With all of the stories and arguments about health care these days, I have decided to weigh in. I have been asked by many people to do this over the years, and it’s just never been the right time, but it is now. The main reason I want to share my story, is that I want people (lawmakers especially) to realize that the lives of American citizens are at stake.
My story is not unique; it’s actually quite common. I am a college graduate, a mental health professional, an advocate, an active member of my community and local Democratic Party, a volunteer, a disaster responder, a granddaughter, a daughter, a big sister, an aunt, a friend and most importantly, a mother.
Although I wear many hats, my primary identity over the past two years has become that of cardiac patient. I have High Blood Pressure, Cardiomyopathy and Congestive Heart Failure. My most recent Ejection Fraction, which measures how well the heart pumps with each beat, was 30%. Normal is 55-70%, anything under 40% is severe. Cardiomyopathy is simply heart damage. Mine is classified as restrictive/hypertropic. Resrictive means the ventricles in my heart are rigid and don’t properly expand when filling with blood. Hypertorpic means there is a thickening in the space between the ventricles, which limits the blood flow. If they become too thick, they will close and blood will not be able to travel to the ventricles at all. Heart failure means that my heart is weaker than normal and cannot pump the blood through my body at a normal rate. Mine is in Stage III, meaning I am comfortable at rest but minimal physical activity will cause me discomfort, shortness of breath or palpitations.
Just walking in from the car results in these symptoms. I am grateful for a sedentary job, this has allowed me to continue working in spite of my limitations.
I currently take Lisinopril, Carvedilol, and Furosemide. These medications will only do so much for so long. They will mask the symptoms, but not treat the illness. My cardiologist and my primary care doctor have both said that my heart damage is 100% reversible with gastric banding or gastric bypass, which would also alleviate my severe asthma and other issues. I have made all of the behavioral changes that have been recommended to me by my team of doctors. Physical activity had to be limited because exercising the heart muscle will cause it to grow, and because it is already enlarged, too much growth will result in the space between the ventricles closing completely, eliminating the blood flow. My current treatment, rising premiums, ambulance rides and multiple hospitalizations are financially draining us. We’ve considered filing bankruptcy, and have contacted a lawyer to discuss this matter. Financing the surgery is not an option as our credit is compromised due to medical bills and we have no collateral, we rent our home and both vehicles are paid for and 1998 models with well over 100k miles.
My cardiologist assures me that I could expect nothing less than a full recovery from gastric surgery. I have researched the options, discussed them with my family and physicians, and decided on the laparoscopic banding. The complications from this procedure are significantly less than those of the gastric bypass, it is completely reversible and costs about half of the other procedure. For the past year and a half, I have been able to maintain my weight through diet modifications. As a result, my EF number has increased by 2% and my blood pressure has lowered, but not stabilized. Each of my doctors has reiterated that weight loss is crucial to my recovery, without it, the situation will get worse. My behavior changes have slowed this process significantly, but the progression cannot be completely stopped, much less reversed until I am not carrying the excess weight that is causing my already overworked heart to work even harder. At this time, there is no scarring or permanent damage. With the current limitations on my physical activities, my doctors have recommended this surgery as a last resort. I have met with a gastric surgeon and his team, and almost everything is ready to go.
The only thing stands in my way; an exclusionary clause in my health insurance policy. Because the surgery can in some situations be used for primarily cosmetic reasons, it is considered optional. Because the surgery is sometimes used just to lose weight, the possibility that it might be needed to improve health or to save a life is cast aside, regardless of what my specialist’s determination. I have consulted with three doctors about this, and all have made the same recommendation. One of the arguments against the health care plan is that doctors will lose the power to make the best decisions on the behalf of their clients. I have to ask – how is that different from what is happening in my life right now?
An exclusionary clause is different from a procedure that is not covered; a procedure is not covered could be possibly be granted an exception through the appeals process. However, if the phrase “exclusionary clause” is attached, the insurance company does not deny the claim; they simply refuse to take it. No appeals process. No avenue of protest. I have discussed this with both the insurance team at the surgeon’s office and the claims department at United Health Care.
At my most recent appointment, the cardiologist informed me that there was no reason to see him again until I had the surgery, because without it, there is nothing more he can do. Without this surgery, my heart failure will continue to progress. I’m now in Stage III. The treatment that is recommended for Stage IV CHF is hospice and end of life care. With that being said, I can only hope that our lawmakers will take health care reform seriously, lay ideology aside and focus on what will achieve the greater good for every American.
I cannot make anyone understand what it is like to watch your children watch you die. The words do not exist. What I can do is share my story with the hopes that someday, situations like mine will no longer be acceptable in this country.
We cannot wait any longer for health care reform. As a provider and a patient, I am supportive of a single payer option, in fact, I do not take commercial insurance in my practice, I take Medicaid and private pay at a 50% discount. I am sure that a single payer system is not going to happen at this point, but regardless, changes are necessary. A public option has to be available, pre-existing conditions must be eliminated and exclusionary clauses need to be barred. Medications have to be covered. Health care has to be affordable and attainable for everyone. This is not a partisan issue, but it is a human rights issue, and a right to life issue. This is not something that can be taken lightly or compromised. Health care in this country is already compromised enough, and an effective system is long overdue.