I’m so tired. And frustrated.
The hospital finally got back to us about my bloodwork a few days after I got out of the house. My port was infected. Really infected. I’m sure you already figured that part out.
I was already on oral antibiotics but my doctor wanted me to go see an infectious disease specialist and I agreed. I was barely standing up straight by Tuesday morning. I had an appointment with the doctor later that day. I went to the infusion center, ready to get my usual dressing change—but my nurse said there was no way she was accessing an infected port—that I needed to see the infectious disease doctor immediately.
So here’s how that day went:
8:00 AM: I call the number of the doctor I was referred to, give them all my info—only to learn they don’t take my insurance.
8:05 AM: I call my main doctor and ask him for a second referral.
9:15 AM: My nurse refuses to access my port.
9:45 AM: I make a pit stop at Starbucks to see if a small amount of caffeine can keep me up long enough to get through the rest of the morning. Then I go to my mom’s house down the street.
10:00 AM: My doctor calls me with a new referral. They say they can and should see me immediately and I should leave now to go to their office.
10:30 AM: I’m in their waiting room, filling out paperwork. I can tell now that the coffee was a bad idea. Now I’m not only shaking from exhaustion, I’m shaking from caffeine—and I’m feeling so nauseated from the antibiotics I’m starting to panic a little.
10:35 AM: I’m called into the exam room. I wait for a minute or two until the nurse comes in to take my vitals. I suddenly start dry heaving and bolt for the bathroom—but can’t throw anything up. I head back, apologize, and try not to dry heave anymore while she takes my temperature.
10:40 AM: The doctor comes in. She’s great. We try to go over a timeline of my blood draws, hospitalizations and antibiotics from the last two weeks. I can barely remember most of the details, but we figure it out.
She has bad news. She wants me to be on an antibiotic pump. It’s a small machine inside a belt that will go around my waist. It’ll connect through tubing to my port and pump strong antibiotics…for a month. I tell her I have a wedding in Kentucky in less than a month. She tells me I’m not allowed to travel. I have already bought the plane tickets, rental car, and hotel. Oh, and it’s not just some random’s wedding. It’s my sister-in-laws. I’m totally deflated.
11:30 AM: I drive myself back to the infusion center, but everything is going hazy. When I get inside it’s about an hour wait for the orders to come in and to get things started.
There are a few details the infectious disease doctor left out.
1) The antibiotic pump requires a new bag of antibiotics and a reprogram of the device every single day. Meaning I have to show up to the infusion center every single day (yes, weekends too,) for a month.
2) The tubing of the pump has to stay sterile, so I can’t get my fluids through my port. So I’ll need a PICC line put in my arm that will also have to stay for a full month.
3) The antibiotics will be pumped into me four times a day. Which totally blows my mind. I know that’s totally going to knock me out.
12:30 PM: I’m hysterically crying in the infusion center. Totally overwhelmed. I call my mom, who calls my husband and he shows up with soup from Whole Foods.
1:30 PM I eat my soup and R.J sits with me while they hook up my antibiotic pack. Then I head back into the sterile room to get my PICC line placed. It doesn’t hurt that much to have it placed but we realize quickly that the bandage they were going to use was one that I was allergic to. We finally find one that might work and try it out.
It’s near 2:00 PM before we leave the hospital, leaving my car in the parking lot for my parents to pick up later.
It’s now been four days on the antibiotics and the PICC line.
As soon as the pump starts going I feel like drifting off to sleep. My PICC line makes me want to amputate my arm. I’m severely allergic to the dressing, but all we can do is put some gauze under it. I’m still on oral antibiotics too—so my body is just on overload. And R.J and I have been up and at the infusion center every morning.
I wish I could be more positive about this, but frankly I’m tired. I’m isolated and haven’t seen my friends in weeks. I’m missing a major family event. And I haven’t bought candy corn OR hamentash this season. I don’t know. Just because I’m used to it doesn’t mean it doesn’t still SUCK.
But I am really grateful that R.J took time off of work to get me situated and has been up early with me every morning to take me to the infusion center. I’m grateful that my nurses at the infusion center are so kind and know me so well at this point. I’m grateful that my mom is always around and does everything she can to help me escape from the insanity for a while.
Nothing to do right now but relish Skinny Girl popcorn, Netflix, and give into the sleep that my body is hounding me over. Let’s consider this the end of the series. Because I don’t know about you, but I’m ready for the soap opera to be over!
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