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Thursday, March 13, 2014

Pop-Top

“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.

Thursday, November 7, 2013

Where Did I Go Wrong?

Tuesday morning I telephoned the doctor. I’d stayed awake most of the night wondering what I could have done that would cause my right shoulder to hurt. I certainly did not want to get an infusion of clotting factor, we had been enjoying a month at the beach and we had been there less than a week. I wasn’t actually sure I had a bleed in my shoulder joint. “It might just be arthritic pain from an old injury,” I said to the answering machine and asked the doctor to decide if I should get an infusion. The recorded message promised that a nurse would get back to me soon.

It had been years since pain in this shoulder had kept me awake. The first time I had an x-ray that showed previous injuries, joint damage, but not active bleeding. I went to a physical therapist and the pain eventually subsided although it came back whenever I didn’t keep the exercises up. I had no memory of a bleed in that shoulder, but the x-ray was proof.

The older I get the more previous injuries become painful. I feel ashamed that I can’t tell the difference each time a doctor says, “Why didn’t you call me sooner?” The implication is that I was in denial. That is probably at least partly true. However, I have also had false alarms and then the doctor’s scornful reproach implies hypochondria.

The next time I had pain in that shoulder was when we moved to Florida six years ago. That time I tried to return to the exercises but the pain got worse by the day. I had been packing and hefting books for our move to Florida. Motivated to meet the deadline for packing I suppressed my doubts until the pain became so intense I had no choice but to go to the Emergency Room and get infused. The doctor told me to rest the shoulder and wrote a prescription for a narcotic pain medication. Resting was not an option. The movers were coming in a day or two and we would be loading the car and driving south to Florida from Massachusetts whether my arm had healed or not.

We arrived in Tallahassee a few days before the moving van and settled the cat in our new house before the three of us checked into a motel. The next few days we spent shopping for essentials and delivering them to the house. We made frequent trips to the house to feed and reassure the cat. My arms loaded with supplies I missed a step and landed on the paved walkway to our new front door. Not only did I smash my glasses, bruising my face, I hit my right knee and landed on my shoulder, the same shoulder that had been injured packing books. That time it took several re-infusions of fibrinogen to subside and the doctor instructed me not to lift anything over five pounds.

So after calling the doctor’s office on Tuesday morning I waited, and waited, and waited. No return call as promised. Wednesday morning I called again and this time I was more sure of myself. The pain was worse. “Oh, I’m so sorry,” apologized the nurse. “I’ll schedule the infusion for this afternoon, can you get here by 2 pm?”



Sometimes I lie awake at night, and I ask, "Where have I gone wrong?" Then a voice says to me, "This is going to take more than one night."

—Charles M. Schulz