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Another new brace.

May 7, 2013
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Well, as I revealed a while back in my blog, My awesome new knee brace, I use a cane and a knee brace to manage my osteoarthritis.  I have to say though that the infatuation for the McDavidness did not last.  My husband convinced me I needed to return the brace after two days.  I stand by my previous review and vouch for the relative mojo of the brace, however our relationship was doomed from the start.  The snug fit I praised at first became more of a torture chamber than a support after an hour of wear.  The problem was that my thighs did not have the cylindrical shape the brace was designed for.  My thighs have a more feminine funnel shape.  Thus while the fit was fine and maybe slightly loose on the calf, it was tight on the thigh causing the metal support structure to dig into my flesh.

I bought another brace, this time made by Mueller.  Mueller is another company which manufactures braces and supports for sports.  The pictures on their site are all of young athletes engaged in hard charging activities like tennis, running, and basketball.  Recently my husband’s podiatrist commented favorably on the brace, “Mueller makes some good braces.”

Mueller Hinged Wraparound Knee Brace Model 3333

Mueller Hinged Wraparound Knee Brace Model 3333

This brace has worked out a lot better.  The main difference is its wrap around design, rather than a sleeve type design.  That means I have more versatility in the adjustment of the velcro to make it fit my body.  Again, the lower end of the brace that fits below my knee is slightly large and the upper end that fits around my thigh is a bit small.  Since the brace has velcro fastening, I can attach the top flaps to each other at an angle and with just the last half inch of the straps overlapping.  The velcro holds all right once the outside straps are fastened.

While the Mueller 3333 does not have McDavidness and mojo, it fits better and gets the job done.  I do like its slim profile.  The hinges do not rub my other knee.  Years ago I had an obscenely expensive Donjoy brace.  It was all metal and I got to pick the color (they even had leopard spots) but the hinge area bumped my other knee, altering my gait.  Also it was not adjustable for weight gain or loss over a certain amount.  I think movement was better with that brace, but overall versatility was less than these velcro adjustable over the counter braces.

So, to find the best fit, sometimes you have to try out a few different models and brands.  This Mueller brace works ok for me now.  I’d love to find one that fits a woman’s thigh better, though.

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from → lifestyle, Treatments

The mystery of the donut hole. Why does it need to be mysterious?

April 30, 2013
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Before my husband went on Medicare, I spent many hours researching the rules and the options trying to figure out the best choices for us.  The system is extremely complicated and the information needed to understand it tends to be scattered all about the web.  Even when it is possible to find the information, understanding it is a whole other issue.  It is ridiculous to expect people to be able to negotiate this wilderness of nonsensical regulations.  I am a reasonably intelligent person, well educated, with over 20 years experience in the health care field.  I can’t figure this crap out without extensive study and some head banging.  Still after all my efforts, things come up that surprise me.  The big one this week was my misunderstanding of how the donut hole (in Medicare part D, the drug benefit) works.

So, how is the donut hole defined?  According to Healthcare.gov the definition is simply this:

Most plans with Medicare prescription drug coverage (Part D) have a coverage gap (called a “donut hole”). This means that after you and your drug plan have spent a certain amount of money for covered drugs, you have to pay all costs out-of-pocket for your prescriptions up to a yearly limit. Once you have spent up to the yearly limit, your coverage gap ends and your drug plan helps pay for covered drugs again.

That doesn’t sound so difficult, does it?  For a bit more detail, see this explanation about 2010 costs on the Medicare.gov blog:

  • You pay out-of-pocket for monthly Part D premiums all year.
  • You pay 100% of your drug costs until you reach the $310 deductible amount.
  • After reaching the deductible, you pay 25% of the cost of your drugs, while the Part D plan pays the rest, until the total you and your plan spend on your drugs reaches $2,800.
  • Once you reach this limit, you have hit the coverage gap referred to as the “donut hole,” and you are now responsible for the full cost of your drugs until the total you have spent for your drugs reaches the yearly out-of-pocket spending limit of $4,550.
  • After this yearly spending limit, you are only responsible for a small amount of the cost, usually 5% of the cost of your drugs.

Hmmm.  Ok, still says you spend a certain amount, then you’re in the donut hole, then when you spend some more you are out, right?  Perusing Medicare.gov (the official US government Medicare website), the information is much less specific, essentially directing you to the plan database to find plans offered in your area.  The key point not mentioned in any of these explanations is that the formula to figure the amount of money spent to get IN the donut hole is different from the formula to figure the amount spent to get OUT of the donut hole.

So why does that matter?  Well, it certainly affects your budget planning for the year.  Most articles I’ve found on the web on this subject deal mainly with strategies to avoid the donut hole.  For example, this article from AARP.  I wasn’t all that interested in those as my husband takes some high dollar drugs that we really can’t change at this time.  There is no way possible for us to avoid the donut hole.  When my husband became eligible for Medicare in November last year, it took one month to get in the donut hole.  This was after filling 90 day prescriptions for his two most expensive drugs.  I was in utter shock when this happened.  The only thing that saved us was the end of the plan year.  This year we strategized to fill prescriptions for cheaper drugs before expensive drugs to maximize our time before coverage dropped out.  My estimate for coming out of the donut hole was 2 or 3 months, when we again bought the expensive drugs.  WRONG!!!

You see the explanations I had read on the Medicare site and on various patient or senior advocacy sites never explicitly explained the calculations of the numbers.  Certainly the policy information we received from Humana for my husband’s part C (Medicare Advantage) policy did not.

Here is an example of the type of language generally encountered.  Ignore the specific numbers mentioned as this article is several years old.

After $2250 in total drug costs is reached, there is a gap in coverage (the “doughnut hole”) and the enrollee must pay the full cost for their prescription drugs until they have paid $3600 out-of-pocket expense. (It has been erroneously reported that the $3600 out-of-pocket expense is in addition to what has been paid out-of-pocket towards the initial $2250. Actually, what has been paid out-of-pocket during the initial coverage phase also counts towards the $3600.)

After total true out-of-pocket (TrOOP) expense equals $3600, enrollees reach “catastrophic coverage” and their cost per drug drops to a small co-pay (usually $2 or $5) or 5% co-insurance, whichever is greater. During the period enrollees are in the coverage gap or doughnut hole, they must still pay their monthly premium.

 I found this one on About.com: Arthritis and Joint Conditions.  It is actually the first article I found using the search phrase “donut hole medicare” which makes mention of TrOOP (true out of pocket costs).  TrOOP is defined on the Centers for Medicare and Medicaid Services (CMS) website as:

These payments count toward a person’s TrOOP costs:

• The amount a person pays for covered prescriptions before his or her drug plan begins

to pay (the annual deductible, if applicable)

• The amount a person pays for each covered prescription after his or her drug plan begins to pay (copayments or coinsurance during initial coverage period)

• Any payments a person makes for a covered prescription drug during his or her plan’s coverage gap, if the plan has a coverage gap

These payments don’t (emphasis added) count toward a person’s TrOOP costs:

• The share of the cost of the drug paid by a Medicare drug plan

• Monthly drug plan premium

• Drugs purchased outside the U.S. and its territories

• Drugs not covered by the plan

• Drugs that are excluded from the definition of Part D drug, even in cases where the plan chooses to cover them as a supplemental benefit (such as drugs for hair growth)

• Over-the-counter drugs or most vitamins (even if they’re required by the plan as part of step therapy)

I was unaware of TrOOP until a couple weeks ago when I was trying to figure out why the little graph on my husband’s most recent medication cost statement only showed us one third of the way through the donut hole when we had just spent a lot of money on expensive medications.  By my calculation we should have been closer to two thirds through the hole.  This year, the amount spent to go in the donut hole is a total drug cost of $2970.  The amount to get out of the donut hole is a total out of pocket cost of $4750.  This is where I made my mistake.  Note that the first amount includes what you and the insurance company spend combined.  The second amount is only what you spend, plus the discount the drug companies give you on your brand name drugs while in the donut hole.  TrOOP cost is the key.  This means instead of getting out of the donut hole when drug costs hit $4750 total like I thought, the costs mount to more like $6530.  This means the amount we have to pay while in the donut hole to get out is not around $900 like I thought.  It is closer to $3500.  The end result here is we will never get out of the donut hole.  That means we have no drug coverage for the remaining 8 months of this year other than the 50% discount the drug companies are required to give us for brand name drugs.  When one of your medications costs over $1800 for a 90 day supply, even a 50% discount doesn’t help that much.  My husband’s monthly Social Security disability payment is less than $800.
It is devastating to realize how wrong I got this.  It felt like a real bait and switch cloaked in bureaucrat-ese.  If I can’t figure this out, how on earth does anyone expect an 80 year old grandmother with a high school education to get it?  Grandmas can be real sharp cookies and still miss this by a mile.  I know many disabled people (like my husband) would not have the skills to work this out on their own.
So, why does it need to be this complicated?  It doesn’t.  The convoluted figuring and splitting of costs probably makes it cost more to cover people’s medications than it would if the language and formulas were simpler.  I am at a loss as to how to change this.  Do we have to wait until 2021 when the donut hole closes (supposedly)?
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Kaiser Permanente denying its members appropriate mental health care.

April 18, 2013
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I read a disturbing article on Medscape yesterday about the situation with the Kaiser Permanente HMO in California.  The company has been cited by the California Department of Managed Health Care (DMHC) for its actions covering up the HMO’s failure to meet the requirements of the state’s “timely access” law.  KP kept separate paper records for instances in which patients called for appointments for mental health care and were placed on a waiting list or told to call back.  When a patient called and was able to make an appointment, this call was recorded in the electronic medical record.  KP of course denies wrongdoing.

The DMHC also sited Kaiser for other violations including providing it’s HMO members with “inaccurate education materials” which implied that the limits on mental health care benefits were more restrictive than permitted by law and “may have discouraged some enrollees from seeking and accessing medically necessary behavioral health services.”  These problems have evidently been going on for quite some time.  A November 2011 article in Huffington Post, “Kaiser Permanente Makes Billions in Profits While Overburdening Staff,” describes KP’s shoddy and deceptive practices, including forcing patients to wait weeks for appointments, providing inadequate new patient evaluations, and shunting patients into group therapy when individual therapy is indicated.  The Post cites findings of a report by the National Union of Healthcare Workers.

These alarming allegations and government oversight findings are likely the tip of the iceberg.  In my opinion, it is dangerous to allow an insurance company to also run the health services it requires its members to use.  I experienced this kind of abuse myself many years ago while a member of the Prucare HMO.  I was seeing a psychiatrist at the only psychiatric practice the plan covered. Routinely the doctor would order follow up in a certain amount of time, for example two weeks, and when I went to the appointment desk to schedule I would be told the wait for a follow up appointment with my doctor was many weeks longer than what he had recommended.  When I complained to the doctor, he said he had no control over that situation.  Eventually I gave up using the psychiatric services offered by my plan.  I did my psych follow up with a primary care physician who really did not have the expertise to manage my medications but was able to write for refills for my ineffective regimen.  I sought psychotherapy from an outside therapist and paid out-of-pocket.  This bad experience has left me leery of using insurance to cover my psychiatric care.  I have paid a psychiatrist who does not take insurance out-of-pocket for many years and have found her to be the most knowledgeable and thoughtful psychiatrist I have ever seen.

The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) is a federal law requiring insurers to cover mental health and addiction treatment at a level equivalent to the coverage provided for other medical care.  Here is an excerpt from the United States Department of Labor fact sheet:

The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) requires group health plans and health insurance issuers to ensure that financial requirements (such as co-pays, deductibles) and treatment limitations (such as visit limits) applicable to mental health or substance use disorder (MH/SUD) benefits are no more restrictive than the predominant requirements or limitations applied to substantially all medical/surgical benefits.

This law has made it much easier for people to obtain needed mental health care both from a cost perspective and in terms of limitations of treatment.  Mental health care is just as important as other aspects of health care that we take for granted, such as being able to see a doctor for the flu or for high blood pressure or a broken leg.  Shame on Kaiser and the doubtless many other companies seeking to skirt the intent of this and other patient advocacy laws.  One of the main problems in our health care system and a huge drain of money and resources is this monster network of insurance companies and the accompanying regulatory bureaucracy we have created.  As long as we have profit makers in charge of our health care, we will continue to experience ever upward spiraling costs and fraudulent actions which drain resources from all of us and deprive us of the care we should be able to get here in the United States.  As someone who has worked inside the system, I have seen the results too many times: people putting off care because of cost, sometimes suffering much worse health consequences as a result.  I feel helpless watching this situation and listening to the rhetoric bandied about by politicians (who incidentally usually have great health coverage).  I don’t know what kind of catastrophe it will take to change things.  It seems like that is the only thing that will get the attention of people in power.

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from → health care system, law, mental health, Politics

Insurance company benefits managers.

April 14, 2013
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A few weeks ago my husband was scheduled for facet injections following a severe flare of his chronic low back pain.  The facets are PE-Facet_Figure2small joints on the back of each vertebra where the vertebrae touch each other.  Pain in the facet joints is a result of arthritic changes as we age.  The hallmark of facet pain is pain with leaning backward or arching the spine.  It can be difficult to definitively diagnose where the pain is coming from as other conditions such as degenerative disc disease or spinal stenosis can cause similar pain.  Facet injections are a diagnostic procedure in which anesthetic and steroid are injected into the joint space.  If the pain is relieved, even if only for a short time, you know the facet is a source of pain.  If not, then suspicions falls on these other diagnoses.  See NYU Langone Medical Center’s page for a more detailed explanation.  The illustration on the left comes from Mayfield Clinic’s website.

My husband’s doctor had determined by history and thorough physical exam that the most troublesome part of his pain appeared to be facet related.  Thus scheduling facet injections to confirm and get on the road to giving him more relief than he is currently getting on long acting morphine tablets.  Unfortunately, the insurance company denied approval for the procedure.  This caused us to get yet another MRI of my husband’s spine to prove what the doctor already knew.

So why was this procedure denied, then later approved after two more doctor visits and a $2000 MRI?  No one involved in my husband’s care had any question that he has facet pathology, including the neurosurgeon who actually looked at his facets while performing a 3 level laminectomy to remove a fatty mass from the epidural space two years ago.  The easiest answer is the insurance company was being cheap and hoped he would go away.  I’m sure Humana doesn’t see it that way, at least publicly.

Actually, Humana removes themselves from this process by hiring a company called OrthoNet: Integrators of Orthopaedic Care to review orthopedic claims.  OrthoNet reviews claims and looks for reasons the insurance companies should not pay for the care ordered by the doctor.  The way they word it sounds nicer:

Our innovative care management model integrates the needs of providers, payors, and members to ensure the delivery of high quality, cost-effective care while realizing substantial savings that keep the costs of healthcare down.

Essentially they are paid not just to say no, but to rationalize the denial in such a way that it is difficult for patients to appeal the denial.  Otherwise, why would an insurance company spend the money to outsource claim review?  The cost of hiring OrthoNet plus the claims paid would have to cost less than Humana reviewing the claims themselves.  They expect OrthoNet’s decisions to cost them less.

Here is an excerpt from the letter my husband received explaining denial of his procedure:

The records strongly suggest that you experience chronic pain that is related to radiculopathy.  These symptoms, however, appear to be responding to traditional medical management (75% pain relief with medicines).  Besides, your treatment history does not suggest that facet injections were safer and more effective for managing these symptoms.  Hence, we determined the request does not meet criteria. Therefore it is not approved for prior authorization.  We have also notified your provider of this decision.

OrthoNet is under contract with Humana to provide coverage of health care services as authorized and provided under the terms of the Humana Medicare Programs product.  We used Medicare guidelines for this decision.

Let me explain what is meant by radiculopathy.  This is dysfunction of a nerve caused by compression or interruption of blood supply where the nerve root exits the spine.  One common cause of

Herniated intervertebral disc compressing a lumbar nerve root.

Herniated intervertebral disc compressing a lumbar nerve root.

radiculopathy is herniated intervertebral discs.  For a comprehensive discussion of disc herniation diagnosis and treatment, see this article on the American Academy of Orthopaedic Surgeons’ website.  One of the key

Straight leg raise test.

Straight leg raise test.

indicators of disc related radiculopathy is pain with the straight leg raise.  A negative straight leg raise test (absence of pain down the leg and below the knee) indicates a low likelihood of lumbar disc herniation.

So, despite negative straight leg raise and positive indicators of facet pain, previous documentation of facet pathology both by MRI and by direct visualization by a surgeon, and the treating doctor’s diagnosis of probable facet pain syndrome, a “medical director” at OrthoNet is diagnosing probably radiculopathy pain.  Also, would anyone consider 75% relief of constant, excruciating pain enough?  I know I wouldn’t.

Ultimately, my husband got the extra testing and got his injections.  He had dramatic relief of the constant lower back pain he has had for several years for a few days.  This is considered a positive diagnosis of pain originating in the facet joints injected.  The PE-Facet_Figure3next step, if pain relief is short lived as in this case, is facet rhizotomy.  This is a procedure in which the nerve fibers transmitting pain signals from the facet joint are destroyed using radio-frequency energy through a small probe.  For a more detailed description of this procedure see the Mayfield Clinic site.  (For the record, I have no knowledge of Mayfield Clinic other than their website.  I have referenced their pages due to the high quality of their illustrations and explanations.)

So, all’s well that ends well, right?  For now, yes.  But taking just a brief look around the net, I see OrthoNet has quite a long reach.  They have (or have had) contracts with many large insurance companies besides Humana such as Aetna, Cigna, and Blue Cross Blue Shield.  This may save the insurer money, but I suspect in the long run it costs patients and Medicare more due to reduced function and quality of life, more diagnostic imaging and other tests to prove what the treating doctor already knows or strongly suspects based on actually seeing and talking to the patient and knowing their history.  I sure would prefer my doctor to make these decisions than some bean counter doctor that barely glanced at my records.  I doubt those doctors get bonuses for correctly approving procedures.

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from → health care system, medical procedures, physiology, Uncategorized

Atrial fibrillation.

March 30, 2013
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Continuing my series on dysrhythmias, today I will discuss atrial fibrillation and atrial flutter (AF).  These conditions exist when electrical impulses originate in places other than the sinoatrial (SA) node, such as in the pulmonary veins or other foci in the atria, Heart-Electrical-Systemcausing irregular contraction of the atria.  The National Heart, Lung, and Blood Institute has a good webpage describing atrial fibrillation in detail, including a great animation at the bottom of the page.

According to the Centers for Disease Control and Prevention (CDC), atrial fibrillation is the most common arrhythmia, affecting 2.66 million people as of 2010.  Incidence rises with age, so the older you get the more likely you are to experience this arrhythmia.  AF occurs more often in white people than African-Americans.  The risk factors for AF include  uncontrolled high blood pressure, heart failure and other heart disease, diabetes, hyperthyroidism, and advancing age.

Symptoms of atrial fibrillation include palpitations, shortness of breath, chest pain, and fatigue or weakness.  How symptomatic a person will be depends on how many of the aberrant impulses are transmitted from the atria to the ventricles.  If many of the signals are transmitted through the AV node to the ventricles, the heart rate may rise into the 150′s or higher.  This is called atrial fibrillation with rapid ventricular response (A Fib with RVR).  Patients having rapid ventricular response typically have chest pain, shortness of breath, and other symptoms of poor perfusion such as dizziness and fainting.  This is a medical emergency which must be treated at a hospital.  Some people have slower conduction through the AV node, keeping the overall heart rate below 100 beats per minute.  This situation is not as dangerous, but still merits expeditious treatment.

Cardioversion, putting the heart back into a normal sinus rhythm with either medication or defibrillation, is usually the goal of treatment.  Much depends on how long the patient has been in A Fib.  When the atria do not contract as they are supposed to, clots imagescan form in the left atrium, especially in the left atrial appendage.  This is an outpouching of the left atrium (LA) that forms a natural little corner that anything sticky can collect in.  The danger of clot formation in the LA is that pieces of clot may break off and be pumped with the blood into the left ventricle and then into the systemic circulation.  The biggest risk is that these emboli will end up lodging in one of the arteries of the brain, causing a stroke.  Cardioverting a patient who has significant mural thrombus (clot along the wall of the atrium) may cause catastrophic stroke as the clot is suddenly squeezed and breaks off.  To prevent this, doctors often perform a transesophageal echocardiogram (TEE) prior to cardioversion.  TEE is an ultrasound of the heart performed with an ultrasound probe placed in the esophagus.  Patients must be sedated for this procedure, otherwise the probe would never get past the gag reflex.  If significant clot is seen, then the patient is started on anticoagulant drugs that will be continued after going home for several weeks before cardioversion is attempted.  Heart rate will be controlled with medication in the meantime.  This gives time for the clot to dissolve and the anticoagulants prevent new clot from forming.  If there is not clot in the atrium, then cardioversion will be attempted at once.  If the patient has not already converted spontaneously with the medications given in the hospital, electrical shock will be used.  Again, for this procedure the patient is sedated and given pain medication.  Defibrillator pads are applied to the chest and electrical current is applied (shock) to reset the heart’s rhythm.  After a successful cardioversion, the patient is generally sent home on an antiarrhythmic drug to prevent recurrence.  If unsuccessful, anticoagulant drugs are started, usually Coumadin (warfarin) by mouth and heparin in shots or IV until Coumadin reaches a therapeutic level.  This takes several days.  Sometimes patients go home before reaching theraputic levels and need to continue injecting heparin at home for a few more days.

So, I’ve been talking about A Fib for a while here.  Atrial flutter (A flutter or AF) is similar to A Fib in that the atria are not beating properly.  In flutter, there is a rapid atrial rate but the firing of the cells in the atria are still coordinated with each other.  Thus there is still the regular squeeze of the beats rather than the quivering seen in A Fib.  The atrial beats are transmitted through the AV node to the ventricles at a ratio of 2:1, 3:1, or 4:1.images-1Treatment of atrial flutter is essentially the same as for atrial fibrillation.  Often a patient will switch back and forth between these patterns, hence the term A Fib/Flutter.

A patient who has had one episode of A Fib or Flutter is likely to have another episode sometime during their life.  Often these recurrences are asymptomatic.  You should see a doctor regularly to monitor your condition.  These recurrences may be prevented or controlled with medications.  In patients with frequent recurrences, ablation may be an option.  In this procedure, an electrophysiologist (specialist in the electrical system of the heart) finds and burns or freezes sources of aberrant signals in the atria.  See the link above for a detailed explanation.

I found an excellent FAQ sheet on the American Heart Association website which explains this topic in easy to understand language.  Other resources include the Heart Rhythm Society, the National Stroke Association, WebMD Atrial Fibrillation Health Center, and TheHeart.org.

More later on antiarrhythmic drugs used to treat A Fib/Flutter.

 

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from → heart, pharmacology, physiology, Treatments

Living with angina.

March 17, 2013
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For me, living with chronic angina has been an evolution of perception and understanding.  It’s something you actually learn how to feel over time.  People’s experience of angina (heart pain) is quite variable and subjective.  It’s hard to generalize from descriptions.  Like the pain of childbirth, it’s something you have to feel for yourself and put into a framework you can understand.

My very first chest pain, I dismissed as heartburn, even though it was much more intense and went away much faster than any heartburn I had ever had.  It lasted less than a minute and didn’t trouble me again.  My second cardiac chest pain experience happened two weeks later.  It had the same intensity and sudden onset, but this time it didn’t go away.  In less than 2 minutes I knew we had to call 911 and I was almost completely incapacitated by the pain.  That was my heart attack.

In the days after my heart attack, I had frequent pains in my chest.  In fact the pain was never completely relieved until my last day in the hospital.  This seemed odd to me, as I had cared for many people who received stents during an acute cardiac event who did not complain of any more pain.  I told the nurses and doctors and the docs changed my meds around until I got some relief.  It was Imdur, a long acting nitrate that made the difference.

I remember lying in bed reading while hospitalized and noticing chest pain while holding my paperback book in the air.  When I lowered my arm and leaned the book on the bed, the pain went away.  In my mind, I couldn’t imagine having exertional chest pain  from lifting a book that weighed only a few ounces.  I dismissed it as paranoia.  Similarly when I had pain with emotions, I tried to differentiate between “anxiety” and angina.  I didn’t want to be labeled hysterical by doctors.  Later at an appointment with my cardiologist, I described the pain I was having.  If it wasn’t exertional, he said he didn’t think it was cardiac in origin.  I was confused because the pamphlet in his waiting room clearly stated strong emotion is a known angina trigger.

On my daily walks I would try stretching my arms, back, and chest to see if my pain was musculoskeletal.  Over time, I came to accept that this pain was rarely musculoskeletal and usually relieved by nitroglycerin.  I became certain that emotions could trigger my chest pain after waking with severe pain the night after a particularly bad family dispute involving my stepchildren and having to go to the hospital.

As time went by, I learned the feelings I was having.  I realized that the times I was taking a walk and had this overwhelming feeling that I couldn’t go any farther but no pain or shortness of breath, it was pressure in my chest I was feeling.  The pressure took longer to learn to recognize than outright pain.  I learned that the pinching feelings I sometimes had in my left armpit or elbow while walking were also angina.  Over a long period of time, I learned to trust myself even when it felt like doctors didn’t.  I kept going back to the cardiologist early with my pain to see what else we could do.  He kept repeating the words “maximal medical management” which made me feel I had to accept this daily pain.  As it turned out, I was far from “maximally” managed.  One year and several med changes later, I have less pain than I used to and function better.

It took around a year and a half and many hospitalizations to gain confidence that I knew what was going on in my body.  One cardiologist I saw before I lost my insurance said he expected 2 or 3 hospitalizations in the first year as people learn what is “normal” angina for them and what is unusual.  He made me feel more like a normal patient.

During the following year, my understanding of the sensations of my heart has continued to evolve.  I’m less frightened by angina and have a good feel for what is “normal” for me.  I know what is likely to trigger angina and can avoid some triggers and use my nitroglycerin prophylactically for others.  For example, if I am walking farther than a quarter mile, I use my nitro spray before I start.  This makes pain less likely and when pain does come up, it is easier to treat.

For a while I have known I have what is sometimes called “variant angina.”  This is angina that occurs in the absence of stenotic lesions (narrow places) in the coronary arteries.  In my case, spasm of the LAD has been documented in two of my angiograms.  As far as we know this is what causes my angina.  Another possibility which we lack the ability to check on is coronary microvascular disease, where the small vessels, arterioles and capillaries, do not dilate appropriately with increased cardiac demand.  These are vessels that cannot be seen on a normal angiogram.  The tests needed to check this possibility are only available at a few research centers at the current time.

So for now, I am more at ease with my chronic cardiac pain.  I do hope for advances in treatment to improve my functioning, these would be years away.  In the meantime, we just adjust my medications periodically and I keep using my nitroglycerin.  It’s the best we can do for now.

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from → coping strategies, emotions, pharmacology, physiology

My awesome new knee brace.

March 13, 2013
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Since I am uninsured, my usual care for my arthritic knee has fallen by the wayside.  As I mentioned in my last post, I do have an appointment at the orthopedic clinic coming up in July.  Of course I began asking for this referral from my doctors at CommunityCare almost a year ago.  At the time I wasn’t having too much trouble with my knee, but I knew I could expect a flare any time if I increased my activity or the weather changed.  My knee is pretty high maintenance.  In 2002, I was hit by a car while crossing the street.  The injury I suffered is sometimes called the “terrible triad” (or sometimes, “unhappy triad”).  This is most commonly a sports injury which occurs when the foot is planted on the ground and the outside of the knee joint is struck with some force, such as a flying football player.  In my case, it was a car bumper imparting the force. I had surgery and a lengthy rehabilitation, recovering nearly full function in time.  Up until recently I was walking unaided and had pain, but it was usually manageable in a way such that I could still participate in normal activities.

Since the beginning of winter this year, maybe around Christmas time, I’ve had enough pain that I’ve had to walk with a cane.  Using the cane reduces weight bearing on the knee by about 25%.  In January, my pain management doctor (a physical medicine and rehab guy) suggested trying a brace.  Since I began using a brace, my pain has been reduced significantly so that most of the time I can walk without feeling like I’m getting stabbed in the kneecap with every step.

My new knee brace.

My new knee brace.

My first brace was an adjustable knee support with spring steel stays in the sides, providing lateral stabilization, that I bought at a drug store.  That one has now about worn out after use many hours a day for around 2 months, so time for a new brace.  I decided to go with a hinged brace that would offer better range of motion and more lateral support.  I did lots of research, mostly on amazon.com.  I love the huge number of reviews you can find for most products there.  I ordered my new brace yesterday and with the fantastically low priced Amazon Prime one day delivery, I received my brace this morning.

This is a McDavid Dual Disc Hinged Knee Brace.  It has polycentric hinges (whatever that means) and hyperextension stops (that means it won’t let my knee bend backwards, always a good thing in my opinion).  The reviews were generally favorable and suggested going up a size if your knee measurement was between sizes.  Following this advice, I bought an XL for my 17 inch circumference knee.  The brace fits snuggly, with nice compression from the neoprene sleeve.  Just the weight of it when I pulled it out of the package had a satisfying feel.  The velcro is industrial strength, though the straps are just a bit long for me.  If needed, I can always sew extra length of the hook side of the velcro so it connects fully with the loops.  The hole in the middle is to support the patella (knee cap) and help its alignment during movement.  That’s a feature my doctor particularly wanted me to use.

Explaining the McDavidness!

Explaining the McDavidness!

What inspired me to write this post, was not just excitement over new orthopedic equipment.  Along with my brace came this awesome card advising me of my good fortune now that I am a McDavid insider!  I especially like that they are refreshing their “McDavidness” and ramping up their “McDavid Mojo.”  I feel so incredibly included with this news and have utmost confidence in the McDavidness and the mojo of my brace.  I can imagine myself hobbling a mile or so down the hike and bike trail, knowing I have this maker of orthopedic products behind me all the way!  This also gives me a feeling of youth, like I can pretend I need this brace to protect my knee while snow boarding or rock climbing.  I don’t have crippling arthritis because I’m getting old, some jerk ran into me with his car and then fled the scene, and I don’t have enough money to continue my visco-supplementation injections.  I am all set for football or martial arts or whatever the world throws at me, including walking the dog.  Watch out, Shawn White, here I come!

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from → coping strategies, health, Treatments
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