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phayslip (@phayslip)

Newly Diagnosed: Big 3 Side Effects Questions

MAC & Bronchiectasis | Last Active: Jun 27, 2019 | Replies (7)

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@sueinmn

Hi Peyton,
You are right – your journey sounds like what a lot of us have been through. My daughter is even younger than you – 39 – and has bronch, a diagnosis that took years. Her docs are looking for a genetic component, because she is the 3rd known generation in my family.
Susceptibility tests for your MAC are a must, else you are putting yourself through this medication torture with a chance it might not do any good. But the doc may just have started the typical regimen while waiting for the susceptibility results, which take at least 2 months. Definitely revisit the vision and hearing with the eye & ear docs. These should also be scheduled regularly throughout your treatment. As for the GI issues, I recommend a good probiotic supplement to help – not perfect, but better than nothing.

As for the future:
First and foremost, as the infection is brought under control by the meds, you should get energy back. In my view, the trick is to be as active as you can, even if you have to push through the fog/sluggishness.

Yes, bronch & MAC are lifelong conditions, but so is diabetes, rheumatoid arthritis, kidney disease… Every one of us will have health concerns as we age, the key is to manage them in such a way as to live your life to the fullest. That means saving your energy for the things most important to you, and letting other things go. It sounds like your two main concerns are needing to continue to work, and being able to do things with your grandchildren. To focus on those, you may need to let other things go – maybe gardening, cleaning, church or other volunteer activities, … need to be pared back or turned over to someone else. Shopping is an area that is easier then you might think to save energy – take advantage of the numerous on-line ways to shop, even including ordering groceries for delivery or curbside pickup (maybe on the way home from work.) Ask your kids for help – maybe play with your grandkids (even a board game or read to them) while their parents clean your house, do laundry, yardwork or chores for you – like you would help them if they needed it. If your home is too much to care for, consider downsizing to something more manageable.

Above all, if fear and anxiety are crippling you, get a little counseling – dealing with a long-term chronic condition is stressful, and gaining some insight and tools to help yourself can be a lifesaver.

Good luck to you as you undertake this journey. Keep living your life to the best of your ability and bring your concerns back to the group.

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Replies to "Hi Peyton, You are right - your journey sounds like what a lot of us have..."

That is excellent advice!

@sueinmn Thank you so much for your thoughtful reply. I will ask my doctor if susceptibility testing has be, or will be done. I visited my eye and ENT docs yesterday. The vision issue I am having is due to an overcorrected lens. Thank goodness! New lenses have been ordered. The ENT doctor was less helpful. He was unsure whether the increased tinnitus was due to the meds (but "they might be the cause"), and he decided to do another check in 3 months. His less than helpful response: "you may need to get a better attitude about it…. you might get used to it." Hmmmmm. I've had the tinnitus for 5+ years, and now it has increased to a million cicadas on a too hot summer day… pretty sure I won't "get used" to that….. but I'll try to get "a better attitude" about it. (Bless his heart.) I'll see the eye doc in a couple of months to re-check color vision.

I have thought about counseling for the anxiety, but I think I'm beginning to get a better grip on it. I am aware that so many people have much bigger problems than I do, and that if I keep at these meds, I may be much better in a year's time. I think the shock of finally having a diagnosis hit me hard, and the reality of it set in. I'm THRILLED to have a diagnosis. I know many of you can relate to that after years of feeling crummy…. I just didn't expect the additional layer of the "cure" making me feel worse for a time. No one else in my family has this, as far as I know, so I am very glad to have found this community for some support.

I guess more than anything, the energy challenge has bothered me. I'm fine to take pills regularly (I already do that for other things), but the pure exhaustion I've been feeling for so long is disheartening. I am already becoming an expert at saving my energy for the things that matter (made it to my granddaughter's 1st birthday, yay me!!! This is in contrast to being too ill to make it to my grandson's 1st birthday 3 years ago)…. but, as you know, sometimes "saving energy" leads to: "I'll just start over tomorrow, I can't make it out the door today." It's hard to push through that…. but I'm trying! I promise.

Thanks again, to you, and to others who may read this. I'm not a fan of "whining", but I HAD to get some of this stuff out…. Invisible Illnesses are difficult to explain to others, and now that my cough is somewhat better, people I've tried to discuss it with have looked at me sideways…. I SOUND okay…. I LOOK okay…. I'm not okay…. yet. Thanks for listening to me go on for just a bit.