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← Return to At NJH and need to vent
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It was very hard for me, Bon, to say "No, I'm not doing these drugs." But then, like you, I realized folks were taking them, becoming very ill in the process, and in the end, had to take them for another year and a half to clear the NTM. I just wasn't willing to give up my life. And like you, I am very sensitive to drugs and don't do well on anything. But the woman I roomed with on my two week eval at NJH was on all three, and a fourth was added via a pic line while she was there. She eventually cleared the NTM and she never had one side effect other than fatigue. So there are folks who tolerate them and do well. I think it's a very personal decision for which one has to consider all aspects of his/her life. I'm 70 - soon to be 71 - and don't regret my decision. If anyone could have guaranteed me that 18 months of misery would cure the disease I would have toughed it out if I could have, but as you know, there are no guarantees with this. So we do the best we can and be as gentle with ourselves as possible while coping with an overwhelming disease and decision.
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I’m going to be 73 on July 15 so we’re close in age. If someone had read your response to my husband , he would’ve thought it was me talking…we think alike. I’m not willing to sacrifice on a “maybe”…Especially when I’ve read over and over again that this thing comes back after suffering for almost 2 years. I know I would become very depressed and despondent, if I were to become permanently damaged by these antibiotics i.e. Blindness, deafness, nausea and extreme fatigue not to mention any other horrendous side effects for 18 months. I’d have to be admitted to a psychiatric ward and I probably would be thinking about not wanting to be alive living like that. I am extremely afraid of suffering. I’m not willing to take the chance of what those horrendous, heavy duty antibiotics could do to me. Like you said if there was a guarantee that it would be gone completely, it might be something to consider… But from what I’ve garnered from peoples blogs, as soon as they stopped it even though they tested negative towards the end, it came back again. I kind of feel like everybody is just a guinea pig, because they don’t know what else to do to treat it at this point. I know they do a lot of research on this topic; and maybe someday they’ll come up with a better plan …but until they do I’m not willing to swallow poison every day And get sick so badly that I wish I wasn’t around anymore.