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:
hey want to know what’s fun?
running a series of updates on your website.
want to know what’s even more fun than that?
NOT BACKING EVERYTHING UP BEFOREHAND.
so much fun all up in here.
90% of my blog archives have been recovered. basically everything pre-2011. eventually i’ll get those posts formatted and looking all matchy-matchy with this new blog. which i have every intention of backing up on a very, very regular basis. fool me once, system updates.
on to things way more interesting than my lost blog posts, which would be my new blog posts.
per usual, i will be writing about my favorite writing subject – that damn disease, cystic fibrosis.
per not usual, i will also be posting about things i actually enjoy more than cystic fibrosis.
things i’m thinking, feeling, loving, hating, and so on and so forth. i find myself composing blog posts in my head all the time. in the shower, while i drive to work, during my yoga classes… and they just live in my head, or they disappear into thin air, and maybe when i sit down to write they’ll turn into total crap, but i’m going to give it a go. starting next post.
because right now, i’m watching a new tv show called monday mornings. you know i can’t resist a good medical drama.
(p.s. if you happen to be slightly creepy and have copies of any of my (very few) most recent blog posts, i will be forever indebted to you. and i will send you a gift. a real one.)
photo credit: confetti system. i want one in every color of the rainbow.
hi all. as you may or may not have noticed, shit sort of hit the fan here at leannology. oops?
sorry for the mess, but i am working as quickly as i can to rebuild the site and get things back to normal very, very soon.
in the meantime, here’s a list of things i’m currently loving on the internet. maybe they’ll fill the leannology void in your life until i get things back to awesome: