A Fine Mess


January was a busy medical month.

My rheumatology checkup was on January 31st and I had a laundry list of things to accomplish before I showed up in the exam room.  Went to the ophthalmologist for a visual field test (because I’m on hydrochloroquine a.k.a. Plaquenil AND have Sjogren’s disease and need eye drops).  Had a bone density study (due to a long-term use of steroids).  Had a mammogram (because I was WAY overdue for one).  Had blood and urine studies (because my doctor wants labs every 6 weeks).  I also went to see my internal medicine doctor for a routine checkup.  I get to visit the dentist next week too.

I was also supposed to see the nephrologist before the end of January.  That appointment didn’t happen.  My rheumatologist wants me to be evaluated AGAIN for kidney failure.  In my all-knowing medical opinion, I’d rather not think about my kidneys, so that little detail remains on my “Things I’d Rather Not Do Right Now” list.   My kidneys don’t hurt so I’m guessing everything’s fine.

I thought I could do some fancy footwork and rope-a-dope my way out of the kidney doctor appointment.  However, my rheumatologist is a very smart guy.  He went down his little check list and told me to see the nephrologist.  He said it doesn’t matter if I’m not diabetic and my BUN and glucose levels are fine.  My creatinine is way too high and my kidney filtration rate is way to slow.


A reasonable person would just suck it up and go see the kidney doctor.  But I’m not always reasonable … at least when it comes to having lupus.  Usually, I’m very compliant about my medical issues.  But for some reason, I’ve managed to avoid making an appointment with yet another specialist.  I simply don’t want to go.  I know I should and I will.  I just don’t want to. The thought of having yet another lupus-compromised organ in my body makes me pissed off.

On top of everything, my insurance carrier stopped paying my IVIG infusions since last September.  Turns out, there was a mix up about the J codes used in the billing process.  In August 2010, the specific brand of IVIG used by the hospital (and approved by my insurance company) was pulled off the market.  The hospital then used a different brand of IVIG.  The insurance company noticed they were being billed for a drug they did not approve (because it had a different J code) and rejected the subsequent hospital claims as a “non approved” drug.   So far, I’ve managed to rack up about $200,000.00 of unpaid medical expenses.  The hospital wants to hold off any more infusions until this is “straightened out.”

Of course all of this will get resolved.  Eventually.  But I was due to have an infusion last week and now I don’t know when the next one will be scheduled.  I’m supposed to have them every three weeks.  On the bright side, the veins in my left hand are shot and my right hand isn’t looking too great either.  Maybe they need a little break from needles.  My doctor said I may eventually need a port in my chest.  I’m not too keen on that idea, either.  Ports are also on my “Things I’d Rather Not Do Right Now” list.

So I wait, not too patiently, for the phone call from the scheduling office for my IVIG infusions.  In the meantime, I hope my lupus doesn’t flare up.  I’ve given up trying to understand WHY this disease is so random and unpredictable.

Most of the time I can find a pragmatic way to cope, followed by a nice helping of humor to stay balanced.  But today I’m just tired and frustrated with this crappy disease.


4 responses »

  1. I totally get you on this. I have been round and round with insurances and medicare and social security and long term and short term disability etc. Not sure what your total status is but as draining as it can be and trust me I know it can be… I can only suggest that you write/call your insurance company and hospital if you haven’t already. Not sure who the manufacturer of the drug is but you can reach out to them as well. Are you on disability aka SSI or do you receive any help via the state/gov for any of your meds? If you are eligible then go there. There are a ton of places that you can go but I know all too well that when you are not feeling well this all takes way too much energy and sometimes you just don’t feel like making another phone call or writing another letter.
    Hope things get better and you start feeling better.
    My prayers and thoughts are with you.

  2. OMG, I can’t believe the amount of money that “got mixed up.” I fought Mayo Clinic for a year over one stupid number being transposed (by them). I am stressed out knowing what you are going through–well, imagining what you are going through.

    If you need help, please consider The National Patient Advocacy Foundation. They helped me out. And, document everything. Every time I called, I sent letters. Emails and calls can be forgotten or swept to the bottom of the pile, but certified letters are hard to ignore.

    I hope you get the treatment you need A.S.A.P.!

    Good advice Girl! And you’re right … DOCUMENT EVERYTHING!

  3. Can I just say you are now my hero? You have IvIg for Lupus every three weeks AND have a brilliant clever caring rheumatologist??? Wow. Woooowww….
    I am in the UK, currently fighting tooth and nail for IvIg and Rituximab which my consultant keeps cancelling with no notice to me because of shortage of funding.
    Plus I am on the NHS so have never had to deal with the really tough stuff all you American sisters have to go through every time with your insurance. Until now. So I am in awe of all of you, I truly am.
    But fortunately, you inspire me to keep going, knowing the journey has only one goal, to live as well and happily and humorously as we can.

    I am currently organising an issue for an international medical journal called IGI Global http://www.igi-global.com. And I think you’d be a brilliant contributor. The journal is patient centred and so is going to focus on our stories, told by us. The audience is a mix of health professionals and patients or ‘users’ as is the more academic term.

    What do you think? Are you interested? You could simply put together passages from your blog, linking them into an article of any size, short or up to 7,000 words depending on preference. Email me, I’d love to hear from you. My blog is called Lupus in Flight 🙂

    Thanks so much for your kind words! Yes, I’m interested and will be in touch with you soon. Take care.

  4. Howdy LR,

    Sorry I haven’t been around in forever. I’ve been busy, busy, busy. Working on making time for my own blog right now.

    Been a while since your last update here. Hope all is well in your world. Sounds like those Dr’s keep you pretty damn busy. You’re a real trooper to deal with it all the way you do.

    On a lighter note, if you have time, perhaps you could stop by for a quick 10 question survey that only takes a few minutes, is fun/painless, the deadline is 06/04/2011 and will help me with a future post I’m working on; please and thank you. 😉

    Take care.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s