My Obamacare story does not involve me, directly. It involves my granddaughter. My daughter could tell this story so much better, but I will give it a try. To protect our family's privacty our granddaughter's real name is not used. I've decided to call her Daisy.
Nearly 10 years ago our older daughter discovered that she was pregnant. She was excited. It would be her first child by her husband, and her older daughter would have a baby brother or sister, something she had always wanted.
Very careful about everything, the pregnancy was attended by a mid-wife and my daughter gave up caffeine, alcohol, ate “right” (she is a vegetarian) and waited for the big event.The delivery went without a hitch and we had a new granddaughter. Daisy didn’t gain weight in the first few weeks and the mid-wife urged our daughter and son-in-law to see a Pediatrician. She was examined, a careful history was taken, blood tests were drawn and everyone went home.
We got an hysterical phone call from our daughter. Something about, “her kidneys aren’t working.” Following a great deal of work-up it was determined that Daisy had hypoplastic/dysplastic kidneys. The kidneys were not only small, the plumbing inside wasn’t hooked up right.The immediate post diagnosis period was one of shock, disbelief, and all of the stages of grief outlined by Elisabeth Kübler-Ross: Denial, Anger, Bargaining, Depression and Acceptance. At times there is still anger and I don’t think depression has ever completely gone away.Genetic counselors advised them that they had done nothing wrong. This was just a fluke. Perhaps, the baby had been exposed to a virus during a critical period in gestation.
For several months Daisy was maintained on a strict diet, had a gastric tube placed to feed her because the diet was not very palatable and people with renal failure don’t taste things normally.
At about 8 months Daisy was in the hospital and caught parainfluenza virus. She ended up in I.C.U. on an airway, sedated and paralyzed for 3 weeks. When she recovered what little kidney function she had had was gone. She then went on peritoneal dialysis. A tube went into her abdominal cavity and every night fluids washed into and out of her abdomen taking the toxins away. The machine that did this was suitcase sized and the fluids came in large cartons that filled the bedroom. Going anywhere overnight was nearly impossible. Our daughter became, essentially, a full time nurse.
Our daughter and her husband were massage therapists in a suburb of Seattle, Washington. That is they were until Boeing moved its headquarters to Chicago, and much of its production facilities offshore. The plant in their little town suddenly had thousands of unemployed machinists and food and shelter became more important than a massage to most clients.
So, our daughter and her husband went on public assistance when the baby came and her care was provided by Medicaid since they had no private insurance.
No one asked our son-in-law whether he had a daughter with a pre-existing condition when he applied for a job because he was looking for construction work and the rest of the people in the application line were unemployed machinists. The family left Washington and moved to Arizona in search of work.
A little work was found but not enough to pay the bills at first. At age three (she was actually in pediatric intensive care when she had her third birthday) Daisy received a kidney transplant from a 22 year old auto accident victim who had had the generosity and forethought to make herself an organ donor. The post-operative period was stormy. Not due to the surgery, but because a full out assault on our granddaughter’s immune system had to be launched in order to prevent her from rejecting the kidney.
Immunosuppression is a walk on a tightrope. Too much suppression and a person falls victim to an overwhelming infection. Not enough and the organ is rejected.
Our little granddaughter was in the hospital for seven weeks. The transplantation was a success, immediate immunosuppression worked, and she was placed on long term (lifetime) immunosuppression.
Our son-in-law found a job working at a copper mine in Arizona. The job came with health insurance. And then the economy collapsed. The chief use of copper is to make electric wires and most of that was going into new home construction. He was let go, the mine closed, and it was back to Medicaid. The bind then became one of staying impoverished so that the Medicaid funding was not stopped. If that happened Daisy would be uninsurable because she would have a period without insurance at the same time that the family could not make enough money to afford private health insurance. The economy, being what it is, did not afford jobs that provided full coverage health insurance.
Then along came Arizona's conservative legislature and Governor Jan Brewer who launched a full out war on Medicaid recipients. Patients waiting for organ transplants were basically told to go home and die. The situation became so threatening that the family moved to Oregon, a state that grants Medicaid insurance to the needy and a graduated program for working from Medicaid to full private insurance as incomes increase.
This had barely been accomplished when Daisy had a full blown attempt to reject her kidney. More hospitalization followed with intensive i.v. treatment of drugs and blood products and she is now home. She is home, but still in danger of losing the kidney through chronic rejection.
Ironically, if Daisy went back onto dialysis she would be covered by Medicare due to a loop hole inserted during the initial institution of Medicare. Her life, however, would be much diminished. Because transplantation was not an option at the time that Medicare came into being it is not included in Medicare coverage. This is unfortunate because, while it costs about $80,000 a year for dialysis, the cost of immunosuppression is only about $20,000.
There is still a 10% unemployment rate in Oregon. Job applications warn not to apply if you don’t currently have a job.
The Affordable Health Care Act would have helped. Our granddaughter could not be refused insurance due to a pre-existing condition. There are other provisions in the bill that would also have been helpful.
Through all of this our daughter went back to school and has maintained a 4.00 average. She should graduate at the end of the year. Then it is on to graduate school provided that she is accepted.The granddaughter will be 9 next month. Anger and depression have once again set in. It is like the whole family is drowning and there is no way to the surface to get a breath.