it’s not the hospitalizations. it’s not the dozens of medications or the airway clearance treatments. it’s not the doctor appointments or the lung function tests or the infections. it’s not the fact that because of cystic fibrosis i also have to deal with other things like kidney stones, osteoporosis, diabetes and anxiety attacks.
no, the hardest part for me is why it’s taken me this long to write this. the hardest part is asking for help.
“i need help.” three little words that are much easier to utter than it is to deal with all of the things i listed above, but there you have it, i hate asking for help.
i think (ok i know) it’s a control thing. there are so many things about cystic fibrosis that i can’t control. i can and do spend hours every single day taking care of myself and things are still going to happen. lung infections will continue. all the other crap will continue.
taking care of myself, by myself, makes me feel like i’m in control. it’s as close as i can get to feeling like i’m winning the battle. a battle that, technically speaking, can’t be won. yet. because there’s no cure.i need help.
my sister, emma, is spearheading an enormous fundraising campaign to support cystic fibrosis research.
there are tons of new treatments in the cystic fibrosis research pipeline. treatments that i hope to be able to take some day in the future. but i have to get there first. that’s why i need your help.
as i write leann’s legion of cf supporters have raised a little over $18,000!
you’ll probably see that $18,000 and think that’s awesome (because it is) and assume that’s good enough.
guess what happens when we hit the $20,000.
did you guess a $20,000 match from an anonymous donor? BOOM!
if we hit that $20,000 mark, our efforts will be doubled. that’s at least $40,000 towards the very research that’s going to keep me kicking and screaming and breathing and feeling uncomfortable about asking you for money for many, many years to come.
if that doesn’t compel you to make a donation, consider this:
there are over 1,800 different genotype mutations in the cystic fibrosis gene. you know how no two snowflakes are alike? sort of the same with cystic fibrosis. each person may carry a different combination or set of genetic mutations. each combination could potentially require a different treatment plan. that is to say, if a new miracle drug comes out and it’s not targeted at my specific genetic mutations, i can’t take it. it won’t do me any good.
i have to wait until the research finds the magic treatments for my specific mutations – W1282X and Delta508. the cystic fibrosis foundation will not stop the research until 100% of cf patients can be treated and ultimately cured.
the only way cystic fibrosis is going to go away is if the research keeps moving forward. the only way to keep the research moving forward is to fund it. simple as that.
i need your help. click HERE to make your donation. you are going to save my life.
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:
there’s a little nook somewhere in the caverns of my right lung that always seems to be where the crud wants to live. any time i have a cystic fibrosis exacerbation that spot always sounds crackly and gross through a stethoscope, and is very apparent on x-rays and ct scans.
last wednesday i woke up and coughed and lo, that spot hurt. and then i was all like “well shit.”
and i don’t know what happened, but rather than my usual wait-it-out-to-see-if-it-develops-into-anything approach (aka waiting until i’ve gotten past the point of no return) i did a responsible cf adult thing and reached out to my doctor to see if i could schedule an appointment so he could take a listen to my lungs.
want to know what being responsible and proactive got me?
the doctor told me i could come for an appointment that afternoon, sure. “and bring a suitcase,” he said. and then i was all like, “well shit,” and then i ate a lot of pancakes and bacon. pancake therapy is the best therapy.*
here are a few bad things about being the hospital:
– the accommodations
– the doctors
sleeping in a hospital bed with hospital sheets and showering in a hospital shower gives me the heebie jeebies. other sick people have slept in that bed and they have showered in that shower. yes. i know. the linens are clean. i don’t care. it’s weird and i don’t like it. i bring my own pillow and sleep on top of the blankets. i bring my own towel and maybe i shower with my eyes closed BECAUSE IT’S WEIRD. also, hospital beds? worse than dorm beds. for real. i always have horrible sciatica flare-ups when i’m in the hospital, the kind with pain radiating from my tush all the way down to my kneecaps.
the doctors… oh, the doctors.
when you have cf and you’re at the hospital you are actually seen by no fewer than 500 doctors.
there are general hospitalists. they’re the docs who stay on the floor. there’s an intern and a resident and an attending. sometimes the hospitalists are great and sometimes a toddler could do their job more effectively. without fail, every morning at about 6:30 am, one of them comes into my room, wakes me up, and then asks, “HOW ARE YOU FEELING TODAY LEANN?!” and i just stare at them blankly because 1. they just woke me up and 2. THEY JUST WOKE ME UP and therefore the only feeling i have is anger.
there are the pulmonogists. not my regular cf pulmonologist. just the pulmonologists who are on call at the hospital on any given day. i don’t like them purely because they’re not my own doctor. and also because sometimes i really question how much they know about how hospitalizations with cf patients work.
there are the infectious disease doctors. these guys are totally badass. they’re always super knowledgable and they draw/take pictures of your germs for you. they’re the ones who study the cultures and make sure the medications are working. they’re also the ones who decide when you get to leave the hospital.
and then, finally, there’s my cf team. someone from the office stops by each day just to check on things.
that’s 4 groups of people.
the best part about being seen by four different groups of people is nothing. there is almost nothing good about this because nobody talks to each other. seriously. each team of doctors has a slightly different interpretation of why i’m in the hospital, what my lungs sound like, what tests i need, and so on.
it happens every time i’m in the hospital and yet it always blows my mind harder than the time before.
one full week in the hospital and then they finally let me go home. and then someone, somewhere made a stupid mistake and goofed on my at-home treatment orders. which, while stupid, was sort of nice because i got a full night’s sleep in my own bed. with my own sheets.
i’m stuck with at-home iv antibiotic (and probably pancake) therapy for a few weeks but i’m at home so it’s not so bad. plus, i feel better so i win!
in other news: i went to visit friends in washington dc and it was awesome. i re-connected with a college friend and it was awesome. i attended an annual family brunch and it was awesome. i’m traveling to chicago to visit more family and i’m certain it will be awesome.
i’ve watched so much hgtv over the last few weeks. all i want to do is buy a foreclosed house for $5 and remodel it head to toe. if you have a wall that needs sledgehammering or a backsplash that needs re-tiling or ikea furniture that needs assembly please please please HOOK. ME. UP.
i mean COME ON.