Month One: PICC Line Insertion, Getting Test Dosed at Dr. Jemsek’s

Putting in the PICC Line

Tuesday, October 30, 2013

How cool is it to have a friend who offers to have you live with them so they can run your antibiotics in their home, change your PICC line dressings and assess you for the next 8 months. Talk about selflessness!!  Meet my friend Betsy who is a nurse and a homemaker, which allows her to be able to run the medicine and be here to make sure I don’t have a strong reaction to any of them.

My appointment to get my PICC line in was scheduled for October 29th, at 2 pm at George Washington Hospital, Washington DC.  So, on the evening of October 28th, I trekked over to Betsy’s house to get settled in for my 8 month stent.

In the morning I was laying in bed listening to Joe Focht talk about the book of Isaiah. In the middle of the talk, he said, “When you don’t know what God is doing, you still know who He is.”  I thought, “Wow!! How profound and how perfect for one starting on an 8-month journey of IV antibiotics to fight Lyme and its coinfections.” How perfect for all of us as we each fight our battles during various points of this walk called life!

Betsy and I arrived at our hotel in Georgetown around noon, dropped off our bags and headed over to the hospital. Since I had had a PICC line in in the past, I was pretty calm this time knowing it looked a lot worse than how it actually felt. The nurse who did the procedure was quite sweet and assured me she had done thousands of these.

She assessed the blood flow in my veins, scrubbed up, covered me with some sort of light blue paper, and injected a very painful needle into me that apparently had numbing medicine in it. I watched the ultra sound machine as the nurse figured out if the line was going into the vein correctly.

After she finished inserting the line, I noticed an intense pain running from my elbow down to my finger tips accompanied by stabbing and tingling. The nurse told me to squeeze my fingers and it would go away. I kept squeezing but the darn pain would not leave.  Finally, the nurse told me that the pain would probably stay there until the line was removed at the end of treatment. I looked at her stunned thinking, “OK, Lord, I really don’t think I can accept that.  I need a miracle here. This isn’t just a tiny pain. This is a big pain!”

After we left, I made a quick phone call to the IV nurse manager at Jemsek’s office letting her know that this was not what I had signed up for. She encouraged me by saying that they’ve had this happen before and it usually goes away within two weeks. She told me to try not to think about it and they’d look it over in the morning when I arrived for my appointment. I shot an email to some loyal friends and prayer warriors, letting them know the situation, and when I woke up, the pain was completely gone!  Not just a little gone but completely gone!
 

First IV Test Dose at Dr. Jemsek’s

Wednesday, October 31, 2013

P1020547-001My PA Kim Fogarty doing an assessment while I am test dosed with IV Merem

The way things work at Dr. Jemsek’s is he runs one dose of the IV antibiotic in his office to make sure you do not have any sort of allergic reaction. If you have a trained professional who commits to running your IV and changing your line, you can go home with IV bags in hand so you can have it administered in the convenience of your house.  Given that none of these treatments are paid for by insurance, one cannot have it infused in a doctor’s office, hospital or by home care nursing.  Fortunate for me that I have a friend who has years of experience as a nurse, is married, not working and also has a soft heart.

We arrived for my appointment greeted by a nurse Rita. Rita did an assessment, started running the antibiotic and trained Betsy while it was running.  She explained that I would be receiving IV Merrem, a broad spectrum antibiotic that targets the extra-cellular spaces allowing it to kill the corkscrew form of Lyme. Within a half hour of the run, I could feel pounding in my head.  I asked Rita if this was ok but she said it just meant that I obviously had something up there that was being killed. Next I felt a stabbing pain at the base of my skull. Then I felt it down my neck and into my spine. Next it was over and under my ear.  Rita tells me that I need to be prepared to experience discomfort, for this means there is Lyme in my system, and it means it is getting killed.  I stayed calm coaxing myself that it gets worse before it gets better, and I need to stay the course no matter what the next 8 months bring in terms of symptoms.  I thought about what CS Lewis says, ‘God whispers in our pleasures but shouts in our pain, “I am here and I am good.’”

In “The Lion, the Witch and the Wardrobe,” Mr. Beaver tells Edmund, Lucy, Peter and Susan that they are about to meet Aslan, the Lion. Susan says to him, “Is he safe?” Mr. Beaver says to him, “Safe? Who said anything about safe? ‘Course He isn’t safe. But He is good.” Unfortunately, it seems I am learning what CS Lewis means by this statement.

After we finished at Dr. Jemsek’s office, Betsy drove us home so I could rest.  The stabbing pain in the base of my skull, neck and spine was still there when I woke up. I emailed Jemsek’s office just to make sure again that this was ok and asking if slowing down the infusion rate when I started on Monday might keep the pain more manageable. For this Monday will be the start of my first dose at home, and instead of having it run just once as had been done in the office, I was going to need to have it run twice that day. The schedule will be twice a day Monday, Wednesday and Friday, three weeks on and one week off, with lactated ringers run on the off days.
 
I received an email back from Rita saying, “Slowing the infusion down, might help keep it from happening immediately, but unfortunately, probably will not prevent it. We want to stay ahead of that pain. I want you to take Lyrica, as it helps with nerve pain.”

Unfortunately, the Lyrica has not helped yet as the pain seems to be stronger than when I left the office.   Monday is right around the corner, and I need to just stay the course pushing through the pain and trusting that although my God might not seem safe, He is good.  Honestly, it just plain stinks that He can’t just teach me this in a more benign way. But He is God, and I am not.

One thought on “Month One: PICC Line Insertion, Getting Test Dosed at Dr. Jemsek’s

  1. Karen,
    I didn’t have insurance either… but my experience was so different than yours. I had a home health nurse come once and show me everything and then the medicine IV bags came via Fed Ex and I administered them myself. I never had any pain! Makes me wonder if I ever even had Lyme! All my best to you as you stay the course, I am so sorry for your pain, this isn’t very spiritual but pain just stinks! p.s. Lyrica didn’t help me either ( for my other condition). I am still reading Joni Earackson Tada’s book… taking it slow. 🙂

    Like

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