James’s Story

Site created on June 14, 2012

Welcome to our CaringBridge site. We've created it to keep friends and family updated. If you wish to receive automatic updates, you must click the "Notifications" button and sign up.




My story? Wow, neverthought I would be typing this into CaringBridge! As you may, or may not know, we have extensive experience with CaringBridge due to our son, Brandon's journey with cancer. The site is still up at http://www.caringbridge.org/visit/brandoncook

So, here we go......  OK a few of things right up front: 1. No I am not going to give my entire life history. 2. The disease I have is really serious. It causes you to not to be able to breathe in and you eventually just suffocate to death. 3. If you know me you know that I will be very honest and direct about this whole process. So, you may want to have someone else read the posts and just give you the cleaned up synopsis. 4. Max rating on this site will be PG. 5. I cannot live my life without humor in good times or bad. Sometimes it is really witty, clever, yet profound (my opinion of course) and sometimes just really weird (other's opinion). So, please, if that might bother you see number 3 above. Nuff said!

I am going to call my disease Idiotic Pulmonary Fibrosis. The doctors call it Idiopathic Pulmonary Fibrosis (IPF). It is very rare, they do not know what causes it, they do not know how to treat it, and everything they have tried short of a double lung transplant has had no or negative effects. Short synopsis of the disease:  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001134/

 So, do I believe this is the end of the road? Absolutely not! Do I believe it could be? Absolutely yes! It is in God's hands not mine, the doctors, some magic "formula" of prayer, positive thinking, or incantation.  I believe God does as He chooses; healing through miracle and/or medicine or not healing at all.  I believe He invites our prayers and petitions. I am not just a person who believes in God. I am a student and follower of the one who declared himself to be God in the flesh and resurrected - otherwise known as Jesus, the Christ, the Messiah and Isa. I love philosophy, theology and history. I study them from passion.  And, I love NASCAR!

 Warning, serious note ahead: Yes, this a very terrible path for our family to once again journey. It will be filled with sorrow, pain, and confusion with a little humor along the way.  It will also be a path where God will reveal Himself in new ways!  So, if you're up to it, come join us as we walk together.

Our passion: http://www.heart4children.com

Twitter: @ ()cookerman

Newest Update

Journal entry by Jim Cook

UPDATE FROM TAMARA

Want to share some current news with you all. Jim‘s lung function tests currently show no decline! As you know, he has been undergoing experimental treatments since December to slow the chronic rejection. The recent tests indicate they may be helping since his lungs have remained stable the last few months. We will know more at the end of May when he finishes the entire regimen of treatments. For now, the news gives us hope for more time together!


On another subject… he has been having even more extreme fatigue and general flu-like symptoms. Doctors have ordered a stress test to check his heart, especially since a heart murmur that was detected several years ago is more pronounced. He will also get a sleep test to see why he only sleeps a few hours a night, even with medication. Finding the root cause of his fatigue may help if it’s something that can be treated. In the meantime, he keeps going as much as possible, taking naps as needed. Sheer determination keeps him going most of the time. We are actually in Honduras right now. Are you surprised?!


Other big news… TODAY  is the anniversary of his double lung transplantHe got his new lungs 7 years ago on March 27, 2017Two days later on his birthday, March 29he was extubated. He took his first breath of air with his new lung on his birthday! How special is that?! 


Honestly, it is such a miracle he has survived the many complications he has faced. We are continually grateful for God’s mercy allowing him to not only survive, but to LIVE. And that he does! He lives with intention and purpose. He shows true strength and amazing perseverance. He has a generous spirit and a genuine heart of love for others. He embraces each day with courage, and he continues to be curious and seek adventure. He has taught me what true living is all about. 

 

Patients and caregivers love hearing from you; add a comment to show your support.
Help James Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like James's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top