Off To A Good Start

"When we are sure that we are on the right road there is no need to plan our journey too far ahead. No need to burden ourselves with doubts and fears as to the obstacles that may bar our progress. We cannot take more than one step at a time." - Orison Swett Marden

We made it to Bethesda last night. We found out Saturday that we wouldn't be staying at the Childrens Inn, rather they put us at the Doubletree in Bethesda, MD because Elise hadn't cleared the "contact isolation" order yet (from back in Feb). Apparently she needs to test negative for enterobacter 2 or 3 times in a row before she comes off contact isolation. I think she tested negative the only time they've tested her since February.

Our first appointment was at 7:30 am. First up was signing consent forms and then getting briefed on the changes in the schedule that happened as early as 7 am this morning. I'll outline the updated schedule in a follow-on post because it deserves some detail on its own.

Following signing the consent form Elise queued up for blood draws. 13 vials in all. When compared to a blood donation its not much, but there will be a lot more to come so they actually track the volume in the computer.

Then we had the normal current health assessment which really didn't take long because they've seen Else so much lately. But the nurse practitioner gave us a little rundown on the roles of the various transplant staff.

Following the assessment we headed off to get Becky a "Extended Visitor" badge like Elise and I have. Since NIH is a federal facility they have security at all entrances and they search your luggage, etc just like at the airport. That is they do unless you have an Extended Visitor badge and then they basically scan it and wave you through. Very convenient.

Then we were off for an echo cardiogram. As I mentioned in one of my previous posts, one of the conditioning medications has reported heart function side effects as a rare possibility, so they check function before and after using it. The echo cardiogram is essentially an ultrasound for the heart. It's pretty high tech though and they can compute some heart efficiency metrics from the various measurements (valve diameter, volume, etc).

After the echo cardiogram we met with the Dr who runs the transplant program. She's pretty no-nonsense and she ran us through the risks to make sure we understood them. Scary stuff which I've written about in an earlier post. And then we signed more consents, this time for the transplant protocol itself.

Eventually we headed off for a CT scan of the chest, abdomen and pelvis. I thought they might want to do an IV to inject "contrast" dye, but they decided to use an oral contrast instead. Elise has done this before and during the earlier test she said the oral contrast tasted like "tires" so I wasn't looking forward to getting her to drink the stuff. But she said it didn't taste too bad this time and she got it down without any problems. Then the CT scan only took about 5 minutes - piece of cake. I was anticipating something much longer. I think I was thinking about an MRI or something.

Then we could all eat lunch - Elise wasn't able to eat for 4 hours before the CT scan so we were all pretty hungry.

After lunch we headed off for an electrocardiogram (EKG) and then she was fitted for a Holter monitor that she'll wear for the next 24 hours. It monitors her heart function and records certain information. She has to keep a journal that identified when she walks, eats and goes to the bathroom. Apparently these are events of interest to cardiologists. Becky said people have strokes when they go poop, I said they need more fiber. Elise laughed.

After that we were done with tests for the day. Whew!

So we headed off to Rockville to check into our apartment. We took the Metro up and walked to the apartment since we don't have a car yet. The apartment is about 5-10 minute walk to the Rockville Metro station. The Apartment seems nice and I think Becky and Elise are both pretty happy with it. (Elise was particularly impressed with the fuzzy, spotted caterpillar she found on the walk to the Metro.) I was breathing a sigh of relief since I rented it based only on pictures and reviews on the web. We'll be staying in the Doubletree until Friday and hopefully by then we'll have some furniture moved in and some semblance of apartment life started before Elise begins her inpatient period.

The schedule for tomorrow looks even busier. Beyond that is a bit sketchy and depends a lot on anything they find in the tests from Monday and Tuesday.

So we're off and running!