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Has anyone started on or ever used the IV antibiotic infusions?
My pulmonologist at Stanford suggested I consider starting on the IV infusion therapy. I’m really scared and wondering if anyone has done this treatment before.
BE for about 15 years. About 8 years ago a sputum sample found MAC so I went on the 3 antibiotics for 1 yr. Cleared it up but then M abscesses showed up. I have been nebulizing, airway clearance and on the new FDA approved Brinsupri for the past year. It has reduced my flare up during this year but in July I had a really bad flare up lasting about 6-8 weeks and it took 4 different antibiotics to clear me up. Now they want me to consider the IV therapy everyday for a yr. I’m really nervous about this and wondering if anyone can give me their experiences, input, help…anything, please! Thank you so much!
Patti55
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@kaybast
Kay - My sputum has always been so profuse that I’ve had no problem producing it for testing. Some folks find it difficult, going through lots of positions, hydrating, coughing exercises, etc. Your pulmonologist and respiratory therapist should be able to advise you.
@mffox thank you . I see him again in a few weeks . My last sputum just came up into my throat as I was standing next to the bed about to reach to pick up the pillow . Got it into a lab cup and daughter came to get it to the lab. The Pseudomonas has been showing up in my left maxillary sinus and lungs . I’m having sinus surgery on the 7 th where the ENT Dr thinks he will eradicate the bacteria in my left maxillary hopefully. So I will as you suggest speak to Pulmonologist as to how best get a lung sputum in hopes the bacteria is gone . My pain meds Dr who is also an anesthesiologist will not continue with lumbar epidural steroid injection and the shoulders and hips for chronic bursitis until I get clear margins that the bacteria is gone from my system …I understand his position and appreciate it ! All the best and appreciate your responding !
I had IV Amikacin in 2023 along with with oral Nuzyra and oral Linezolid. Although I would not do the Linezolid again, the other 2 were fine. (After about 6 months I ended up with neuropathy in both of my feet just past the forefeet. Luckily I realized what was happening and STOPPED EVERYTHING until I could talk to my ID Dr). Anyway she stopped all these meds, and I’ve had a very low level of abcessus since. I’m on “watch and wait” by National Jewish Hospital in Denver for the Abcessus. My forefeet and toes are still numb, but luckily it’s not an impingement on my activities.
Sorry long story on that aspect, but as for the IV picline I was very pleased at how how easy it was! I had it only for the Amikacin and only 3 x a week. The delivery of the meds was from one of those balls which I could just put in my pocket on the days I needed it. So easy! I did have to clean and flush the end of the pick-line each day, every day, but so easy and u got used to it. My only issue was the pick line itself was in my right arm, and I could not play tennis (one of my “things”), and also could not do strenuous things at all on the right side (dominant arm). For the future I’ve been told by Dr Hass at NJH that I can opt to do a left side port if I need to in the future. My sister in law (who already has a port for cancer treatment) suggested I ask about a pic line which comes out of the left chest. Anyway, I am optimistic that if I have these options!!
I found the Amikacin pump (the little football shaped thing) easy as pie to deal with!!!
So interesting that there is now a iv option with a bulb thing for Nuzyra! I used to have to set my alarm for 4 am so I could have an empty stomach for the pill form. That was a pain! If you already have to have iv Amikacin, no biggie to have the Nuzyra too
@patti55
I have had picc lines and administer them with antibiotics many times since having bronchiestis. It's fairly simple and easy to do it yourself.