Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Go away snow, we have an early call time!

Go away snow, we have an early call time!

The last couple days have been pretty mellow. We welcomed this, since next week is going to be very intense. We leave Sunday morning at the crack of dawn. Well, this was the plan before mother nature decided to dump a bunch of snow on Colorado this weekend. We're playing it by ear but Rima and I want to head out no later that 7am tomorrow since it's going to be like a 13 to 14 hour drive to Minneapolis. Depending on the road closures on I-76 we hope we're okay. 

  SNOWWWWWWWW

SNOWWWWWWWW

Why may you ask are we driving and not flying? Great question. Well, the answer to that question is pretty simple, germs. Rima is already going to be in and out of a hospital in different rooms meeting a lot of people over 5 days and that's already exposing her to more germs than we want. So if we added in two flights and dirty germ infested airports, she would 100% get sick and end up in the hospital again for most likely 2 weeks. No one want's that. So, we are driving.  

Rima and I are truly delightful road trip companions. As children our parents took us on multiple road trips almost every year to PEI in Canada. We made trips to and from Florida more times than I can count and also Chicago. Rima helped me move from SF to NYC a few years ago and I moved her our to Colorado in January. Road trips with each other give us optimal time for random animal facts and silly faces. 

  Road trip from SF to NYC, at the Santa Monica Rose Gardens. 

Road trip from SF to NYC, at the Santa Monica Rose Gardens. 

  Moving Rima to Colorado. 

Moving Rima to Colorado. 

Our schedule for the evaluation is pretty grueling. They have every minute planned out and have sent us multiple schedules. Here is a short rundown of what the week looks like for us. 

Monday: 7:30am arrival. Blood test. Dexa Scan (what's that?). X-rays. Transplant support group. Meet with the Pulmonologist. Meet with the transplant coordinator. Meet with Bleeding and clotting disorders.  

Tuesday: 7am arrival. Lung perfusion. Echocardiogram and bubble study. Cat scan of chest and sinuses. Lung transplant class (yes, school). Vest therapy. Meet with transplant coordinator. Pulmonary function test.

Wednesday: 8am arrival. Meet with Thoracic Surgeon. Heart Cath, is a procedure to examine how well her heart is working. A thin, hollow tube called a catheter is inserted into a large blood vessel that leads to her heart. She will be half sedated for this. 

Thursday: 6:45am arrival. Gastric emptying study (sounds like fun....). Meet with ears, nose and throat doctor. Meet with transplant social worker. Vest therapy. Meet with a nutritionist. Meet with a CF respiratory therapist. 

Friday: 8am arrival. Cardiopulmonary interview. Blood test. Closing evaluation. EKG. DRIVE BACK TO COLORADO. 

  Transplant schedule. 

Transplant schedule. 

  Rima's super overdue IMPORTANT drugs came in the snow storm! YAY!!!

Rima's super overdue IMPORTANT drugs came in the snow storm! YAY!!!

We unfortunately won't find out her score or number of where she lands on the transplant list at the end of the week, we have to wait for 1 -2 weeks after. Due to tests and the transplant team having to meet a few times about Rima and their thoughts on her. Getting a transplant is more than "oh I need a new organ". The transplant team can decide even though you may need one that you are not "right" for one. Some factors that influence this decision can be drug or alcohol abuse. Not having a good support system. Not taking care of yourself physically and mentally. Thankfully, Rima does not have to worry about any of this. If anything the amount of people who care about her and want to help support her through this is overwhelming (what a great "problem" to have)!

We're staying in a super cute Airbnb in Minneapolis. It's located near a park and we hope, if weather allows and if we are not exhausted to have a picnic one day. We also hope to have enough energy to maybe explore the city a little to see what it will be like living there for a few months. All in all the whole drive there and the evaluation will be an adventure. Rima and I have our silly pants on and are ready to make some doctors laugh. 

  Road trip here we come!!!

Road trip here we come!!!

 

 

Fried last meal

Fried last meal

Doctors & Dough

Doctors & Dough