Tag Archives: doctors

Kidney Schmidney

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I thought my kidneys were working just fine.  According to my rheumatologist, not so much.   Like many people who have had lupus for a long time, I assumed that if after 18+ years of living with this disease, whatever bad stuff would happen would have already happened.  Assuming is never a really smart idea.  When my lab tests came back abnormal, I had to pee in a jug for 24 hours and send it off for testing.  Ick.

KIDNEY - MORE THAN JUST A BEAN

So now I’m going to a nephrologist later this week to learn more about lupus nephritis, which is possibly the culprit that has decreased my kidney function and thrown my laboratory studies out of whack.

I hate it when that happens.

The thing is, I know absolutely NOTHING about kidney disease.  I’m well versed about skin disorders, gastrointestinal disease, heart conditions, and a bunch of other stuff, but understand zero, zip, nada when it comes to those bean-shaped filters.  That will all change by the end of this week.

One of my brothers will be going with me to see this doctor.  I’m very grateful for his support and medical knowledge, as he is a nurse.  Otherwise, I would probably be sitting through the appointment in a fugue state, hearing the doctor say “Blah, blah, blah kidney.  Blah, blah, blah ultrasound.  Blah, blah, blah biopsy.  Blah, blah, blah come back in 6 weeks.”  That’s pretty much how I’m currently coping with the situation.

Symptoms of kidney dysfunction are pretty nondescript and vague.  Frequently urinating?  Check.  Blood in urine?  Nope.  Froth or bubbles in urine?  Check.  Swollen hands and feet at the end of the day?  Of course.  I’m female in my mid 50’s … it happens.

For now, the most effective way for me to deal with this new wrinkle in my journey with lupus is to watch the Olympics, go to work, tune in to American Idol this week, get my IVIG infusions every three weeks and continue playing Farmville.  In other words, carry on as usual and don’t think about it too much.

I can’t wish this away, so I might as well live my life. Right?

Good thing I’ve met my deductible this year.

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A Small Miracle

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At long last, my insurance carrier approved my IVIG treatments for lupus, retroactive from September last year through June 2010.

I feel like I won the lottery …  or at the very least, was granted a small miracle.  FL-BLV-00-012-09P~Believe-in-Miracles-Posters

The road to these much-needed and long-overdue infusions has been long and crazy!  Last month I was preparing for the formal second level appeal with my insurance carrier … the main reason I barely posted anything.  My illness was flaring and I was a certifiable mental case.

But I held steadfast to the belief that things just had to get better.

Next thing I know, a big whopping envelope from the insurance company was in my mailbox … a 200+ page collection of papers  regarding my treatment history, research documents about cutaneous lupus vasculitis studies, prior appeal letters from my doctors requesting approval for IVIG, etc.  A final (and formal) appeal teleconference hearing was scheduled on June 1st at 11:00 am.  In attendance would be the insurance case manager, a panel of physician Medical Directors that specialized in rheumatology, my own rheumatologist … and me.

The teleconference seemed to be over before it started.  The panel asked for my input and I blithered something senseless about “needing these treatments.”  The panel asked my rheumatologist an array of questions, which I didn’t really understand.  I didn’t understand my doctor’s answers, either.  Something about B cells and hyperclonality and other things I never heard of.  I work in the medical field and this was way over my head … which was pretty scary. My doctor was amazing and spoke with great conviction.  When the panel asked him if he was aware of additional peer reviewed clinical trials with a larger patient population of refractory SSA antibody positive individuals with cutaneous small vessel vasculitis, he politely told them that my circumstance was quite unusual.  Broad based clinical trials would be difficult to conduct because there just are not that many people with the condition I have.  He said that in his 30 years of medical research, he has not seen a case as severe as mine.

If nothing else, I knew he gave this his best shot!

Of course, I was mentally prepared for the appeal to be denied.  And I was prepared to file a complaint to the state board of insurers.  If they upheld the insurance denial, my last option would be to contact the pharmaceutical company that makes IVIG and ask them if they’d let me have it on a “compassionate care” basis.

You can imagine my surprise when the following evening my phone rang at 9:00 pm.  It was the case manager from my insurance carrier calling.  She thought I’d want to know that after the teleconference appeal, the panel assigned to my case approved my request to receive IVIG for 12 months!

Sometimes persistence and a bad-ass attitude gets the job done!

Sometimes persistence and a bad-ass attitude gets the job done!

Most of the credit for this decision goes to Dr. Terry Moore, my rheumatologist … and all-around Bad-Ass Doctor.

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I wish I could tell you I feel wonderful.  Physically, my condition is deteriorating.  I can’t really spend any time outside because it’s too hot and too sunny.  Being stuck in my house is depressing at times.  I  started an art project, and took up knitting, and found a couple good books to read, but nothing takes the place of having the freedom to go outside and take in the sunshine.  With a little luck, I’ll be well enough to travel to Wisconsin next month for a long overdue visit with my son and daughter-in-law.  There may be time for a visit to the sand dune beach  – in the late afternoon, of course.

Last week I had my first infusion.  Every three weeks I get to go to the cancer center, get hooked up with a needle and a bag a medicine, and spend the day in a chair.  Thrilling it ain’t.  But I’m grateful for the only treatment out there that will fight off the lupus attacks that have ravaged my body.

I have lots of hope, however.  And I’m thankful for this little miracle … even if it comes with a $2,000 deductible!

Doctor Doctor Give Me The News

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I recently saw the Big Deal Lupus Doctor in town.  My Regular Rheumatologist referred me as my flare up this summer was particularly stubborn and not responding to the course of treatment I was on.

The current plan involves infusion therapy and  Imuran.  The jury is still out on whether or not I’m clinically improving.  Regardless, I don’t feel well.  I’ve been running a fever for two days.  My hair continues to fall out.  I’m getting hives on my face and a rash (looking a lot like the one I just had) is beginning to appear on my legs.  At this point I’m concerned enough to call Regular Doctor to discuss these changes.  We spoke on the phone and now I’m frustrated and disappointed with how the conversation went.

First, I had to leave a message, which is standard protocol, especially in a large practice with 7 physicians.  I tell the operator I’m having some symptoms and wish to discuss this with my doctor.

Then, I get a call back from the doctor’s Snotty Bridge Troll.  She tells me to call the Big Shot Doctor because I’m under his care now and he needs to know if I’m having problems.  I tell the Troll that Regular Doctor wrote the prescription for Imuran, ordered the infusions and has been following me for two years.  I’d appreciate a call back when it’s convenient.

About 20 minutes later Regular Doctor calls and listens to what I have to say.  She tells me that my symptoms could be anything … lupus, medication, who knows what … and I need to call Big Shot Doctor.  And even though she prescribed the Imuran and IVIG, she’s deferring to BSD now when it comes to treating me.

Huh??

Did I just get dumped?

Lupus has been called the Great Imitator with good reason.  Hives, fever, hair loss, anemia, rash, lethargy … these are warning signs for people who are immunosuppressed and have lupus.  What kind of doctor tells a worried patient to call somebody else?

I work for a very busy doctor.  In fact, I’ve been managing his medical practice for 16 years.  We see a lot of very sick people who sometimes need a little TLC.  When they call us for help we take a few minutes to listen and find the very best way to meet their needs.  If a patient must see another specialist or surgeon, we set up that appointment for them.  We make sure their insurance will cover their laboratory or radiology studies.  Our doctor basically “quarterbacks” their treatment to insure continuity of care.  If it’s in the best interest of our patient to segue from our practice to another, more specialized physician, our doctor discusses this with them with sensitivity and honesty.   Nobody needs to remind us that sick patients often have difficulty hearing bad news, getting their prescriptions filled, arranging for transportation, and understanding their medical bills.  We’re there to help them get through the tough times.

I’m going to ask the Big Shot Doctor to be my primary rheumatologist.  If he can’t, then I’ll find another doctor.  It’s hard enough to deal with lupus when you’re not feeling well.  It’s worse when the doctor and the medical practice you’re working with appears indifferent when you ask for their help.

Shame on them.

10/9/08    Here’s an update to this post:

I called the BSD’s office and left a message.  The BSD’s rheumatology fellow, Dr. O, called me right back and was so very kind and helpful.

Me:        My rheumatologist told me to call you if I’m having problems.  Do you remember me?  (snif, snif)

Dr. O:    Of course I do!  You’re not feeling well?  How can I help?

Me:        (I tell her my tale of woe.) What do you suggest?

Dr. O:    First, I want you to know that we will be more than happy treat you here.  Let’s lower your Imuran dose by 50 mg and see if that helps slow down or stop your hair loss. I’d like to run some blood tests also. I’ll call you back with those results ASAP and we’ll talk about what the next step will be.

Me: Thank you so much! I’m relieved to know there’s a plan on board.

Dr. O: Call me any time you have a question or a concern. Just leave me a voicemail!

Whew! A little compassion can make all the difference!