My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Wednesday, December 3, 2008

Downhill Doctors Visit

A MESSAGE FROM MOM: If you have been following our story, you know that Sarah has had many medical challenges over the years. Her lingering issue basically involves her lungs. For the last year, we have been giving her two treatments a day of Albuterol with a nebulizer, one at bedtime and one in the morning. Since she started her new job at the Cleveland Foodbank a few weeks ago, I have already been called four times in the afternoon because she is having trouble breathing. Once they almost called 911 first, which we try not to do unless absolutely necessary because it creates a chain reaction that keeps us in the hospital for days. I'm thinking we just need to get an Albuterol puffer that she can have with her to boost her through the afternoon.
So I call the doctors office to schedule an appointment. They tell me the first available is January 29th. What!!???!!! Did you not hear me say this is a breathing issue? We could be dead by January 29th. For sure I would be fired, if I have to keep leaving work to go pick her up every other afternoon. I'm speechless. Finally, after about 10 minutes of pleading and whining, they give me a next day appointment at noon. I quickly email my boss for a day of vacation (gotta love email - personal begging on your knees no longer required).
I start the morning placing a phone call to apply for SSI - it is hard to tell from the website whether you can do it online or not - but that's a whole different story for another day. I then spent an hour or so on the American Lung Association website reading up on all the different medications to treat COPD and asthma. I have learned over the years that it is wise to be one step ahead of the docs if possible, at least informed with what they might present.

Sarah was happy, happy, happy. It is rare, very rare that she is in a doctors office basically healthy. No IV lines, no shots, no hysteria over her oxygen saturations.

The nurse comes in and takes her blood pressure 98/60 -excellent. Then the pulse which is 90 - great. Then she takes her down the hall for her weight, 138 - super. That means she has lost 10 pounds - way to go Sarah. We are aiming for 135.

After a few high fives from the nurse and me about the weight loss, she is still smiling. Then the nurse remembers that she needs to take Sarah's pulse ox...84...what!!! Damn. That's not good. Actually that's cause for being ordered over to the Clinic. Off the nurse goes to get the doctor. While she is gone, I am mentally preparing what I need to do if we have to head over to the holding tank - that's what we call the clinical observation wing of the hospital that we usually start out in. John is in Columbus meeting with new clients, so I will need to make arrangements for Matt to be picked up, the dentist appointment this afternoon rescheduled...
Oh here is the doctor..."So Sarah, how are you today? Good, good. Have you had your flu shot yet this year?" Ooohhhh, if looks could kill. Sarah whips her head around and glares at me and immediately gives me the stubborn, defiant stare and then comes the watershead...
I just had to get the camera out...partly to hide the fact that I really had no sympathy at this point because I am relieved that the doctor didn't come blazing in focusing on the low pulse ox.

Oh this is really pitiful.

"Are you kidding me? Mom...You said no shots today."

And now some more crying. The pictures really don't give the full sobbing effect. A few times I hold the tissue so she can blow her nose and hack up some mucus.

Lot's of tears and more sobbing as I help the doctor recall that we don't give Sarah flu shots because she had a very bad reaction to one a few years ago. "Oh right, OK, Sarah. Let's put this little magic light on your finger again." Oh, here we go... 96... what!!???...96... YIPPEE!!!! See, that crying was for a purpose. It broke up that lung crude that pulls her oxygen saturations down.
Now on to the task at hand. I explained my theory about needing an extra puff of Albuterol in the afternoon, to which the doctor readily agreed to. Then we spoke at great length about changing her corticosteroid. We have been using QVAR for several years and I wonder if she hasn't become almost immune to it. So after much discussion we decided to try Advair. It is a combo bronchodilator and a steriod.
Off we go to the pharmacy for our three prescriptions. After a short 10 minute wait our name is called. I already have my check written out for $45 to make the transaction quicker knowing we have a $15 per medication co-pay. The pharm tech scans each label and says, "that will be $294.00" WHAT!!???!! How can that be? She studied the computer screen and then says, " the Advair is not on the approved co-pay list." Well why did the doctor prescribe it? She is supposed to know what drugs Kaiser has on the approved list.
Now who is the one crying? Seriously, I wanted to just stand there and start balling. My Visa Care Card is worthless as we've already used all of our pre-tax medical dollars for the year. So Sarah, I guess you are getting Advair for Christmas. least it is in a pretty purple discus.


Mary said...

Wow! I can so relate to the asthma issues - well not to the extent that Sarah has but I have been there with the whining to the scheduler to get in sooner. That is where my tears usually least the welling up part.

You have a great Dr. if they new enough to make Sarah cry to get the yuck out. I have been filing away all of these tricks for ongoing use.

I hope you can get the insurance issue cleared up for advair. We have had great success with Simbicort. So easy and it is a passive inhaler so Rex can take it instead of having to nebulize it. Wow is that a relief.

We have our 2 year check up tomorrow for Riley and I'm keeping my fingers crossed about not having to go to a daily med for his lungs. Our asthma specialist told us at the last visit that if we had one more wheezing episode before the end of the year we should start one... I've been in denial that Croup counts as a wheezing episode.

Good luck with the new meds. Keep me posted.

JennyH said...

That was a great post! At least she didn't get admitted! yippie!

Wow- that is one chunk of change!

hjoy said...

Asthma issue are horrible, Junior has them soooo often and we have dealt with the dropping sats frequently. We don't go anywhere anymore without an oxygen tank in the car.
Hope the new med does the trick, we tried that one but ended up on Foradil.

RK said...

You're a pro, Mom. So much good info in there for us "newbies." :o)

SunflowerMom said...

What an emotional trip to the dr! Hope the new meds get her thru the day. Sorry about the steep fee!

Maureen said...

That is ridiculous, my insurance sucks and they at least cover advair. (albeit a $30 copay instead of $10, but much better than $250!!!) I have asthma and I can say that the advair is a mircacle worker. I no longer need my emergency inhaler, so I really hope you work this out with your insurance. When can Sarah get on SSI?

Karly said...

So glad Sarah got to escape those shots. No fun, for sure.

Can I ask what you guys do for weight loss? I am sure it is hard, since I am guessing Sarah can't do anything too extreme with exercising due to her lung issues.

You are such a great mom!

Melissa @ Banana Migraine said...

What a rollercoaster visit! I'm glad it all ended well!

Megan said...

What a crock about the Advair. Honestly! Is it against the law if I offer to send you some? ;-)

Cheri said...

Great storytelling! :) Sarah sorry for the tears but so glad it broke up all the gunk and you didn't have to go over to the clinic! As I read about Sarah's numbers I looked up at Reid's ox numbers on the monitor and he is resting around 89-90, not fabulous...but we're working on it.

As for the insurance...grrrrr!!

Cammie Heflin said...

Poor Sarah! I hope she improves soon! BTW I have no clue where Stevie is from the trucker story on my blog, I wish I did!

Lianna said...

I am relieved that Sarah is doing okay -- but I am so sorry about the cost of the inhaler. That is absolutely awful!

Melissa said...

Holly Cow! These insurance companies are TERRIBLE! Good luck with the RX;) Feel better soon!!

Michelle said...

What a rough day - at least Sarah didn't get admitted!

And Sarah, I am a mean mom - I make ALL 3 of my kids get their flu shots!

I hope the new medication helps.

Becca said...

Oh, wow. Your photos are heartbreaking! I'm glad she doesn't get mad when you pull out the camera in a particularly emotional moment--I hope Sammi stays as tolerant... Samantha and I are sending big hugs to Sarah!

McKenna said...

Oh! I'm so glad she didn't have to get a shot after that! And I'm even more glad her sats jumped up from the crying! Sarah, I just love your blog! My husband and I just read about you meeting the clown. I'm glad your fear of clowns is lessened!