Are there any issues swimming in a freshwater lake? It’s clear; doesn’t allow power boats so the water is quite clean. I wonder if it would be wise just to avoid getting my head in the water and risk taking in water?
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@sandykayhud Oh dear…that seema like a long time to be voiceless. Have you tried speaking to the Specialty Pharmacist, where the drug came from? Sometimes they provide better answers than the drs concerning medocations. Especially these newer ones. Please keep me posted. I pray your voice comes back soon.
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I did talk to the Kroger Pharmacy (that is where my Arikayce came from) when I first lost my voice. They did not offer much advice and really said they had rather talk to my pulmonary dr if he wanted to call. Basically they just gave me the same thing that was listed as the side effects in the materials they sent me. I do not know if my dr talked to them. He just said to stop the Arikayce. Today he is putting me on prednisone and diflucan to see if that will help with the voice. Still waiting to try to get in with MAC specialist in Birmingham. Lord is teaching me patience and I am not a real good learner..HA
I just started arikayce last week. My trainer recommended swallows of water a few times during the treatment. Also one of her patients uses throat coat and has found it to be a help as far as preventing raspy throat.
I’ve been on arikayce since the first of August so not very long and this morning I woke up extremely hoarse. In fact can hardly talk. I’m going to skip my treatment today and see how it is tomorrow. My cdc doc is not in until Thurs. My throat is not sore but lots of thin mucus so hard to rest the vocal cords. I live alone so I’m not talking.
@marilynk Sounds like a good idea to take a break, I had to take a 3 day break.
Marilyn, mine started with the hoarseness. My dr wanted to continue so I did. I lost my voice and After 11 days I am just beginning to be able to squeak a little. Probably a good idea for you to it a rest for a day or so to see if your hoarseness goes away. Good luck!
Throat coat tea is worth drinking when using arikayce for me – my throat was raspy after first treatment. It’s very soothing and adding raw honey seems to help.
Exactly what is throat coat tea? No familiar with it.
Organic Throat Coat supports throat health with all herbal ingredients. Licorice root, slippery elm, marshmallow root and about 4 other – wild cherry bark, fennel fruit, cinnamon bark & orange peel. I like to add raw honey. I got mine at Sprouts located where all the teas are. My case nurse told me about it.
At this point I am just waiting to try and get voice back. It has been completely gone for over a week. My pulmonary dr is trying to get me in at UAB with dr that specializes in MAC so will probably not start anything till I see him. Have you had anyone who tried the Arkayce and lost their voice who did not get it back? Getting sorta concerned. My husband may enjoy the peace and quiet but even he is getting ready for some noise from me!
just an update:After 12 days I am getting my voice back!! Dr still does not want me to restart at this point.
Sandykayhud. YAY!!!! So glad to hear it!!!
Thank's for asking, Sounder. The training went great but I was short of breath and I had lots of gunk to cough up after each treatment.
I was doing it in the afternoon and by bedtime I was ok – until the fifth treatment which was on Saturday. I couldn't get my breathing to settle down and couldn"t stop coughing up gunk. Sunday, I realized I was having an exacerbation of my chronic bronchitis or bronchiectasis or both.
My breathing was so bad that I could barely make it to the kitchen and I stopped Arikayce as well as my airway clearance treatments. I sent a note to my doctor and she called me. She told me to hold off on the Arikayce and to concentrate on getting my breathing back to what is normal for me. Then, we would decide what to do. Maybe Arikayce 3
per week or maybe something else. Ten says later, I'm just about back to where
I was and I plan to send s note to the doctor tomorrow. I have an appointment for another ctscan and with her on 8/14. She may want me to wait to see her before
trying it again.
I am tremendously disappointed!
Rits. I had my first dose of Arikayce today. Nurse came and all went well. It seems I will be taking it every day unless I have a reaction. Were you able to go back on the Arikayce again after your breathing problems? I am hoping all goes well, but time will tell. I’ll keep you posted. I will take in the morning and then go to work right after.
We talked about lake water. What about salt water. I am going on a family vacation and would like to snorkel with them.
Hi Kathy….my understanding is that there is very little MAC in salt water, if any??? The ocean is the only place I swim when on vacation…I don’t dunk
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