My dear friends, at some point your doctor may tell you that they are considering putting you on intravenous (IV) antibiotics—fluid antibiotics that are administered directly into your blood stream. Generally, this is because the Lyme and co-infection bacteria are raging too much in your body, and IV antibiotic treatment would put up a greater fight than simple oral antibiotics. IV meds work better because they immediately enter your blood stream—none of that pesky filtering-through-several-organs-first business. It’s more intense. It’s more costly. And it will be a very different season of treatment. I am so sorry if you ever find yourself in need of “more serious” treatment.
If it is decided that you need IV antibiotics, you will probably need a PICC line—a peripherally inserted central catheter. It’s a gadget that is placed in your upper arm in an out-patient minor surgery. The PICC line is inserted into your arm and a wire carefully fed through a vein that allows the medicine easy access to your heart. It’s pretty cool (and a little gross if you’re squeamish like me). The PICC line makes it possible for YOU to give yourself IV antibiotics at home. Before this invention, you would have had to go to the hospital every day. The fact that you can infuse at home is amazing!
Now, I’m not going to lie. I had a pretty rough experience. I only received IV antibiotics for 3 months (much less than we planned). My first PICC line agitated my heart (which you’ll read about below), so I had a new one placed the following week. Over the course of those next 3 months, I had several allergic reactions, two staph infections, and my body went into septic shock. I had the one-in-a-million experience. Seriously, one-in-a-million. And I am just fine, and I can smile and remember lots of good things from that season…. So believe me when I say, it’s going to be okay. Even with all that, I ended up a little “better” than when I started. Just imagine how much good can be done when things actually go right!
While my experience probably feels discouraging, it wasn’t all bad news. Here are some great things you can look forward to:
- You should have much better die-off with IV meds, which means you should regain some quality of life during and after the IV treatment. Huzzah!
- You will finally look as sick as you feel, which as we all know is a strange sort of blessing when you have an “invisible disease”.
- You can let it be a wake-up call to summon “fight” that you didn’t know you had. You can come out a better advocate for yourself and more determined to fight!
- You will probably reach your out-of-pocket max with your insurance company, so you could have many months of free health care if you time this right! Bring on the expensive (free) meds!
Now, there are a lot of logistics to getting set-up with a PICC line and your IV meds. Your doctor will have a plan in place, and they can explain a lot of this to you. But for now, I want to share with you the kinds of things I would tell a friend who was preparing for this type of treatment… And we are friends, after all, aren’t we?
- First, your Lyme specialist will refer you to a surgeon who will insert the PICC line. You’ll begin by having a consultation with the surgeon—you can ask them questions and then schedule a date for the insertion.
- Next, your Lyme specialist will recommend a pharmacy who can handle the mixing and delivery of your IV supplies (they deliver to your door!). They will connect with your insurance company, the surgeon, and even set-up a home-health service who will send nurses weekly to check on you, clean and change the dressing around your PICC line, and draw blood for lab work. It’s amazing how much of the logistics are done for you—cue sigh of relief!
- Before the surgery, I’d suggest doing a few things for yourself:
- Mentally prepare: You will be more wiped out than normal once you start IV meds. You need to prepare yourself and your loved ones for an even slower lifestyle. More rest. Less responsibilities (maybe none). What responsibilities can you shed?
- Practically prepare: Before you get the line, I would prepare a bunch of freezer meals (soups, enchiladas, chicken, and casseroles). You won’t feel like cooking, and you won’t be moving much during the infusions. You could also ask people to help you with this. Maybe fiends could prepare 1-2 freezer meals for you per week, so you have an extra buffer.
- Emotionally prepare: This will be a time to really fight for your health. You will likely have many phone calls a day between your doctors, nurses, and insurance. It’s awful and you won’t feel like doing it, but you have to keep fighting. This is what I was talking about when I said that you could learn to “fight” in a way that you didn’t know was in you. It’s awesome to determine yourself after this. It’s an investment in your future, and in your family’s future. I viewed “learning to fight” as an act of worship. I felt like Jesus had asked me to be vigilant in taking care of my body, so I wanted to lean in with all of my heart and be obedient. It continues to feel like worship to keep fighting when I don’t feel like it—trusting that He will give me favor as I talk with people, and the strength to do it.
- Okay, you’re all set for the PICC line. The insertion of the PICC line is actually pretty quick. They numb your arm with lidocaine, but some people need more than others. If you’re in any pain whatsoever, ask them to give you more. The only thing you should feel is pressure.
- Once the PICC is in, you will get your first dose of IV meds at the clinic/hospital to make sure you won’t have an allergic reaction. They’ll bring you juice cups and crackers, while you ice your arm for a bit. Bring a book or movie on your iPad. You’ll be there for a couple of hours.
- The PICC line itself should feel comfortable in your body. You’ll have some soreness where they inserted it, sure… Even some bruising at the insertion point. That’s normal. However, if you get home and are having lots of chest pain, you should call the surgeon. Nothing scary is happening. The line might be just a little too close to your heart, and your heart is letting you know. Your surgeon can take an x-ray and change the position of the line if needed.
- Your arm will be bruised and painful for the first week, but then it should feel pretty normal. Most patients primarily complain of itching. Itching at the insertion site is normal and not preventable (I still have phantom itching a year later).
- Your home health nurse will visit either the day of your surgery or the next day. They’ll teach you how to set up all of your equipment, how to infuse, etc. It feels a bit intimidating at first, but it’s totally doable, and if you are anything like me… You start to feel pretty cool knowing how to do all of this new stuff. As I said briefly, your home health nurse will take weekly blood work, and every 3-4 weeks, they will also run cultures. All of this is to make sure your liver and kidneys are handling the medicine, as well as to make sure that there is no sign of an infection in the line. They will send the results on to your Lyme Specialist so that they can adjust your medicines as needed. It’s awesome how everyone coordinates during this time.
- The equipment that’s part of the infusion stuff has a dial on it which lets you regulate how quickly the meds are delivered to your body. My experience is that the dial is often wrong… It infuses too fast. So, take note of how long it takes to infuse the first time, and then experiment with the dial to make sure you find the right time (even though it will look like the wrong time).
- Infusions take a long time, often several hours. You won’t be able to move much during this time (otherwise, the medicine won’t keep infusing). Find some good TV shows, magazines, and books that can help fill your time while you wait. I occasionally had friends come sit with me… But rarely. I was too exhausted to smile and talk during infusions. If you’d like some suggestions on what to do while you wait, check out my post: 14 ways to enjoy resting.
- Lyme patients tend to develop allergies the longer they are sick. I learned during my PICC experience that I’m allergic to certain kinds of tape and the dressing that they use to cover the insertion site. Most companies do offer more specialized dressings for people who are more sensitive. If you are having crazy itching on your skin, ask your nurse or the company supplying your antibiotics to give you different dressing types.
- It is likely that any time you are having a first dose of a new antibiotic, your doctor will want you to be under the supervision of a doctor (like at an infusion center) so that they can monitor you for an allergic reaction. If your Lyme doctor isn’t local, it might be a challenge for you to find an infusion center where your doctor “has privileges”. It could be complicated, but it might not be. Your doctor will help you navigate through that. If you have a family doctor who has privileges in your local hospital, ask if they would be willing to help coordinate those “first-dose” infusions.
- Sometimes allergic reactions can happen several doses into a medication. Your doctor should prescribe you an EPI pen, but I would also buy some Benadryl to keep on hand. Because IV meds enter your blood stream quicker than oral antibiotics, if you are allergic to a medication, it’s much more serious in IV form—hence the need for an EPI pen and Benadryl.
- Invest in Saran Wrap and medical tape to keep your PICC safe during showers. Oddly enough, I found that it works better than the shower covers specifically marketed for PICC lines.
- Get some every-day PICC line covers! Cut up athletic socks make excellent PICC covers. You can also buy them at Fresh Squeezed LymeAid — a shop run by a fellow Lyme Patient. PICC covers help the insertion site feel secure, as well as makes your arm look more normal.
- Sometimes a bit of blood will be visible in the line. Flush it with saline. If it goes away and doesn’t come back, then it’s totally fine. If you are consistently having blood showing in the clear part of the line, I’d call your doctor or nurse about it.
- Your line can get infected. You’ll want to take extra care not to get the bandaged area wet. You also should make sure you feel comfortable with how your nurse cleans it. Don’t shy away from protecting your line. I had TWO staph infections (which is very rare by the way)… I wish I had advocated more my thoughts about my nurse’s cleanings. You will know your line is infected if you have puss coming out of your line. Gross, huh? Your weekly lab work will also confirm the infection, and of course, you can (and should) always call your doctor if you are concerned. The good news is that it’s hard to miss an infection… So you should be just fine!
- This will cost a lot if you do it. You will most likely hit your insurance policy’s out-of-pocket max this year, and it’s going to happen quickly. A lot of this, you will likely pay upfront (like your IV meds), and then be reimbursed for later. Here are some creative suggestions for how you could handle the in-between time:
- Ask the hospital / nursing agency / doctors office if they have financial assistance programs OR an option to do a monthly payment plan. In the past, we have been able to get a large percentage off by showing proof of our financial status.
- You could ask about the possibility of getting a discount on a procedure if you pay upfront. Many health organizations lose money as people neglect payment, so they are often willing to give discounts for people who pay at the time of service. We received a 20% discount by paying for my surgery this way.
- You could take a small loan from family or friends (if they are able). This could be a great blessing for you, and they will feel happy to get to partner with you during this difficult time. All the same, I’d plan to pay it off as quickly as possible. You want to honor your loved ones for coming to the rescue.
- And finally, if possible, plan to get your PICC line at the beginning of a year, so that you have as much free health care as possible once you’ve hit your deductible and out-of-pocket max. It will be extremely helpful to feel the freedom to get as much medicine and see as many doctors as you want… because it’s all free!
- Keep a spreadsheet of all the medical expenses (including meds) that you are incurring. Then, compare it to your insurance documents as they come in. I was able to catch multiple mistakes where hundreds of dollars were owed to us. Super helpful! Because you will rack up so many expenses quickly, it can be difficult for your insurance to keep up. Stay on top of it, and then make as many calls as you have to to make sure that everything is correct. You have a one-year window from the time of service to make sure that claims are filed. Even once they are filed, they can take months and months to be finalized. This is one of the areas where you’ve got to fight to get stuff done. No one will fight for you harder than you… So get ready!
- And the most important: Please, please, please… Don’t be afraid to call your doctor and your nurses. You will herx more than normal, you will have strange side effects (like air hunger), and they are there to help you out. Having a PICC line is a big deal, and your doctor knows this. It’s much more serious than using oral antibiotics. My doctor has never been more vigilant than when I had the PICC line. They are there for you. Take advantage of all of it. You don’t need to go through any of this by yourself.
These are just some of the things I wish I had known at the beginning. Your doctor and nurses will walk you through a lot of the practical stuff, so don’t worry too much about remembering all of this… However, it’s here if you ever need it!
This will be a time to bear down and brace yourself, but it can be good. There’s something amazing about going through a tough time and coming out determined and stronger. I have many of those people in my life… Inspiring people who let tough circumstances change them into something beautiful. I want to do that!
Let’s grow together. Let’s keep fighting.