Transplant Evaluation Day 1

My evaluation started on a Monday, which is standard for Stanford. It was the day I was the most stressed about because the schedule looked so full! It ended up being a very long day. We got there at 6:30am and didn't get to leave until about 7pm! I had appointment scheduled for 7:30, 9:45, 12:30, 3:30, 6:00 and 6:20. I was also given 3 tests, blood draw, EKG and Chest X-ray, to do "at my convenience." This is a detailed breakdown of my day. I wanted to include a lot of details so maybe someone in the future that has an evaluation at Stanford can get an idea as to what they are in for:

6:30 Labs: My paperwork said I needed to get my blood drawn first and foremost when we arrived at 7am and that it needed to be completed before my first appointment at 7:30. I needed to be fasting for the blood draw. We were told the lab opened at 7am, but since we had never visited the hospital before we wanted to leave early and get there with plenty of time to find the lab. We took a Lyft and arrived at 6:30. We were so excited to find that the lab was actually open. I was told by the phlebotomist that one of the blood tests ordered for TB couldn't be done until 8am (due to it needing to be incubated and that wasn't available until 8??) and that I would have to come back to get that test done. They said I could either do all the other tests first and come back just for the TB which meant I could break my fast, but I would get poked twice. Or I could just wait and do it all at once with only one stick, but I would have to fast until I came back. Food trumps needles in my life so I decided to do all the tests minus the TB with the plan to return after 8. I gave about 15-20 vials of blood and was a bit worried I may feel a bit dizzy from fasting and giving a lot of blood, but I felt fine. I also gave a urine sample. I had extra time so I decided to get a few other unscheduled tests done.

7:00 X-Ray: I tried to get my EKG done, but it wasn't open yet. So I went to get my x-rays done. It was a basic chest X-ray. One facing the screen and one standing sideways. It was the same as every other X-ray I have ever had for CF. It was super quick and easy.

7:30 Bone Density Scan: My husband and I packed a backpack cooler full of food, water and snacks the night before. I also packed my Symdeko and morning pills because the morning was so busy and we just weren't sure if we would make it to the cafeteria in time. I don't love fasting or going hungry so we wanted to make sure we had food with us. I got to break my fast after checking in for my dexa scan. Whew! Soon after they called me back for my scan. This was my first scan and I wasn't sure what to expect. It was quick and painless. They took a scan of my lower back and each hip. I had to sit still for 2 minutes for each body part they scanned. It was similar to getting an x-ray. Simple!

8:00 Blood Draw #2: We ran back to the lab to get my TB blood draw. The amazing tech left my file open so when I got to the lab I did not have to wait in the line again and was brought back immediately. One vial and I was done. Super fast!

8:15ish EKG: We were ahead of schedule and I was so happy to be cruising though my "extra" tests because I did not want them hanging over my head. Since we had time we went over to the EKG lab. We tried to check in, but they said that walk ins (which is what we were) couldn't be taken until 9:00. Since my next scheduled appointment wasn't until 10 we decided to wait it out. At 9:00 they called me back and I got an EKG. It was super simple and fast. They put some monitors on my ankles and chest and took a reading for a few minutes. The tech gave me a print out of my results to bring home. I had no idea how to read it, but it looked cool so I took it. Simple and painless.

9:45 SNIFF test: We checked in at 9:45 for a 10:00 appointment. This test was easy! The brought me back to a room with a huge bed that was standing upright (as in the foot of the bed was on the ground). I stood against the bed while they brought a machine (essentially an x-ray) in front of my chest. The tech was taking scans while asking me to breath normal. Then he took a scan(s?) while I took a deep breath. Finally, he told me to sniff 3 times while he did one last scan. Apparently, this test checks to make sure your diaphragm is working in unison and properly. I passed. I have no idea what it means if you fail or what problems it can cause in terms of transplant, but since I passed I didn't bother to ask.

12:30 Social Worker: You guys, this was a hot mess. Going into it I assumed they would ask the basic social worker questions. But the social worker came in with a packet of questions and I knew he was judging if I would make a good transplant candidate. The problem was the more (random) questions he asked the more I started to wonder if I would pass. For example, one of the first questions he asked was if I had gone to public or private school. Internally, I kept thinking, "wait, what does this have to do with transplant...does your elementary education really impact transplant??" Obviously, I was over thinking these questions, but I was starting to wonder what the relevance was. After taking a step back I think they were just getting a profile on me, but at the time the questions made me nervous as if every step of my life was being  judged. The other part of the social worker meeting that made me panic a bit was when he asked about finances. We are a single family income. After we told him our income he did mention that the cost of living near Stanford (which is required 3 months post transplant) is much higher than where we live (and basically completely unaffordable for us). For reference, the average home value in Stanford is $3 million which shockingly is not affordable for us. And even though we wouldn't be buying a home in Stanford post transplant, clearly rent would probably be significantly higher than out mortgage. Considering we hope to keep paying our mortgage while we rent in Stanford I was wondering how we would possible pull all the finances off. So I was internally freaking out now thinking they are going to reject us for sure! After it was done he explained that they do not disqualify people based on income. I wish I knew that upfront! This is getting long, but the last part that I will mention is that I hate mental math. So when he asked me to count down from 100 by 7s I got nervous all over again and lets just say I will never trick anyone into thinking I am a math genius. It wasn't pretty!  

3:30 Pulmonary Function: Next I had an appointment with a respiratory therapist (who was insanely nice and encouraging). We started with an atrial blood gas test which is when they take blood from an artery in your wrist vs a vein in your arm. After hearing it was painful from various people (including nurses) I was really nervous! Luckily, they gave me some lidocaine which made the test way less scary. She missed the first time and had to do the test twice to get a sample. I only felt a bit of pain on one attempt, but the other was painless. After, we had PFTs. I had to do the first one without any inhalers (I had to stop inhalers 4 hours before meeting the pulmonologist). I was having a good lung day and lucked out because my asthma can get out of control. Not taking my inhaler before PFTs was actually one of my biggest worries about the day. We did several lung functions tests which can be exhausting, but having CF, these tests were nothing out of the ordinary.  

6 Minute Walk: Next was the 6 minute walk. We were able to go to a hallway where there were not any other patients which meant I could take off my mask. Whew! The took my vitals then had me walk the hall for 6 minutes as quickly as I could. I then had my vitals taken again before being dismissed. Pretty easy and painless test!

Fasting Again: I could not eat 2 hours prior to my CT scan so at 4 I started my second fast of the day.

CT Scan: The last test(s) of the day was a CT scan of my chest, abdomen, and sinuses. They were able to use my Port so I didn't need an IV which was a huge relief. This was my first time with contrast. The tech explained I may feel a bit of a headrush and then I may have a sensation like I am peeing my pants. He told me a story while he was pushing the contrast into my port which in hindsight I am sure was a ploy to distract me from any sensations I was feeling (and maybe to monitor if I was having an allergic reaction which is very rare, but can happen). I was pretty distracted, but did feel a bit odd in the head and chest followed by a very warm sensation as if I was peeing myself. I was glad for the warning. The test was pretty easy and besides  the port placement it was painless.

The End Of Day 1

That was a super long post for a super long day! Needless to say we were pretty tired by the end of the day!