Learning about health care from experience

I have wanted to write in depth about my feelings and thoughts on health care reform, but day-to-day life has kept me from it. So, as I sit on the couch, home from work because I am sick, I thought it was an appropriate time to discuss this issue. I have had plenty of “brushes” with government health care already so I feel I have a lot to say on this topic.

When my oldest daughter was 4 years old she got sick. My husband was active duty Navy and we relied on the Navy medical care system to provide our health care. I am grateful we had free health care because I feel that so much is owed to our military and it makes me sick to see those benefits eroding, especially for veterans. I was not, however, crazy about the military medical system at the time. This was pre-Tricare, which is better than what we had 20+ years ago, but still has many issues. It was totally run by the military/government and there was no private outsourcing or the options you see today.

This is how it worked: You got sick and needed to see a doctor. You were given a phone number to call, the same number given to everyone. Often this phone number was busy. You could literally call ALL DAY, or set your phone to do automatic redialing of the number all day, and never get through. If you or your child were sick enough, you would end up in the military hospital ER, often waiting 6+ hours just to see a doctor. So, when my daughter became ill, I began calling the number, trying to get her in to see someone. The first day, I could not get through. She was not sick enough to warrant an ER visit, so I started calling again the next morning. That afternoon, I was able to get through and was able to get her in to see someone the next evening. Now, if you’re keeping track, we are already on day 3 of her illness before even getting to see someone.

Based on my daughter’s symptoms of fever and vomiting, I was told to give her Tylenol and put her on the BRAT (bananas, rice, applesauce, toast) diet to calm her stomach. I left with my complimentary bottle of free children’s Tylenol and got home late that evening. Violently ill throughout the night, I started calling again the next morning and got an appointment for her that afternoon. I took her back in (day 4), was told that I had not given it enough time to resolve, and promptly sent home with another bottle of free Tylenol.

I was a young mother and trusted these doctors, but knew something was seriously wrong with my child. When she was lethargic the next day (day 5), again I called. This time I got a nurse who had pulled my daughter’s chart and refused to even give me an appointment because the nurse thought I was being too reactionary and I was told to stick to the Tylenol and BRAT diet. I wasn’t even allowed to bring her in. Desperate to help my child, I called a nurses line for the local children’s hospital. Because we were part of the military medical system, we were not authorized to use private providers. I told this nurse I didn’t care how much it was going to cost – I would figure out a way to pay for it out of pocket. I just needed someone to see my child. She agreed to make an appointment for me later that day with a private pediatrician.

When I took my daughter to see this doctor, he took one look at her, got on the phone, and arranged to have her admitted to the children’s hospital immediately. She was very sick and eventually diagnosed with Henoch-Schonlein purpura, a blood disorder that can lead to renal failure and can be fatal. She spent the next several days in the hospital and after many tests and a long recovery period, she was back to normal. Had I listened to that nurse on the military medical line, my child could have died. I do not blame the person – I blame the process. I had the option to go to a private physician only because I was not restricted to a single payer system, and because I was willing to pay. If we adopt a single payer system, we will have no options. To me, that is frightening and unacceptable.

My youngest son has the bone disease hypophosphatasia which is very rare. He is one of my special needs kids I talk about. I have another son, whose picture is in a previous post, who has Asperger's syndrome, a high functioning form of autism. I have networked with many families whose children, and other family members, have this same bone disease. Two stories come to mind when I think of health care reform. One is of a woman in Canada. She has health care through the government there. The first time I ever spoke to her was when she was seeking options for treatment. She was in pain and wheelchair bound. She explained how she waited months to see an orthopedist and even more months for surgery. I seriously thought she was exaggerating. How could a government system do this? It wasn’t until I became a contact for a support group that I heard more stories that were similar. One was from a mom in England whose son was born with the same bone disease. He had serious ribcage deformities and yet the doctors there denied the treatment he needed. She never got a clear answer, but she believed it was because of their rationed health care system. She flew at her own expense to the United States to see a specialist in Missouri so that her son could get the proper treatment that England could not, or would not, provide. Is this what we want in the United States?

As you may be aware from reading my blog, I recently visited family in Ohio. My father’s mother, who is 90, had been diagnosed with cancer just before I came to visit so I made sure I saw her while I was there. This woman is remarkable. Very savvy and sharp as a tack, she has had many surgeries. Each time in recent years she has had a surgery, I have wondered how much more this woman can deal with and still go on. And yet, she seems unphased by it all and comes out shining. She has had a graft in her carotid artery, quadruple bypass surgery, vascular stenting, and recently had hip replacement surgery. When she was initially diagnosed with lung cancer, many tests were run and it was found it had spread to her bones. She had developed a defect in her femur (thigh bone) that was causing a great deal of pain and keeping her from walking. She was told she only had a few months to live and would be bedridden. Not happy with this, she started asking questions and asking them how to fix it. The doctors said if she were younger or healthier, they would put a metal rod in her femur, but they weren’t sure how she would handle that kind of surgery now. She opted to take the risk and the family agreed to grant her wishes and advised the doctors to proceed. The doctors took wonderful care of her and just 5 days ago, she had the surgery. She is now up and around! What a woman.

Do you think the government would have even given her the option of that surgery under a single payer system? Would she have been considered a “productive” member of society? She is a productive member to me, and to my family. She has children, grandchildren, and great-grandchildren who love her very much. She has a great quality of life because she had the choice to live just a few months longer and be able to walk while she’s doing it. WHO other than the patient and their family should have the right to decide this? No one as far as I’m concerned.

I am as certain about this as I have ever been about anything – the system they are proposing now is not the answer. Our current health care system is not perfect by a long shot, but a single payer, government run health care system is not the answer. Do you really want the same guys who run the post office (think long lines), who erased the original footage of the moon walk (one of the greatest photographic moments), and whose current Medicare system is fraught with abuse and deeply in debt, running the system that could possibly save your life or your family member’s life? After reading this, please, please take the time to follow this link: “An Inconvenient Truth About The “Death Panel.” The future of our lives depends on it.