Well, I just had to write and send this email:
Dear Mr. Zenner,My name is Leann. I am 28 years old, live in Atlanta, GA and I was born with cystic fibrosis, a chronic pulmonary condition. Several times per year, I require IV antibiotics to combat lung infections. On average, each course of treatment takes 4 weeks.As I’m sure you are aware, hospitals are germ factories and quite hazardous to anyone with a compromised immune system. To avoid complication, I complete about 95% of my treatments from home. I have a port-a-cath IV which I can access myself, so administering IV treatments are very easy. Once per week, a Coram nurse comes to my home to check my vitals and draw bloodwork. The first time I required the at-home nursing services I was quite nervous, but have experienced nothing but incredibly thorough and attentive care.This is where my positive experiences with Coram Specialty Infusion Services end.I have been a patient my whole life. I’ve lost track of the number of hospitalizations I’ve had, how many IVs have been placed in my arms, how many antibiotics I’ve taken. I always joke that I’m a professional patient, and in some ways it’s quite true. Managing a chronic illness is a full-time job (that I work on top of my actual job).Being so familiar with the world of healthcare has given me a fairly unique perspective. I’m highly attuned to what my body tells me I need or don’t need, and I have learned that I am, without a doubt, the best advocate when it comes to my care. For this reason, I am writing to you. I highly doubt that my experiences with Coram are singular events, and I want to bring them to your attention as a voice for all patients Coram serves – especially the ones who might not be able to advocate for themselves.Nearly every single time a shipment of new medications and/or supplies is coordinated, something is incorrect or incomplete. Sometimes it’s my shipping address, sometimes it’s my phone number, sometimes it’s the quantity of the items required. Sometimes it’s the day or very, very late evening of the delivery. Sometimes it’s the complete lack of delivery. Nearly every single time, something goes wrong.My experience this week is just one of many examples I could provide: As I write, I am in my fourth week of IV antibiotic treatment. I was admitted to the hospital on Wednesday, March 26 and discharged on Tuesday, April 2. Before I left the hospital, the Coram field representative stopped by my room to confirm my contact information so that she could make arrangements for my treatments. I went home that afternoon fully expecting to receive a courier delivery later that evening, as that is what has happened during past hospitalizations and discharges. Around 8:30pm, I realized that I hadn’t heard from the courier service yet, so I called Coram to inquire about the status. It took about half an hour for someone to tell me the orders they received said I wasn’t to start IV treatment until the following day, Wednesday April 3. Because of this error, I missed two full doses of medication. On Mondays, my account representative calls me to set up the next shipment of medications, always to be delivered on Tuesdays. Yesterday was no exception. It was confirmed that the medications would be shipped yesterday with UPS and delivered today, Tuesday, April 22. At 6:30 this evening, I still had not received the package, so I called my Coram branch to find out what happened. I was told that the box left their facilities around 5:30pm, and would arrive sometime before 7pm tomorrow. I infused my last dose of antibiotics this afternoon. I will be missing at least the next two IV treatments because of this error. Coram has a very serious, dare I say critical, issue with logistics. I don’t know how it happens, I don’t know where the communication falls apart. It is beyond my comprehension and a near constant source of frustration. The sad part is that I have come to expect these types of mistakes every time I require Coram’s services. Again, I have a hard time believing that I am the only person who has experienced such a frequent number of logistical mistakes from your organization. As my own advocate, I am always able to resolve any issue, even if the outcome is not exactly what is required or even desired. I am writing you now in an attempt to bring this serious problem to your attention with the hopes that you can take my example and use it to launch an organization-wide effort to make improvements. Doctors don’t prescribe medications willy-nilly. Treatment plans are created with the explicit intention to be as effective as possible. When patients can’t get their medications delivered in a timely manner, their healthcare is compromised. That is never ok. I have the highest hopes that this email sparks a conversation about change. Thank you very much for your time and I appreciate anything you can do to make improvements to the system.
Mr. Zenner is the Vice President of Customer Service at Coram Specialty Infusion Services. Like every experience I’ve had with Coram, I am hopeful that this will result in a positive outcome. Perhaps this will be the one time I’m pleasantly surprised.
In other news, I have my first CF follow-up appointment on Friday. Keep your fingers crossed super tight that my health will have improved enough to stop the IV treatments! (Please and thank you.)
As I’m missing two rounds of IV treatments tonight and tomorrow morning, I’m enforcing my own treatment plan:
adios amigo. you made me a very, very tired girl.
you were dubbed ‘the year of yes’ and i’m pleasantly surprised by how well i was able to stick to it. in the past, my default answer to invitations and such was at best “uh, maybe” but i have fully embraced the power of YES.
some of my favorite parts of you were:
– traveling to mexico to relax and watch my best friend of 26 years get married. it was fun to live like a real housewife of riviera maya for a few days.
– traveling to austria and hungary. even though it was freezing and raining or snowing the whole time. i fell in love with budapest!
– rittenstrong wedding! i only cried a few times during emma’s wedding weekend, danced my tush off, and soaked up as much family time as possible.
– portland. this might have been my biggest yes of the year. a last minute trip to the west coast in which i seriously considered “accidentally” missing my flight home. forever.
– booooks! i finished reading a ton of books that were works in progress, and discovered some new authors that are now my favorites.
– standing 2 feet away from the girl with a pearl earring. in the past few years i’ve been out of touch with the part of me that adores art, and standing in front of this beauty rekindled that fire.
– FINDING JEANS THAT FIT. i never knew denim could bring me so much joy. as a five-foot-tall-chicken-legged girl with cystic fibrosis, finding pants that fit from tush to toe is impossible. (madewell, my savior.)
some of my least favorite (and therefore undeserving of pictures) parts of you were:
– sickness x2. i thought my days of multiple cystic fibrosis exacerbations a year were long behind me, but i was wrong. that i got to do 90% of the iv treatments from home as opposed to in the hospital did not even kind of soften the blow(s).
– the anxiety attacks that never ended and made life miserable.
– godzilla kidneys stones that made me sad for many, many weeks. i particularly disliked the 5-hour car ride to hilton head in the way way back of a car during a bout of stones.
– eating a plateful of white truffle rosemary garlic french fries. they were good for about 10 minutes. and then miserable for about 3 days. live and learn.
2013, you were mostly awesome and fun and for that i am most thankful, albeit a little worn out. (and i learned to say yes to naps!)
2014… i’m gonna rock you. so hard.
[all images are my own except for the denim, which came from madewell]
i have 14 unfinished blog posts in the works.
truth be told, i have had almost zero interest in writing. every time i sit down to put words together i get overwhelmed and anxious so i just close my laptop and walk away.
to say i’ve had a major case of the blahs lately is somewhat of an understatement.
i have 14 unfinished blog posts that would tell you more than you’d ever want to know about my blahs. about how i’ve had massive kidney stones and related pain since july. about how my anxiety attacks have been out of control. about how i had yet another cf exacerbation resulting in over 6 weeks of antibiotic treatment which came with it’s own set of lovely side effects. and so on and so forth yada yada.
but honestly, i’m so dang sick of thinking and talking about it all that i just can’t do it anymore. so i’m not going to.
i woke up one day about a week ago and realized that if i ever wanted to break through the blahs i would need a major attitude adjustment. so, that’s what i’ve been focused on.
something as little as waking up each day and saying “i’m going to have a good day” instead of “oh good, i still feel like shit” makes all the difference in the world.
as for those 14 unfinished blog posts? i’ll get to them… maybe. for now? all kinds of awesome.
[image 1: unknown, image 2: 79ideas]