So as everyone knows, I went to the National Institute of Health regarding my Idiopathic CD4+ Lymphocytopenia - "ICL" from here on out. Now I am going to tell you how it went - in depth because others will be going and want to know all the details.
The traffic to NIH was gawd awful horrid! If you have to adjust to that - God help you and may He be with you. We got there in plenty of time - but we left 2.5 hours early to go 27 miles. I think we arrived 30 minutes prior to the appointment.
We went through security, our car was searched and dusted for whatever, then we were allowed onto the campus - which is huge by the way! We registered and got our daily badge to carry around and we were off to see my team. Emily is the head of my team and she introduced herself and the Drs I would be working with. They explained the protocol of the study I would be working on and asked me to sign the paper agreeing to all the terms. The protocol says that I can jump out of the study at any time just by asking. She also hinted that I may be asked to join other studies...
I agreed to have DNA taken by a blood test, and asked for the results to be sent to me. She did have to tell me that I might find out things in the test that I did not like, but I told her that was fine. The first test I went to was the blood draw for the DNA and all the other blood tests they would need. *WHEW!*
I got a terrific guy from another country (I only mention this because of his sayings below) that was going to draw my blood. He assured me it looked like a lot of blood, "but so many tests we run from one vial that it really will not be so many vials". So I was definitely reassured.
He started counting "1... 2... 3..."
He says, "Awww, yes, many people think so much blood with such a long list"
"5... 6... 7..."
"It will be so easy, and we be over it before you know it."
9... 10...
"Well, maybe tiny bit more than normal" as he continued counting.
"11... 12... 13..."
"Yes, we get up there, but I drawn 32 vials before and we not there yet!"
"15... 16... 17..."
*he chuckles*
*quietly counting now*
He finally stopped counting at 21 vials; "Only 21 vials of blood! Yes, more than I think, but I use fast needle - no problem."
My comment to him was "fast needle equal big needle." He stated, "You quick to draw." I told him that he had better be quicker!
He puts my name stickers on the blood tubes and 'secretly' pulls out vial number 22. I saw him. He saw me - and grinned and winked.
And so it began.
I fainted at about 18 - I told him it was coming! He assured me - "Don't, it be ok".
It wasn't.
3 shots of ammonia up my nose and I was ready to go again. Blood draw over.
Yeah, THAT was easy...
We hopped from the 11th floor, to the 5th floor, to the 1st floor and several more on a regular basis over the next two days...
I had a CAT scan with contrast of my sinuses, abdomen and pelvis.
I saw Drs who asked tons of questions; Dermatologist, Rheumotologist, GI... I don't remember how many Drs I saw - or how many questions were asked - but many.
I was probably still trying to find my blood.
Went back to my team leader, got some blood results - yes, that quick. Same day and we had some of the results!
My CD 4+ count had dropped from the previous number of 63 to 41. She assured me that it was common to drop, and people with CD4+ counts of less than 10 had no visible problems so I was reassured.
2 days of Drs, tests and the results were the same; I am 'normal' in all the other tests, "very interesting" in the blood work, and just have to jump right on an infection of any kind.
And day 2 I got more results of tests; more blood work, and the results of CAT scans...
What did I find out?
~ Best parking off of West Cedar Lane in parking garage.
~ 'Good' food in basement cafeteria
~ Fast snack on 1st floor
~ Small refrigerators on 11th floor lobby - free goodies for the taking.
~ Carry water because you may never have time to stop and get it.
~ Don't forget to get your parking pass validated or the lady at the parking garage kiosk gets very agitated and speaks her native language very well.
Oh, you want to know what the medical team found out?
The team told us the symptoms of ICL are all over the board; no apparent common denominators. They find that the FORTY FIVE of us they know about have only one common symptom; extreme fatigue. They assume there are a few more ICL patients out there that have not been discovered, but we are the 'known' 45 ICL's. They agreed that ICL is a extremely rare blood disorder and they know very little about it and do not know what causes it. It is non-contagious. They are in the very early stages (2 years into the study) and still know as little as they did at the beginning since there are so few of us. (By the way, there was a study started in 1992 that had about the same number of patients and the basically the findings in the 10 years it took place.)
There is indeed no help, no cure and no clinical trials in the foreseen future.
These are the 'knowns':
Bone marrow transplants are dangerous to us.
Blood transfusions are of no help to bring our counts up.
Our bodies do not recognize that we may have an infection/cancer/fungus on board so we need to be aware of changes.
That is about it. When they stated "no new news", they were not kidding!
They all agree that quality of life is important and encouraged me to do whatever made me happy. :-)
I CAN continue my work with CASA, I can work at a job (Ha! at my energy level?), and I can continue life as 'normal' - there are no restrictions other than get in to a Dr as soon as I am ill - and if I needed them, just give them a call. They can oversee my care from NIH if needed. I have direct phone numbers for Emily and each of my Drs at NIH.
I am waiting on a few test results that take time. One is the Sjogren's Syndrome results. I had 4 of the 5 markers and they 5th one was the saliva gland biopsy (OUCH!) that they took. Results from it should take a week or so.
The staff is INCREDIBLE! Each and every person we encountered at NIH was super friendly, helpful and pleasant. It was not super busy as you would expect. I guess just the people in the study were all that was there. It is much less hectic that at a normal medical clinic or hospital.
And that was the end of my visit.
Except they advised me they needed one more vial of blood - they decided they needed to check something else that came up during the question and answer sessions.
23 vials of blood drawn and I am A-OK!
As far as I know, I go back in a year unless I am contacted again or entered into another study.
We survived NIH AND Washington DC! See?
The best part was visiting with some very dear friends... more on that later!
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