The journey is, and continues to be, challenging. Yesterday I had another platelet transfusion. Luckily this one involved just a few hives during the transfusion and a fever last night.
Once the allopathic doctors help to install in you the fear of death, it is hard to know what to do. Technically, I am supposed to go to the hospital every time my temperature hits 102. But when I went to the hospital for a few days last weekend because my temperature spiked at 104.6, I realized that it often takes me more days to recover from the hospital than it does from whatever else is going on.
Many people have suggested that I learn how to release judgement and anger. This is clearly good advice for most of humanity and I am certainly working on it. But somebody please tell me, how one does not get upset at the following scenario:
I go to the hosipital in the morning (last week) for a platelet transfusion. Predictably I have the "what are you allergic to?" question part of the interview. I give them the list of drugs. I have a terrible reaction to the transfusion and say 4 hours later end up in ER filling out the EXACT same questionaire as I did 4 hours earlier. Again, I list the medications. They decide to admit me. Say another 2 hours later, they try to hook me up to one of the drugs I'm allergic to! Now it should be on my record, right? And I know for certain that it's on the form that I already had to fill out TWICE that day. What would have happened if I weren't paying attention?
So I find myself upset at those events, amongst other experiences that our fine medical establishment subjects the masses to. I exhale the judgement, the anger. Yet somehow I'm still upset. I'm terribly upset that this is the state of our health care system. I'm terribly upset for all the people who aren't paying attention and are trusting the system to take care of them. I know that the people (ie the nurses, doctors, etc) are doing the best that they can under an overwhelmingly ineffective healthcare system and a bureaucratic nightmare.
My nurse Mary, who gave the platelet transfusion gone bad, said that she had a client in the colonscopy department who had gotten some kind of GI problem in Mexico City. The client had gone to the hospital there. When the client returned home, he had a CD with all of the images taken in Mexico and pertinent information. Nurse Mary said "we can't provide our clients with that kind of service." In short, Mexico City has better healthcare than here.
When they say, Healthcare Reform....boy, we should listen.
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Dear Karen
ReplyDeleteI am reading your blog with interest because I am a member of the Iyengar community and I am also the wife of a cancer patient. This particular posting about Healthcare Reform reflects my own experience in the healthcare system.
There are so many intelligent, caring, and concerned doctors, nurses, physician assistants, etc. but unfortunately the current system must be approached with a healthy skepticism about each interaction that occurs, from diagnosis to treatment to prognosis. Each patient needs an alert witness who is not afraid to gently remind the healthcare provider about the allergies, the recent medications and procedures. Your witness must not be afraid to question what is happening in the moment.
I worry about those who don't have this witness. I sometimes see them in the waiting rooms, so bravely trying to cope with all the layers of people and technologies.
I hope you have at least one trusted person who knows you well, is willing to study and discuss your diagnosis with you, and is available to go to your appointments with you. If one person is not available, perhaps a team of friends and family can be formed to support you. Lastly, there are medical social workers and hospital chaplains who specialize in helping patients with serious illnesses.
In our househld, the arrival of a life threatening disease has been devastating and confusing. However, it has also inspired us to strike a balance between science and art, between statistics and hope.
Listen to the positive stories of remission. Adopt what you can from their stories of survival. Practice being fully present in each moment. Shamatha (calm abiding) meditation is an important skill in the hospital for both the patient and the caregiver/witness.