Day +325: Take another little piece of my heart

Groan, that can’t be the alarm already…. We checked out of the hotel and drove to NIH this morning. The valet parking is very handy and also free.

My first appointment was for an echocardiogram. Marilyn let me watch and explained exactly what she was doing every step of the way. It’s truly amazing how much information you can gain about your heart through this simple, non-invasive procedure. One thing they cannot tell is if your arteries are clogged with plaque.

After giving it a lot of thought, I decided to have a large volume blood draw instead of apheresis. The research nurse, Tiffani, assured me the blood will be equally useful in their research. So instead of spending 90 minutes and having my blood returned to me minus some white cells, I had 21 large tubes of blood drawn in about 5 minutes. I figure the phlebotomy will also have the serendipitous effect of getting rid of some of my excess ferritin.

Next stop, dental. Carol administered a saliva test (spit in a tube for 5 minutes) and concluded that my mouth is indeed very dry. Dentists, Dean and Jackie, interviewed me at length regarding symptoms and any prior treatments. They checked my TMJ and measured how far I can open (very wide).  I had a thorough oral exam and was complimented on how clean my mouth looks. They determined that my left parotid gland is not functioning but my other salivary glands are, albeit not at full capacity. That is good news because it means if they give me medication (such as Salagen) to help produce more saliva, it has a higher chance of working. They took a full set of photographs of the inside of my mouth and then did a punch biopsy on the inside of my right cheek. It bled a good bit and is very sore but they assure me it should heal quickly.

I was late getting to occupational therapy so Lorea spent only a short amount of time with me. She accomplished quite a bit of assessment in that time though and said I’m doing very well. She gave me an accessory to help open jars and bottles and some scissors with non-traditional  grips that are easier for me to hold while cutting. 

Finally, I reported back to the 12th floor clinic for outbriefing. Tiffani and Kristen were both off today so I saw Diamond. She asked if I could return on Monday and Tueday of next week for a liver ultra sound, endoscopy, and a gi flow study. I agreed to do so. She gave me copies of all the reports that are in thus far. I read them on the way home and found a few errors in my history that need to be corrected. I won’t get explanations and recommendations until sometime later after all results are in and the team has a chance to meet. It has been a great experience this week, although exhausting. We’re looking forward to a day of rest to ourselves tomorrow.

We finished in time to get home before rush hour. Hurray! 


  1. Do you ever get to rest? Wow! You do lead a very busy life. Getting home before rush hour is always nice.

    Keep up the good work. I enjoy reading your posts.

  2. BTW We are moving again. Idaho Falls, ID this time. We found a house about 6 miles from Leslie. I am excited. We should be there about Dec 5th.

  3. I just read through your NIH testing backwards and found it all to be very fascinating. I was wondering if your taste bud problems were caused by the dry mouth. If so, maybe the saliva medicine will help make it better.

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