Medical System Obstacles – Infusion Day Part 2 | MS Blog

multiple sclerosis blog, ms blog, ms treatment, multiple sclerosis treatment, multiple sclerosis infusionEarlier this week I posted about how I managed to turn Infusion Day into a positive experience.  Unfortunately though, Infusion Day is not only in my hands.  I can’t pretend that things are always butterflies and rainbows and that I’m always capable of seeing things that way.  Some things are frustrating and ridiculous and there are no two ways about it.

Despite all attempts at maintaining a positive outlook, the medical system has a way of draining a person of their sunshine.  This is certainly true for me.  When I began Tysabri, I realized that although I only had to deal with treatment once a month instead of every day or every week, medication was no longer in the comfort of my home.  I suddenly had to interact with the hospital system much more than ever before.  I was entirely unprepared for this new process.

I’ve had my infusion at a few different infusion clinics and at every clinic I find myself facing new challenges.  At the infusion clinic I went to while I was in college, scheduling was a challenge since I had to find a time when I could come without missing class. I also learned that if the regular nurse wasn’t on duty, I would always get my infusion wrong.  For example, getting the infusion over 30 minutes instead of two hours which causes all sorts of medical concerns.  At another infusion clinic the issue in addition to scheduling, was the difficulty finding a nurse who could actually get my IV line into a good vein and in a way that was at least somewhat comfortable for me.

At my current infusion clinic, the challenges I’m experiencing are more than ever before.  I am learning just how dysfunctional the medical system can be.  I currently get my infusions at a world renowned hospital in Los Angeles and it is shocking that even such a well established institution does not have a system that is easier for patients to navigate.

Each month I have to coordinate my own labs (blood tests) and have to remind the infusion clinic several times to check their fax machine for the ordered labs from my doctor.  It takes the clinic approximately two weeks each month to verify my insurance before scheduling my infusion and even after that, the pharmacy has to RE-VERIFY my insurance once I actually arrive for my scheduled appointment.  The re-verification process often takes an hour or more which is just maddening.

On top of that, however it is that this particular clinic works, they never seem to have a nurse or a bed available when I arrive which always begs the question – why did I bother to schedule an appointment at all?  Since I started at this clinic, I learned to arrive early, sometimes by a whole hour.  And yet I still only end up with a bed or chair an hour after my scheduled appointment.

I often find myself reminding the nurses of what needs to be done next in order for Tysabri to be ordered from the pharmacy, such as taking my vitals.  And I constantly have to remind them how long it actually takes the pharmacy to verify my insurance, and as a result how long it take to get my infusion started.  What I never seem to understand is why they are not also concerned about timing, especially if I am scheduled for a 3 or 4pm infusion.  I mean, don’t the nurses want to get home before midnight?  Why is it that I’m the only one who cares about getting on with my day?

multiple sclerosis blog, ms blog, ms treatment, multiple sclerosis treatment, multiple sclerosis infusionMy most recent infusion was this past Friday.  I arrived at 10:30am for an 11am appointment.  I sat in the waiting room with one other person for 20 minutes before I was checked in and then waited another 10 minutes in the waiting room before I finally mentioned to the receptionist that I just need my vitals taken to get my Tysabri ordered and I’d be happy to continue to sit in the waiting room afterward.  There weren’t many patients in the Infusion Clinic either.  Long story short, after an hour I finally got a bed…in the hallway.  By the time I had finished everything and was released it was after 3:30pm.  Yep, over five hours for a two hour treatment.  Not to mention the amount of stress I endured in the process is actually detrimental to my health!

Something just doesn’t add up.  Isn’t it hard enough for patients to deal with their illness?  To manage their symptoms?  What is wrong with our medical system that a two hour treatment takes five hours?  How can we ever lead healthy and normal lives if all our “Personal Leave” days at work are used for infusions?  I want “personal time” too!

The amount of frustration I experienced on Friday is honestly indescribable.  And the thing is, I’m a very outspoken and informed patient.  I can’t imagine how other patients manage experiences like this, especially those new to this world.  I guess this was my personal vent session.  But it’s the truth.  It’s very hard to keep my upbeat Infusion Day ritual when so many mishaps occur, with one frustration after the next.  The infusion itself already takes so much out of me that I have to come home and sleep for hours.  Sometimes it feels like I have to fight for everything; I have to fight just to get my medication.  To be honest, something is really wrong with our medical system.  This isn’t a surprise, but it is certainly disappointing.  It is so important for people to treat their illness.  Facing an illness is hard enough; with treatment posing so many obstacles, this medical system could deter someone from ever taking care of themselves successfully.

So in short, there are moments where I get really, really, fed up.  I hope it will get better though and as soon as I find a solution I’ll let you know!

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