I never got a call back yesterday after my frantic efforts to contact my clinical trial nurse on Friday in reference to my 10 year old's appointment today for his physical and vaccinations.
I called her this morning and apparently she never got my message. When I asked if it was ok for my son to get vaccinated, she misunderstood and asked if I meant that I wanted to get vaccinated.
I said "no! It's just that the new consent form had all that added stuff about not being around people with chicken pox or those who had been recently vaccinated and I just wanted to make sure I do the right thing. If he's not to get vaccinated, then I'll send someone else to take him to the doctor's office so I'm not exposed to kids with the pox, and I'll let them know not to give him the shot."
She said "let me check your file and I'll call you back".
Within 10 min. she had located the results of the lab work that Novartis had done on me, same as all the rest of the trial participants in light of the 2 deaths from viral infections related to chicken pox.
She said "Oh, you don't have to worry! You have a strong immunity. In order to be considered a positive test for antibodies sufficient enough to allow you to stay in the study, you must test at a level of 1.0. Your levels are 1.70. You are very immune, so don't worry about it. Go get your son vaccinated and don't be afraid of the doctor's office."
I breathed a sigh of relief in knowing that I could accompany my son and get all the dirt from the doctor first hand instead of trying to rely on John for any details. Whew.
Being the compulsive worrier that I am, though, on the way to the appointment it occurred to me that lab results are often misread or inaccurate....what if....
Nooooooooooo! I have to quit thinking like that! But I am a card carrying member of the WCSDDA. AKA Worst Case Scenario Day Dreamers' Association. You cannot possibly know or control what the future has in store, so why not imagine the worst case scenario and then be pleasantly surprised and relieved when you survive another day?* It makes living on the edge more attainable for those folks who don't have the finances to go sky diving or mountain climbing. For those of us who have mundane lives, the WCSDDA is a way to invigorate yourself and keep your pulse pounding.
*Not for the feint of heart or for that matter, not recommended for people who have no imagination.
Tuesday, March 24, 2009
Sunday, March 22, 2009
Avoiding a virus you can't see
Just how do you do that? Avoid something that is common, yet unseen?
The informed consent I had to re-sign the other day at my 18 mo. study checkup specifically stated that it could lead to fatal complications to be exposed to the Chicken Pox virus.
I read the words knowing that Novartis has to cover their butts and include anything that could possibly happen in the informed consent, so I wasn't really all that alarmed about it. After all, I already have HSV in my system so I'm not really sure I can even GET chicken pox. I don't think I would be as susceptible as say someone who has never had any type of herpes related viral infections.
I left without a copy of the informed consent -- that's how worried I was -- I forgot to even get my copy.
But on Friday a routine call to my son's doctor's office left me rethinking my level of concern over this new instruction warning me to stay away from anyone with Chicken Pox or anyone recently vaccinated against it.
My son has asthma and he's on Singulair and Brovex as maintenance therapy that seems to (finally) have his breathing issues under control. He ran out of Brovex and there wasn't another refill left, so I called his doc's office to see if they could call it in for me.
Then it occurred to me that he really needed his yearly physical, so why not schedule that at the same time? I got an appointment for next Tuesday.
As we were about to conclude the call I said "oh, one more quick question..." and proceeded to ask if they used a live virus for Chicken Pox vaccines and if they had many kids coming in lately with Chicken Pox.
Once I explained why it might behoove me to know the answers, she got the nurse to call me back.
Turns out they do use a live virus. I had gotten that confused with the Polio vaccine (I think) that they used to give a live version of but don't any more. The Chicken Pox vaccine is live and always has been.
So my dilemma is, do I go with him to the doctor's office and just wear a mask and take my hand sanitizer with me? Do I take that risk and expose myself to possible contact with the virus? If I choose not to go, however, then I'm not in full control of the interaction with the doctor. I really like having first hand knowledge of what the doc has to say straight from his mouth and not a "he said something about something" version from someone else (i.e. John) who might not a) pay attention, b) understand c) worry enough to ask the right questions in response.
A true hypochondriacal worrier's nightmare!
Of course, the equal and opposite worry is that I will contract Chicken Pox and it will eat me alive and kill me while Novartis looks on and shakes their heads and "tsk tsk's" me because they told me so and my 22 sets of initials and one full signature prove that.
And on top of that, the nurse said my son is due for his shots. One of those is the Chicken Pox virus that "they" are recommending everyone get revaccinated with these days.
Obviously he can't get his vaccination while I'm in this study, but what about later? I mean, it's my deep desire and greatest wish in the world that I get to stay on Fingolimod (despite it's stupid name) well past the end of the trial and on into my golden years after it gets approved.
What does this mean for my kid? He will be always vulnerable to Chicken Pox? Or does the fact that he already gets wicked cold sores (a strain of the herpes virus that also causes chicken pox) mean that he's got some build up of antibodies?
I sure wish I knew the answers. It's not just the strategy of how to get him seen by his doctor without unnecessarily exposing myself to the virus that is the issue. He's a kid who goes to public school. I spend some of my time at that school, around lots of kids. I go grocery shopping...where there's lots of kids. I go to Wal-mart...where there's lots of kids.
How does one know if someone is contagious? And is it airborne or can you only catch it from direct contact? These are some pretty important questions that need to be answered given that I have a 10 year old, I have to buy groceries, and I tend to go to Wal-mart for stuff that I absolutely can't find to buy online or don't want to pay shipping for.
Trust me, if I could order groceries online and have them delivered, there would almost be no reason to leave the house and that would be fine with me. Getting out of this place via the portal of my computer monitor is escape enough. I like my life, I like my plot of land and my little abode. If I didn't kill every plant I ever touched, I'd plant a garden and have less reason to ever leave.
But, since I have brown thumbs and a kid who attends public school, avoiding the world beyond my staked out territory is impossible.
I put in a call to my study nurse and hopefully she'll call back on Monday so I know what to do on Tuesday for the appointment. I have half a notion to make John take him, but when they get in the exam room, to call me on the cell phone so I can listen in and ask the right questions, besides hearing what the doctor says first hand.
And someone has to remember to tell him not to vaccinate our son. I guess I could always pin a note to him with all the info on it. (our kid, not John)
When the trial nurse has given me the best plan of action, I'll post back the results.
The informed consent I had to re-sign the other day at my 18 mo. study checkup specifically stated that it could lead to fatal complications to be exposed to the Chicken Pox virus.
I read the words knowing that Novartis has to cover their butts and include anything that could possibly happen in the informed consent, so I wasn't really all that alarmed about it. After all, I already have HSV in my system so I'm not really sure I can even GET chicken pox. I don't think I would be as susceptible as say someone who has never had any type of herpes related viral infections.
I left without a copy of the informed consent -- that's how worried I was -- I forgot to even get my copy.
But on Friday a routine call to my son's doctor's office left me rethinking my level of concern over this new instruction warning me to stay away from anyone with Chicken Pox or anyone recently vaccinated against it.
My son has asthma and he's on Singulair and Brovex as maintenance therapy that seems to (finally) have his breathing issues under control. He ran out of Brovex and there wasn't another refill left, so I called his doc's office to see if they could call it in for me.
Then it occurred to me that he really needed his yearly physical, so why not schedule that at the same time? I got an appointment for next Tuesday.
As we were about to conclude the call I said "oh, one more quick question..." and proceeded to ask if they used a live virus for Chicken Pox vaccines and if they had many kids coming in lately with Chicken Pox.
Once I explained why it might behoove me to know the answers, she got the nurse to call me back.
Turns out they do use a live virus. I had gotten that confused with the Polio vaccine (I think) that they used to give a live version of but don't any more. The Chicken Pox vaccine is live and always has been.
So my dilemma is, do I go with him to the doctor's office and just wear a mask and take my hand sanitizer with me? Do I take that risk and expose myself to possible contact with the virus? If I choose not to go, however, then I'm not in full control of the interaction with the doctor. I really like having first hand knowledge of what the doc has to say straight from his mouth and not a "he said something about something" version from someone else (i.e. John) who might not a) pay attention, b) understand c) worry enough to ask the right questions in response.
A true hypochondriacal worrier's nightmare!
Of course, the equal and opposite worry is that I will contract Chicken Pox and it will eat me alive and kill me while Novartis looks on and shakes their heads and "tsk tsk's" me because they told me so and my 22 sets of initials and one full signature prove that.
And on top of that, the nurse said my son is due for his shots. One of those is the Chicken Pox virus that "they" are recommending everyone get revaccinated with these days.
Obviously he can't get his vaccination while I'm in this study, but what about later? I mean, it's my deep desire and greatest wish in the world that I get to stay on Fingolimod (despite it's stupid name) well past the end of the trial and on into my golden years after it gets approved.
What does this mean for my kid? He will be always vulnerable to Chicken Pox? Or does the fact that he already gets wicked cold sores (a strain of the herpes virus that also causes chicken pox) mean that he's got some build up of antibodies?
I sure wish I knew the answers. It's not just the strategy of how to get him seen by his doctor without unnecessarily exposing myself to the virus that is the issue. He's a kid who goes to public school. I spend some of my time at that school, around lots of kids. I go grocery shopping...where there's lots of kids. I go to Wal-mart...where there's lots of kids.
How does one know if someone is contagious? And is it airborne or can you only catch it from direct contact? These are some pretty important questions that need to be answered given that I have a 10 year old, I have to buy groceries, and I tend to go to Wal-mart for stuff that I absolutely can't find to buy online or don't want to pay shipping for.
Trust me, if I could order groceries online and have them delivered, there would almost be no reason to leave the house and that would be fine with me. Getting out of this place via the portal of my computer monitor is escape enough. I like my life, I like my plot of land and my little abode. If I didn't kill every plant I ever touched, I'd plant a garden and have less reason to ever leave.
But, since I have brown thumbs and a kid who attends public school, avoiding the world beyond my staked out territory is impossible.
I put in a call to my study nurse and hopefully she'll call back on Monday so I know what to do on Tuesday for the appointment. I have half a notion to make John take him, but when they get in the exam room, to call me on the cell phone so I can listen in and ask the right questions, besides hearing what the doctor says first hand.
And someone has to remember to tell him not to vaccinate our son. I guess I could always pin a note to him with all the info on it. (our kid, not John)
When the trial nurse has given me the best plan of action, I'll post back the results.
Subscribe to:
Posts (Atom)