Tuesday, July 14, 2009

Day Two of NIH testing

The time spent here, has been amazing! The hotel room is nice....and the people have been awesome! We are truly blessed to be able to be a part of this study. I am thankful to all the wonderful doctors, nurses, and specialists who have decided to learn more about NF.
The morning went a bit smoother than yesterday. We woke up, had breakfast, and caught the shuttle to NIH. We were like old pros with the check in process and security.
We started the morning out with an echo cardiogram. It went fine, and took less than a half hour. The “echo” was looking at the heart in every angel....seeing if there are any abnormalities. Some 'Nfers'...have issues with some of the muscle that lines the heart. The tech looks at blood flow, counts beats, measures...then inputs that info, into a database were all the other NF info is. They will chart this info and note any similarities between each NF patient.
Mikey was joking, and in good spirits when we left. However, when I told him that we were headed to the dental clinic, he began a spiral turn downwards. He was afraid and embarrassed. I tried to talk to him...reassure him. I have seen Mike like this before....but I was truly taken back by his behavior. I hugged him and told him it was okay. Talk of suicide and hateful awful words came out of his mouth. He told me that NF was the worst thing in the world. He hated himself, and simply wanted to die.
When someone doesn't take care of themselves, then has to deal with the repercussions, it's not fun. The dental clinic, found what Mike already knew. He has some major dental problems....he was ashamed and afraid he'd get yelled at or looked down on. None of that happened. He was treated with respect and caring hands. They asked about his mass on his cheek....we were impressed that they wanted to know more....and will be referring Mikey to places in SLC.
I had to take Mike aside, tell him that his behavior was unacceptable. The talk of suicide will stop. I told him how important he is to me....to everyone he comes in contact with.
We had lunch and got him settled down a bit. It was nice to not be in such a rush. Yesterday feels like a blur....I can barely remember everything that happened (good thing I blogged as the day went on) We took our time eating...I called Dad to fill him in on things.
The last meeting with Dr. Stewart and Sarah....was to talk about the MRI....from the previous day, and to take pictures of our eyes. We had a nice lady come in to talk to us about Mikey's mass....and we worked out a plan to follow up with Mike's Neuro-surgeon.
I was invited to come back to NIH in a few months – for surgery on a mass the MRI picked up on my left hand. I was told to 'think about it', but why would I turn that down? The free surgery isn't the reason for my excitement....instead, I would be continuing to give back....offering information about the type of mass I have. An added benefit would be, of course that it would be covered in full....but also, relieving the pain, that I thought could never be fixed.
After saying good-bye to Dr. Stewart and Sarah Coombes....I headed to my spinal MRI. I have to say....I was so happy that our waiting was at a minimum. The IV was placed...(after 4 pokes) and I was sent into the MRI “tomb”.
My eyes were so heavy, as I lay there. The sounds of the machine, clunking and twirling around me. It was cold, then warm, then cold again. I thought about my brother. He was just simply verbalizing, what I feel sometimes. I get so frustrated with having NF, that I could easily fall into a pit of despair. I thought about his words...”This is the worst thing in the world”. I said a small prayer for Mike....for him to understand, how things could be so much worse.
I actually feel good. NF or whatever....it doesn't matter in the grand scheme of life. I am happy. I have a very full, very blessed life. I am surrounded by so many people who love me.....(even if my 8 yr old says she was beginning to forget what I look like-----I guess being gone for 4 days is out of the question, in the future...LOL) So I may never be a supermodel, with perfect skin and teeth. So I may never weigh 90 pounds and be 5'10”. That all doesn't matter. I have God in my heart, a sharp mind, wonderful family and close friends. What more does a person really need?
Thank you to NIH and all those involved with the study for NF1. Keep going, keep searching! We Nfers are blessed to have you questing for treatments!
God Bless!


  1. Kristi, I didn't realize you have a blog until today! I want to take some time to sit and really read this, but that probably won't happen until I get back from camp in a week. I'll be back!

  2. I have/had dental problems related to NF. I'd handed someone my teeth and gone back to bed.Maybe one day I'll be able to be a part of a study.

  3. The dentist there said something about NFers having different enamal on the teeth...making the teeth more likely to rot. JOY --Yet another thing to worry about.