If you give them an inch…

Tags

Biacare, CDT, compression, Dercum's Disease, healthcare, Jobst, lipedema, lymphedema, MLD, RAD, rare disease, Wright and Fillippis

Last Tuesday Lee and I drove to Wright and Filippis again to meet with Nora, and this time with the representative from Jobst for another fitting.

And once again I had to spend 5 minutes arguing with a non-medical professional about the prescription my doctor has written.

It’s getting a little tiring.

The rep from Jobst was quite agitated, and said this is so backward, did your doctor tell you that? This is not the way it’s done.

I said after nearly 3 years of trying to get compression, this is the way my doctor has decided it needs to be done. That’s why she wrote the prescription that way.

She said again “but it’s completely backwards, you’re supposed to get MLD first and get compression when you are at maintenance”.

I said that’s not actually correct. We are getting Biacare’s adjustable compression for just that reason. We’re getting your shorts because nobody makes an adjustable short. I wish they would, but they don’t. So we are going to have to work with what we have to work with.

She said well you’re just going to shrink and it won’t fit anymore.

I said that’s the plan. But nobody makes an adjustible short.

She said well nither Jobst nor Wright and Filippis are going to adjust the garment when it doesn’t fit anymore.

I said correct. The insurance company will have to pay for a new one. On the upside, them having to pay for a new one means the treatment is working. Bonus!

She said but doesn’t you’re doctor know…

I cut her off and said look, we have been through this for nearly three years. We’ve been to three different practitioners for MLD. Every single time, they want to treat me three times a week for weeks on end, and hem and haw over ordering the compression even though the standard of care is MLD plus compression. When we insist (because you know, the prescription for MLD also includes the prescription for compression) they talk about ordering for one limb to see how it goes. We know how it goes. I shrink. Fast. And I have a systemic disease. Treating one limb doesn’t move fluid out, it moves fluid around. As I’ve told you several times, my doctor has been helping me on this journey for several years, and we have come to the conclusion the only way to get my systemic disease treated in a systemic manner is for her to order my compression and then start MLD.

I didn’t mention (again) that the standard of care is MLD plus compression, and that MLD without compression is useless.

She just stared at me and said well why won’t the therapists order compression?

I said I’m not sure, but given how many providers I found who either aren’t selling custom compression anymore due to the ridiculously low reimbursement rates or who want me to sign a waver to pay the out of network price even though they are in network, I can only imagine it’s because they lose money on ordering custom compression and they want to make money on providing the MLD first to recoup the money they lose on the compression.

She just stared at me.

Finally she says okay, let’s go ahead and measure you.

It didn’t take a whole lot of time to measure, other than some back and forth about what product line to use.

When we were done Nora informed us that we got the approval for the custom garments, and that the rep from Biacare would have to come measure me again, because custom measurements are more involved. So we have another appointment on Wednesday to be measured for legs, chest and arms. Again.

That makes 4 trips now to Wright and Filippis. More than 70 miles. Each way.

God knows how many more for fitting appointments before I have my garments.

It will all be worth it if I actually get my garments.

Let’s hope.

Until then, be well, my spoonies.

A Mixed Bag

Tags

lymphedema lipedema MLD compression Biacare UHC Cigna

I got some good news today. In the mail was a notice from United Healthcare stating that the custom compression is medically necessary and they will cover it. That’s kind of a no-brainer for anyone informed about this condition, not fitting into off the shelf garments due to limb size disparity is kind of the definition of medical necessity.

The not so good news is the reason this notice came in the first place.

That story is a bit more involved. 

As I noted in my last post, we have been down this road of trying to get my compression before. What we figured out while arguing with Cigna and their in-network providers is the providers can’t charge for measuring or fitting, and they get reimbursed roughly half for the more expensive forms of compression necessary for someone with more advanced lipedema or in the treatment phase. So actually getting an in-network provider to provide it has been a problem of epic proportions. 

Shortly after our policy with UHC kicked in on March 1st, I started searching for a new in-network provider to obtain said compression.

It took some calling around. There wasn’t anyone in my local area, but Wright and Filippis in Grand Rapids, about an hour and twenty minutes south is in-network and provides the garments we were planning to order. I made an appointment, and my husband and I drove down with our prescription in hand. 

We met with Nora. She asked what we were there for, and I explained my history and what we were looking for. I then handed her my doctor’s prescription, which contained very detailed descriptions of the required full body compression.

After reading the prescription Nora said, oh, so we won’t be doing the compression that is like nylons then. I said no. She said well insurance only covers those. I said actually they cover all the products listed in my prescription, I know several people who have them. She said oh.

The prescription specifies Biacare for the limbs, so she tried showing me non-adjustable compression. I said no, the prescription specifies adjustable compression because I respond so rapidly to compression. She said oh.

She said “it’s nice to have such a wonderfully informed patient”. I said something to the effect of this isn’t my first rodeo.

She said she had only worked with the typical arm and leg stockings, and had not fit patients with other garments, and said she would make an appointment for me to come back when the reps from the two companies we would be using could come back and fit me. I said of course. So we agreed she would call to schedule a time.

When we came back again it was only to see the Biacare rep, not the Jobst rep. Early on in the appointment the Biacare rep says “I thought I was here to teach, not for a fitting, had I known it was a fitting I would have brought other things with me”. Nora looks like a deer in the headlights, says nothing, and then says “there must have been a miscommunication”.

The Biacare rep does a great job fitting me, took minutes, not the 2+ hours of my last fitting, and was way more accurate. Once she was done Nora talked to us about what she found out from Jobst and we agreed we would set another appointment. 

Meanwhile, before that second fitting appointment, Nora calls me and asks if I have time to talk. She says that my upper right arm is so much larger than my lower arm, that I can’t fit in Biacare’s standard garment. She said the rep from Biacare suggested I see a therapist for MLD to reduce limb size and then they can fit me in a standard garment. I’ll leave aside the whole practicing medicine without a license issue, in part because I have a hard time believing the rep from Biacare would do it, she is a professional who knows her business and deferred to the treatment plan of my therapist extensively during the fitting. I reminded Nora that we had been through the whole MLD before compression issue before, and without compression the fluid re-accumulates, which is why MLD + compression is the standard of care. She said oh.

I said Biacare also provides custom compression for just this reason as noted in their catalog. We just need to order that. She said oh.

Nora then replied they don’t typically cover custom compression. I said actually they do. You just need to follow the procedures and submit the claims with the appropriate documentation and we will handle the rest. She said oh.

Then she went back to the rep from Biacare thought if you did MLD it would reduce limb size. I said but we’ve tried that, it didn’t work, which is why MLD + compression is the standard of care. She said oh.

She said okay, I’ll try and submit it for pre-authorization but I’m not sure we’ll have any luck.

I said that’s all I’m asking for. If they deny it, we will figure out what to do next.

The insurance company has officially deemed it medically necessary. Now the rest is on Wright and Filippis.

We will see where we go from here.

Hopefully, to me, finally, after all these years, wearing the appropriate compression. And no longer bedridden and getting sicker by the minute.

Wish me luck. 🙂

Sending spoons for all my spoonies…  

Once more into the fray

Tags

compression garments, health care, insurance, lipedema, lymphedema

When last I wrote, long, long, *long* ago, I was to be measured for progress. The good news is, the leg that had been most recently treated with the Flexitouch pump was much smaller. Yay! The leg that had been a day between treatments was larger. Boo.

It has been noted several times in this journey that while the pump and massage work wonders, without compression, the losses aren’t maintained. Those of you familiar with lipedema or lymphedema will say “well, duh!”. Worse, since I have a systemic disorder, without the compression, we just move the fluid around from one limb to another.

The problem is getting the compression is not so easy, which is why I have been silent.

In the last year and a half (and then some) I’ve been to multiple physical therapists, multiple DME providers, and waged multiple battles with insurance companies. I’ve stood firm with doctors, and cried hot, burning tears of frustration. It just shouldn’t be this hard. I have a diagnosis. There is a treatment. I respond unusually well to treatment. I just can’t get the treatment I need.

What the physical therapists want to do is do the MLD for several weeks, and order compression for one limb at a time. At first I was baffled by this. It’s like having cancer and the surgeon wants to remove the tumor piece by piece over several weeks.

Finally after going to several therapists who billed for multiple visits while making multiple excuses for not ordering the compression (or flat out refused) I decided we needed to try something new. I went to my doctor at U of M, and after much back and forth, left with a prescription for full body adjustable compression.

Getting it filled was another matter entirely.

The first provider (in network) we went to spent hours measuring me, hours trying to fit me into ill-measured garments, and then tried to get us to sign a document stating that we would allow them to bill us at the out of network rate.

Um, no. If I had the money for an out of network provider, I would have gone to an out of network provider. My intentionally choosing an in network provider might have been a clue that perhaps I was electing to use my in-network benefits.

I decided that even if we were able to work things out with them, I wasn’t interested in rewarding this kind of behavior. So we looked for another provider. This required multiple calls to our insurer Cigna. During one call, a supervisor spent almost two hours on the phone with me trying to find a provider that would provide compression. No dice. They tried calling the first in-network provider. They say the garments will cost us $5500. Cigna says sure, we reimburse $2800. Provider says they sign for out of network benefits or we won’t order the garments. Supervisor thanks them and hangs up.

But I come away with a clue as to why this whole process is so damn hard.

Cigna finally gets me an appointment with another provider. They call me not an hour later and apologize, and say they will only be providing off the shelf compression, they won’t be doing custom compression any longer, they can’t do it and stay in business. No wonder. If your mechanic could only bill for half the cost of the parts and nothing for labor, he wouldn’t stay in business long either.

We asked for another list of providers from Cigna. While I reside in Michigan, their next set of referrals included a provider that, wait for it, doesn’t do custom compression, in CHICAGO, and a company in Minneapolis that makes compression vests for pulmonary insufficiency. Completely different disease. Completely different product. Many, many miles away.

At that point my brain exploded and I spent several months licking my wounds and trying to figure out what hand I even have left to play.

Meanwhile my husband changed jobs and we have a new insurance company.

We had some hope that would change things, this plan has a much higher premium and the deductible is 4 times higher.

But so far it’s looking just as bleak.

I’ll go into more detail of what has taken place the last 6 weeks in another post. For now this is long and depressing enough.

Until next time, peace, love and spoons to all my spoonies.

Quality of Life

Healthcare in the US understands quality of life issues better in the context of acute or end stage illness.

Chronic disease, not so much.

It’s very difficult using current tools for a patient with chronic diseases to accurately communicate what hurts. My most recent OT appointment is a great example of one reason.

I have been doing crafty things, and when I sit too long hunched over, I get a focal migraine. So my OT, Deanna did some body work, rather like a myofascial release. It worked great. First night I still had a migraine, but the second day, no migraine and the muscle tightness on the right side of my neck, back and shoulder was gone.

Guess what? I suddenly realized I have the EXACT same pain on the left side, but was completely unaware because the pain on the right side was more intense. Once that pain was gone, I had a whole ‘nother issue to deal with. An ongoing issue, since the little tumor/buggers press against nerves and muscles and cause charley horses in places I didn’t know they could occur, and my muscles are generally in a constant state of irritation and overreaction. Understandable given the estimate I have thousands of them.

When you’re dealing with a systemic disease and chronic pain, asking for a number to assign to your pain and a location is flat out useless. It’s faster and easier for me to tell you where it doesn’t hurt, and any number I give you is going to be a composite score of the three in my arthritic fingers and the 8 in my back and the 10 because I’ve got the mother of all migraines and so on.

The same goes for questions of ADLs (activities of daily living). Most patients with systemic disorders go decades without diagnosis, and by the time some brave doctor tries to sort them out they’re such a bundle of medical neglect that it’s not as simple as a few OT sessions and everything is better again. You may remediate one issue only to find 10 more crop up like some kind of medical Medusa.

The thing is, it gets very difficult to get doctors or worse, insurers to continue to prescribe treatment. The thing is, the fact that you’ve licked one issue and more have cropped up proves treatment works. Viewed in the context of the years of necessary treatment not given, that 1-3 years of intensive therapeutic intervention isn’t really all that expensive, it’s just that it’s been shuffled off until later. That ounce of prevention really is worth a pound of cure. That same health
care delivered preventively would have been cheaper and more effective.

Once you’re in the position of having a patient in need of such intensive rehabilitation, what do you do?

The answer is clear, I think, but I know from my support groups it’s rarely what happens. I’m persistent and will not stop asking to get my needs met until it happens. Most patients with chronic diseases struggle enough to stay alive and sane, skillfully navigating the needlessly complex medical and insurance waters is an unreasonable thing to ask of them.

So we can assume the cost to the patient, pain, fatigue, frustration, higher rates of suicide, depression, and hell, being bedridden is nobody’s idea of a good time. But what happens to a family when a parent has a chronic disease? Vacations? Not hardly. Play ball? No way, Jose. Board games? If Mom hasn’t zonked out from her pain meds, which are WAY cheaper than rehabilitation.

What if the patient in question was a volunteer? Firefighter? Doctor? Foster parent? Great neighbor? What happens to society when these people slowly retreat to the comfort of their bed and a bottle of pills? What happens, as is always the case with a systemic, progressive disease when neither the pills nor the bed provides any more comfort?

I have cried in frustration at Kaiser denying my access to rehab and pain meds, but being the stubborn cuss I am, I learned how to help myself. I still needed access to rehabilitation, which does for me that which no amount of my stubbornness can help me do for myself, but now I have tools at my disposal that increase the effectiveness of any given therapy, and allow me to feel some measure of control over my own body and how functional I am or how much pain I’m in. I’m no longer dependent on any doctor, any insurance company to remain marginally functional. There are times where self-care was the only care I had, and I’ve learned what to do with that.

But don’t think for a minute my world didn’t shrink considerably, and that a high price wasn’t paid by all.

Tomorrow we may be measuring me for progress. Last time I had MLD most of the benefit came from compression, and I don’t have that yet, but it will be interesting to see if the pump has made a significant difference, and hear if my OT has had any luck getting my doctor to write a prescription for the leg compression. Let’s hope.

Baseline

For the sake of documenting my journey, here is the first set of “stats”

I used the measurements taken when I got my pump. Because the lymphedema is so severe in my hips and buttocks, and because I had measured my hips recently I’m going with my measurement instead of the one in my paperwork.

Hips: 166cm

Right side

Thigh: 73 cm
Knee: 49 cm
Calf: 50.5 cm
Ankle: 27 cm

Weight: 310

Here goes the nightmare inducing part, the picture.

I did this following a treatment on my left leg, and if you are paying attention, you can see the lumps and bumps are quite a bit smoother on the left side (if the iPhone didn’t flip the darn image).

Here’s to better pictures in the coming weeks….

The Road Not (yet) Taken

The journey to this point, to standing on the precipice of recovery, was a long one.

As I mentioned, I struggled with my weight for years.

That’s really rather simplistic.

I was a skinny kid most of my life, the one who’s cheeks were pinched and who Grandmas (mine or others) were constantly trying to shovel food into.

“Eat! You’re too thin!”

“You eat like a bird!”

The first time I ever remember worrying about anything other than people trying to fatten me up was shortly after puberty. I spent the summer (as usual) with my Aunt and Uncle, eating the same things, doing the same things, riding bikes, swimming in the local ponds, occasionally riding horses, doing kid stuff. That summer I gained 40 lbs. In one summer. Doing nothing different. Probably 8 of that was breasts. I kid you not. Even with that, it was an unusual increase.

Still, other than a few lectures to eat less, and start exercising, nobody thought much of it.

I had various periods where my weight would trickle up, but nothing like that. And nothing that seemed to trigger any awareness on the part of the adults in my life. I got labeled lazy, and in all fairness, I’m sure that’s what it looked like from the outside. My legs ached when I stood still. Walking was ok, but even then, if I overdid they ached and burned and felt like lead. Adults would reassure me it was growing pains or normal or just getting older.

I had my first child two months before my 19th birthday, and once again, I put on considerable weight. I ate pretty much the same thing throughout my pregnancy, but suddenly in my third trimester, I started putting on 10 lbs per week. Every week for 4 weeks. It stopped as quickly as it started, again, with no change on my part. The pattern repeated during my second pregnancy 7 years later.

Over the years I tried dieting, on my own, Weight Watchers, Jenny Craig, etc. Inevitably I’d gain weight, not lose it. It was heartbreaking and frustrating and made me feel slightly crazy. After my third son was born, I tried Weight Watchers again, using their new, easy, 1, 2, 3 points system. I ate the minimum calories, almost never ate my bonus points, and I worked out like a madwoman. I gained weight.

I had several doctors over the years suggest I wasn’t eating what I thought I was, or that I was lying, or that I must be sleep-eating. I finally gave up, and decided I’d eat healthy, move as much as felt right, and leave the rest to fate, because what I had been doing wasn’t working. I started eating a whole foods, higher fat diet, but focusing on healthy fats, eating low glycemic, and stopped obsessing over the scale.

Almost miraculously, my clothes started hanging on, or falling off. Suddenly I didn’t have to fight or struggle, I was losing weight without losing sleep over making it happen. For the first time in decades, I felt good, had some energy.

It was a relief to be diagnosed with Dercum’s, and even more so with lipolymphedema. Finally I knew what was wrong, why I often gained instead of lost, and why treating my body well instead of obsessing over a number had yielded the results that previously eluded me.

Accessing treatment for this condition was another matter. Partly due to the vagaries of the American insurance system, partly because of bias, partly a lack of awareness.

I’ve spent 2 periods of 2 years nearly bedridden. Meaning having to retreat endlessly to my bed to rest my broken and weary body. As someone who had cancer at 35, who has lost many relatives to cancer far too young, it’s frustrating and heartbreaking. As a mother of young children, and a wife, it’s maddening. The price I paid is one thing, but the cost to my family was needlessly brutal.

So I’ve fought a long, drawn out battle to get the treatment I need. Now we’re finally here. There are more pieces of the puzzle that need to be found and solved but this is a good start.

I stand at the crossroads, having taken my first tentative steps, feeling my first successes.

This halting stop/go, yes/no world can make a girl a little crazy, but I’m thankful for the opportunity to finally see what I can do, and to hopefully get some of my life back. Some quality of life for me, and my family.

Whatever comes, this is more than I dared hope for….

Raison d’être

I have struggled all my life with a variety of health complications, weight, hair loss, fatigue, pain, and then cysts on various organs, and a growing number of lipomas.

In early 2006 my ever-confusing world changed. I was diagnosed with Dercum’s Disease by Dr. Karen Herbst. Suddenly I had some way to come to grips with what was happening to my body. Thanks to tireless dedication and exhaustive research on the part of Dr. Herbst, and the efforts of those working towards increased awareness and funding for research of Rare Adipose Disorders (RADs), I had hope for effective treatment.

Dr. Herbst did indeed come to understand facets of this disorder that hadn’t been previously addressed. With understanding came new treatments. For 6 years accessing treatment has been slightly more painful than smashing my head into a concrete floor with an anvil.

Once we disengaged ourselves from the HMO my husband used to work for (and moved across the country) the search began for a doctor that would help me in my journey to become as healthy as I can possibly be. After a year and a half of false starts, I found a doctor in Ann Arbor, Michigan that was a great fit for me. It’s nearly a 4 hour drive each way, but well worth it.

This past week I received my Flexitouch, a sequential gradient pump for the treatment of lymphedema, which has also proven to be quite effective for lipedema as well. Though the thought is somewhat cringe-worthy, my hope is that by documenting via blogging and pictures, I can increase awareness of RADs, and demonstrate visibly the financial benefits for patients, insurers, and society of successfully treating people with these disorders.

In addition to the Flexitouch, I will be treated by an Occupational Therapist who herself has lymphedema, and thus far has proven to be an incredible resource as well as being incredibly skilled at MLD (manual lymphatic drainage). We will additionally be working toward getting compression garments that will help prevent fluid from accumulating between treatments. At this point just can’t express in words how thrilled I am to have the pump. Not only have we already seen signs of reduction of leg and trunk circumference, but my pain levels (in my legs at least) are dramatically reduced.

So that’s the story so far. Stay tuned, I’m hoping for a very happy ending…