Cystic Fibrosis Lung Transplant

[dshmechanic]

WOW....your video is an inspiration! It serves as a reminder that miracles DO happen, and that we should never take for granted what the good Lord has provided for us. I hope you are well, and continue to do well for decades to come! :)

[Jaywbarrett75]

I'm 36 years old and today makes 1 month since I had my double lung transplant @ Brigham and Women's Hospital in Boston by Dr. Camp! I got a great set of lungs from a great person and their family who gave me and my friends and family those lungs now that have giving me new life. I was at 15% lung @ the time of my transplant, now at my first post-op appointment I was at 67% and will go higher as I heal more and with exercise.

[buggerjlewis]

@Jaywbarrett75 Congratulations! WOW 67% one month post is great. You'll be amazed at how wonderful 90-100% feels!! I wish you the best with your post transplant recovery. Your Donor and your Donor family are in fact Heroes! I would love to get a follow up from you in the next months/years and beyond :)

[Jaywbarrett75]

@buggerjlewis I MOST DEF WILL. I ACTUALLY HAVE A APPOINTMENT NEXT WEDNESDAY.

[Jaywbarrett75]

@buggerjlewis It's up to 74% as of today. O2 no less then 99%.

[buggerjlewis]

@Jaywbarrett75 amazing! Keep it up :)

[dollop51]

hi my names melissa I'm 25 and have cf... I just had to have a double lung transplant jan23 2010 and am doing great so far thank god* I also had my transplant done at pittsburgh it is the only hospital that would take me i was in so bad shape ..and am i so glad i went there becuase i wouldn't be here right now ...I also know dr.pilewski he is a awsome guy and also know maureen and julie is my lung cordinator...it reallly is the best place to go they will do anything they can and hate giving ..

[TheDucky89]

wow! how did you manage to get a transplant with cepacia?

[buggerjlewis]

@TheDucky89

That's the miracle of it :) Pittsburgh is the only hospital I know of that does them.

[texnation]

@buggerjlewis At Duke now with B cepacia waiting on mine!

[buggerjlewis]

@texnation I am so happy to hear other transplant centers are listing Cepacia for transplant. I hope and pray you get lungs and everything goes well for you. If your wait starts becoming long you can also consider being double listed as well. . .it can increase your chances for "The Call". Keep me updated I would love to know how it goes with you! :)

[buggerjlewis]

@texnation Just checking in on you. . .did you get lungs yet? I hope so and I hope you are living life with a full breath of air :) Let me know~

[texnation]

@buggerjlewis I got my lungs on June 30, FEV1 were at about 18% and are now around 71%, thanks for checking up, I just got cleared to move back home this week. Hoping to start training for a 5k, if my body can handle it.

[buggerjlewis]

@texnation WOW, That's Amazing :) It's an incredible feeling to be able to breathe huh? I just completed a 5K last weekend. . .set a goal and work towards it :) We are are only competitor and we are already winners!! Best Of Luck! Congrats!!!!!

[texnation]

@buggerjlewis Its pretty great, how long did it take you to work up training for it?

[buggerjlewis]

I lost ALL of my muscle mass post transplant. I was bedridden for MONTHS! SO, I had to rebuild. Post transplant I was skin and bones and weighed under 70 lbs. It has taken me a few years to get good muscle mass & feel ready to tackle a 5K. but once I set the goal I trained seriously for about 2-3 months. There is a great free program called 'couch to 5K' check it out it will help build up endurance/strength at a good pace. Best of Luck!!! You can do it :)

[texnation]

@buggerjlewis Thanks a lot, I haven't had as many complications fortunately, but can only run in 1 minute stints at the moment and was curious. Wish me luck!

[jesskat]

That is an amazing story. I have immotile cilia sydrome. (my cilia hairs don't move on me.) I am told it's close to cistic fibrosis. I will need a lung trasplant as well. I'm on the list and am told it takes about a year. I can relate to your story so much. A year ago I had double pnemunia and had to be put on a bypap, since I got double pnemunia that put my lungs in a drastic shove to be replaced. Until I get my lungs replaced I am on oxygen. I like your scar. I was worried about that.

[jesskat]

@jesskat I have a question though, do you feel ok like you get enough oxygen with those lungs or are you out of breath a lot even now. Also what was the recovery time. I love your family though I am so glad your doing good. Thank you for the inspirational video as well.

[aislecheeks]

I'm 19 and I've just got engaged. I had a routine appointment last week and my consultant told me I should start preparing myself for transplant...I won't need it for a good few years yet, but I need to really concentrate on my health for those next few years. I am so scared about it. Especially having only just got engaged - I'm scared for my fiance too.

[buggerjlewis]

I was 19 when I got married. I had my hesitations too. In fact I felt like I was kinda cheating him out of being with someone 'healthy'. Shortly after we were married we had my doctor predict that I would only live another 3-5 years. BUT we had been married 8 years when I got my transplant and in Jan 2011 we'll celebrate our 12th anniversary. Hope and dedication to staying active and healthy is always important. You might be surprised at how many years you have before transplant :) Good Luck!

[aislecheeks]

@buggerjlewis Thanks...it always gives me hope when I hear about people who live longer than expected, and yeah I do kinda feel like he shouldn't have to deal with the stuff I have to deal with...I feel bad when I'm upset about something cf related and just blab everything to him - like, he doesn't need to hear all that! We always make the effort to keep communication open, even though he's 5000 miles away on a US army base! lol

[hahamantuh]

Great story my husband went through the same process he o2 levels were 8% went they put him in a come and gave him 3 days on the ventilator..He got lungs the Am we were to take him off the ventolater..Truely a miracle congrats he breathes better than me now..And can run with our children also..Many blessing

[psycobasschick]

great story!!! glad is all going so well

[MFHORNS111]

great video. Very inspirational! God Bless You!

i have CF, and i am 47.

[WTFismaname]

I am crying like a baby and i already know your story! I am so proud to know you Jamie! You are a miracle!

[DonateLifeIllinois]

Great video Jamie!

[msbuddies]

Hi Jamie :)

Your Video made me cry with tears of joy and admiration for you. Not only are you a Gorgeous lady, you are filled with a ZEST of life and Love for everyone. I am so glad that you joined Transplantbuddies.

Your new Txbuddy,

Risa

[cffighter86]

Thank you so much for sharing yorur story! I also have CF (hence the screenname) and am starting to do a little research on the transplant process. Glad to hear that you are well,happy and finally able BREATHING!!! Continue to take care!

God Bless

[briansercus]

jamie,

thank you. i have cystic fibrosis and cepacia, and i'm just about 28. i went to pittsburgh this past october to learn more about the program, but i was still on the fence. this video was filled with hope and love and sometimes it's good to be reminded that you can never have enough of either. i hope you continue to have a beautiful life. thanks again.

-brian sercus

[buggerjlewis]

That really means a lot! That is the main reason I posted my video orginally meant only for my family and close friends....You are seriously in the best care at Pittsburgh! It is a very scary decision, but for me it was sooooo worth it. One day of being able to take a full breath of air was worth it. It was also the HARDEST thing I ever did! Let me know how things go for you!! Once again-THANK YOU!!