Much has happened since my last blog post. But yet, not much has moved. Please forgive my absence. And thank you for your continued engagement, following, support and especially prayers.
Here’s the short story: Liza’s PICC line was put in on Friday, October 2, as I mentioned in the last post (with the reasons why and much more). It was removed last week on Thursday, October 15. In the intervening period she received two ketamine infusions through the line (these are for pain) and two vitamin/mineral infusions of a natural mix called “Meyer’s cocktail” to promote general healing, and then one infusion of exosomes, also for general healing, just before the PICC line was removed. We have an appointment downtown on October 27 to meet with our old neurologist and neurosurgeon (third surgery). We are still waiting to hear back from Boston and Dallas and are preparing to reach out to at least one more place in the East. Liza continues to struggle with constant, intense headache pressure pain, regular nausea, and has not left the house except for the above mentioned appointments and rarely leaves her bed. She still needs your prayers.
Here’s the long story: The PICC line turned out to be a great blessing and a bit of a worry. Just after it was inserted a nurse friend came over and helped us understand how to properly care for it. Liza worked hard to find a home-care nurse that would provide all of the daily care details and equipment but there were some insurance hang-ups and obstacles. So, we decided to do it ourselves. Internet, local medical supply places, one down in Houston and help from our friend got all we needed. The line needed to be flushed twice a day with saline (two separate sides of the single line) or once a day with Heparin - both to prevent clots and keep the line sterile and safe. It takes two hands to do it so Liza couldn’t do it herself as the PICC line was in her right bicep. So I did almost all of them, with Liza’s mother (also a former RN) pinch hitting a few times.
The original stitches holding the line in and its large dressing needed to be changed also. An RN did that in a clean setting with a large sterile packet of equipment that I got on the internet. Liza had to cover it each night for a bath or shower with a special water-tight sleeve and it was a good bother the rest of the time. Even an upgraded sleeve to keep it all tight and stable didn’t seem to help very much.
Meanwhile, we continued to work with Liza’s PCP in preparation for the stem-cell, more properly speaking, exosome, infusion. Date TBD. They had to be ordered, delivered on ice, thawed and then injected within just a few hours. It was all rather tight. Also Liza’s incredibly brilliant and caring doctor wanted to prepare Liza’s body as much as possible to maximize the effectiveness of the exosomes. So twice before that she went in for a vitamin and mineral infusion called a “Meyer’s cocktail.” And although it was yellowish from all of the B vitamins in it, I assure you it did not live up to its rather intriguing name. Just a simple drip bag and another injection of some sort of phytonutrient mixture and we were out. Simple.
At the same time, the PCP prescribed some further vitamin injections. So each day (with a few exceptions), after Liza’s RN mum showed me how, I inject 2.5ml of a specific B vitamin into Liza’s abdomen. More than once I caused a bit of pain. Once I left a big bruise somehow. But I am getting better. It’s pretty simple now. Through it all Liza is a trooper and hasn’t held the pain or bruise against me. (Smile)
That carries us to Sunday, October 11. Besides the appointments, flushes and injections mentioned, Liza was still on a medicine schedule of certain pills every three hours throughout the day and night. We had it down to a system in fact, trying to eliminate all of the unnecessary fudges of timing. The rest of Liza’s day was filled with hours and hours in bed. She is still overseeing the kids schooling - which like everyone else in the world has been a bit different than normal because of COVID. She’s connected with friends and family online and continues to find helpful purpose, distraction and activity in that. She continues to mail a bunch of hand-written thank-you notes and give gifts. But on Sunday, October 11 something happened that surprised us.
It started as a simple conversation about a pain medication that she started in California. Because she doesn’t like being on medication at all, we both were looking towards getting off of things in a wise way. Well one of the main drugs ran out that Sunday. We saw it coming and had a plan to substitute another smaller medicine prescribed before California. I filled her cups and scheduled her meds as normal but made the substitution late Sunday, then Monday and Tuesday.
I helped lead and host a conference at our church beginning that Monday, getting to be a speaker myself on Wednesday morning. But Liza began to feel quite bad on Monday. The scheduled ketamine infusion helped (a close friend took her as I was occupied at the conference) but only a bit. The next day was the second Meyer’s cocktail (taken by her mum), but she was getting worse. A very slight fever, chills, nausea and just a general but significant downgrade in quality of life (which was already low). Liza felt like death. She said it was close to how she felt back in California on the ER day. Our first thought was PICC line infection. But our treatment of it was nearly textbook. The entrance looked good. It was all troublesome and worrisome.
Wednesday night Liza was awake and praying. She was pleading with God to take away the pain or show her something. She caught an image of our bathroom trashcan with an empty pill bottle in it. Later in the morning, after I had gone to work, she got up and looked. There it was. The med we had discontinued on Sunday because it had run out, no refills. She immediately looked up the specs on weaning off this drug and its withdrawal side effects. Every box ticked. By the grace of God, we were scheduled to see Liza’s doc the next day for the exosome infusion. Liza’s mum and we coordinated with her for a plan to help Liza get properly weaned off the drug. NOTE: Although I should have done my research on this as it is not the first time something like this has happened (about five years ago Liza went off a ton of drugs there were not working and it was horrific), no one told us about how to end this drug.
So, all on the same day, Liza got an exosome infusion, the PICC line was removed immediately afterward, and she was temporarily put back on the discontinued drug so that she could properly phase it out. She’s already taken a few steps toward weaning off, and although she generally feels better than she did in those first few days, she still has hot flashes, feverish sweats, nausea, incredible fatigue and is even more limited in strength and mobility than before. Her headache at times gets unbearably bad. The plan is to safely and progressively time out the remaining tablets and never, ever return to that drug again. Rough.
Some have asked about the stem-cell or exosome infusion. Exosomes are micro-vesicles involved in cell communication and cell-signaling. They are much smaller than a cell itself (1/1000th the size of a cell) and are isolated from donated human mesenchymal stem cells then purified. They bring a wide array of growth factors to stimulate and modulate many processes in the human healing cascade by activating the patient’s own regenerative cell response. The tiny bottle that we got from Liza’s PCP was a concentrated dose of exosomes and over 1000 different regulatory proteins that help modulate the inflammatory healing process. It was carefully mixed into a bag of saline and infused through the PICC line in about 20 minutes or so. While some patients see benefits within 4 weeks, we will see how Liza responds. If needed, we will explore this option again in six months.
Regarding the future, we are still waiting to hear back from Boston and Dallas doctors. I priority mailed the large medical files, disks and history with cover letters several weeks ago now. Since then I was connected with a potential third option in the East - a specific group of radiologists that work on complicated cases and find CSF leaks and other anomalies that are previously missed. I’ve yet to make good contact. We also have back-to-back appointments (this is yet unconfirmed) with Liza’s neurologist and most recent neurosurgeon on October 27. This is an attempt to just fill them in and ask if they have any further suggestions, plans, options or can provide any other leads or assistance. In Liza’s current state, I will likely have to go alone and perhaps FaceTime Liza from their office.
Additionally, our two teenagers are doing very well in school and have managed this entire ordeal rather well. I am proud of them. It’s been hard on all of us and it will likely take more time for us to identify exactly how all of this has affected us, and that includes the kids. But we are together and we are in some sort of rhythm at home, which is comforting on some level. I am also back at work physically, having relocated my desk and books etc. back to the office. That said, our church elders and staff have afforded me great grace and freedom to care for Liza and my family as I need.
So that's the fuller update and bigger story. Now here are the main prayer points:
- Pray for Liza’s pain, especially her intense headache pain
- Pray also for her spirit and endurance
- Pray for hopeful and solid leads to come soon - leads that can help solve the problem once and for all
- Pray for our kids, Andrew and Isabel