Trial Ends

So the trial ended. I never used it, as the few times I actually needed it, they were closed.

Now to read the info for the new trial and decide if I want to participate in a trial for something with a placebo option. It's called Icatibant.

Google, here I come.

Prednisone

Just as I lay down to sleep, the nausea hits. It's been every night for a couple weeks, and I'm starting to wonder if it's totally in my crazy head. Why only at night?

Without fail, I lay down to relax, and the shivers start. Followed by upset stomach, and that feeling of waiting to vomit. I remember when I was pregnant, and I would lay as still as I could, and wait for the wave of nausea to pass...this is the same feeling, only it doesn't really pass. Some nights I fall asleep and it vanishes. Other nights, I wake up in the wee hours and after assessing the chances of puking, make the walk to the kitchen to take a Benadryl and Prednisone. I'm not sold that these do anything, but the antihistamine knocks me out, and well, the Prednisone gives me a bloated feeling and a headache? Not sure that's a good thing...

In defense of these meds, I have yet to visit the UCLA trial. I hope I don't see those people for a long time...not that I don't like them, but if I'm seeing them, it means I'm sick. So, I'd rather skip it. I told them not to take it personally.

Morning comes, and I feel exhausted...better, just tired. This bloody weather is NOT helping, but hopefully this bag of Sun Chips and Vitamin Water will. Don't judge me, sometimes a girl just needs a bag of chips for breakfast. Don't tell my acupuncturist.

Welcome to the Study

Got the call--accepted to the UCLA study! With this comes great piece of mind that when I have a brutal attack, I can page them and get the treatment I need...

What's that? Oh, the clinic is closed for a week? No problem. I'll do my best to stay well until then.

Like I said, piece of mind. Well, starting next week, I guess. Gotta love budget cuts.

UCLA Clinical Trial

The morning of meeting the clinical trial team at UCLA had finally arrived. More than anything, I was excited to meet the fancy Dr. Riedl--a man who actually knows all about this disease, and can answer questions with more than, "wow, I wish I had actually heard of this..."

As I pull up to the gorgeous Ronald Reagan wing of UCLA medical center, I am amazed at how I feel like I'm visiting the Getty--it's no wonder this is where Michael Jackson was, it's right up his alley. The valet parking dude takes my car, and is very friendly. Yes, that's right, valet parking (and the best part is, the trial covers it).

Once upstairs, I approach the nurses station, and they know who I am. A very friendly nurse named Robert takes me into a room and makes me very comfortable. "Are you in any pain? Do you need anything?" I said no, then realized I should have asked what my options were first. Luckily on this day, I was feeling pretty good, so I just drank my decaf coffee.

As I sat in my posh hotel suite I almost felt guilty. I kept thinking about people in other countries, even in our country, who are not fortunate enough to have access to such amazing care. I felt very secure, I must admit, and thankful.

For the next two hours I was able to talk to the doctor, get all the details of the trial, ask a million questions, and fill out tons of paperwork. I was feeling more and more comfortable with the idea of this whole thing. Less of a lab rat, more of a lucky sucker to live in LA. Dr. Riedl was comforting, nice, professional, and honest. I kept finding myself wondering what he's like when he's not at work--does he ride a Harley and bungee jump from high rises? Or does he have a lovely, immaculate home in Malibu with little dogs and a flat screen TV that he watches the food network on? I have always enjoyed making up backstories for people, I think it's fun, and more often than not, I am totally wrong. I even like that part of it.

After the doctor leaves, my Robert the nurse takes boat loads of blood from me, and gives me an EKG. "Your heartrate is slow, have you been told this before?" Uh, no. "It's normal for people who work out a lot, but I assume with two kids you don't do much of that..." Are you saying I'm chubby, Robert? I thought I liked you..."you know what I mean," he clarifies. Uh huh. So I tell him that I DO exercise, and he asks where and I tell him and he says he works out there too...turns out his partner takes the same spinning classes I do! Small world. Suddenly we are pals and I'm not the fat, sick mommy chick he's offering pain meds to. Funny, even through all this, all I want to know is where he bought his watch. It's crazy cute. I also try to talk him into being my nurse friend who will come over to my house and do these infusions for me so I don't have to do them for myself. He laughs, says I'm funny. I don't think he realizes that I'm half serious.

Now I wait. Wait for results, wait to be accepted, wait for the next attack. I'm trying to find my zen pants about the whole thing, but it's still hard. I know it will get easier, and every time I freak out I have to remind myself how fraggin' lucky I am to have access to this and so much more...life is good. I honestly believe that. Now if I can just find that watch online...

Oatmeal with a knife

I got into work this morning with a packet of oatmeal I intended to make for breakfast only to discover that I had no bowl or spoon, only a paper cup and a plastic knife. Determined to eat, I am making it work.

As I began licking my oatmeal off the knife, it occurred to me that this is how my current HAE treatment is--I don't have what I need, what works. I have something that maybe sometimes can get the job done, but it's not ideal.

When I woke up at 3:45 this morning with chills and a stomach ache I did what I was told to--take a Benadryl and a prednisone, drink a glass of water, and hope it makes it less brutal. It did, aside from not sleeping and the heachache the steroids give me...and now I am at work. Not feeling good, but not feeling terrible.

I'm not starving, I'm eating oatmeal. Off a knife.

Medic Alert

I was told to get a Medic Alert bracelet, and after putting it off for a week and a half, I ordered one today. I don't know why I have such a block against pursuing this stuff, it's such a simple thing to do...

The HAE society (Lois, to be specific) told me who to call and what to engrave and everything. Piece of cake, and now it is done. I hope it's cute. They have so many styles, I have a feeling it will be great.

Each of these little steps make me feel closer to comfort. Ever since the last ER visit I have been a little uncomfortable, unsettled. Yet every time Dr. Green calls me and tells me she learned something new, or talked to someone about treatment, it makes me feel a little more peaceful. I really look forward to the day when I really feel stable in my plan, when the idea of leaving town doesn't make me feel like I'm going to have a panic attack.

In the meantime, I use this as an excuse to play with the kids more, relax more, play more Scrabble on Facebook. I think today I'm cutting out early to take the kids to the beach--that should help my stress level, right?

The ER scare

The emergency room doctor walked in and looked at me, horrified...she didn’t know what was happening and when I told her I had Hereditary Angiodema, said she’d never heard of it. After putting me into a room where I lay alone for hours she gave me a Benadryl, told me to push the button if my throat closed so they could intubate me, and went to Google HAE.

This was all it took for me to start to take this seriously.

"Through your denims, ok?"

I have been told in the past that Epipens don't do anything for this condition, but was recently told by a fancy pants at UCLA that it could potentially buy me a little time if my throat was swelling. That is reason enough for me to get one.

The very helpful allergist, Cathy Green, said she would help me in any way she could, so when I said I needed an Epipen she said, "no sweat." She does, however, require that I come in and have a training session with the nurse to make sure I know what I am doing. Fine.

The appointment takes about 15 seconds. The nurse hands me a plastic bag with Epipen written on it and tells me there is a DVD I can watch (uh huh) and a free travel case for my epinephrine. Fab. Then she pops the cap off one without the needle, slams it against her leg to demonstrate and hands it me to do the same. I do. "Don't take the pants off. Through your denims, ok?" I smile and nod, even though it takes me a minute to figure out what she is talking about. "Don't waste time taking pants off..." OH, that's what she means. OK, no sweat.

I leave the office with my first little thing in my HAE arsenal, check. I can't help but wonder what's next...

Enrolling in the clinical trial

When the idea of a clinical trial was first mentioned to me I was horrified. Clinical trials are things people in college or jail sign up for to make money, and occasionally leave with flippers or hairy eyelids, right? Apparently not.

This one is called an "open label trial." "An open-label trial or open trial is a type of clinical trial in which both the researchers and participants know which treatment is being administered," according to Wikipedia. Basically this means no placebo. That was my main concern--I didn't want to be in pain and ill and receive a needle full of saline, you know? I want to know exactly what I am receiving, and what it is supposed to do. That's why I research things on Wikipedia. Ha.

I have to say, I have had this condition my whole life. I have tolerated it, and dismissed it. Ignored it, and pretended it is not as serious as it is. When people looked at me and said, "wow. I have never heard of it," I think it made me doubt that it even existed. The trial is giving me an opportunity to meet and talk to someone who actually HAS heard of it. Knows people who have it. Has TREATED people with it. I never thought I would be so excited to be a lab rat.

HAE realization

I have had this since I was born. Hence, the Hereditary part. The attacks came more frequently after children, and now has apparently reached the point where I have to embrace it as a part of who I am, and will continue to be. The best thing I can do is try to educate, try to share, try to help others who are as in the dark as I am.

I'm not a very good writer, but I don't think that is the point. I'm going to share my experiences and thoughts as I travel from where I am now, to wherever I am going.