M had her 18 month well check-up today. I find myself dreading the well check up appointments more than I do CF Clinic. What does that say about me? I think it has a lot to do with the idea that most people at the ped office look at you like ....CF what?
Which is EXACTLY was bothers me the most. I mean let's face it. I know more about CF then most of the people that work in the dr's office there. I am not saying that the dr's are incompetent or anything..just feel like in reality the well check ups are really a "joke." I end up telling them about how she HAS to take certain meds, and why we do things a certain way, and why I am OCD about people washing their hands....instead of feeling like the dr is explaining this all to me.
I know this is NOT madeline's CF specialist...but a part of me still gets annoyed by their ignorance of what CF really is.
For example:
1. Dr asks, "She is on medicine called zen pep?" Me: "No, actually it is a digestive enzyme. We are not currently on this since our meds arrive in BULK and we still have some left of the previous enzyme called Pancreacarb.(being that she takes 6 of these damn capsules every time she eats!!!...you should see the boxes of this stuff in my house ,dr...it's not a CVS pharmacy drug...every month you get another bottle. I have 50 bottles in her closet.) Then, I have to go on to explain that we will be on Zen Pep soon though since the other enzyme was not FDA approved as of April 2010 and this is why I listed it on the paperwork. Really?
2. Me to staff and drs: "Um..do you mind washing your hands? Madeline has CF and we try to minimize germs. I would really appreciate it. (insert fake smile) Dr and staff: "oh, okay ...well i did just wash my hands before I came in..."
Really? Because you just touched the doorknob, your pen that you used to take notes on the last patient after you touched them, etc. I am thinking: Don't YOU PEOPLE get WHY I am asking for this? For heaven's sakes....you are the medical team that checks my child and tries to keep her WELL!
3. Nurse Assistant: " Is your daughter on any medications?" I seriously get asked this EVERY TIME. I just told you she had CF. I tell you every time what meds she is on.... Me: "Yes, she is on a lot for the CF, do you need me to list ALL of them or did you want to just look back at the list and I can tell you which ones have changed if any?" Clearly, they are not use to working with chidlren that are anything but healthy?!
4. After listening to Madeline's lungs, DR says: "Wow, she sounds really clear...her lungs sound good." This happens EVERY time we go to ANY dr since M was first diagnosed. Me: I smile with a fake smile and say "that;s great." What I am thinking: duh, i mean do you expect to hear her gasping for breath just because she has CF???? M is only 18 months...her lungs shouldn't sound bad YET. I am always dumbfounded by the fact that dr's don't realize this. If she sounded bad EVER...she would be admitted at the young age of 18month because at 18 months no child should sound BAD in their lungs with or without CF. Again, another misconception about CF...not to mention that she "sounded great" when she had a staph infection at 3 months and only x rays picked it up....So, "sounding great" doesn't mean that your CF is always under control ...
5. the DVD player- They look at me like I am crazy for bringing in a portable DVD player...I swear every dr does but the CF clinic. I want to say: DO you realize what my daughter has to endure at a young age at ALL of these dr appointments? She has been to more doctors in her 1 year of life than I did at 18 years old. Do you realize what bad connotations she take with her about dr's if I don't make it seem fun for her or at least tolerable with a DVD to loose herself in?
The child tries to throw up when she sees a doctor. Could that be from numerous PICC line attempts, loads of blood draws, etc? Seriously, I am not jsut one parent spoiling her bratty kid. I am just making life tolerable for my CF child.
6. Waiting room. "Can I wait out in the hall or in a room? My child has CF and should not be around those that are coughing and sick in such close confines." THis is when I get the wierd stares. Is that hard to ask for??
So, really this list isn't just about M's pediatricians office ...it's about ALL the doctors that M sees besides her Pulmonologist at J. Hopkins. It really is no ones "fault" . This is really about a mother who is sometimes tired of fighting people to just educate and protect her daughter from a life threatening/shortening lung disease. It's about where ever I go...no one seems to understand a life with CF for M..except those in the CF Community and her specialists. This is
just the way it is but, truthfully it sucks that CF isn't more well know and just plain UNDERSTOOD by others.
It is exhausting to explain why all of this is important to you...and that you will do ANYTHING to protect your child from lung disease...especially understanding that CF is truly about preventing infections...and not about waiting for things to happen and then treating!
And this, folks -is what I HATE going to the pediatrician (or any other dr that deal swith M other than CF) because the constant "fight" i have to partake in.
I know this "fight" is just beginning of M's long life but trips like this today is just a constant reminder of Madeline's endless fight to stay ahead of this disease. I am her biggest advocate..
and sometimes...the pressure is a bit much.
On another note here are her stats:
weight: 28.5 (92 percentile) We are kicking those digestive enzymes good!
height: 33 1/2
head circumference: OFF THE CHARTS (big brains really!)
We are still so pleased with her weight and work daily to maintain good weight gain.
Good weight is = to better lung function and health
The best news: We don't have to return to the ped's office till M is 2 years old!
Yes, one less frustration for me..
Which is EXACTLY was bothers me the most. I mean let's face it. I know more about CF then most of the people that work in the dr's office there. I am not saying that the dr's are incompetent or anything..just feel like in reality the well check ups are really a "joke." I end up telling them about how she HAS to take certain meds, and why we do things a certain way, and why I am OCD about people washing their hands....instead of feeling like the dr is explaining this all to me.
I know this is NOT madeline's CF specialist...but a part of me still gets annoyed by their ignorance of what CF really is.
For example:
1. Dr asks, "She is on medicine called zen pep?" Me: "No, actually it is a digestive enzyme. We are not currently on this since our meds arrive in BULK and we still have some left of the previous enzyme called Pancreacarb.(being that she takes 6 of these damn capsules every time she eats!!!...you should see the boxes of this stuff in my house ,dr...it's not a CVS pharmacy drug...every month you get another bottle. I have 50 bottles in her closet.) Then, I have to go on to explain that we will be on Zen Pep soon though since the other enzyme was not FDA approved as of April 2010 and this is why I listed it on the paperwork. Really?
2. Me to staff and drs: "Um..do you mind washing your hands? Madeline has CF and we try to minimize germs. I would really appreciate it. (insert fake smile) Dr and staff: "oh, okay ...well i did just wash my hands before I came in..."
Really? Because you just touched the doorknob, your pen that you used to take notes on the last patient after you touched them, etc. I am thinking: Don't YOU PEOPLE get WHY I am asking for this? For heaven's sakes....you are the medical team that checks my child and tries to keep her WELL!
3. Nurse Assistant: " Is your daughter on any medications?" I seriously get asked this EVERY TIME. I just told you she had CF. I tell you every time what meds she is on.... Me: "Yes, she is on a lot for the CF, do you need me to list ALL of them or did you want to just look back at the list and I can tell you which ones have changed if any?" Clearly, they are not use to working with chidlren that are anything but healthy?!
4. After listening to Madeline's lungs, DR says: "Wow, she sounds really clear...her lungs sound good." This happens EVERY time we go to ANY dr since M was first diagnosed. Me: I smile with a fake smile and say "that;s great." What I am thinking: duh, i mean do you expect to hear her gasping for breath just because she has CF???? M is only 18 months...her lungs shouldn't sound bad YET. I am always dumbfounded by the fact that dr's don't realize this. If she sounded bad EVER...she would be admitted at the young age of 18month because at 18 months no child should sound BAD in their lungs with or without CF. Again, another misconception about CF...not to mention that she "sounded great" when she had a staph infection at 3 months and only x rays picked it up....So, "sounding great" doesn't mean that your CF is always under control ...
5. the DVD player- They look at me like I am crazy for bringing in a portable DVD player...I swear every dr does but the CF clinic. I want to say: DO you realize what my daughter has to endure at a young age at ALL of these dr appointments? She has been to more doctors in her 1 year of life than I did at 18 years old. Do you realize what bad connotations she take with her about dr's if I don't make it seem fun for her or at least tolerable with a DVD to loose herself in?
The child tries to throw up when she sees a doctor. Could that be from numerous PICC line attempts, loads of blood draws, etc? Seriously, I am not jsut one parent spoiling her bratty kid. I am just making life tolerable for my CF child.
6. Waiting room. "Can I wait out in the hall or in a room? My child has CF and should not be around those that are coughing and sick in such close confines." THis is when I get the wierd stares. Is that hard to ask for??
So, really this list isn't just about M's pediatricians office ...it's about ALL the doctors that M sees besides her Pulmonologist at J. Hopkins. It really is no ones "fault" . This is really about a mother who is sometimes tired of fighting people to just educate and protect her daughter from a life threatening/shortening lung disease. It's about where ever I go...no one seems to understand a life with CF for M..except those in the CF Community and her specialists. This is
just the way it is but, truthfully it sucks that CF isn't more well know and just plain UNDERSTOOD by others.
It is exhausting to explain why all of this is important to you...and that you will do ANYTHING to protect your child from lung disease...especially understanding that CF is truly about preventing infections...and not about waiting for things to happen and then treating!
And this, folks -is what I HATE going to the pediatrician (or any other dr that deal swith M other than CF) because the constant "fight" i have to partake in.
I know this "fight" is just beginning of M's long life but trips like this today is just a constant reminder of Madeline's endless fight to stay ahead of this disease. I am her biggest advocate..
and sometimes...the pressure is a bit much.
On another note here are her stats:
weight: 28.5 (92 percentile) We are kicking those digestive enzymes good!
height: 33 1/2
head circumference: OFF THE CHARTS (big brains really!)
We are still so pleased with her weight and work daily to maintain good weight gain.
Good weight is = to better lung function and health
The best news: We don't have to return to the ped's office till M is 2 years old!
Yes, one less frustration for me..
Wow. Doctors are a service. You have the right to switch doctors if you are not getting adequate care.
ReplyDeleteI lucked out that our pediatrician has another CF patient in her practice so she is familiar. And she always walks into the room and goes to the sink to wash her hands & most of the nurses too. (Even before we knew she had CF) They should be washing their hands for infection control regardless of CF.
When I was a teenager and diagnosed with Chronic Fatigue Syndrome, I left my primary care doctor for one across the highway with more knowledge and willing to learn more to better serve his patients.
I'd suggest interviewing other pediatricians in your area for ones familiar with CF and set-up well & sick waiting rooms, lab for onsite simple blood work, and with any luck an x-ray machine.
Schedule an appointment to meet with the doctor in their office to discuss your concerns and what you'd like out of the relationship.
I absolutely agree! It's ridiculous. Thankfully our Ped knows about CF (I had called to make sure I got someone who was familiar with CF before choosing a Ped). But everybody else - nurses, other docs - seem to know nothing. It's disappointing but I get so tired of explaining CF that sometimes I just don't care that they know nothing. I actually bring a list of Bennett's meds to every doc appointment. I have now realized they HAVE to ask that stupid med question every time...so I have it all ready for them. But the lung thing you mentioned happens all the time - "wow, his lungs sound great!" It's actually disppointing to hear because I know they are surprised. I hate feeling like we should be surprised he sounds healthy. Because one day, he won't. Anyway, I wanted you to know that I totally agree with your post!
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