The second guessing yourself game and the Havoc it creates

Finally, I am going to get a lightweight wheelchair. I cannot believe that I am so excited. But I am. Mostly because of the satisfaction that comes along with it.

I started battling for use of a wheelchair during my recovery over 3 weeks ago. That was when I was told, at the hospital by the discharge planner, that was a durable medical good that was not covered by insurance, along with the shower chair, raised toilet seat, and wheelchair cushion. This was after I spent a great deal of effort to determine what my policy covers. I even, in the hospital, spent hours highlighting the insurance document to show the discharge planners what was covered. Something that they never looked at. Something they pushed me back on. And, a discussion I crumbled on, and nearly gave up the fight, mostly, I just didn't push for what I really needed (a light weight wheelchair). I accepted the 2nd best option – any old wheelchair. And, that was not very good for any of us. So, since we got it I re-geared myself up to getting a light weight one. And, I have. And, it is covered.

So, what is the takeaway. Don't second guess yourself. Don't doubt yourself, especially when you know what your rights are (as I knew by my insurance company's medical policy bulletin covering durable medical goods). It is easier to doubt yourself when you are not feeling well, especially in the face of pressure and a system that seems to run on denial. I know I buckled. 

The good thing is that I regrouped, but it took 3 weeks longer to get what I should have gotten. Had I stood my ground I wouldn't have wasted the additional time (at least 8 hours in total) – day's wage – to get the right goods. So, next time I will stand my ground. 

I wonder if other people do this?  Maybe I am the only one, but I doubt that. HA!

Share if you have similar stories.

When you don't look the part

During my last several hospital stays I have taken to wearing a camisole (helps hold up the chest) and loose yoga capris after the initial surgery etc .... instead of a hospital gown. And, boy has that caused a stir to the point of eliciting comments from caregivers.  "Wow, you look like you are ready to leave." (on day 2 post surgery, while I am shuffling around with my walker). Or, you don't like you have anything wrong with you (What about all the IVs that are sticking out of me?). 

I don't think people say these things to be provocative. I guess I get provoked.  Sometimes I take it as minimizing my suffering or what I am going through. And, I do the same thing. I try to look like and act like there is nothing wrong with me so that I can pretend that there is nothing wrong. 

It does raise the question/issue of how linked people's perception are to being sick, including my own. You have to look sick to be sick. It's weird. It is almost as if, the legitimacy of struggle/illness gets reduced when one does not look the part. That happens to me on a regular basis. When people see me in person, check out picts, especially when I do not have an aid in hand (crutches, wheelchair, walker, cane) then I must obviously be OK.  "Oh, you must be doing better." When in fact, I often don't use a cane, because it hurts other joints, or I am too lazy, or whatever reason. I am in constant pain in so many places. But, because I am athletic looking, thin, long legged, I must be ok. When I went to the hip replacement class, prior to my surgery, two separate nurses checked to make sure I was in the right class. I insisted that I was. It depressed me, or should I say enraged me. It even makes me second guess myself. ..." Maybe I really am OK, and have no problems, or have lesser problems than I pretend I do ". When I allow those sentiments to grasp hold of me it can be deadly to the psyche and hurtful.

Its a conundrum. One of the many that I have had the pleasure, so to speak, of tackling in the experience of being a patient.  Mostly I have come to accept the frustrations of my condition, there are times, especially when I am fragile that I react. But overall I have gotten to accept the humor in it all and so try to find the comical. 

If I find myself needing to react. I slyly ask people, "Didn't your mother teach you not to judge a book by it's cover?"

If I didn't I would be in a very unproductive place.

Hospitalization Recap and Analysis: How you survive a hospital stay

One would not think that lying around and recovery could yield so many different unique experiences including the good, bad, and ugly. But, it is true. I have had one of the wildest health and life adventures starting when I came out of traditional hip replacement surgery ten days ago, at Stanford hospital.

Veinipuncture: Each day a new vein supply had to be found since I kept reacting to the needless IV.  They had to bring in the vein specialist, which took over 4 hours, who put my IV right in the bend of my wrist which really was unpleasant. At the end of it all I was left with marks and bruises all over my hands and arms. The first days my blood pressure was so low that I couldn't lift my head off the pillow without spinning out. That was fine, where was I going. Not far.

Rounds and Sleep deprivation: There was the usual routing of being woken up every 4 hours throughout the night to check vitals, and then of course as soon as you do fall asleep the docts start the rounds at a god awful 4 AM. I desperately kept the sheets over my head with the hope of sleepy some  Thank goodness I brought lavender essence, an eye pillow, headphones, and my Ipod to play spacey music. (these were the essentials to maintain sanity and get some sleep). 

Neighbors: Unfortunately I had a pain in the ass neighbor, who, decided because she was up at 5 AM, so should everyone else. She had no sense of others. Asking for coffee, talking loudly with the nurse at all hours of the night, and tweaking out when her friends didn't show up when she expected them to. She is the only neighbor in all my years of hospital visits that I wanted to throttle.  I know I should be compassionate, but she really lacked it.

Pain Management: There was a young resident from the Stanford Pain Management Clinic, Carlos assigned to my case, who despite countless conversations with me still had it stuck in his head that I was on Methadone for pain management since last year. I kept reiterating that was not the case, but he clearly did not get it as evidenced on my discharge summary, that I needed to quit methadone. Clearly they are so immersed in their own process/bureaucracy that they believe their own bullshit. The pragmatics of that experience evade me. I guess because they wrote something down it must be true.  Isn't that a logical fallacy? A couple of times the whole team of 5, including head honcho, would come in and talk to me for whatever reason. I will be curious what that bill will be like. 

The EHR system, EPIC: Stanford now has a "sophisticated" and probably expensive electronic health record system. To provide meds, they have to scan your wrist band. However, when they record vitals, they only confirm your name. As a result I noticed last one evening that despite a nurse checking my name, was entering data into another patient record. WOOPS. She asked my name, but the name on the screen was somebody else's. Although in my situation it was not life threatening, it could have been. That definitely raised my blood pressure. It seems more foolproof to use the same protocol as they use with medications.

Nurses: Nurses come in all forms, good, compassionate, old school, those that go through the motions, and those that are somewhere in between. The last night I was there I had one unbelievable experience. It was the first night without a catheter and the first day I started ambulating with my little walker. I needed to go to the restroom and requested help due to the mobility restrictions and lack of stability. The nurse said, "Oh, just go to the bathroom on your own, and drag the IV rack with you using the walker." I didn't respond because I did not know what to respond with. Are you fucking kidding me? is what I thought and wanted to say. Finally, I got an nurses aid to help me. She left me on the toilet for over 20 minutes. Finally, I got fed up and tried to drag myself back to the bed with the IV rack in tow. Despite my gingerness, the IV rack got stuck in the wall mounted television's cords. I was so pissed. I tried tugging at my IV to no avail. I was stranded between my bed inches away and the TV. I wanted to teach them a lesson and was seriously thinking of ripping it out and having them find me on the floor. That would learn them, but maybe not.

Discharge Planner: Discharge planners come in many shapes and sizes.  They are supposed to help you with the transition home and arrange for essential equipment to be brought to your home. They are very sweet, smiling, reiterating how they are here to help you, saying, "Please ask me any questions and let me know if I can do anything for you." When I asked for a wheelchair and shower chair (due to my restrictions and concern for preserving my other joints) the conversation went south. They said, "Oh no, insurance won't pay for that, you will responsible for the charges, it will be cheaper to get that on your own." I even spent several hours in the wee morning the evening before discharge highlighting the relevant sections, criteria, and codes of my insurance's clinical policy bulletin governing durable medical goods (DME) to  show them what my benefits were. And, all I was met was with resistance. They wouldn't even look at the document. All they kept saying was that we want to help all our patients but you realize you will be financially responsible. I kept saying, "... fine, but please if the criteria are met, can you please use the codes and terminology that my insurance requires to get things covered." I believe, if I have insurance, I should get it to work for me as much as possible. For Christ sake, for a shower chair, the requirement is that I cannot stand, which I cannot. Finally, I asked, through a torrent of tears, what is the worst case out-of-pocket scenario for these items. For the shower chair it was $27.00 and the wheelchair it was $56.00 a month.  That is far cheaper than purchasing on my own. The cheapest shower chair is around $45.00. At the end, I got what I wanted, but it was a horrid experience. Thankfully, I was right, insurance covered all the DMEs I requested. (I found out later through the case manager that my insurance company assigned to my case that the situation should not have happened. She never was asked what my benefits covered.)

So, that is a not so summary of the highlights of my 3 night stay at the great Stanford Hospital. An acme of California's medical systems. I remembered from my last experience how much I hate that system, and this time it was even worse. It is shocking. Everything is so specialized and no one seems to know what the others are doing. The continuity of care and follow through are fragmented. Dr Maloney's team, was at least on top of the things they needed to be on top of. This experience reminded me and reinforced the reasons why I have stuck with the Colorado team and Vail Valley Medical Center for so long. Increasingly I am thinking smaller is better. People are less disassociated from the larger picture and service is overall better. For instance, I prefer Ace Hardware store to Home Despot (oh, that is Home Depot). The prices may be higher, but you get good customer service and knowledgeable staff. 

The lesson in this tale is multi-fold:

1. Don't blindly trust the system including the people in the system. It could have dire consequences.
2. Be educated about your insurance policy.
3. Make sure you know what is happening around you. 
4. Be your own advocate or have someone else be your advocate.
5. Have notes written summarizing highlights of important conversations including names and dates.
6. Bring personal small comfort objects, whatever that is for you. 
7. Bring earplugs and try to get the bed farthest from the door (very helpful for sleep).
8. Bring a good dose of humor. 

Struggling

I am 6 days post op total hip replacement. Although this should be a relatively easy surgery I am seriously struggling -- mostly emotionally. I feel like I am free falling and cannot get any firm hold on anything. The rest of my struggling joints are being hit hard by my weakened state. I am struggling with being overmedicated by the Stanford pain management team. Who I now personally hate.  Since I came home, Friday, I have not been able to stay awake. It is a horrible type of drowsiness. Saturday, I woke up at 11am, then despite my efforts fell asleep during my uncle's visit, at 1 PM and slept through 6 PM. I desperately needed to wash up, but I couldn't be bothered, nor had the equilibrium to stay alert and upright.  Basically the same thing happened Sunday and Monday. Yesterday I woke up for 1 hour and then slept until 6pm. This is so unlike me. I have never had such an extreme reaction to meds. Also, it brought along a serious desperate depression of not being loved, forsaken, raging jealousy across a wide spectrum of  "things" -- not having children, no one sending me flowers, none of my friends calling (although my neighbors have been so terrific, and Larry too), why is my life so difficult?,why do my friends have such fine lives. you name it I am feeling it. It has been a very long time since I have plummeted so far and deep. I have lashed out at Larry and succumbed to my most immature reactions. So much anger and hate. To top it off, my brain is not functioning at all. I feel like there is a hole in it. I am clearly not firing on all cylinders. My negative experience in the hospital set the stage for a lot of these issues. Larry keeps telling me to let go, let it ride, but I am not succeeding very well. Every little thing is getting under my skin. This PM I have somewhat stabilized trying to hold it together. I yearn for so much and need so much. There is no filling the hole inside. So, I keep looking at the picture of Genesha that I have here in my room, the God who removes obstacles. I am looking forward to a little peace and hopefully happiness. I have struggled for so long.

OT: Support your Local Dump

I have been needing to get some outdoor working cabinets. So, today I decided to take a trip to the Last Chance Mercantile shop at our local community dump. Instead I found a sea of 1970's vinyl and wood office furniture that could endure outdoor conditions. So, Larry and I purchased, for the sum of $20.00 a couch and two chairs. They are not the ultimate choice in furniture or style, but certainly worthwhile for the price and establishing an outdoor environment in our backyard. They are certainly weather proof.

It is amazing what people throw away. Every time I go there, I realize what a throw away society we are. I am fortunate that I do not find it objectionable to get some used item for a tenth or more of market value, that is not entirely perfect but can do the job, and requires elbow grease. Frankly, I find something very comfortable and charming about these finds. I have made many happy purchases at the dump including desks, countertops, lamp fixtures, vases, firewood, end tables, coffetables, decorative items etc....

So, here is a salute to community dumps. May they be all supported and fruitful as the one I am lucky enough to contribute to and gain from. It is humbling, exciting, and fun, but you can never expect exactly what you came for.

How much is my Time Worth in this land of Mediocrity

Yesterday, I spent over 3 hours on the phone for one medical bill worth 270.00, that I am not exactly keen to pay because it doesn't seem fair to be dinged for a bill I recieved over 1 year post the procedure.

Increasingly we seem to becoming a land of abject mediocrity. Nothing is clear, followed through on properly, and then it seems to be spewed back at the consumer. This particular case is for a bill, from a provider of durable medical goods, that I frequently use following my multiple orthopaedic surgeries. Over the years I have seen nearly 5+ bills from this company that has an agreement with my insurance company. I have never needed to pay out of pocket, since usually, by the time I have surgery, I have reached my out of pocket max.

This time, something went really wrong. I received a bill over a year post surgery, stating that I owed $759.00, because I did not have insurance coverage at the time.  When this came to light, I contacted them directly, providing them with the correct ID (you see my company went through a transition and our insurance cards changed numbers). I thought that should make this go away. Well....Not!

I generally take the stance if I do not receive a bill then I should be ok with said provider. After not hearing from them for months, I received a collections letter for the amount due. I immediately called, requested to speak to a manager, who immediately said I was responsible, I signed an agreement with them for the insurance ID I provided and therefore, if something was wrong I was responsible for the amount. This immediately sent my hackles up. First, they make you sign papers as you are coming out of surgery and full of anesthesia, with blurry eyes, and doped to the max.  I typically do not remember what happened post surgery, so, how do I remember a specific number? It is like asking a drunk person to drive you home.  Anyway, I didn't know the insurance ID changed (everything else from that surgery was completely covered). Someone got the correct ID. I told the manager that I had called previously with the corrected info, but apparently the info did not get reprocessed with insurance. He said there was no documentation of the call. (Now this is where a on top of it patient can go back and look at notes of calls and name a person that they spoke to and the date. Unfortunately I could not find any record of this conversation, so shame on me). the discussion spiraled into an I said he said conversation. At the end, I said this can be solved easily by getting it reprocessed with corrected info. He then started squawking about a penalty for late filing, etc.... Patients typically have a longer timeframe to have claims processed (usually 18 months) than providers (I think 6 months). He seemed to agree to let me do that and hold the account. I called insurance, explained the situation, and they reprocessed it on their end. I expected that they would cover the charges in full (as they have typically done for the same charges). In fact, I just received and EOB for same equipment for my 08 surgeries, leaving a zero balance.

Insurance did not pay things in full. Frankly, after looking at the math over the series of multiple reprocessed EOBs I cannot ferret out exactly what insurance paid. The $ don't add up. According to the company insurance left a balance of 271.59. I received a call from the collector last week to pay the amount due. I told them since insurance paid I would like to work something out with the provider (Orhto Rehab).  They gave me a week to sort it out.

Part of me was thinking, shit, just pay it, and get this off your plate of things. I sat on that, but, the niggling feeling of injustice and that this just wasn't right sat with me.  So, I rolled up my sleeves and started calling all the numbers for Ortho Rehab. I was thinking of finding a VP to complain to. I called a different number for Ortho Rehab for my current bill to see if they could help. The original call center, in Arizona, was not helpful. The Denver call center did not know about Arizona, so I was again stuck. My brain and irritation was driving me to distraction.

Then I had a bright idea, why not contact the sales rep who provided me with the "goods" for my latest surgery. She was nice. I did get her number.  I called her, and she provided with a name of a person at the Arizona call center who may be able to help me out, or at least point me in the right direction. I contacted Mr Forrester. He picked up the phone. I explained my situation, he said he would look into it and try to help me figure out how to make this work to an amicable resolution. He was able to pull up my payment history, see how many times I have used their services, and wanted to assure me that they were about customer service. I said, wow, this is the first time anyone within the billing department took a big picture view, and that I was appreciative. We parted on good terms promising to resolve this in the near term.

And, so that is where things stand. I am not sure if the bill will be written off, but most importantly I found someone, who seemed to appreciate my situation, had initiative to look at my history, and was willing to do the right thing and figure out what happened, especially, given my history.

The lessons for me and others here should be:

1. Stay on top of complex billing situations.
2. Write down notes from any conversation you have with anyone about a bill or any complex situation.
3. Trust your instincts. If something doesn't seem right, it probably isn't.
4. Be creative about how you approach a problem. Or, sometimes doing the same thing over and over, you will get a different response.
5. Leverage your payment history (if it is good) or customer history.
6. Leverage insurance payment patterns if something seems different.

Now, I have to deal with several more of these types of bills, the next one is for $17K that insurance keeps telling me they did not receive the records they needed to process it. Although I have a note stating they had them in Dec. No rest for the wicked it seems. 

So, how do we keep moving on.....

Recently I have been regularly lauded by people I know and meet, including medical professionals about my endurance and great attitude. It is awkward to be told about my positive attitude these days. This got me to wondering and thinking about my attitude. I certainly know that when I started this journey, in 1994, when I was orignally diagnoses with MS, that I did not have a great outlook on the world. I did a lot of flaying, crying, and self destructive acts in the face of being really sick. And, boy, that MS episode was a real nightmare. I got really sick from the steroid drip, which unknowingly at the time, caused the future long term nightmare I am "happily" living.

When I found out I had this crazy bone disease in 1997, I did plenty of flaying, crying, and more self destruction. 

Frankly, I have only gotten this far, in the end, because I seem to be quite stubborn, I had to take my life into my own hands, and I have a great support network of friends, family, and some key medical folks that have helped me along. I truly couldn't do it without that. Also, I have been fortunate to play certain cards rigth (certainly no easy task) to get the help I needed. That was in large part in the face of what most people thought was reasonable. How many people are willing to invest in their healthcare to the point of traveling back and forth to a remote destination (Vail Colorado) to seek treatment, especially without deep pockets? Thank you Mom and Dad! 

After 9 surgeries there I have lost tract how much time I have spent/lived there. The last two years I have spent over 8 months in the Rockies? And, made some many great friends in the process. 

More about Medical Bills and the Insurance Morass

Following up to my rant/post yesterday I want to share two articles on dealing with the medical bill morass.

The first outlines some of the important techniques that can be successfully employed to help reduce out of pocket costs. It comes from a real life experience of a couple that tackled their spiraling costs. I have used a number of the techniques and it mostly works. Sometimes, like I said yesterday, it is random based on who is on the other end of the line. So, it always good to try and try again. 10 Ways to Cut your Medical Bills

Another article a couple of days ago addressed how a family member stepped up to help advocate for her brother. Negotiate Your Medical Bills And, through Htzpah, persistence, looking over an itemized bill for a hospital visit (that is enough to make anyone sick) -- Crimminy, up to $10 for a Tylenol pill. It is a sad state in this country that we have come to this.

In addition to some of the techniques identified I use the following:

1. Always, Always, keep notes for each conversation. Write, the date, who you spoke to, what about, and followup action item. This is useful when some action agreed to does not happen (no matter who it is) you can leverage that they said that they would do x, y, and/or z. Lack of Followup is great leverage.
2. When you review a bill, there are CPT codes associated with the charges, if the charge has been denied by your insurance company, find out why, then go back to the provider of services and see if they can legitimately change the CPT code (sometimes they can) and re-bill.  That has helped save me money in a number of circumstances. Each insurance company has slightly different policies and coding. I am beginning to see this as a new pattern.

If all this too much to do on one's own, or if, one doesn't have a family member, there are always professional advocates, who charge a fee, however, the reduction of stress of dealing with, let alone understanding, EOBs ( "Explanation of Benefits" for the luckily uninitiated), medical bills, insurance policies, and negotiating down the bills, may be worth the up to $80/hr fee some people pay. Benefit Advocates Help Reduce Fees.

Those are my hot insurance billing tips of the day. Good Luck and give a shout if you have further suggestions or need help.

Random Resolutions: Keep on Calling your Insurance Company

Most people may think that being a chronic patient allows for swathes of time and relaxation opportunities, in between medical appointments and other healthcare activities. Well, I can attest that is entirely not true. I cannot keep up with nearly anything. If I tried to not live any type of meaningful, proactive life, maybe there would be time. I have become passionate about not being complacent in the system -- this includes treatment, billing and insurance, and rehabilitation -- easily packaged as wanting to be an empowered patient, which is a full time job.

After all my broad medical experiences over the years, including treatment and consumer challenges I cannot simply blindly believe what anyone has to say, which can make me a pain in the ass to some, but my own best friend. It is exhausting and sometimes incredibly frustrating, but, if I don't do it, no one will.

There are so many times, I could just walk away from an insurance debacle or medical procedure decision and, just avoid dealing with them. And boy there are times I have, but I find I have to drag my sorry ass back to the table because I wouldn't be able to stand myself for giving up.

Here is a short story about dealing with insurance, which resulted in a success story, but when you consider the method of resolution I think it is immensely frustrating:

I have found nearly 9 times of 10 with insurance/billing problems the more I simply go back, make another call, find another operator to speak to, I can resolve my insurance/billing issue and have them pay, or get the doctor to write off charges.

Recently on one series of bills, it took 5 or 6 times of sending the documents insurance said they needed/didn't have to find out that they never undated the newer documentation in the system. In and amongst those 6 calls one insurance operator for Aetna, said, Mam, you need to appeal, that is all you can do. I threw my hands up, but several weeks later (2 weeks ago) I tried again, and finally got a reasonable rational result. The result I originally expected which is that insurance should have paid the charge. The bummer is that the result was merely achieved by persistence, nothing really savvy, but not giving up. It is frustrating because it is random. There is often no rhyme or reason and that sucks.

The lesson of the day: Keep on Calling!

AASTROM BIOSCIENCES INC - MarketWatch

10-Q: AASTROM BIOSCIENCES INC - MarketWatch A possible treatment for early AVN. This could be exciting.