The R word revisited

As I was browsing social media, I saw a blog written by an American doctor who had to take a cousin to a National Health Service (NHS) in Britain (https://drjengunter.wordpress.com/2016/08/20/an-american-doctor-experiences-the-nhs-again/). She reports that he cousin's ankle injury was evaluated and treated in 4 hours. There was no copay. The patient only had to give her name and birthdate. Overall, the report is positive about the NHS.

A friend was visiting Germany, when her daughter had a minor eye injury. Within about 4 hours, on a weekend, the child was seen and evaluated by a the emergency physician, who called a pediatric ophthalmologist. A few years later, the same child had a head injury on a trip to Austria. Again, positive experiences with minimal if any copays.

Yet, here in the US, I just mailed billing sheets for my son's treatment. Again. They had to be revised, since the insurance company wanted things written up differently. And, I know that, since I haven't yet made the yearly deductible, I won't be reimbursed for his treatment by an "out of network" physician. As I was preparing to send these bills in, I noticed that the yearly "maximum out of pocket" has again increased, now to $25,000 for the family.

Earlier this month, I had a $2,000 copay for a minor surgery, which was collected in advance. If I hadn't been able to pay, the surgery would have been delayed or cancelled. Earlier this year, I had to pay a similar amount for a PET-CT.

I'm fortunate, in that I am again in good health, and able to return to work. I also had adequate savings, but, these kind of charges are a challenge for many people, even middle class people with insurance. As a result, care may be delayed. Sometimes, the problem will resolve as people work to come up with the estimated copays. Sometimes, it will get worse. As physicians, we work to sift out those who will resolve, and not subject them to expensive procedures. Often we are right. But, not always. And, so sometimes the problem worsens.

In July, we had a patient scheduled for a surgery for what was thought to be a slow growing cancer. She had some delay due to the preapproval process. By the time of surgery, only a few days after I had met her, another scan showed a marked increase in the size of her tumor. Hence, the plan for treatment had to be changed significantly.

These copays and "maximum out of pocket" expenses are a major limit in health care. It is a reason that many diseases are not treated until late in their course. The Affordable Care Act has helped millions, but the problem is not solved. The egress of insurance companies is not because the ACA is failing, but rather because they want more profits (http://www.marketwatch.com/story/aetna-obamacare-and-health-insurers-10-dirty-secrets-2016-08-19?mod=mw_share_facebook).

We still have a system that is flawed. It still makes it difficult for many to get needed care. And bankrupts many who try to pay. But, it is better that what it was, even if more changes are needed.

Saved by love

About a decade ago, I started on the process to adopt two children. I had always wanted to be a mother. After two years of paperwork, I finally became a mother. Once my two came home with me, the older one kept trying to persuade me to go back and get more kids. He told me how lucky he and his sister were to have been adopted. It was a nearly daily plea.

I learned of the likely fates for children who age out of care. Far too often they end up in prostitution or drug running or enslavement. Without a family to protect them, and limited skills, they have few other options. 

I looked into starting the process again, but roadblocks kept being erected. The country my two came from, Kyrgyzstan, was closed for several years while a new government worked on rewriting the process. I looked into other countries. But, between political issues in several countries, and my work, it never came to pass. So I just have my two.

Then, another roadblock: cancer. Due to my age, this diagnosis essentially made it impossible to consider adoption again. 

After my hemicolectomy, I had very poorly controlled pain. To the point, I almost felt that I couldn't go on. I remember wanting to die. But, then, I would think of my kids, and the responsibility I had taken on of raising them to adulthood, and I knew I had to go on. I knew I had to get through this.

Last week, in a conversation with my son's therapist, I expressed my gratitude for being saved by my children's love. It kept me going in my roughest time. 

Family is especially important for patients. Not just in the physical sense of transportation to appointments, but, even when they are not physically with the patient, knowing that they want to love and support the patient. I certainly got that from my children. Without them, I think I might have simply given up.

Graduation Day

Last week, I had a graduation of sorts. I had my chemo port removed. It hasn't been used for anything but blood draws for over two years. So, after being free of cancer for over 3 years, it was time to remove the port. My oncologist kept suggesting it. But, I kept dragging my feet, worried that it would need to be replaced.

About three months ago, I was rounding with residents and medical students. One asked about using a ventriculoatrial (from the ventricle of the brain to the atrium of the heart) shunt in a patient on our service. She had hydrocephalus with a history of shunt infections, so would not be a good candidate for a ventriculoatrial shunt due to the complications of renal failure or sudden death which may occur in the setting of shunt infection. A ventriculopleural (from the ventricle to the space around the lung) handles infection the best. Ventriculoperitoneal (from the ventricle to the abdomen) shunts are the most common type for managing hydrocephalus.

And, as we were walking down the hallway to the clinic discussing the risks, it hit me. I was living with a catheter in contact with my blood stream, like the distal catheter of a ventriculoatrial shunt. And, mine was violated to draw blood and flush it every 2 months, increasing the risk of infection. So, here I was, choosing to live with a catheter that had features in common with something I thought was too risky for my patient.

The next time I saw my oncologist, I told him that it did seem to be time to remove my port since it no longer seemed necessary. He put in the referral. And, this past week, I had the surgery. The pain has been minimal. I just notice when clothing rubs on the newly opened wound, or I move my arm a certain way. But, I feel that it is closing the chapter on this phase of my life.

Cancer will always remain part of my past medical history. I will need to have regular follow ups and imaging studies. But, it doesn't rule my life. Unfortunately, my patient will never be able to eliminate her device. She must live forever with a shunt. But, recently, she, too, had a turn for the best. Her spinal fluid was cleared of infection, a permanent shunt was again placed and she was discharged from the hospital.

So, we both have "graduated" from our recent problems. And, we are able to live more normally again.