Saturday, August 14, 2010

Where are YOU?

Ever since Jim and I have been out many people have mentioned how much they love reading the blog - thanks for that!

Because we have both been amazed by the number of people following us, I'm curious where everyone is from.
So...where are YOU from? How does CF affect you? What's your story????

You can comment without signing into an account and there is no need to provide your name or personal information. I know some people have had some problems posting, so here are instructions on how to comment:
  • At the end of one of the post, click on "comment";
  • Scroll down to the blank area that says "Post a Comment" and type your message;
  • Where it says "Comment As:" click on the drop down arrow;
  • Click on "Anonymous";
  • Click on "Post Comment";
  • At "word verification" area type in the word typed in blue;
  • Click on "Post Comment";
Walla...your comment should be posted!

We are from Bethlehem, PA! I don't know if Jim indicated where we are from in his status.

I'm really hoping to hear from many of you!

Jim is continuing to eat with no pain (a bit of cramping, that's it). He is getting stronger and gaining weight (up to 136 lbs) every day. Kicking butt and takin' names, baby!!!!!

Quotes:

"Do we have any waffles?" Jim
"Yes, in the basement. I'll go get them." Denise
"No, that's alright, I can do it" Jim
"Oh yeah, I guess you can!" Denise
(I've been doing all of the steps around the house for the last year or so because Jim's lungs were not cooperating. He did the step to go to bed and that was pretty much it.)

"I know, I'm stretching the 'in sickness and health thing'." Jim after I told him he better be careful or he won't make our 17th yr anniversary in September. ;)

"We need to go back to Cancun so we can climb that pyramid that we wanted to!" Denise

Finally, things are looking up (knock on wood, plastic, metal or anything else in reach)!








28 comments:

  1. I've followed your blog since I found it on cysticfibrosis.com.
    It's been really helpful for me to hear your story as I soon face transplant myself, yet I didn't know anything about it until I read your blog and a couple of others too. At first I didn't think I wanted a transplant, it seemed like such a Frankenstein-type surgery. But, seeing Jim and others come through it and begin to live again convinced me that I could do it too. I'm 51 with the dreaded end stage CF and am going to be listed next week at Stanford (exciting/scarey)! My very supportive husband, I and our big dog Charlie live in the San Francisco Bay Area. Thanks for taking the time to share your story.
    -Barbara

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  2. Good luck with being listed next week, Barbara! It is a crazy and long journey! Glad to hear that you have a supportive husband. Keep me posted! Here's to a speedy call and no dry runs!!!!
    Denise

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  3. I have been following your blog since Piper mentioned Jim's lung tx on her facebook page. I am living just north of Hartford, CT. I am 35yo woman with CF. I was diagnosed only a year ago, but have spent about 6 months of the last year on IV ABX. My brother was diagnosed at birth and my sweat test at 5 years old was positive, but i was not symptomatic. They redid the sweat test last July and the blood genotype and here I am...

    You guys are an amazing example of strength for all of us. I am (not currently) a marathon runner, a triathlete, a professional, a wife, a mother.

    Life is good.

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  4. I've read your blog since I found it on Jessica N. blog list. I also have a blog if you'd like to read it. I have CF and was diagnosed at birth. My home is in Mississippi, but we relocated to Durham, NC because of Duke University's transplant program. I am currently recovering from my transplant I had on July 1st. Knock on wood, so far I have only had minor setbacks. I had talked with Jess and ended up staying at the same place she was staying. She seems to have a lot of the same problems you've been having. I'm glad to hear you are finally getting better. You and Denise are an inspiration to all of us going through this with your strength and love for each other. Bless you both.

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  5. Hi Jim and Denise! I am from eastern North Carolina. I don't remember how I found your blog. A link on another blog, I believe. I don't have CF. I have congenital bronchiectasis, but my symptoms are very much like those of CF. I have followed along with your progress and the progress of several other bloggers who have gone through transplant. It is such an inspiration as well as an education for so many people out here who are on different but similar journeys. I'm so glad to hear you are doing better! I hope you're stomach problems are behind you so you can fully enjoy those pristine lungs! Thank you both for sharing!

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  6. Tara - hope you are feeling better now. That's great that you were asymptomatic for so long but sucks that you have to deal with it now!
    Pam - Congrats on your recent transplant! Good to hear (knock on wood) that your setbacks are only minor. I am going to check out your blog. I expecially love reading about THE CALL!
    Autum - I just read a bit about congenital bronchiectasis. From what I read it does sound like a close relative to CF. I checked out your blog and see that you have the huge machine that goes with "the vest" too!

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  7. Hi Jim and Denise, I have been following for several months. Can't remember how I found you. My son had his tx eval in Feb and I started looking for info and found you soon after. My son is 27 and severly learning disabled so unable to read and research this all himself. I'm trying to give him good information so he can decide how best to proceed. You two have really helped so much. I tell my son how Jim is doing. The good and the difficult - thank you so much for your honesty. My son is not listed as his lungs have been going between 50% fev1 and 28%. We are blessed that he has been coming up after IVs. We are from Central Wisconsin. My son is seen at UW Madison Hospital and Clinics. God bless your journey. You are BOTH an inspiration.
    Gina

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  8. Hi Jim & Denise!!! I too have been following your blog for a while now -- I have it on my RSS reader so I don't miss installments...

    I too have cystic fibrosis... I too had a double-lung transplant... Last April, I celebrated two pretty remarkable "birthdays" for any CFer / lung recipient... I celebrated my 10th lung transplant anniversary (rebirthday) and four days later, my 50th birthday for the rest of my body...

    It's been a pretty amazing journey -- and I hope Jim and you have a journey similar to the journey me and my wife have shared...

    You take care... I love your quotes at the end of your pieces...

    Love, Steve

    Steve Ferkau

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  9. Oops -- forgot... Sorry... I live in Chicago.

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  10. i don't get to read every post, but i'm following from santa cruz, california.
    i have cf, & had a lung tx last year. i forgot how i learned of jim . . a cf forum perhaps? hope you guys are doing good!

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  11. Hi Jim & Denise!
    I’m following your blog from Alberta. I think we connected through Piper back in March. I am so happy to follow Jim’s progress. Keep up the good work! I had once commented on your blog that there was one surgeon at my transplant centre that does the same incision that Jim received. Even though it was a small chance, I had a feeling I would have the same. Three weeks ago, I got my call and had my double lung transplant! Sure enough, I had six chest tubes and the same incision!

    Thanks for sharing your story with us. Denise, you’re doing an awesome job supporting Jim. Sometimes I feel like we can’t thank our support people enough!

    Small world- I have some friends that recently got married in Bethlehem.

    Wishing you all the best,
    Sandy

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  12. Hi Denise and Jim!
    I'm a reader from Holland, and I love your blog!
    I am a 22 y/o girl with CF and received new lungs in october this year.
    Unfortunately I got early Chronic Rejection and am now in the hospital awaiting an other Transplant.
    I wish you all the best and lots of strength from the other side of the ocean!
    Love, Djun

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  13. Gina - thank you for your many comments on the blog throughout our journey. I'm happy to hear that it is helping you because that is one of the reasons Jim wanted to start this blog. Reading others blogs have helped us tremendously from making the decision to get listed and now, post-transplant.
    Steve - I read about you in one of the CF boards. I believe your donor was a woman that loved soccer. I appreciate your word of wisdom. Happy 10 yr tx and 50th birthday to you!
    Leah - I think your blog was one of the few that I started reading. It gave me such insight of what to expect post transplant! I continue to check in on you.
    Sandy - I do remember hearing from you before. Happy 3 week anniversary on your transplant! Wishing you a smooth healing process.
    Djun - Wow, a reader from Holland, very cool! I think I saw a comment from you once before. Not cool that you are in the hospital waiting again for a transplant. Hopefully you'll get your call soon! Strength sent to you too!

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  14. Denise and Jim thanks so much for your well wishes and reaching out to us. As you have experienced we are in the initial days after transplant which is a roller coaster. Good moments, bad moments. Lungs are so far doing great. Glad to hear you are doing so well Jim!
    Heather
    Luke's mom

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  15. I'm not sure where I found your blog, but I have CF and it was probabvly when I was searching for information about transplant. It has been really helpful to read your experiences. I currently live in Newton, MA, but believe it or not lived in Bethlehem for about four years with my ex husband, so it brings back some good memories to see you talking about enjoying musikfest !!

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  16. We follow your blog from Tampa, Florida. My husband is 31 years old with CF. He found your blog right when Jim got his call and we have been keeping up with his progress since.

    We are (hopefully) a long way away from needing a transplant, but the whole idea is getting a little less scary after seeing how well so many CFers recover and do well after. Thanks for sharing the good and the bad of your story. We hope things start getting easier for you guys really soon.

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  17. Hey! Ya'll know me, I honestly don't remember how I found your blog either. . .it's been a while :) It was soooo long ago that Jim was actually posting. . . hahahaha. My shout out comes from Phoenix, Az & I also represent Eastern Idaho :)

    Love reading about how things are going post transplant life.....it still amazes me and I have had a while to get used to it :)

    Much love to you guys!

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  18. Jamie, I will start to post again soon. I hadto get my head straight before I took that step. Most of what I had to say up until the last week may not have been the most possitive of a message, and Denise is doing so well.

    Thank you everyone for your messages, its very cool to see and hear from you all.

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  19. Been following since I noticed that you were following my blog, and also knowing of you through Piper. I'm Talana, 28 w/cf, from Vegas, though I'm an Oregon girl at heart, living there for over 27 years. Just started the tx listing testing, though I most likely will not be listed anytime soon, they want to have the testing done in case I do get sicker.

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  20. Heather – no problem. Hoping Luke has more good days than bad and that his vent is removed soon and stays that way. Make sure you take care of yourself (easy to say, hard to do…I know).

    Anonymous – glad the blog is helpful. Funny, you’re the 2nd person that has mentioned Bethlehem!

    Jamie – your blog is one of the firsts that I started reading back in Jan or Feb 2009. You helped me out a lot with what to expect and also educated me in the CF ways of thinking.

    Talana - Best to get the testing done and out of the way. Hopefully you won't get sicker any time soon!

    PLEASE KEEP THE COMMENTS COMING! I’m not going to blog for a bit because I want to hear what you have to say.

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  21. Hi J&D,
    I found your blog by searching the net and found it a great way to stay in touch. I have a very precious nephew that has CF and remember clapping him when he was young. He has inspired me through life knowing what he has gone through and how hard he pushes. I live in Louisiana. Glad to hear the stomach is easing up.
    LOVE UJ

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  22. I forgot to mention he wound up with the best wife in the world!!!
    UJ

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  23. Awww, thanks UJ! I had to read your comments twice before I figured out who you were. Anyway, I hear your nephew is now a new owner of a very pristine pair of lungs!

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  24. Michelle here... started following you guys when I read of Jim's tx on cf.com. I am a 29 year old CF widow, lost my husband in March of 09. I still stay very much involved in the CF community. I'm following your journey from the "D"... or better known as Detroit, MI.

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  25. Michelle,
    All I can say is I'm so sorry...

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  26. hey there!
    just found you on piper's blog. i'm from vienna, austria, do not have cf or any other diseases and read eva's blog (65redroses) for quite some time until she passed. thanx to you guys i'm now getting involved with the cf community over here, trying to help people who are not doing as fine as i do.
    all the best to you & good luck from over the pond!

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  27. Hi, I am Kirkland, WA and received my double lung TX on 5-14-10, I think only 4 days before Jim had his. I have CF and had my transplant at Univ of Wash. Go Huskies!

    Jocelyn

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