Stanford Evaluation

We started off our visit with an early Sunday morning flight to San Jose. We picked up our rental car and headed to our room rental in Palo Alto. 

After settling in we drove around and became familiar with the area. 

That evening we joined the Palo Alto First Ward Relief Society President and her husband for dinner at their house. We really appreciated the food and conversation. They are a wonderful couple and We’re grateful to have met them. 

Day one at Stanford: Monday, February 26th 

Stop 1: Phase 1 Lab Draw

I had 20+ viles of blood and a urine sample collected to be sure I’m keeping myself clean and disease free. I’m sure they tested for other things too. 

Sadly the wait took so long that we had to skip breakfast. 

The highlight of my day was Levi reading ladies magazines to me while waiting for tests. I couldn’t stop giggling.

Test 2: Echocardiogram 

It took two techs to decide that they had collected as much information as possible. Some parts of my heart are hard to locate and collect quality pictures. 

Test 3: Bone Density Scan

This was quick and painless. 

Test 4: EKG

Another quick and painless test. 

We stopped for a quick bite to eat in the hospital’s cafeteria. 

Test 5: Chest X-ray

Yay for another quick and painless test. 

Test 6: SNIFF Test

For this test, they took X-ray images of me actually sniffing. 

Test 7: Arterial Blood Gas Draw

These hurt. This was the first time I’ve ever been numbed before the blood draw and I definitely prefer that from now on. 

Test 8: Pulmonary Function Test

This test wore me out quickly. I had to perform different breathing patterns. After each one I was completely out of breath and needed a few minutes to recover. Part way through I received an albuteral treatment and repeated the breathing patterns again. 

Test 9: 6 Minute Walk

I had to walk up and down a small area in the hallway for 6 minutes. They checked my stats pre and post walk and again after resting. I did better than I thought I would. I wonder if part of it was due to the albuteral treatment. Stats: Heart rate 71 Oxygen 83

Blood pressure 103/72 

Test 10: Second Echocardiogram 

I was worn out at this point. 

A different tech and the Congenital cardiology Department doctor were able to find my patent ductus arteriosus (PDA), descending aorta  and another part of my heart that the first techs couldn’t find.  

The doctor informed me that he contacted my transplant team and had asked them if his congenital cardiology team could either be part of or take over my transplant case. Then he asked if we had extra time in our schedule on Wednesday or Thursday for appointments with his team. I guess that is the struggle with being a unique case. 

Test 11: CT Scan of Chest, Abdomen and Pelvis

I always love that not so fresh feeling of wetting my pants from the contrast sent through my body. (I hope you could sense the sarcasm coming though there). 

Getting an IV for the CT scan contrast. 

On the way home we stopped to eat at the Lobster Shack for dinner. 

As soon as we got back to our room, I went straight to bed. 

Day two at Stanford: Tuesday, February 27th

Test 1: Esophagram 

I had images taken while swallowing a white chalky barium liquid and a white barium pill. 

Levi and I met with my social worker for a psychosocial assessment. We discussed my support system, housing, financial status, air transportation, support groups, and Levi was informed of his role as my main caregiver. 

To end the day, Levi and I attended a transplant education class. There was a lot of information given. It was really helpful and it answered some of our questions. 

I believe I was the only pre-heart/lung transplant patient at this class. It was interesting to learn that 30 heart/lung transplants were performed last year nationwide and Stanford had 7 of them. 

I needed a change of scenery and something else to think about so Levi and I decided to go test drive a new Prius Prime. I must say it makes me want a new car. 

We grabbed a bite to eat and stopped at a grocery store to grab a few hair products. Then it was back to our room for the evening. 

Day three at Stanford: Wednesday, February 28th

Pre-heart/lung transplant clinic 

Stats:

Heart rate 39

Oxygen 82

Blood pressure 95/52

During the pre-heart/lung transplant clinic I met with:

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Transplant Coordinator - turned in paperwork and followed up on air transportation and housing. 

• 
  

Social Worker - followed up on my caregivers, transplant education class, housing, advanced medical directive, air transportation, and my feelings toward proceeding forward with the transplant.

• 
  

Dietitian - discussed that my BMI is too low and I need to gain weight to at least 114 pounds, but ideally 116 pounds. in order to have an appropriate BMI for the transplant recovery. I’ve been told to increase my protein and carlorie intake and to exercise as much as possible to build stronger muscles (especially my core muscles). 

• 
  

Pulmonologists - they said I am healthy. They are slightly concerned about my liver being affected by the pressure from my heart. The fact that my heart and lungs are starting to affect my other organs indicates that now is the time to proceed forward with the transplant. The transplant surgeons may need further testing on my liver (like a liver biopsy or ultrasound). They also addressed my weight and need to increase my BMI. They also said they’ve contacted the Adult Congenital Cardiologist and he may contact me for a check up tomorrow, Thursday morning  before we fly home. 

*I just reciecved a call saying I have an appointment tomorrow, Thursday, March 1st at 9:00am with the Adult Congenital Heart team. 

Test 1: Phase 2 Blood Draw

Another 15 viles of blood drawn. They gave me some apple juice and I was set free. 

So now my transplant team including the surgeons will meet on Tuesday, March 6th and decide whether they will:

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List me for transplant

• 
  

Defer a decision until issues are resolved

• 
  

Recommend an alternative treatment

I will receive a call from a member of my transplant team that afternoon with their decision.  

Tomorrow we will be checking out furnished apartments for possible post-transplant housing.

I’m looking forward to being in the comfort of my own home with my cute little family tomorrow night. I’ve missed my little girl. I’m truly thankful to all those who helped care for Zoe this past week. We really appreciate you kindness and generosity. 

Thank you for the continued prayers, love and support.