My Answers

Q: Does it scare you to think that one day you might have to have a lung transplant? If so, what about it scares you the most? Does it help hearing other post-transplant CFers talk about transplant, or has it made your fears (if you have them) worse?

A: It doesn’t scare me to know that I will need a Tx one day! I will embrace that day when it comes.  Hearing post Tx stories only reassures me that this is something that I will want to do! All my Cystas have had amazing experiences. I can’t wait to run just because I can! J

Q: Can you tell us a little about your work with the Heroes of Hope Panel? How did you get involved with that?

 A: The Heroes of Hope program is sponsored by Genentech, Inc., to recognize and salute unique individuals with cystic fibrosis who are stars in their own right for striving to live full and productive lives, and for being role models of hope to others, while continuing to manage their healthcare needs.  Click here to see our latest Hero of Hope Lauren Beyenhof. She is also on my blog roll, you can read her blog here. I was so excited to be given the chance to record her podcast. You can listen to it on the Heroes of Hope Website.

 I sit on this panel with such an amazing group of individuals. I was given this opportunity by a really great friend. She left the CF clinic as a nurse practitioner to go work with Genentech over 1o years ago. She is truly amazing! I am so thankful to be a part of such a wonderful program.

 

Q: Going along with Christy's post, have you ever thought about being evaluated for transplant? Has this ever been discussed?

 A: I have never been evaluated for Tx. My docs have never even brought it up yet. I am sure I will know when the time is right. I am So thankful that I have been able to maintain me FEV1 and I hope that can continue for a long time. 

 

Q: What does it feel like to be the mommy of the two cutest pugs west of the Mississippi?

A: I love my lil babies they truly are my life!! They are my “kids” and they are the best medicine a girl could have. They constantly are making me laugh and their love for life and each new day is inspiring! Read this post about how a dog celebrates life.

 

Q: How do you stay so positive?

A: hmmmm Well I am so blessed with an amazing support system my family and friends are the best. I believe when you are faced with a challenge you have two choices.  You can either, rise-up and overcome your challenge, or you can do nothing and allow your challenge to conquer you. So I choose to stay positive and live each day to the fullest. I have a bracelet that I never take off with the quote engraved on a silver heart….“Nothing is worth more than this day” I promise I have my moments, just not ever body gets to see them. Feel privileged if you have seen me in a moment :)

Q: What, if anything, would you change (future or past) about your CF treatment, they way you, or doctors have treated your CF? How do you keep the motivation to do your treatments on a regular basis, without any lapse? Do you ever get frustrated and have days where you just say, "The heck with it...I need a break!"?

A: For the future I would like to see a cure in my lifetime. 

As far as the past I wouldn’t change anything. I never take a break it sounds nice but in all reality I know it needs to be done. Don’t get me wrong I wasn't always as compliant as I am now. I was a typical teenager, just ask my parents.  When I started taking action and doing my treatments my self and going to my doc apts myself they were trusting me with everything. I didn’t want to let them down but there was still moments then that I would do things a little half ass, and put things first like friends and work. I guess I would regret that but then again it is part of growing up. Now today I go above and beyond when it comes to my health. I try anything and everything. My thoughts are just add it to the list J

 

Q; Are you taking care of yourself and staying out of the hospital?

 A: ABSOLUTELY!!!! See above… Last week was my jointaversary I have been out of the joint now for a year!

Q: When are you coming to Boston to visit??? Love you cuz!!! Oh, and when are we going to Ireland?

 A: I hope to soon, I really would love to come to Boston while you are still living there. I think Ireland 2010 should be in order! If the economy is still shitty Maybe 2012.

 For St Patty’s 2007 I planned a HUGE trip to Ireland and it kept getting bigger and bigger with all my fam. Remember my last name was McNeill we are Irish so we thought the whole fam should get together and go there for St Pattys day. Well the weekend before we were to leave I got the flu it kicked my butt! I went to the doc as soon as Mon rolled around to get some ABX so I could make my trip. Well I felt horrible I don’t even know how I drove to the doc I was so weak and when I got there I had to lay down I couldn’t even keep my head up. I got the ABX and went back home to rest. I started getting nervous about the flight so I ordered O2 for the way there.  Well Wed morning I still didn’t feel any better so my fam was off for the airport and I was off to the jointL I was satting barely 90 on 6 liters of O2 I am glad I didn't go to the motherland being that sick. I went to Ireland in 2002 for St patty’s day and once when I was 12. I'll post more about that next week when we get closer to the  big day!

 

Q: Would you ever want to live in another state? Have u lived in UT your whole life?

 A: I would love to live in San Diego. I love it there and I really love being at sea level. When I went to Newport beach this summer on room air my o2 was 99% I rarely get that here with o2 on. I was born in NJ but moved to Utah with my Dad’s job when I was 9 months old. Traveling is key I think it keeps me sane. I don't think I could really every move unless we could pack up my family and friends too.

 

Q: I am a jean fanatic... always on the search for 'the best pair' that fit 'perfect'... What is your fav kind?

 A: I don’t really have a fav kind. I have a pair of Ernest Sewns that I love and you can tell because I am getting a huge hole on the back upper thigh. I also love my Rock n Republics. I was Savvy Manager at Nordstrom so I have lots of great pairs.

 

Q: Would u ever go back to school? If so, working towards what degree?

 A: I don’t think so. School isn’t for me, I have diagnosed my self with adult ADD J If anything I would maybe take some classes here and there. When I went to school my degree was in Art. Those were the only classes I liked. All the other classes you would think they were my art classes by looking at all my notebooks, they were covered with doodles.

 

Q: When did you start painting?

 A: I have painted for as long as I can remember, But started getting serious about Art in High school

 

Q: What are you non-health related goals for the future?

 A: I have a ton of goals and things I want to accomplish. I have a bucket list and I am slowly crossing things off. One day at a time I guess, and this year being that I will be the big 30 I hope to cross even more off that list. Problem is I keeping getting these big ideas, and the list keeps getting longer and longer.