The end appears to be near. The end of my current predicament, that is.
The original “end date” for my infusions and PICC line was today. In order for the infusions to stop and the PICC line to come out, my urological surgeon had to remove the stent he placed in me after surgery. The last time I had this surgery, in February, my follow-up appointment for removing my stent was scheduled before I even left the hospital and it was out the next week. This time around, it was not.
After three calls to my surgeons office, over the last 5 days, my surgeon’s nurse finally called me back this morning and gave me some shocking news: she hadn’t called me back to set my appointment because my surgeon was on vacation this week, unbeknownst to me, and could not remove my stent until next week.
I was flabbergasted. I was never told that my surgeon would be on vacation the week after my surgery. Had I known that, I would not have had surgery last week. Given my medical history, I prefer my doctors be around after my procedures. The surgery I am having in June I could have had in May, but for the fact that my surgeon would have been out of town the week after my surgery…no way. Doctors have every right to go on vacation. But I think it was very poor form for me not to have been informed about my surgeon’s vacation plans before my surgery was scheduled, knowing I would need a follow-up appointment and stint removal the week after.
In and of itself, having the stint an extra week would have been no big deal; however, because of my past infection, the Infectious Disease Doctor would not give the order for me to stop the intravenous antibiotics infusions while the stent was still in. And as long as I have to continue my infusions, the PICC line stays in. (Which, by the way, is not pain free and non-movement restrictive as I was originally told it would be)
Another 7 days of 1 hour infusions, thrice a day. Another 7 days of wrapping my arm in saran wrap to shower. Another 7 days of staying up 3 hours later than my normal bed time and getting up a half hour earlier every morning to meet my infusion schedule (translation: another 7 days of exhaustion). Another 7 days of asking for special accommodations at work to make it home in time for my infusions. Another couple of visits from strangers in my home to check up on my supplies and take my vitals. All because I couldn’t get the stent removed. Not because I have a current infection. Not because I need another 7 days of antibiotics. Not because there is any medical necessity for me to wait another week. Simply put: my surgeon is away and can’t remove the stent until he returns.
So I explained all of this to the nurse and pleaded with her to arrange for another doctor in the practice to remove my stint or give me more options. I told her it was unacceptable that I had to wait another week, and go through all of this, and that I was never informed of my surgeon’s vacation plans. She basically gave me the official “tough luck fella” speech and scheduled my stint removal for the first available appointment: next Thursday.
I am not a fan of confrontation. I try to cooperate with my health care providers and accept that there are limitations with schedules, that there are other patients in need, and sometimes there are more pressing concerns than mine. But I have been a continuous chronically-ill patient for over 15 years, and endured my fair share of procedures, surgeries, medicines, treatments, appointments and all that goes with that. I am currently in-between surgeries, and I need every ounce of treatment-free time I can get to prepare for the next procedure. I was not OK with having to go another whole week with all of this in me. So I started making calls. I called my PCP and explained to his nurse what was going on and asked for help. I called the Home Infusion Nurse I was working with and explained to her what was going on and asked for her help. I called the Infectious Disease doctor and explained to her nurse what was going on. I made it clear I was desperate to have this resolved asap, that the PICC line and Infusions were having a negative impact on me physically, emotionally and professionally, and I did not want to be forced to endure it another week for no legitimate medical reason. I have never so aggressively fought for something like this before, but enough is enough. I’m a good patient. I play along and I try to always be polite, understanding and compliant, no matter how miserable or depressed I get during whatever health issue I’m enduring. But I just could not accept this.
Apparently, I got through to someone somewhere somehow. This afternoon, I was contacted by my surgeons office, and I now have an appointment for tomorrow at 9:30 AM to have the stent removed. As soon as I got off the phone with the surgeon’s office, I contacted the Infectious Disease Specialist and the Visiting Nurse to arrange my PICC line removal tomorrow afternoon.
So, one more late night infusion tonight, one more early morning infusion tomorrow, one more saran wrap shower, then stint removal in the morning, and PICC line removal in the afternoon, and I will finally be free from this latest health debacle.
I am reservedly relieved and excited, but won’t really be able to celebrate until all is said and done and all goes as scheduled tomorrow.
And by celebrate, I mean take a long hot, saran wrap free shower and sleep the entire weekend.
And maybe have a Cosmo or two.