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Tuesday, April 22, 2014

Miner's Canary

When I get to a mirror I see my yellow face and blood shot eyes staring back at me, looking frightened. I go back to bed and sleep another two hours.

The doctor said these new medications were safe, minor side effects, perhaps some rash or slight headache. I took a leap of faith and agreed to go down the mine.

People with bleeding disorders are like the canaries miners used. The canaries were crude measurement of the air quality. If toxic gasses leaked into the air in the mine, the canaries died, but the miners might still have time to get out of the mine alive.

People with bleeding disorders who regularly use blood products to survive are like those canaries. We were among the first to die of HIV in the 1980’s. We were also among the first to contract Hepatitis C. So when I learned that I had Hepatitis C, I was not surprised.

As I learned more about this slow-moving deadly virus, I decided to try the self-injected pegylated interferon and Ribavirin pills. The results were devastating and I came closer to dying than I had ever been before. That was twelve years ago.

Late in 2013 I learned there was a new drug available for Hepatitis C, a second had been approved by the FDA; it was due to be released in a few days, and yet another was in the final stages of testing and would most likely be available in about a year. I could use the two pills by themselves, without need of interferon or Ribavirin.

By mid March, I was taking the new pills, Sovaldi and Olysio. By the first week of April, I had experienced the known side effects. The doctor had advised large doses of antihistamines.

A few days later I received a frantic call from the hematologist. “The lab results show your other clotting factors are abnormal and your bilirubin is elevated.” Since I was only half awake, I couldn’t make sense of what he was saying. I went back to sleep.

“Are you jaundiced?” the doctor asked.

“Yes,” I answered.

I managed to stay awake long enough to get a liver ultrasound and more lab tests drawn. So, now at the bottom of my birdcage, the doctor’s email message reads, “Stop taking the Sovaldi and Olysio.” Then he adds, “"This has never happened before.... I am so sorry... Another medication may get released by the FDA in October, we can try that one next.”

I’m not so sure I have the courage to go into the mine again. I'm using my time singing my song.

“A bird doesn't sing because it has an answer, it sings because it has a song.”
Maya Angelou

Thursday, March 13, 2014


“You really need to get a port,” the hematologist said. He kept up this mantra for more than twenty years.

My veins have always been small, the best ones seem to automatically retract or dodge away from an oncoming needle. By the time I was twelve years old I had three scars where a doctor had cut the skin to get an IV line started. Some times it took a few tries but they always succeeded eventually.

By the time I was an adult the IV nurses who knew me best wouldn’t come near me until I had soaked both arms in hot moist towels to plump up the veins. The nurse would choose a child-sized butterfly needle and take a deep breath. I tried all the tricks I knew for my part of this drama. I drank several glasses of water to hydrate. I meditated and relaxed. I wouldn’t let them try to stick me until the blood products were hung beside me, just in case it took several tries. I didn’t want too many pinholes oozing all at once if the first few attempts to start the IV failed.

When I had a hemorrhagic stroke in 2002, I awoke to find that they had inserted a line into my femoral vein. The doctor increased his nagging, “You need a port.”

“Not yet,” I said, “Not yet.”

I couldn’t quite explain why I kept putting it off. I knew there was a risk of infection, ports could get clogged and have to be replaced on a regular basis. I new it was surgery and my automatic response to surgery had always been, no. I knew once I made the decision, there would be no going back. Unlike people who have a port for chemotherapy, I would have one for the rest of my life.

Nurses said, “You’ll love it.”

“Doubtful,” I thought. I guessed that the nurse might love it, but I couldn't imagine that I would.

“You’ll wonder why you didn’t do it earlier.”

“Probably, I won’t,” I said.

I held them off until I was 64. By that time the only veins that could be felt or seen were on my hands and they were dotted with scars from previous use.

“Ok,” I said after one day there were four failed attempts and the one that succeeded was on the base of my thumb. “Ok, I’ll have a port put in.”

I almost reconsidered when the surgeon explained that he was going to cut my jugular vein and run the plastic tubing to just above my breast where the port would be implanted. Then the line would continue downward just above my lung.

It took a few weeks for the scars to heal, but once it was in they could easily test my clotting levels and give me additional fibrinogen.

Now there is a round bulge about the size of a quarter just under the surface of my skin. I can also feel the plastic tubing that runs from my neck to the port. It is a foreign object and I do not love it. Nor do I wish I had done it earlier. The nurses don’t shudder when they see me walk in the door. But, it only takes one skin stab to start the infusion or draw a blood sample and I have to admit there are some benefits to having a pop-top.