PICCs, Pleurisy, and Patience

Alright, we're finally getting around to a much overdue post.

The beginning of our adventures in DC...

Jan 16 - Travel Day

It went far better than we expected! God's provision for us was so evident throughout that day. I wasn't in much pain (hoorah!), which made sitting on a plane SO much more bearable. All of the United staff were so helpful and accommodating with checking my wheelchair at the gate, allowing us to board early, etc.

PICC

Jan 19 - PICC placement and trial IV antibiotic

pre PICC:

My PICC placement appointment ended up being delayed 3 hours due to an emergency with another patient. Thankfully, the gurney I was on was pretty comfy, as far as gurneys go, and I was able to sleep some as we waited.

The actual procedure itself was quick: ultrasound to locate the basilic vein, lidocaine shot, some pinching and pressure, X-ray to verify correct placement, and there you go, you now have a PICC line. We named my PICC Petrova, after my favorite character in the book Ballet Shoes.

post PICC:

Because of the 3 hour delay, my procedure wasn't even underway until 1 in the afternoon: the time of my appointment at Dr. J's clinic! As we left the hospital, I was not in a very serene state. Despite my fretting and tears about missing my appointment and that all hope was lost, the staff was great about fitting me in as soon as we could get there.

The appointment went well. No adverse reaction to the first antibiotic infusion. Spencer learned the ropes of starting IVs. He's a pro now.

I saw Dr. J and, as always, he was great with answering our questions and explaining my treatment plan. The IV drug for round 1 was mostly active against the Lyme bacteria, to keep things simple and see how I do on IV. Future rounds would include several IV drugs and be aimed at co-infections.

He again shared his concern about how fragile I am and how good it was for us to be able to to stay in the area for a while and not having me travel back and forth. Because of our late arrival, there wasn't enough time for Spencer to learn how to do a dressing change so we set up a time to come back the following week.

Pleurisy...

Jan 20

The following afternoon, I began having pain in the left side of my chest. at first I figured it was just my *typical* chest pain, a near daily symptom of varying intensities. But it was different somehow. sharper, deeper. Maybe it was just irritation from the PICC insertion the day prior. I noticed that it worsened with taking a breath and the more I sat up, the less it hurt. So I wasn't worried about it being cardiac related. I was just annoyed and wished it would stop.

It continued to worsen into the evening and we began to debate whether it was just a particularly intense *normal* Lyme symptom or something more serious. It got bad enough that we called Dr. J's answering service. He called us back promptly and talked with Spencer about my symptoms. He agreed that it wasn't cardiac related and that it sounded like pleurisy (inflammation of the plura, the lining of the lungs). Caused by die-off from the previous day's dose of IV antibiotics. He gave us directions on what meds to increase and said to call if it continued to worsen.

It did continue to worsen over the next few days. spreading to the right side of my chest and wrapping around to my back. Moving, coughing, breathing, was miserable. We got more tips from the IV nurse about trying ibuprofen and benadryl to reduce inflammation and I infused a couple bags of lactated ringers to help flush out toxins released from the dying bacteria. That helped some. If only one dose could produce such pain, I was a bit apprehensive about what 2 weeks worth would do.

Jan 25 - Day 1 of first IV cycle

During our appointment for Spencer to learn how to do a dressing change, Dr. J popped in to check on me. He heard some crackling in the base of my right lung, meaning there was fluid in there. He prescribed toradol, a heavy duty anti-inflammatory med to help reduce inflammation (and pain!!) from the die-off and to prevent any more fluid buildup.

Toradol definitely did the trick. I could only take 5 days worth, and the pain got worse after stopping, but it thankfully subsided during the second week of treatment. I've continued to struggle with it off and on, but it has been nowhere near how painful it was that first week. I don't know why, but it really creeps me out to think of Lyme bacteria hanging out in the pleural space of my lungs. Sure, it's in my brain, joints, etc, but my lungs? Eww.

Patience
The whole pleurisy ordeal was a huge test in patience for me. I struggle so much with  being patient, especially when there are so many unknowns. Hence the blog title "wait quietly." That's what I want to do - wait quietly, patiently, trustingly. Oh how I struggle with this!

I was in so much pain, scared, and frustrated with how my body was behaving. "Why do I have to have such a ridiculous, miserable complication within the first week of starting IV treatment??"  I was a mess. Spencer was very concerned about me, but he trusted God to take care of us. He is one of the most patient, steadfast people I know. I am so thankful for the example he sets for me and how he lovingly challenges me to put my hope and trust in the Lord. to wait quietly.

Trust in the LORD with all your heart,
and do not lean on your own understanding. Proverbs 3:5

God is our refuge and strength,
a very help in trouble.
Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
though its waters roar and foam,
though the mountains tremble at its swelling. Psalm 46:1-3

We'll try to keep posting with more details about the past month. We're both very worn out and neither of us have the physical or mental energy to write much. Hence being a month behind in posting :)

Cycle 1 with IV Merrem was tough, but I got through it. Spencer was so wonderful at taking care of me. I completed cycle 2 on Friday. I was on 2 IV antibiotcis - Merrem and Clindamycin. At the end of the second week, Mepron & Flagyl were added. Oh, what a rough time I had with those! I had really awful days with bizarre symptoms popping up, but also had a couple "okay" and even "good" days. Hooray! My appetite has improved since beginning IV as my poor stomach is no longer tormented by oral abx. Such a blessing.

Spencer is really struggling with poor, fitful sleep. Between that and being busy caring for me, and being sick himself, he is really fatigued. Please pray that his sleep would improve so that his body can better heal as he continues treatment. He will begin his next round of oral abx a week from Monday. He'll be on Levaquin, Omnicef, and Mycobutin.

We thank you for your prayers, encouraging emails, phone calls, cards, and even help with treatment costs - we are so encouraged, humbled, and blessed by your support! Please continue praying, especially that we would trust in the Lord and not lose heart on those really rough days.