Comments

Susan Mulder@ 5:28pm 03-21-2019

Location

Michigan
HI Jamie, Have thought so often of you and was so thrilled to find your blog and learn that you are still doing well and going strong! Brought tears to my eyes. My Tara used to talk to you and was so inspired by your story as she too had cepacia and was trying to get on a transplant list. We lost her in July of 2015. God bless you and your husband and give you many, many more years to enjoy together.
Pam Loper@ 9:21pm 11-21-2017

Location

Alabama
My 25 yo son, Josh Densmore died at UNC Chapel Hill Oct 5, 2017. You r right about needing to know end of life info. He was on fast track to get listed and get lungs. One of his lungs blew air into medialstinal area possibly infecting other organs with m. abcessus. He died 1 mo.after not listing him. He was scared and in pain until the last 5 days.
Paul@ 12:01pm 04-14-2016

Location

formerly of UPMC lung transplant team
Glad to see your enjoying life. My best to you and Brian.
Replied on: 8:08pm 04-14-2016

I still think of the day I called UPMC and spoke with you...you were my lighthouse in the storm and guided me to where I needed to be. I'm so thankful for all your hard work & love you have me. I miss seeing you on our visits to Pittsburgh, but you're in my thoughts so very often. My Hero...Paul my coordinator

tom mcnamara@ 1:57am 03-25-2016

Location

Full Time RVer no home anymore.
I have a very dear friend who I am suspecting is in her final stage but I'm not sure. She took her name of the transplant list and her lung function is at 16%. She is up beat and positive I'm asking for things I can do and talk about.....it just breaks my heart. Your blog I stumbled upon but it has been a God sent. Thank You
Walt Blacha@ 1:00pm 11-29-2012

Location

United States
Just letting you know that I visited your sight after our chat on Transplant Friends. Keep up the good work!
Lysa Dilley@ 7:06am 06-09-2012

Location

Frederick, Maryland
I was doing some transplant research and ended up finding your blog today. I enjoyed reading every part of it and felt compelled to write you a little note and say hello. My name is Lysa and I have a lung disease called Alpha1 Antitrypsin Deficiency. I too will need a lung transplant but as of now my lung function is only at 30% and they say thats not bad enough for transplant yet. It gets frustrating when the doctors tell you your lungs are bad but not bad enough for transplant yet your quality of life stinks because you can no longer participate in sports or activities that you love. I feel like im stuck in a holding pattern sometimes. Anyway, i enjoy reading your blog and invite you to add me on facebook so we can keep in touch.
Sincerely,
Lysa Dilley
Crystal Locke@ 12:30am 12-25-2011

Location

Ohio
I want to say that you are so very lucky to have such a wonderful husband that was there for you during your journey. How did he do it? I love your video and your blog. I read it often. It gives me hope and strength to never give up
Crystal
kathy Meier@ 5:19pm 08-08-2011

Location

Clinton, ON Canada
Hi Jamiebug,
Its sooo amazing to watch your story. You are such a strong woman. I found your blog on the CF forum and saw your post about 'what is the cause of death in a cf'er with a successful transplant'. I wanted to leave you a post but im having trouble signing in.
I too have CF and am 19m post double lung transplant. I am 33 years old and my story was definelty not all roses and my lung function got down to about 20%, but seeing your story, wow, just when you think you've got it bad, there always seems to be someone else out there suffering incredibly worse.
What i liked about your post is the advice you mentioned you got about setting a timer for you meds.....I to have timers set on my iphone everyday for 930am, 1230, 530 & 930pm. I admit that sometimes i miss the lunch and supper pills but im my mind i deam them not as important as they are iron, magnesium & losec. I have to smarten up tho cause i know that if they weren't important i wouldn't be on them.
Things are going so far so good. I had my transplant in Toronto, ON and waited 26 days after being listed to receive my new breath of life. I am so grateful to my donor as i know you are also. It is so amazing to have a second chance at life but i admit i do have days where I go where i shouldn't go which is the future, and can't help but worry.....how long, what if.....
I have a great husband of 10yrs that was truly an amazing support person during this journey as well as amazing family. My community had a benefit/silent auction and raised $25,000 towards my medical expenses too.
All in all there is no words that can express my gratitude so all I can do is live everyday to the fullest, which i must work on, and thank god everyday.
I wish you so much happiness and health and maybe we could email some time and get to know each other.
Thank you so much for your blog. Its comforting to know that we're not alone.
Stay strong, you are a fighter
Jenni Hanson@ 1:02pm 02-24-2011

Location

Atlanta
I love the video you put together. It is truly amazing. My cousin, Susanne Heck, just had her double lung transplant at Pittsburg as well (Dec 10, 2010). We can't wait until she comes back to GA. You are doing awesome! I hope Susanne can see this one day and see what a great life she is going to have very soon. Thanks for encouraging her through this whole process. I have seen the kind words you leave her on caringbridge. Keep up the great work Jamie, you are an inspiration to all!

Sincerely,

Jenni Hanson
Margi@ 2:20pm 10-27-2010

Location

New Zealand
Love ur blog , i have one too but ur got lots of little extras that make it look neat .
im margi by the way i come across ur blog on transplant friends, im 22 and had a heart transplant a year and a half ago
Dottie Lessard@ 6:08pm 10-24-2010

Location

www.dottielessard.com
Jaime!!! Og my goodness!! My fiance' just sent me this -WOW! I am SO PROUD of you and cannot wait to look through your site and learn more! I am going to leave a message when i do and also email you-I am so excited. Way to "Live Your Life" girl!

LOVE Dottie