The drive to George Washington Hospital wasn't bad at 5:30 in the morning and surprisingly my Dad, grandmother, and I found it okay. My Mom was unable to come with me because she was in California on a business trip, which is why my grandmother took her place on this hospital trip. I was checked in and finished with registration by 7:10 and then I was waiting in the crowded waiting room for a man named Garrett to take me back to where the procedure was going to occur. At around 7:30 he finally approached us and told us that the nurse was still prepping the room and that it shouldn't be more than 15 more minutes, I thought it was really nice for him to come down to tell us that. I was growing more anxious waiting in the waiting room with sick people and hearing all of the different noises so I decided to take 1 of my 2 valliums that were prescribed to me for my procedure. Then, I was going to save the other until he was taking me back to the room because usually they still have to take my blood pressure, temperature, etc before they can do the actual procedure anyway, which is exactly what I did. Except the only difference was I am not used to vallium at all and was completely out of it for not ONLY the procedure BUT the rest of the day also. You could definitely say it served its purpose.
When the vallium I took for the procedure had at least worn off enough for me to become lucid I asked the nurse how come the PICC was purple and looked so thick, she said that is because I had actually been given a PowerPICC, which has the abilitiy to have constrast injected directly into it for a CT scan if I ever needed one. I guess that is always a plus, one less IV! But, let's hope I never have to have one in the near future!
I just realized I never explained what exactly a PICC line was for anyone reading this blog that is unfamiliar with them. Well, a essentially a PICC is a peripherally inserted central catheter, which is a long, flexible tube inserted in a vein to provide intraveous access to treatments. My PICC was inserted right above my elbow crease, threaded through the right branchial vein, and the tip is touching the superior vena cava. What most people do not understand is how long these PICC lines are, mine is 38 centimeters long!
When I got to the doctors office, I had an appointment with an infusion nurse and I had my first dose of antibiotics in my PICC line. The antibiotic they chose to start me on was merrem; I do not know that much about merrem yet other than that I did not have an allergic reaction to it in the office! My infusion nurse Erica was extremely detailed with my Dad and grandmother handing them a green booklet labeled "Patient Infusion Handbook" with detailed instructions on how to care for you and your PICC. She taught all of us how to administer my antibiotics and how to change my dressing. Unfortunately I am not going to be able to change my dressing because of where the PICC is located on my arm, but I can verbally walk someone else through it which is much nicer than relying on a home nurse to do it once a week in case I need it changed sooner than she is able to come out to my house.
I must admit I was fuming that I was only starting with one antibiotic intravenously; I did not get this PICC in for nothing. Plus, in my mind merrem is similar to rocephin and like I have previously mentioned I have already done 14 weeks of rocephin and it didn't work so I am fed up! When Erica told me that I was starting with merrem I had her go ask my doctor if she made a mistake because I thought surely this had to be incorrect and that may seem childish or immature, but I am so exhausted with this process. I am tired of being in pain. I am tired of suffering because of this disease. I am tired of giving up opportunities because of this disease. When Erica spoke to my doctor and came back to the room she told me there hadn't been a mistake and that this was the protocol that the doctors wanted to start me on. Frustration + pain never mix well together. By the time I finished my IV and the doctor walked in I was angry and I expressed that, she saw it across my face. She asked me what I wanted and I told her ideally I would be on two antiobitics intravenously simultaneously. It is what it is now though.
Based on my current symptoms, my doctor decided I needed to prioritize sleep before I could move on to a harsher protocol as I would call it. With that being said, I am going to try 15mg of Remeron for sleep for five days and if that doesn't work I am going to try 30 mg. In addition, I am adding Marinol 2.5-5mg at bedtime which can also help with nausea and pain. I found out that Marinol is essentially medical marijuana in a pill form! I was shocked when I googled it like I do to all my meds and found that out! I can't say my Mom is too happy about that one, but if it will help me then she said we my as well try it, that seems to be our family motto now adays. My doctor also added mobic 7.5mg twice a day to help with joint swelling. Then in terms of antibiotics this is the protocol, plus on my off days I will be doing 1000ml lactated ringers containing sodium, potassium, chloride, and lactate:
This will be interesting to say the least especially that last week because that is my 21st birthday, May 31st! Luckily I was able to get Flagyl, the blue antibiotic on the right moved to May 30th, but still Lyme sucks! I am upset nonetheless.
Yesterday was an exhausting, overwhelming day; I could barely take in all of the information. Thankfully last night I slept 11 hours, my body needed it, when I did wake up though I woke up to a very swollen/bruised arm where the PICC was inserted, so I just ate some frozen yogurt and took my morning pills and went back to bed for 3 and a half hours! If my doctor wants me to sleep, sleep is what I will do!
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