Archive for category Doctors
World gonna be so cruel to you, world gonna be so mean. I’ll catch you when you’re fallin’ through. I’m gonna throw on you, like a trampoline.
That song made me feel better today, so I wanted to share it.
I got back from an awesome, but non-budgeted vacation only to be greeted by an unexpected $600 medical bill. Yippee!
After rounds of phone calls with nurses, insurance agents and billing people, I found out that the reason for the bill is because my in-network specialists billed insurance as “outpatient hospital visit” rather than “in office visit.”
The problem is that my in-network specialist rate of a $50 copay apparently only applies under certain codes. And this particular hospital didn’t know the magic words. That leaves it as being charged against my deductible, a way higher amount. My insurance claimed they can’t do anything about (United Healthcare BTW).
So, I went back to billing at the hospital, who told me that it was state law that they bill it that way. I called bullshit – the other rheumatologist that I see also has an office in a hospital, and I’ve never been charged more than my copay (they’re in the same state, in case you’re wondering). Billing claimed there was nothing they could do except offer me a payment plan.
So that leaves me hounding the nurses to resubmit the bills. I feel bad about this. Nurses already have a million things on their plate, but should I really be penalized $600 because they chose to use one code over another, equally applicable code? I haven’t heard back from them yet.
The whole mess is frustrating. I went to this doctor because they were in-network. I triple checked the UHC website to make sure of it, so that I wouldn’t be charged out-of-network rates.
A system that requires you to jump through hoops, call and clarify every little visit, procedure and test before it’s done, speak to insurance about which codes to use, and then hound nurses to make sure they’re filing bills under the codes that work for your particular insurance policy is broken. And bureaucratic BS.
Now don’t get me wrong, I’m not ungrateful. My insurance allows me to be on medication for less than $500 per year, when it would otherwise be costing me about $32,000 per year (Enbrel and methotrexate), and therefore is something I couldn’t live without. But that doesn’t mean the system’s not rife with inexplicable inconsistencies, nonsensical loopholes and traps, and a whole lot of incomprehensible coding and rules.
I don’t have answers for you, I only know Obamacare won’t solve it. Do you have advice or insurance horror stories? I’d love to hear them!
For those of you that follow my blog, I am very interested in advice…
As you know, I went to get a second opinion on my rheumatoid arthritis treatment because a family friend’s death illuminated the connection of methotrexate to interstitial lung disease.
Well, I went to a pretty renowned hospital and saw a very nice female (wow, rare!) rheumatologist who is not much older than I am. She was easy to talk to, smart, and, since she works in a research hospital, very up-to-date on the latest RAD research.
And get this, she wants me to try to go off methotrexate and see how I do with just Enbrel. Her reasoning was that a) I have valid concerns about MTX side effects, b) my last two liver tests came back high, and c) why not try it?
Granted, she hasn’t been my doc, so hasn’t seen me before my drug therapy or on bad days (it was a good day when I saw her). But she thought my treatment may be a bit unnecessarily aggressive.
If going off MTX didn’t go well, she talked about putting me on Azathioprine, which I know nothing about, but pulmonologists (lung docs) like better than MTX. Has anyone been on Azathioprine or have thoughts about it?
*It should be said that methotrexate causing interstitial lung disease is quite rare, and in many cases treatable. I am just a little sensitive about this because I had severe interstitial lung disease as a child. My lung doc says that I’m not necessarily at more risk than the average RA patient for developing ILD, but I’d like to play it safe.
But, of course, I’d also like my treatment to work.
I’m scared to death of getting off MTX when my current drug therapy seems to be working pretty well.
I also don’t want to be on MTX for the rest of my life…
My current doc brought me down to seven pills per week from 10 because of my liver, but I know he’d rather see me stay on the MTX.
I feel as though I have to decide on both which doc to go with (you can’t have two rheumatologists, apparently; they’ll just disagree on everything) and which treatment plan. And I feel like I have to decide by Sunday, which is methotrexate day for me.
Finally, how do you even break up with a doc who’s been kind, effective, and accessible? And should I? The new hospital offers more cutting edge care and is bigger, so my rheumy would be consulting with other rheumatologists and pulmonologists. I can also participate in research there. BUT, it’s further from my house and my new doc may be a little less accessible than my current one.
If anyone has advice on how to choose doctors, break up with doctors, or switch treatment plans, I would really love to hear it.
Angsty RAD blogwriter 😉
A lot has happened since my last real post, so bear with this, cause it’s gonna be all over the map…
The Good – Marathon Training
Last weekend I ran my 20 miles!!! This was my peak goal for training before my marathon. I’m going to do one more long run (16-18 miles…hopefully 18) and one more longish run (12-14 miles) and then that’s it… Marathon time!
The run itself went pretty well. My training buddy came up and we ran all quadrants of my town – a serious whirlwind tour including bike paths, trails, roads, and pit stops at a grocery store and a rec center (did not do good things for our time).
Mile one was hard, but it usually is. My new-found asthma was flaring a bit, despite the inhaler I’d taken before. The asthma went away pretty quickly though. Then I got into a groove and miles 3-12 were breezy. Mile 13, not so hot. Miles 14-16, feelin’ grand. Miles 16-18, the wind started blowing and I was struggling a little. Miles 18-20…REALLY AWFUL (I didn’t want to tell you that, but it’s true). Suddenly, my body started hating me – knees, outer hips, numb toes, and, man-oh-man, the bottom of my feet ACHED.
Not a great note to end on, but at least I did. The marathon’s gonna be tough, but I’m confident I’ll cross the finish line.
On another note…
I had my three month check-up with my rheumatologist.
The Good – No New Damage
My new set of X-rays show no new damage! Hooray! Gotta hand it to all those scary drugs I’m on for keeping more bone erosion and permanent damage at bay!
The Not-So-Good (I know, I said bad in the title, but I don’t want to be that negative)
My general pain and inflammation level is not approving much lately. In fact, I think it’s worse than three months ago. Remember my left wrist? Well the thing doesn’t exactly look or behave normally still… About a month after the cortisone shots, the skin where the rheumatoid nodules had been became rough and colorful (red usually, but sometimes white or purple). One time, my mom even asked me, very concerned, whether I’d burnt myself.
Aside from seemingly scarring my skin, the shots worked pretty well for awhile. Over the last month, my wrist bone seems more and more swollen. Now it’s gotten to the point where I think it’s pressing on my nerve, sending a shooting nerve pain up the left side of my hand at really fun, inopportune moments.
Given the way my skin reacted to the shots, my doc doesn’t want to treat the swelling with another shot. In the end he recommended more methotrexate. That’s right – the drug that’s freaking me out right now because of its connection to interstitial lung disease? More of that.
He did talk to me about MTX and ILD. He assured me that he reviewed my chest X-rays and doesn’t believe that just because I had ILD in the past, I am more likely to get it again. He also said the chances of getting it are very low. It’s reassuring to me that he is aware of the risks and made the call anyway.
He also said he didn’t want to put me on methotrexate-alternative luflumonide because it causes birth defects (as does methotrexate), but takes even longer to leave your system than MTX. Given that I don’t want to give up on having kids someday yet, that reasoning sounded all right to me.
Either way, I’m still trying to get that second opinion. No appointment yet, but I sent the referral in and now I’m waiting to be approved.
The Bad (Sorry, it’s not all sunshine and rainbows…)
My doc says 10-15% of his patients are on a biologic alone and not taking it along with methotrexate. This number is really disappointingly low to me. As is the number of patients in remission who aren’t on drugs (to be honest, I didn’t even ask). I know I should be grateful that there are drugs that help as much as they do. I just don’t want to be on them for the rest of my life. This may sound negative, but I want you to know that I feel pretty good about the research being done on RA and the chances of better treatments and a cure in the (hopefully my) future.
Also disappointing is that rather than decelerating my meds because of my outstanding remission (I wished), I’m upping my methotrexate once again. I’m now up to 10 happy little yellow pills per week. This has made me majorly bummed, which brings me too…
The Ugly – The Weepies are not just a fantastically sad indie band
For whatever reason, my disappointment at being where I’m at a year post-diagnosis is manifesting itself in a major case of the weepies. Luckily, it’s mainly been reserved for my boyfriend, two close friends, acupuncturist, and therapist, but that’s too many people for this girl. The only thing left is to admit it to the blogosphere and hope that by sharing, I can cultivate some of that Kris Carr wisdom and move on with my life.
I know that things aren’t all bad. I’ve made major progress since being diagnosed. I rarely feel stiff in the morning (I think my pain scale may differ from non-RA’ers, but there was a time when mornings meant that non of my toes would bend for an hour…making walking comically difficult.), my energy and GI issues are generally much better, my feet are not nearly as swollen or painful. I’ve become a bit more of a bad-ass because now I can inject myself and know that I’m a hell of a lot more resilient than I knew before. I also am halfway to med school given all the research I’ve done… 😉
But there are these moments, like today when I struggled to zip my right boot up because my hand wasn’t cooperating, when I have trouble seeing the good. There’s like this echo chamber in my mind of negative thoughts that can drown out all logic if I let it.
I for one am not going to be celebrating the one-year anniversary of my diagnosis drowning in negative thoughts and grieving something as dumb as a zipper. I’ll be in Barcelona running a marathon and celebrating how far I’ve come. Thanks to all of you for cheering me on. Wish me luck. 🙂
I’ve been a bit concerned about the relationship between Interstitial Lung Disease and Methotrexate over the last couple weeks (yet trying not to worry, because worrying leads to flares which leads to more of a chance of RA complications…ha! FML!).
I will still talk to my primary rheumatologist about this on Tuesday, but in the meantime, I’ve decided to seek a second opinion. This wasn’t as easy a choice as it may sound. It felt like I was choosing to cheat on my rheumatologist and giving up on my treatment plan. As I told my friend, my relationship with my rheumatologist is something I want to be sensitive too – he might be in my life for many years to come!
I started by going to my allergist, who also happens to be a respected immunology expert. Up until 2008, I was seeing him once a year for checkups on my recovery from Interstitial Lung Disease. In many ways, he knows my medical history better than I do.
He told me that there is indeed a link between Methotrexate and ILD, and recommended I get a second opinion at a research hospital that specializes in lung disease. They also happen to have rheumatologists who specialize in both ILD and autoimmune diseases. Cool.
Turns out these docs are also in more demand than my current rheumy. I need a referral to even have a chance of seeing one. This left me with the choice of getting that referral from my rheumatologist or from my primary doctor (who I haven’t seen in years because I have another OB/GYN). I chose my primary doc so as not to shake the boat on my relationship with my rheumy. This choice, of course, requires yet another doctor’s appointment (yippee! – where is that sarcasm font when you need it?).
A couple other things of interest came up at my appointment as well.
My doctor said that, given my medical history, he doesn’t think it is likely that I have gluten or dairy allergies or sensitivities. He recommended just eating healthfully and focusing on eating for my marathon training.
I don’t think this means that I will run out and eat gluten again (I’ve already eased up a bit on the dairy), but maybe I’ll think about being more flexible. I also still believe that eating to lower inflammation in my body is a very positive thing I can do to help control my symptoms. My doc is very science-based (as he should be), so until a trustworthy study comes out showing how diet can ease/cure/whatever RA, I think he will be giving this advice.
I ate lunch with my family yesterday and mentioned this, as well as the idea that perhaps GMOs, pesticides and all the other industrial crap that’s made its way into our food supply was more responsible for the rise in gluten intolerance and autoimmune diseases than gluten itself. My brother-in-law and sister’s reaction made me feel like a social pariah. I plan on doing more research on this and posting it here, but I’m certainly not the first person to state this theory, so I don’t believe it’s totally off target… Does anyone have thoughts on this? Or good articles I can forward to my sister??
My doctor provided me with a list of websites that he likes to use for research because they are entirely science-based:
- FARE: Food Allergy Research and Education (www.foodallergy.org)
- American Academy of Allergy, Asthma and Immunology (www.aaaai.org)
- National Jewish Health (www.njhealth.org)
- National Library of Medicine (www.ncbi.nlm.gov/pubmed)
- FDA Medications Research (www.dailymed.nlm.nih.gov)
- Consortium for Food Allergy Research (www.cofargroup.org)
- The National Center for Complimentary and Alternative Medicine (http://nccam.nih.gov)
- The Food Allergy Initiative (http://foodallergyinitiative.org)
- Google Scholar (www.scholar.google.com)
- WebMD (www.webMD.com)
I hope this list helps everyone as you do your own research and become your own advocate for your health.
I’ve got something heavy weighing on my mind that I will talk to my doctor about when I go to see him this month, but that I’ll share here now. First, some background.
When I was a small, small child, I had severe Interstitial Lung Disease. ILD is a catch-all term for a systemic scarring of the lungs that leads to a decreased ability to take in oxygen. (I was the toddler with the puffed up cheeks from the combo of prednisone and oxygen, carting an oxygen tank behind me that was my height.)
They tried to find a reason for my ILD, testing me for everything, including AIDS, and even doing an exploratory lung biopsy. But they never did figure out what caused my ILD.
As inexplicably as ILD arrived in my life, a couple of years later, it left. I progressively regained most (at least 70%, and at times over 80%) of my lung function. I went in for annual checkups every year from as far back as I remember until about age 24, when they finally declared ILD a non-issue in my life. This is highly unusual. Many of the kids who were at National Jewish Hospital with me are no longer here, and my parents were told to prepare for my death when I was being treated and seemingly not getting results.
ILD has always hung over my life like this mysterious legend. Much of it happened before I was old enough to remember, but the annual check-ups, and the way it affected my parents and sister were impossible to avoid or forget.
So I was a little surprised to get back from Sundance to the news that my mom’s friend had died from ILD and that her husband believes it was caused from the chemotherapy she received years ago for breast cancer. Were ILD and chemo connected at all? I asked Google and found out that not only is ILD connected with chemo, it’s connected to low-dose chemo. As in the low-dose chemotherapy in the form of methotrexate that many of us RA patients use as a treatment.
The stats are pretty scary. In RA-land, it seems that ILD is so common it has its own name: Rheumatoid Lung or Methotrexate-Associated Lung Disease. About 40% of RA patients will have extra-articular disease involvement, as in RA will effect their lungs, cardiovascular system, blood, etc. About 18% of RA patients have lung involvement and, according to one article, ILD. For those living with ILD and RA, the survival mean is a low 3.2 years. (all these fun facts are from this article: https://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-16-rheumatoid-lung-disease/)
The article went on to say: There have been questions posed as to whether methotrexate can predispose to lung disease or whether patients with pre-existing lung disease who are put on methotrexate will develop lung disease thereafter. There’s no evidence for either of those. The fatality rate of patients with proven methotrexate-associated lung disease is around 17%, and re-challenging those patients is not usually recommended. It’s thought that re-challenging patients with methotrexate may somehow cause a stronger secondary response.
This is reassuring…is there a correlation or not?? There’s no evidence that methotrexate causes ILD (whether pre-disposed or not), yet there are patients with “proven methotrexate-associated lung disease”. Huh.
Here’s what another article had to say about it: ‘Methotrexate lung’ can occur when methotrexate is used to treat rheumatoid arthritis or cancer…Most chemotherapeutic agents can cause ‘chemotherapy lung’, acute ILD with the pathological features of DAD. Incidence is estimated at 10%, although it is difficult to obtain accurate estimates due to the complexities of diagnosis and the small patient numbers involved.
Here’s another study about the correlation between methotrexate and lung disease: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005365/?page=1
Well, great. I feel like my rheumy could have at least mentioned this! Should I be worried since I have a history of ILD? Was it such a non-concern, my rheumy didn’t even bother to bring it up? Should I try to find something else instead of MTX, even though I seem to be getting results?
Does anyone have any experience with this or knowledge about the correlation between methotrexate and lung disease? All thoughts would be much appreciated!
I went for my second acupuncture appointment a couple of nights ago.
I would love to say that it was an enjoyable, healing, relaxing experience. But, in truth, my heart was racing and blood pressure was high before the needles even came out. I’m not sure why – it wasn’t so bad last time.
So my heart was racing, and I was sweating, and my acupuncturist and an observing student (who I had recently met at a party and who now knows way too much about me – awkward!) were sticking me with needles, and I was talking myself down from a panic attack.
Weirdly, the needles hurt more this time than the first time. I felt each one going in, and some of them felt uncomfortable as they were in my skin.
After the acupuncture, they gave me earnest tips on how to improve my circulation – ginger foot soaks, chi generating hand exercises…
They were well-meaning and those things might actually work, but in that moment I was so overwhelmed. How many things can I try? What other ridiculous suggestions is the world going to throw at me?
So leaving the acupuncturist, I just felt depleted. Every part of me felt heavy and I felt overwhelmed with emotion.No matter how much you do, how many new things you try, how much sleep you get, how kind you are to your joints, how much effort you put into positivity, there’s always one more – one hundred more – things you should be trying.
It was enough to make me want to curl up in a ball under my covers and cry.
The following morning I saw my rheumy. The report was more of the same – I’m improving, I’ll improve more. Things will get better.
I’m due to get X-rays in February and am very curious to see how those will go.
He did say that he’s doesn’t think going down on meds before my marathon (March 17th) is a good idea, which is disappointing, but I understand the reasoning. I don’t want to not be able to do the race, and I don’t want the race to do more damage than good.
I told him about the problems I’ve been having with the Enbrel pen (button not depressing correctly, bruises and welts, etc.) and my wonderful, amazing, patient, kind, God-send of a nurse gifted me four Enbrel syringes to try out. I am about to do my first one (post for tomorrow!) and am so nervous, I’m procrastinating by writing this.
The beauty of the syringe is that you have complete control of when the medication enters you and how fast. The downfall is that you have complete control and you get to see the whole thing. AHHHHHH!!!!!
I’ll let you know how my injection goes…
I know I’ve come a long ways from the girl who almost fainted every time she had blood drawn.
How do I know this? Because yesterday I went in for a blood draw and got a new girl. I warned her that my veins have a tendency to “roll away” from the needle, making them easy to poke, but hard to draw blood from.
So she pokes my vein, and then a few seconds later – in a baby voice – I hear, “Come here you little vein.”
Eww. For so many reasons, eww.
At this point in a blood draw I usually get faint, but I was feeling fine.
Then I hear, “Oh, we have a squirter!”
Seriously? A “squirter” apparently means blood had shot up my arm. Even looking at that, I was feeling fine.
The other arm did the same roll away, so she went to find a more experienced technician. Through all these pokes I felt completely fine.
So, my veins aren’t cooperating anymore than they used to, but I’m doing a lot better, and there’s something to be said for that kind of progress.