Category: "Idiopathic Hypersomnia"
I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.
This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....
What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)
I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.
From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.
So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....
At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year , but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... )
Somebody pointed out that having Sleep Apnea disqualifies you from joining/staying in the National Bone Marrow Registry.
Even though they say 80% of marrow donations are done using an apheresis (think plasma or platelet donations)....
The explanation is:
Patient and donor safety is our top priority. Donor guidelines are developed by our Donor and Patient Safety Monitoring Committee. The committee is made up of medical directors from NMDP donor, transplant, apheresis and collection centers, a donor and a patient.
The primary risk associated with sleep apnea is related to marrow collection, which is a surgical procedure. Registry members must be able to donate either marrow or peripheral blood stem cells, depending on the needs of the patient.
Regulating anesthesia is more difficult in patients with breathing. After surgery, marrow donors may require narcotic pain medication, which can further depress breathing. In patients with sleep apnea, even a small amount of anesthetic sedation can cause decreased airflow.
Despite the risk, some registry members express their willingness to assume the risk in order to help a patient. While the NMDP appreciates the courage and compassion that motivates them, it would be unethical for the NMDP to allow donors to do so.
To learn about other way to help patients and their families, visit http://www.marrow.org/HELP/index.html?src=tabinvolved
Of course, the explanation then raises the question of other disorders, such as narcolepsy and/or idiopathic hypersomnia....who also can respond differently to anesthetic or pain meds.
Regarding your questions about narcolepsy or idiopathic hypersomnia disqualifying a donor, it would best be considered on a case-by-case basis to determine the extent to which it affected breathing, and what impact it might have on the ability to donate.
So, there you have it...if you have sleep apnea, they tell you to go away... But, if you have some other condition of similar or greater risk...they'll let you in....because not waking up from anesthetic is okay if you keep breathing? Though one also wonders if they fully understand what sleep apnea can be?
At some point after my diagnosis for Obstructive Sleep Apnea and my continuing problems that seemly too perfect CPAP compliance didn't solve, I wondered about the existence of a support group in town.
Eventually I found the AWAKE group, but that doesn't meet very often or regularly.
Then I started to wonder if there was or could be a support group at Kansas State University...not sure if that was before the word Narcolepsy was raised with me....
But, then the article linked above ran in the K-State Collegian...and in the comments to the article was the thought of a sleep disorder support group for K-State. So, I decided to send Megan Reynolds an email about the possible formation of such....along with a bit of my plight
The idea got tossed around, we talked about meeting, but neither happened before the end of the semester. And, I wasn't sure about bring it back up in the fall. But, things happened. I've been meeting people online, learning more and more about the subject, and then I was contacted via the NRG side of this site about whether there is a sleep disorder support group in the area. And, then that prompted me to bring it up again.
During the early exchange, Megan had said that she wanted to meet me....but I'm shy, so I avoided that part But, yesterday I get a call...she's looking for me. And, I went ahead and said where my office is (co-workers commented that I shouldn't have done that ) But, we finally met. At least I'm pretty sure we did.
So, I finally made the trip over to Disability Support Services to make my interest known, and maybe further the possibility of the group happening. Perhaps something will come to be later this fall. Fingers crossed.
Not sure what the time frame is for me finding out why I still have most of the symptoms I had before CPAP, along with a bunch that I had forgotten that I had. That the seeming perfect resuls of being on CPAP....