At NJH and need to vent

I was diagnosed in 2010 and tried the Big 3 twice. I failed both times. The side effects were too debilitating for me, and I discovered I am allergic to azithromycin and rifampin. Yes, my doctor wanted me to take them and still wants me to try to take them. Fortunately, he has allowed me to make my own decisions about my body and my quality of life. I have managed with airway clearance to see only a slow and/or stable progression. That's not to say that I haven't had a few terrifying episodes of hemoptysis when I've had a flare of one strain or another (and this is why the doctor would like for me to be on the Big 3). I have bronchiectasis and have had many different strains of NTM (and I've always figured some combination of those things meant I had COPD...funny, but I've never asked). At present (as far as I know until my next sputum sample), I am positive for kansasii (a slower growing strain). I am a non-productive cougher who hates airway clearance but I do it anyway - with 7% saline solution - once a day, not twice as instructed. In my experience, Dr Daley is a kind and caring physician. I hope that is your experience as well. Being there for the evaluation period is so very stressful...I'll be sending good thoughts your way.

Hi there, your response has brought me great comfort. We both are very sensitive to meds it seems and I TOTALLY understand where you are coming from. The thing that gets me as I read more and more on this blog is that a lot of people take the big 3 for like 18 months, they develop tinnitus, horrendous fatigue and flu like symptoms, and sight damage not to mention nausea and quality of life. Then, when they stop these meds, the mac comes right back again. I KNOW, without a doubt, that I would not be able to tolerate the big 3. I was prescribed amoxicillin recently which I used to take in my youth with no problem. After two days I had to get off of it (I’m 72 now)…it made me sick as a dog and I developed a wicked case of oral,thrush that took me forever to get rid of. Bon

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.

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.

I live in Florida and I tried to get in Mayo and they had no availability so, I chose to go to NJH.

Bon
I well remember my terror at the need for treatment- it is so easy to get very anxious when you hear about the potential side effects. My three years of treatment were not easy but I adapted and life was pretty good in spite of the inconvenience and blips along the way. I do hope that you will allow the doctors and science to guide your treatment decisions and recognize that our emotions can make things worse than the reality
Most people do get some variation on fatigue and GI symptoms, but other side effects are infrequent and medications can be changed or adjusted
About 50% relapse after treatment but not everyone needs to take medication again.
Leaving MAC untreated can also be dangerous if you are at a point where you have symptoms or lung damage is progressing
Please keep an open mind and learn all you can about what will be best in your particular situation.
Good luck with finding clarity and the best path forward

Do you get scared when you get a little breathless. Everyone tells me it’s cause I’m not used to the altitude in denver coming from Georgia. They put me on oxygen,…..the only time at home I feel that way is when my costochondritis ( ribs) act up..but here I feel it much more. All the technicians and nurses say it’s that I’m not acclimated to mike high elevation. Dr Eddy said it’s from the Mac etc…so now I’m scared……who dini believe?

Hi it’s me AGAIN. This is all new to me. Six months along. I’ve been praying and asking God to help me not to be afraid. When I get a little short of breath it freaks me out. Can you give me some mental tips to combat it. When my costochondritis is active (which it is): I get that breathless feeling cause it’s all inflamed in ribs and then it subsides when that calms down. Also the altitude here causes it….so I’m using the oxygen they gave me. I wish I could just ignore it and go about my day. I think I have a fear that I won’t be able to breathe. I wish they had psychological counseling at NJH, cause it’s a big part of all of this..to have this happen to your lungs.
When you get breathless at times how do you deal with it? I have way too much fear………and no one to talk to about it. My life is so different now…….I know I have to have acceptance..it’s the breathing thing that is scaring me……any suggestions? I feel like the people on our blog seem to have adjusted to this aspect..they don’t talk about the fear thing /and the breathing much. Why am I so terrified. Thks Bon

I plan on doing the reverse and relocating to the gulf. I have not applied yet, nut after 5 years of this, waiting some should nor be an issue.

Bon,
First off, I do hope the Denver visit has improved for you. I have just returned from my 4th trip to Denver in less than 2 yrs. The altitude always bothers me, since I live at sea level in CT. A week visit is not enough for me to get used to it. I feel they downplay this out there. Just being there causes me anxiety! I also grapple with shortness of breath, and as you probably know the anxiety over breathlessness can makes you more breathless, a vicious cycle. I have learned breathing exercises at PT, most of which involve breathing through your nose and consciously slowing down your breathing. This requires effort but I think helps. I have not had other prof help although sometimes I think I might need it.
My experience at NJH reflects what others have said. I had surgery last summer out there at their recommendation, Tbe care was excellent and I believe it was the right thing to do. Coping with the aftermath at a distance has been more difficult.
The truth, as others have said, is that they don't really know the answers often with this disease. But they do know more than most other docs. I decided on this trip I have to find a team closer to home. It's good that you have someone local to see who is knowledgeable. Good luck with everything.
Chris