Wednesday, June 17, 2009

Phase II: Sometimes you gotta be piccy

Lynette has entered the next stage of her treatment. Beverly, Lynette, Anna and myself started the day with a trip to Lake Norman Regional Medical Center in Mooresville, NC. Standard outpatient experience. Not that different from getting an MRI. Sit in a waiting room. Answer some questions. Walk through a maze of hallways. Sit in another waiting room. A smiling person in scrubs comes through the door and whisks you away. 20 minutes later, back with a a pink bandage on your arm, smile on your face, and a sucker in your mouth. And then you're ready to go.

To refresh your memory PICC stands for Peripherally Inserted Central Catheter. A tube is inserted into the inside of your upper arm and threaded through a vein until it reaches the heart. The location of the end of the tube is verified using ultrasound.

From there we drove down to Fort Mill, SC to Jemsek Specialty Clinic(JSC). Anna came with us so that she could meet my sister Shannon at JSC and head to Lexington, SC for a week and hang out with cousin Madeleine.

Inside the doctors office, the nurse Angie trained us on changing the dressing on the picc line and administering the antibiotics. Obviously there is a major emphasis keeping things sterile. Angie changed the dressing while explaining what she was doing. This was the part where sterilization was so critical since the entry point is exposed. It did not look like an easy task. Lots of adhesive patches and latex gloves and the normal battles that ensue between them. The site was cleaned with a sterilizer. Next a clamp on the back of an adhesive patch was affixed to Lynette's arm to hold the line in place. Then a foam donut was placed around the line at the entry point. Then another adhesive patch with a large non-adhesive bubble in the center was placed over everything that had been put in place thus far. Finally the patch was sealed down on the edges with additional adhesive.

I got to practice putting on sterile gloves. It was much harder than I ever would have imagined. It's very easy to contaminate your gloves if you aren't used to it. I think Angie barked at me a bout 3 times before she gave up. Part of my trouble was that the gloves were mediums. Having some gloves that actually fit will definitely work to my advantage.

Shannon will bring Anna back to JSC on Tuesday. Anna has her appointment that day. JSC was more than willing to find some time in their schedule to see Lynette again on Tuesday. It will then be my turn to change Lynette's dressing under Angie's watchful eye. It should be interesting. The dressing needs to be changed weekly so I'll need to prove my meddle.

Next Angie explained the infusion process to us. Beverly was there so that she could be my backup if we need her. There were lengths of tubing and stacks of alcohol swabs, connectors to be sterilized, caps to be unscrewed, lines to be flushed, stabbing of bags, mixing and milking, clamping, attaching and unclamping lines. Angie's point was to tell us what to do but not actually do it herself. She had me do the infusion. The biggest problem I had with this was remembering that the tube was connected to Lynette. The actual administration of the medicine took about 30 minutes. The actual infusion of the antibiotics was preceded by a saline flush and followed with a saline flush and a flush with heparin, an anti-coagulant.

This infusion procedure will take a few rounds to get used to it, but it will become easier with repetition. It was hard enough for me to hold something in each hand while one of these objects needed to be uncapped followed by pressing these two ends together and screwing them tight. Lynette does not have enough dexterity in her right hand to be able to do this herself. She will get infusions in the morning and evening on Mondays, Wednesdays and Fridays.

Dr. Jemsek will give her a week off every few weeks. This will be based on her response to the the medication. Angie and Dr. Jemsek both warned about likely Jarisch-Herxheimer reactions. This is the body's reaction to bacterial toxins that are released as the medicine kills the Lyme and other pathogens. Angie and Dr. J both warned some of Lynette's symptoms would return. We are hoping that it's not too severe. We told him that we would be going on a family vacation to the beach in July and he said he could probably schedule that week as a drug holiday. Angie told us that over the expected 5 months of antibiotic therapy Lynette would likely receive 5 different antibiotics in a phased and sometimes overlapping fashion. Dr. Jemsek compared it to multiple agent chemotherapy treatment. In an interview he quoted one of his patients as saying, "You're doing a dance with this disease, aren't you?"

While we were in the waiting room at JSC a cute and bubbly girl about 15 came in. She too had a picc line in her arm. She took one look at Lynette and said, "HEY BUDDY!" I explained that Lynette had just gotten her picc line and hour or so ago and she responded with "CONGRATULATIONS!" She told Lynette about buying leggings at Target and cutting off the cuff so that she could slip them onto her arm and cover her picc line. She had on a striped one that coordinated well with her outfit. She was very refreshing and quite entertaining.

I can't imagine having this thing hanging out of my arm for 5 months. Lynette is quite willing to make the sacrifice in order to reap the rewards. She continues to have best attitude about all this. She's pretty amazing.

Here's a link to an interview that Dr. Jemsek did. It is long but it is amazing how he approaches treatment of Lyme sufferers. There are many doctors who could learn so much from him.

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