Sunday, May 25, 2008

Nicosan--The Orphan Drug

Nicosan Trial: Week One

Okay, several people have voiced concerns over me getting a crises a few days after I started taking Nicosan. I truly don't believe that it was related or that Nicosan triggered my crises. I think that I was rundown, sick, dealing with the stress of the trip, traveling, the new job and strep throat. All these factors by themselves can trigger a crises, talk less of all of them combined. So let's rule out the fact that Nicosan caused the crises...that's totally not true.

My primary care physician does know that I'm taking Nicosan, although he doesn't recommend it (he would prefer I take Hydroxyurea). But I have to do what I feel is best for me and he knows this. He is going to monitor my progress with Nicosan off the record.

The medication comes in a large capsule that goes down very easily. I've taken it faithfully for a week, and I haven't had any pains at all! I don't know if it's relatable, but I'm trying to be as objective as I can. Usually I have pain minimally twice a week or more, however this week I haven't had any.

There have been absolutely no side effects, my appetite is the same, my energy level is fine and my blood work is great. My hair isn't falling out. The only documented side effect from Nicosan is flushing (like blushing on white people), but I haven't experienced this once.

So that's the update for the first full week on Nicosan.

Saturday, May 24, 2008

Connecting With Someone With Sickle Cell

I just got off the phone with Milan, a reader from the blog who is the absolutely most fabulous chick I've had the pleasure of meeting with sickle cell. She's like a young version of me, all spunk, feisty, full of determination, attitude, sass and heart. She's actually what I wish I was when I was her age; she's so smart and self-aware.

We spoke for an hour and I must say, talking to someone else that has sickle cell is one of the most liberating experiences that you can have. I heartily recommend it to everyone that has sickle cell. We go through our lives in isolation, rarely coming across people that really get what it is to be like us, to go through what we go through. Sure we do come across people that "understand" but unless actually you have sickle cell, you have no idea!

Milan and I connected on so many levels, and we've actually been through alot of similar experiences. I think talking and sharing with her opened me up to alot of issues that sickle cell warriors go through that I haven't even begun to address on here, like how to deal with a doctor that is butting heads with you, ignorant medical professionals, isolation in white communities and when insurance gives you the boot.

So, for meeting people with sickle cell, the internet is such a valuable resource. Don't be afraid of using it. Try Myspace, Facebook, Yahoo groups or forums. Try your doctor, he might have another patient with sickle cell that they can connect you with. Don't be afraid to pick up the phone, dial the number and actually talk live with another sickle cell warrior.

Friday, May 23, 2008

What the Pain Feels Like

This is one of my absolute favorite PSA's about sickle cell. Elise is totally kick ass, a warrior of the highest grade and I adore her accent. Her she talks about the pain that we sickle cell warriors go through.

If you want to watch the whole series, click HERE or visit

Wednesday, May 21, 2008

Crises #2: What Happened

Dates: May 9-17.

After spending Thursday night fighting cold and flu symptoms, Friday morning had me dealing with a major way. None of the trifecta of painkillers, (Oxycodone, Vicodin and Dilaudid) could help me, even when I majorly dosed up on the trifecta. This means that the pain was so out of control that even after taking enough meds to down a horse, I was still up and wracked in pain.

Norio took me to Urgent care and I was taken straight to the back. They looked in my chart and gave me IV Dilaudid, which didn't help. It took forever (like 4 tries) to get an IV ...they even looked on my feet, but finally they got one in my thumb. I was dehydrated, zonked out and still in pain. They transferred me to the hospital and that's where the fun stuff begins.

I was in the Progressive Care Unit for some reason, because the docs felt that my breathing wasn't on par due to the high level of pain meds I was on. On Saturday evening, Norio got a call from the docs saying that they would have to intubate me to protect my airway. Talk about something out of an episode of HOUSE.

Next thing you know, I wake up Sunday morning on the ventilator, struggling trying not to pull the damn thing out of my mouth. It was awful, it felt like a giant cactus shoved into your chest all the way down to your stomach and the machine was forcing me to breathe. The docs came to me and told me that my choices was to either stay on the vent and get sufficient pain meds, or get off it and be in some pain. They didn't want to OD me. I was like, TAKE THAT SHIT OUT RIGHT NOW! A few hours later to my relief they did. Sometime during that stint someone had stuck a PICC line in my arm (thank goodness!), which was there for the rest of the admission.

I think I was in the ICU for a few more days for observation and then I got moved to a regular med surg unit. I didn't really remember much until Tuesday when my sister flew into town to take care of me and make sure I wasn't getting kilt. (I love my family!) She stayed the whole week and is just leaving tomorrow...I'm going to miss her. She was at my bedside almost 24/7 and we talked alot, when I wasn't sleeping (which wasn't often!)

There were some more issues with pain control through the rest of the admission but by Saturday I was ready to get the hell out of there. I was sick of the vital signs, constant supervision and inability to do anything by myself. And I was sick and tired of the nurses as nice as they were and the crappy ass food. It's good to be home!

Tuesday, May 20, 2008

Crises #2 of 2008: The Triggers

First of all, let's focus on the triggers:
  1. The Trip to Hawaii: I was sick on this trip but not a major crises zone. More like "I'm warding off a major crises with rest and meds, please God don't let me get majorly sick!" I did get better towards the end of the trip though. It was a relaxing vacation, and I'm glad I went.
  2. The Flight Back From Hawaii: Was exhausting as all get out. Then on top of that, we flew into to California and had to drive back up 10 hours to Oregon after a busy day spent running errands after flying in a red eye to the mainland. That part of the trip was not thought out well, but most of the time, you plan the whole trip...and just forget about the getting home part. It was rigourous.
  3. Starting Work the Next Day: I should have taken a few days off to rest after coming back to town, but due to the fact that my insurance wouldn't kick in if I didn't work that day I had to work. New job, orientation and a full schedule.
  4. Getting Strep Throat from Norio: Some kisses actually are to die for. I caught strep from him and spent the week fighting the flu-ish bug, sore throat, cold symptoms and downing Dayquil at work. Not fun. I knew I was going to get sick.

Monday, May 19, 2008

Back Again

Well, the last week has been rough to say the least. I'm going to explore the triggers of my last crises as I usually do in my next post, but this one was really, really awful. The last time I was sick, I thought it was my worst time ever...but this time, this puts everything in a whole new perspective.

I was in the ICU---On the ventilator!

OMG, it was absolutely crazy. What's even more bizarre is that when I was struggling for life, my mom in Nigeria had this eerie dark premonition and woke up from her sleep and started praying hardcore from me. My cell phone was ringing with my friend DC from the East Coast leaving me a message and saying that I was heavily on her mind and she just wanted to see how I was doing.

I was zonked out and unconscious most of last week and finally through bits and pieces from my family and the hospital workers, I was able to piece the whole thing together. All right, I'll give you the skinny in the next post. But I just want to take this moment to thank God for life and love and family. And make sure that you appreciate every moment that you have because you never know when you will be gone.

Sunday, May 18, 2008

The Patient

I think I'm officially the only vented person that took a picture as well. What a dork!

Sunday, May 4, 2008

Nicosan Trial

Today is my 2nd day of being on Nicosan. One of my readers believes so much in this medication that he ordered and shipped it to me! Thank you for let's get this guinea pig in motion.

So far, I haven't had any side effects, no sickle cell pain but I haven't really noticed a difference yet. I know the research shows that effects aren't felt until the 4th week but I want something dammit! I want something to know that it's working.

Well here is the real test, my ticker shows that another major crises is supposedly looming up in the next 4-6 weeks. So if Nicosan works like a charm, then I should skip that crises and be healthy majority of the summer.

We'll see...