDayJuly 2, 2008 at 9:56 PM

    Jessica, mom to 2 girls, Jaelyn age six and Macy age 1. Jaelyn was dx'd in January 2005, at age 3. I am always looking to connect and learn from others living a life of CF. Our pages are...

    www.myspace.com/JessicaMDay

    and her blog

    http://blogs.cysticfibrosis.com/index.cfm?forumid=815

    ReplyDelete
  83. UnknownJuly 3, 2008 at 12:29 AM

    This comment has been removed by the author.

    ReplyDelete
  84. UnknownJuly 3, 2008 at 12:31 AM

    Sorry, I put the wrong url in my previous comment so I deleted it.

    My name is Becky and I blog occasionally about my son Ricky, who is now 12.5 and has CF. His blog is at http://blog.cfboy.com.

    I've been lurking on your blog for some time now. I especially love the pictures of the family you recently posted!!

    ReplyDelete
  85. christineJuly 24, 2008 at 8:17 PM

    I have a 2 year old daughter who was diagnosed with CF 2 days before Christmas 2007 after months of "unexplained" illness. We do not have a blog but do have a caring bridge site.
    www.caringbridge.org/visis/rebecca1

    ReplyDelete
  86. RobynAugust 5, 2008 at 9:29 AM

    Hey there, I'm a little late with this post but I have a blog to add. I have a blog about my life with cf in a military family. I'm 34 with a 3 year old daughter and a Marine husband. I'm new to blogging but I'm trying to get better about posting more often.

    my address is:

    http://pwcf.blogspot.com/

    Thank you Nate, I enjoy reading your blog. You have a beautiful family.

    Robyn

    ReplyDelete
  87. AliciaJanuary 3, 2009 at 12:04 PM

    My husband and I just started a new CF blog that deals with CF awareness and fundraising. We would love for it to be a great place to exchange ideas!

    http://stridestocurefound.blogspot.com/

    ReplyDelete

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