Tuesday, April 23, 2013

A tough week

Now that I’ve blogged about how the trip to NIH went from a health standpoint, I thought I’d blog a bit about how it went from an emotional standpoint. Honestly, it was a tough trip this time.

In past years I’d always tried to go to NIH with a friend whenever possible. It makes the time go faster. Thankfully, I never have to wait long for test results. These days Kevin is really awesome about not keeping me in suspense. Years ago, you had to wait all week to get any results. Still, the waiting…waiting for the tests…waiting for the appointments…waiting for the results…it can seem to drag on forever. All the while, one can’t help but worry. It might seem silly, but sometimes I feel like the one time I’m at ease, the one time I’m not worried, will be the time something will catch me unprepared. The truth is one can never be prepared for some of the news these tests could bring back. It makes no sense to me that somehow if I see it coming it won’t be so bad when it finally comes. Yet, it’s how I feel.

Thus, being at NIH with a friend makes it so much less stressful. It can even have its fun moments.

I hadn’t even though about this leading up to the trip, but the moment I walked into the lobby of the hospital I thought of Elsie.

I haven’t been back to NIH since Elsie passed away. We always tried to get our trips together during the drug trial. Somehow walking into that lobby with the large atrium and the café where we used to get soup brought back this wave of emotion. I almost broke into tears just walking in the building.

I collected myself fairly quickly and went on to admissions. Still, everywhere I went all week there were reminders of Elsie and others that I’ve been to NIH with who are no longer here.

Many of the nurses and techs that care for us we come to know very well. Even though I hadn’t been back in years, they still remembered me and asked about things in my life we used to talk about. I asked about their kids, grandkids etc.

They used to always assume Elsie and I were sisters. Even though I’m almost a foot taller than she was, we looked very much alike. Everyone used to assume we were sisters, and no matter how much we told them we were just good friends, they always thought of us as sisters.

This time, at almost every test I went to – from the PFTs to the EKG – someone asked me, “And where’s your sister?”

I knew what they met and had to tell them that Elsie had passed. It was tough, but I do so much appreciate how many people asked about her and remembered her.

I had to stay an extra night Friday night. The floor was almost completely empty and the nurses didn’t seem terribly busy. I spent part of the evening chatting with them. Some of them have cared for HPS patients for years through the drug trial. They asked me about several HPSers they’d cared for over the years and what I knew about what was happening to them. Sadly, a number of them are people who have also passed. It was sobering for me, and for them. It was also kind of sad that they had no idea what ever became of so many of us.

I guess that is the nature of the business. They see hundreds of patients a year I know. I felt honored that they remembered so many of us by name.

I couldn’t help but think, would they ever know if something happened to me? 

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