my gratitude

In 2006, I had a deep vein thrombosis (DVT) and pulmonary embolism (PE), which is life-threatening and landed me in an intensive care unit (ICU) for several days while doctors worked to save my life.

Afterwards, I was told I had to be on coumadin, which is rat poison, the rest of my life. I chafed taking rat poison for the rest of my life. My former primary care doc referred me, at my request, to a hematologist. The hematologist ran lots of blood tests, after I had been off coumadin for one month. The tests indicated I should remain on coumadin. I really liked my hematologist. She said my blood test results were right on the line, just barely suggesting I had to stay on coumadin. She suggested whether or not I kept taking coumadin depended on my level of tolerance for risk. She pointed out that I now knew what a DVT felt like and, should I have another one, I would probably -- probably -- identify it and avoid a PE. So I went off coumadin, although I was skittish. Every time I felt a twinge in my left leg, I thought "oh now, another DVT".

Still, I kept off coumadin for a couple years.

This winter, my left leg developed severe pain. I got to the point where I could barely walk from the pain. I reported my symptoms to my primary care doc and she shrugged off the symptoms I reported as fatigue from the flu. I like that primary care doc and trusted her so I shrugged off my fear of another DVT.

A couple weeks later, limping in the dark to an activist organizing meeting near my home, my inner voice whispered "you have another DVT, that's why your leg hurts so much."

I should have gone to an ER righ then but I waited until the next morning, March 17, 2015.

I was hospitalized for my 2006 DVT/Pe on Cinco de Mayo.

My nurse  on St. Patrick's Day, an Irishman with a lovely broque (how I love the Irish broque!) said "you are special, you only have DVT's on national holidays". I pointed out that St. Patrick's day is not a national holiday but I also acknowledged that as I grew up in a very Irish community St. Patrick's day was a major holiday in my clan. It was a nice moment.

Nurses are usually so kind. I much admire people called to work that helps people. I much admire the typical kindness and attentiveness nurses ahve given me. I feel much gratitude for all the nurses who have been kindly attentive to my health needs.

The ER doc, back in March, put me on coumadin and told me to contact my primary care doc within 48 hours. I called to make an appointment on my way home from the hospital. On March 17, 2015, my now-former health care provider told me I could not see a doctor until late April. I cried. I said "Coumadin is an unstable drug, I can't take it without medical supervision unti late April. I need blood tests and dosage adjustments." But the customer service reps ahve no power, only calendars.

So I went to the clinic's lobby and begged for an appointment. At first they told me they could not help me, I just had to wait. I sat down and cried. As i cried, a patient came in to tell the clinic she ad been scheduled to see a nurse practitioner the next day and she didn't want the appointment. Bingo. I got the appointment.

I went on to see that nitwit nurse practitioner a few times. She was clueless about how to monitor coumadin. And weird. She'd come in, talk to me without any advice or resolution of my needs and never return to the exam room. She would order blood tests but never give me the results.

And I continued to have problems getting to see my actual doctor, who also seemed to have no idea how to monitor coumadin. Having been on coumadin for many years, I knew what I needed but I can't order the blood tests, I can't titrate my coumadin dosage.

I fought this negligent system for months.

Then at a routine appointment of my new, Oakland-based endocrinologist, who works under the banner of Stanford Medical Practice. I reasoned taht if Stanford Medical accepted my insruance to see an endocrinologist, I could probably see an internist, a primary care doc, with the same practice. So I asked my endocrinoilogist, she made a referral. I had to wait awhile, six weeks, to see my new primary care doc.

The quality of my health care has, overnight, dramatically improve. This internist actually monitored my coumadin personally, calling me personally once a week. She put in a standing order for my coumadin testing so I could go to a blood lab whenever she asked me to without needing to get a new order.

My coumadin remained unstable.

People had alluded to new meds on the market that replace coumadin and do not require regular blood test monitoring but my old doc never suggested I try this new meds. The nurse practitioner assigned to use her witless skills to monitor my coumadin was useless and certainly did not resarch options for my very real health care needs. That nurse practitioner committed negligent malprctice, imho.

And the clinic was negligent. They ignored my repeated please that my health care needs be properly.

I have not bonded yet with my new doctors. Two visits don't make for the lovely bond I have with my former primary care doc. I really liked her but she failed to see that I am a type one daibetic. I finally figured out the treatment she offered for my diabetes was not meeting my needs and I asked to see an endocrinologist. Otherwise, I'd still be failing to receive proper care.

I used to see an internist at Stanford Medical, but in Palo Alto when I lived in Mountain View. Once I saw that my new endocrinologist worked for Stanford Medical, I knew that clinic would take my insurance. I knew I could switch to a different primary care doc.

I am so grateful that I have been able to make this change, that I now receive, timely, responsive medical supervisioin for my multiple chronic health issues.

When I last saw my former primary care doc, I told her I had a new patient appointment with a new doctor and if she didn't see me again, I wanted her to know I did not leave because of her. I told her I was leaving because of the dysfunctional system offered by her clinic. She said "If you do switch, we'll have to get together for lunch some time." That was touching and meaningful, altho I don't expect her to call and invite me to lunch. She's too overworked to think of me.

After I last saw her, however, I couldn't help but reflect on the few very serious failures of this doctor to recognize my health needs, which lead to her neglecting them. I shouldn't have been the one to figure out I had a new DVT. I shouldn't have been the one to figure out I needed an endocrinologist. And I sure as shit shouldn't have been the one to suspect I am Type One instead of Type Two. I received the wrong care for my diabetes for years, including wrong treatment by my long ago Stanford internist in Palo Alto. Now I know that my type one should be obvious to any doctor that understands diabetes in a cmpetent way. Now I know many primary care docs don't really understand it which is why all diabetics need an endocrinologist, eh?

When I moved from Seattle and saw my primary care doc in Settle for the last time, she cried as she hugged me. She said that in every isit, I had brought something special:  a clever insight, my good humor, my patience. She said she didn't think she had ever cried before when a patient moved away.

You see? I am not hard to get along with if people treat me with respect and don't abuse me.

I am full of gratitude today for my new doctors, my newly competent health care and the professionalism of the Stanford Medical Practice.

I have fleeting fantasies of standing outside my old clinic with flyers informing patients better health care is available to them. I don't do it because I suspect it would be seen as disruptive.  I don't want to rock any boats.

All I wanted was competent, very much need, health care.

And now I have it.

Gratitude gratitude gratitude.

I don't like having multiple chronic health challenges but I am grateful that I am now receiving competent treatment once again.