Wednesday, October 24, 2012
In large part, this is being let down by folks I trusted to care for my kids. Yesterday was another example of this. Persistence has been struggling with hearing issues, and all that stems from that, due to consistently congested ears. Nothing we've done has helped. We started seeing specialists about this early in the year, but we really amped up our efforts this fall. It's been a rough go, involving a lot of tests, poking, prodding, and constantly disrupted lives with doctor visits. She's worn out with it all. And it's a lot of hard and complex stuff for a little kid to process. She's being a champ about it, of course, because if ever a kid had a heart for putting her head down and plowing through, she's that kid.
But she's ready for it to be finished. She's ready to have it fixed. And she's ready to launch into catching up on all she's missed and gotten behind on because her hearing has been impaired.
I want that for her 100%. Maybe 200%.
You know how it feels to be a parent and love this little person bigger than your body can hold. You feel a sort of glorious despair because you know your own human failings, which include not being able to hand her the moon and make everything okay all the time, even if you know neither of these things would be good for her.
Yesterday was the day the doctor's office was supposed to take Step 1 to fixing it. Instead, they not only didn't fix anything, but they were pretty dreadful health care providers who treated my daughter...well, as if she were an inconvenience to their day and basically ignored her as if she wasn't there.
Not one person in the ENT's office even spoke to her. They spoke to me about her, over her head. My repeated gentle suggestions to "Ask her." went largely unheeded. They were just...unavailable. I could go in to detail but that's not the point. They interacted more with their machines than with us.
Worst of all, the PA who saw us, because the doctor is never available, dropped the Surgery Bomb absolutely heartlessly and then...left. My daughter freaked out. As anyone would.
I did what I could to reassure her, but, not being a surgeon myself, I wasn't really able to explain how the surgery would work or what it would be like or how they did it.
After a little Conversation in which I shared our Extreme Disappointment in the treatment, Persistence and I headed to the hospital for yet another tests: an X-Ray.
By now Persistence was getting hungry, so I rooted around in my purse and came up with four quarters. She happily put in the money, pushed the buttons for her selection and waited for her Sun Chips to fall. Except, they got stuck, right on the ledge over the opening. Nothing I did dislodged them.
Persistence and I -- who had held ourselves together through a lot already -- found this kind of the last straw. She began whining and I got sharp.
Another mom in the lobby walked over to us.
And do you know what she did?
In the very nicest voice she said, "What's wrong?"
Persistence explained the machine would not give her the chips.
"Let me see what I can do to help," she said. And she did. She tried this and that. Eventually, she pulled out her own money, bought another item, and managed to get both down.
Persistence pumped her fist in the air and shouted with exultation. The other mom smiled.
My eyes filled and I mumbled a thanks through the lump in my throat.
"No big deal," she said, "You seemed like you needed help."
And just like that. Just like that. She saw us. She heard us. She was there. There when we needed her. For 2 minutes and $1.25 she saved us.
Everything felt inadequate, every word too weightless, every explanation too weighty.
"I can't tell you how much I appreciate this," I said, "Thank you."
"You're welcome," she told me. She returned to her family. She was not in a better position. She was at the hospital for her child, same as me. She did not have some major privilege. She had a heart and she shared it.
Wherever she is, whoever she is, I sincerely hope someone does the same for her when she needs it.
I know this is a natural end point of the story but I have to go on. Because there is another Good Samaritan. Two more, actually.
Shortly after the Save the Chips situation, we got called back. I hesitated...Helpful Mom had been there first. The man called our name again and I said to Persistence, "That's us." But we still did not get up. Helpful Mom said, "You know, we've been waiting here...is there a reason we haven't been called?"
I braced myself. All day at the ENT we'd hit the big Not My Problem I Don't Care Wall. I waited for the man to tell them to just be patient. I waited for him to not care. I waited for him to make them feel Unimportant. As we had all day.
But this man stopped short, "You have? I'm so sorry, how frustrating for you. Oh no, let me go check..." and he came back again full of apologies and said they'd help the family right away.
Helpful Mom turned to me to and apologized, "I'm sorry to take your spot..."
"Oh no, no worries," I said, "You were here first. I wondered why we got called before you."
We smiled and they headed back.
Within a couple of minutes, we got called back. It was the same sweet young woman we'd met before. She's very gentle and sweet, and great with kids. She chattered calmly and cheerfully with Persistence all the way back to the exam room. She explained the entire process. She made Persistence feel like a person, one she cared about. Afterwards, she let Persistence come back and see the X-ray. She pointed out the parts of Persistence's body, naming bones. Persistence LOVED it. She felt big and important, and cool beans, she got to see inside of herself!
"I'm a skeleton," she giggled to me, "I'm a secret Halloween skeleton!"
As we left the hospital I asked Persistence if she wanted ice cream. She said she preferred a snow cone.
On we went to our favorite Hawaiian Shaved Ice Place, the SnoBall Hut. The young lady who we saw so often there during the summer was there again. She was sitting at a table studying.
I braced myself. We'd been treated too often that day as Unwelcome Interruptions to Better Things People Had to Do.
Instead she stood, and said in a happy to see us voice, "Oh hello!"
She welcomed us, gave us a beautiful smile, and chatted happily with us both. She fixed Persistence's snow cone. As she prepared to hand it over, my eyes lighted on a selection of sour flavors, "Hey look Persistence, they have sour cherry, let's remember that for next time!"
Looking at Persistence, the kind young woman asked, "Do you like sour flavors?"
"They're my favorite!" she said.
"Well why don't we add a dash of sour to the top!" the young woman said.
Persistence hopped on her toes with excitement. She rewarded the young woman with an exuberant, "YUM!" and beaming smile.
Maybe this sounds very ordinary. Maybe it is almost a dull story. Went to rude doctor's office, went to hospital, lady helped with chips, service lady gave service with smile.
But truthfully, it's become extraordinary. It is extraordinary.
In a day where those I trusted to help us, failed, it also provided a stark contrast and reminder of how kind and helpful health care professionals can be...when they do their jobs right, with heart.
It was a hard day, it's been a rough road lately. But at the end of the day, I felt lucky...lucky to have some people who helped, who gave a smile, who were kind. It fixed it.
Tuesday, October 02, 2012
Sometimes I think we are too fast to accept health care exactly as dispensed and too slow to consider ways to make it work better for us (our bodies and our wallets).
Let me share a short anecdote and a few things I learned this week about being smarter with health care, choices we have that we may not know about and how to get doctors and pharmacists on board. In short, let me tell you about being an empowered patient who takes charge of our own health and wellness.
It all started last Wednesday when the pediatrician leaned back from my daughter and said, "Those are some dense, crackly lungs...we're going to try an inhaler, but you better be prepared to head to the hospital for an X-ray." And it just went downhill from there. Then the school nurse called about a problem with my younger daughter and within a couple of days we were at the specialist for her. Next my older daughter had a major reaction to the antibiotic and we had to change classes.
I bought half a dozen medications for my kids in less than four days. If we had gone with the original plan (prescribed treatment and medication) it would have more or less cost the equivalent of my mortgage, and that's not counting the office visits. We would manage to meet our $5000.00 deductible in a week.
You have that much spare change laying around? Me neither.
1. My pediatrician does it right: ask your doctor what she has on hand for you.
A big difference between my pediatrician and our specialist is that our pediatrician always checks for coupons, rebates and samples. I deeply appreciate that she is conscientious of our bottom line. When my daughter was diagnosed with seasonal allergies, our pediatrician gave us samples. We were able, without spending a fortune, to figure out which antihistamine most helped her. Other times she has provided rebate and coupons. If your pediatrician doesn't offer, ask.
2. When getting a prescription, ask questions. Find the right medications for you. Ditto for any treatment.
Why this prescription? How much does it cost? Does my insurance cover it? Is it easily available? Are there alternatives in this same class that are equally efficacious? Is a generic acceptable?
It may seem overwhelming, but your doctor's office or local pharmacy can help and, having done this, I can say it takes less time than you think. The antibiotic the specialist prescribed was (a) hard to find -- I had to call 7 pharmacies to find one that carried it, and (b) explained why that was: it cost over $800 so few doctors prescribed it or patients took it.
That's why I include the next tip.
3. Ask your pharmacist.
Most local pharmacies have a consultation window. Use it. You may encounter a surly, unhelpful, rushed or uncommunicative pharmacist. All pharmacies and pharmacists are not created equally. Change pharmacies if you can to get a pharmacist who will help you and be a partner in your wellness.
You're going to cite insurance, time, convenience and a bunch of other obstacles to this if you're like me. Bah humbug to all of that. Most of us have at least a couple of convenient pharmacies and it is well worth the potentially extra few minutes to get a great pharmacist. I changed pharmacies yesterday for this reason. Why?
- The first six I called just said regretfully they couldn't help me. When service providers imply "not my problem, can't help you" they are not a fit for me.
- The seventh pharmacy also said they did not have my drug in stock but they said it like, "No, and..." so I listened.
- That Walgreens pharmacist said she had a different dose and would call the doctor to see if they would alter the prescription. This was beneficial because it meant a smaller amount for my child to take at once and a solution to my problem, plus the bonus of both prescriptions at one pharmacy (versus my near capitulation to splitting them across town). So be aware you can tweak prescriptions, too. So ask.
When I arrived to pick up my prescription, and nearly fainted from shock, the pharmacist began talking to me about alternatives.
NOTE: Pharmacies are very good in my experience of being open about cost, so I strongly advise calling the pharmacy before walking away with a doctor's prescription to get an idea of both availability and expense.
The pharmacist asked for my daughter's diagnosis and, using that and the prescribed antibiotic, suggested four alternative drugs that were less than $50 for me. We called the doctor's office and were prescribed one of those four.
That leads me to my next tip.
4. Be an empowered patient and keep your own health records.
I had to deal with a lot of diagnoses, information, tests, test results, prescriptions and more. I had to carry information from one health care provider to another.
The more information I provide to one doctor from another, the less redundancy and the more targeted care can be.
I shared the nurse's screening to the specialist and the physician's assistant and back to the nurse. It was invaluable to be able to have all the information I needed at my fingertips. I could answer every question put to me. How? I recently downloaded and started using an app called PocketHealth.
This app lets me input my own and my family's health records. I started using it after I started working on the account--so I will be forthcoming about that. But I have truly come to appreciate it. Especially in the last week.
Once I started using it, it prompted me (umm, not literally, just mentally) to start asking for copies of tests, results, etc. I do need to input that information, but it's worth it to be able to track, manage, review and share the health information.
I tend to overwhelm myself and think I need to start at the very beginning. In this case, I started in the middle. I'd been filling in the same health forms about four times before I wised up and realized I could input and re-use. So, my records start now and I can fill in as need be. I find time while waiting at kid events, for example.
Most of all, I can save money by not having to repeat the tests and save health (or life) by including important information such as my daughter's reaction to the antibiotic so we never get that one again (and don't they all sound alike). I can stop feeling guilty because I don't know the answers for what and when for our health care, quit feeling stressed about filling out forms or racing hither and yon to fetch records because I can't find them.
I was frustrated that my doctor prescribed hard to find and overly expensive drugs. I was frustrated that they didn't know or care what hardship this would create for me. I felt guilty that money played a factor in health care for my children. I felt angry, too. I felt stressed and overwhelmed by the number of health hardships we faced all at once. I felt a little at sea with it all. However with the help of some good health care providers and technology, I found ways to solve problems and overcome that helpless feeling. I found the way to be an empowered patient getting both the care I needed at prices I could afford.