Elissa Is Back From Duke
 

Evaluation at Duke in NC went well. First let me say, that she had no issues with the plane ride going and coming to NC on 2 1/2 hour flight. Pushing her in a wheel chair was a sight to see with 2 carryons, 2 backpacks. O2 generator, and wheelchair. So glad I dusted off the cob webs for the "stroller". So many nice people helping us, opening doors, strangers helping us carry bags on the plane. A first class passenger even giving us $170 in gift cards to Chili's and Mirranas Little Italy. A special thank you to all our new found helpers in life!

To begin, it was a 2 day very lengthy event. Blood tests, PFTs, Walk test, XRays are all the normal stuff.
Both days we met with doctor after doctor telling the same very detailed life story of Elissa from birth.
Pulmonologist for Transplant, Dr Reynolds is our main concern and influences the big decision. He was 90% positive unless the v other departments found a red flag.
Surgeon, pulmonogist, infectous disease, Physcologist, pain management, finance, orientation, dietitian, etc.
All these departments meet every Tuesday to make up the board decision who gets to relocate and who has issues to resolve or can't come back. There was around 22 patients seeking lungs just this week. Most were older COPD patients. 2 were CF.

DR Reynolds, head of pulmonology, we were told personally picked our case.
Elissa's case is one of the most complicated cases. 2 surgeons, not 1 will be required to remove her lungs in pieces and replace with new ones. The surgery will take 10 exhausting hours if not more to do this procedure. Since her lung collapsed twice and pinned up with pluerodesis,"glue", scraping of the chest wall like a pumpkin will be needed. This process causes complications, excessive bleeding , inflammation, delayed chest closure for 2 days, and the likely hood of bacteria escaping from her old lungs makes her a very critical case.
As soon as they give the green light to relocate....
Infectious disease wants to start a new round of antibiotics that treat any bacteria or fungus she has ever grown before transplant.
A step down pulmonary rehab of exercises will also start.

With all this being said, overall her lung function was good. She passed all the tests. However, she still has hemoptysis and had an episode right before we boarded the plane to NC. No more bleeding as of yet, but it will continue to happen. Her lungs are deteriorating more quickly.

Conclusion, her complications with severity of the surgery will be challenging for all. This will be Elissa last chance to receive a new chance in life. The decision is not easy. It will be a strain on our mental status and our "normal life".
Elissa will not be seeing her home for 6 months more or less. Gary and I will take turns keeping the house and business in Fort Worth going with help of friends. I will be doing the primary caregiver role. Holidays will be spent at Duke.

At this time, we do not know the accommodations. We can't plan anything even our time until we hear from the results of the board meeting on Tuesday. Once we do and it is a yes, our lives will go in hyper mode. Lungs with Duke can happen in weeks or just a few days. It will go fast!

So, for now just sit and wait.



If Elissa is selected I will post all the prices of what Duke estimates the cost will be (5 categories) and you will get to guess the billing subject.....Evaluation... Transplant ...Post...Rehab and the final category Travel/Lodging/Food

Elissa has amazing insurance and a supplemental policy. Since she requires 2 care givers her policy pays Travel/Food /Lodging for the entire family.

Duke said most patients have to do a fund raiser for the 6 month stay.
Our Family Out Of Pocket will be Zero.

If you live in the Raleigh-Durham area hopefully we could have dinner one night.

Gary, many thanks for the update.

Oh my, very scary with heeps of hope! What a strong young lady and an awesome family.

Rutager

Good News, continuing to keep Elissa and your family in my thoughts and hoping for the best.

Thanks for the update, Gary. Many prayers for her surgery, her recovery, and strength and endurance for you and your wife.

My goodness. What a great attitude you have. Stay strong!

Thanks for the update. Looking forward to more good news posts.

You sharing her journey from the early days has truly been special.
It's the full swing of thoughts and emotion. Humbling, reassuring, nerve yanking, all of it.

Truly admire your dedication and the way you involve PPOT.

By the way, it is the exact reason I chose my career in Diagnostic Imaging Systems Installation/Service/Repair. Today I worked on a CT, then held a Driving Class for a new hire ( we drive Fleet vehicles, I'm one of our internal Trainers ), then I went across town to check out a PET/CT. Tomorrow I'll be in Flagstaff on a Nuclear Scanner.

Whenever I calibrate or perform any imaging service, I take the task very seriously and try to imagine a loved one's diagnosis relying on my work.

I work at Mayo several times each year. Duke is a fantastic facility.

You're in good hands, and I wish I could be in the area to meet up and have dinner.

Bless you all.

All blessings on you all.

Positive vibes headed your way.

Prayers sent!

Amazing resilience!

I've been following your journey silently for a while. Silently because I'm speechless at understanding what you, your spouse, and Elissa are shouldering.

..but I want you to know that I'm pulling for all of you.

Tearing up reading this. All the best to your daughter and family. Dad and stepdad to a total of 5 kids and I can't imagine everything you all have gone through over the years.

Best of luck. My thoughts are with you all.