My week at the NIH

I was very nervous before I went to the NIH last week because there was so much about the trip that I did not understand. To help alleviate the fears of others I am going to briefly describe the week for you.

First thing you need to know is that the Study of ECD at the NIH is a Natural History (NH) study. NH studies are an important tool for understanding the cause, range of manifestations, and progression of rare diseases. This study is for improving the medical communities understanding of ECD, it is not going to fix you. They do not have a secret drug at the NIH that is going to make your ECD go away.

Second thing you need to know is that the NIH covers your travel expenses (airfare and hotel room for the week for you and one other person). They make sure you have a taxi from the airport and they prepay the driver. If money is tight don't worry they even give a meal voucher for the person you bring with you (I think it was $180).

Third thing you need to know is that Dr. Estrada and Kevin O'Brien are a great team. They were in and out of my room (more about that next) at least four times a day. Each time they discussed what the tests I had taken were showing, what things we had ruled out, and what more we needed to do to continue to narrow things down.

Dr. Estrada-Veras, Me, PA O'Brien

I came to the NIH unaware of my significant immune deficiences, my low testosterone levels, and with real weight loss issues. They spent five days trying to figure out the reasons for these issues and how we might be able to address them. 

Fourth thing is your room. It is a hospital room. Imagine all those times you have visited people at the hospital but at this hospital most people were mobile and did not require acute care. I saw the nurses three times a day for my blood pressure, temp., and pulse oxygen level (I never had my sleep interrupted). They also came around to remind me of my appointments and to give me my medication.

Fifth thing is your going to be busy!!!! Seriously, I am in decent health and I found the testing regiment to be exhausting. I could have returned to the hotel every night that they got for my Dad but I was so tired that I just stayed at the NIH.

Sixth the week will put you in contact with more specialists (that are all top doctors) then you could see in a years worth of independently scheduled visits. The benefit of this was I have a much clearer understanding of how I need to proceed forward to best manage my health care.

Seventh thing your caregiver/spouse/friend needs to know is that they will spend hours waiting. I would suggest they bring a book, video games, magazines, etc. Once your ECD patient goes in for the test (MRI, CT Scan, Pet Scan) you just don't always know how long it is going to take.

Eighth thing is a suggestion. Gentlemen (if your hairy) shave before you go! I ended up having patches of chest hair removed in 8 spots for leads. If I had know I would have done it myself ahead of time. I did prep my arms which ended up seeing quite a few IV's.

Ninth and final thing is the food is pretty good. I have some serious food issues and even I found the menu to be nice. There were certainly many option both healthy and not. You might want to bring a few snacks with you or order extra food at meal time to set aside though because you may get hungry between meals.

Finally, I am certain I have left something important out, so if you have any questions please send me a note and I will do my best to answer. If you have ECD and have not contacted Dr. Estrada yet stop stalling and pick up the phone you will not regret it.