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In shock after MAC diagnosis
I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot...have been doing it for years. This year we had a new mulch supplier...... I could use a pep talk, if anyone has that for this!!
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@tinasims, Hi Tina. That is good news about your cousin's husband doing so well after his lung transplant. They have certainly come a long way over the years with that. It is sad about his wife though. That is pretty common for caregivers to neglect themselves though. For one thing it can be very exhausting & stressful lcaring for a chronically ill person. As we all know, stress can also bring on illness. (As for colon cancer, it can come on with zero signs, that is why colon screening is so important.)
@rmason Raising monarch butterflies! How do you do that? Can you post a photo? That sounds amazing.
@kp5450121 Hi Karen. How are you doing today? I am sorry for the delay in getting back to you, but I have been battling the flu or some sort of bug for the past week. The good lung transplant place in Ca., is at UCSF Medical. They have exceptional long term survival rates of lung transplantees. I am still trying to connect with a man in Ca to find out exactly where he went for his. He was initially turned down by just about all hospitals to do his transplant because he would not change his lifestyle (heavy drinking) One place did agree to do it for him, and he is still doing good after 13 yrs. I do not know him personally: he is a brother to a friend of mine up in N.Y. Have you made any appointments since your last post?
Could I please get his name if he would contact me,I REALLY need
TRANSPLANT,I have no life for now you can private message me. Karen HARRELL I
GOT COUPLE OF QUESTIONS FOR HIM. Thank you so much and thanks for
remerbering me. Sorry you been sick.
Just wanted to pass along that On Sept. 2 I was asking what "toby" was short for. Now have begun nebulizing with it. I had my first sputum results come back after starting with a different doctor in August. My sputum shows it is "growing a lot of Pseudomonas. There are 3 different colonies of this bug in your sputum, and 2 of them are resistant to Levaquin." I had been given Levaquin for Pseudo. A. this spring after bronchoscopy and thought it was gone because cough completely disappeared. Not sure if it was gone or just suppressed and came back. The specimen sent in a few weeks ago was the first one I was able to produce since spring. My doc had ordered the antibiotic cefTAZidime 2 gm injection (IV) every 8 hrs which I began yesterday after getting a PICC line placed. I will self administer the IV ceftazidime for 14 days and inhale the Toby for 28 days. Next will submit sputum to be checked. Has anyone else had experience with this treatment?
Hi, everyone. I have a question. I have nodular MAC disease and my only symptoms are shortness of
breath and fatigue. I walk two miles every morning and am 86. That said, I have bad allergies. And I
get nasal congestion, debilitating fatigue...even chills and aches. I am wondering if an allergy attack
can trigger MAC symptoms? Thank you and best to you all. Elizabeth
My guess Elizabeth is that it’s not so much that it triggers MAC symptoms, but that your immune system is under attack with allergies and that in and of itself gives MAC an edge. MAC is an opportunist infection and will use any “opportunity” to make itself known. I am 70 fighting this and think you you must be one strong lady at 86! God bless you real well. (Irene5)
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3 ReactionsHello. I am just finishing my first 28 days of Tobramycin and I feel like I cough more now than before also. Any type of exertion causes me to cough. I plan on getting a second opinion. I have a question for anyone taking Tobramycin thru a nebulizer. Do you do albuterol and sodium chloride thru the nebulizer before taking the Tobramycin? That’s how I was told to take it and to wash and /or change my mouthpiece between. Can anyone else tell me the steps you take? Thanks! Donna
I tried toby more than once -- could take it for maybe two weeks and then breathing problems happened for me. It was scary. I went up to Mayo's before starting it because that's what Dr Moua wanted me to do so they could try it and be sure I would not have that problem. I did fine up there but of course it was only one time for about 20 minutes. Yes, I did saline and albuterol prior to using it each day (that's what I was told to do also) but eventually, it was just too scary. They had me stop it and I've had no replacement. Would love to find something else that might kill pseudomonas. That's my big problem.
I'll just say Dr. Moua told me that many people had MAC and didn't know it and unless it bothered them, there was no need to treat it. He went on to say that he might have it -- he didn't know because he'd never had a reason to be tested. So..... I've tried to keep that in mind and perhaps not run toooo scared if indeed I have to try to treat it. Other doctors seem to jump on it immediately so I don't have any answers -- just saying what I've been told at Mayo's.