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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Sep 23 5:25pm | Replies (9357)Comment receiving replies
Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!
Replies to "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..."
Hello Jen, I know how you feel. Just hanging in there it will get better. whenever you feel frustrated and needs somebody to talk to, you can phone me. I will put my ph. number on your private message. We are all going through this situations scared and don't know what to do. You are not wrong about getting the treatment instead of waiting to get worse but if nothing shows on your CT scan maybe you have MAC but not active or colonizing. Think positive and have faith, I know that is hard to do but try. To make you feel better I will tell you about myself. I have been on 3 meds for 12 months now and I saw Dr. 2 week ago and did a CT scan and show a new nodules on my lower right lung. I was upset and told my Dr. that means the meds are not working. I was fine 3 months ago before this. I don't know what to do. Anyway, I will pray for you and try to think about something else besides our disease. God shower you with his Blessing. Always Cila.
To all of you, You are loved and appreciated. Stay strong and carry on!
Becky
Hello Jen!
So glad you came back to us. After reading your post, I can see why you would feel over-whelmed. Sending you a 'cyber hug' right now. Sounds like you and I have similar situations with co-morbid diseases going on. Whenever I get multiple complications; I like to divide and conquer them, beginning with the most serious first. First and foremost, the weight needs to come down, that would take a lot of stress off of your heart and lungs. Plus, you may find that the weight loss will help you to feel better also. Since you are not fully colonized with the MAC, ask Dr Askamet about putting you on an alternating anti-biotic as a prophelactic treatment to prevent colonization. I did that for three years and it kept things in check. One month on cipro for ten days, then the next month on doxycycline for ten days. Did this for three yrs. I am thinking that can stave off full blown infection while you deal with weight and heart. (btw, it was a MAYO Dr that put my on the alternating antibiotics.) Set a realistic goal for your weight. Consider losing in increments, maybe post an image of someone a little smaller than yourself on the fridge. (that always worked for me when setting goals.) Don't fret about losing a lot of weight to the point of being very thin; having fighting weight is a good thing, just not too much of it. My comments are just suggestions. Always run such suggestions past your physician before acting on them if you choose to try them. We all have diff circumstances with extra details, so always check with a dr.
I know how badly you feel. I too was sick every day for ten yrs.Went on disability in 2007. I used to not be able to walk to another room in my house without having to sit down and catch my breath. I walk several big blocks in my neighborhood, ride my bike four miles, and do aerobics (with oxygen) for one hr, three days a week. Yoga is another great thing to do to improve health, some yoga forms deal only with the breath, it may be called 'PRANA YOGA' not sure tho. I promise they don't make you into a pretzel!
Question: are you coughing a lot? That may be an issue you will want to illiminate so that you feel good enough to take on your wellness journey. Jen, we are here for you. Please check in and let us know how you are doing. Big Hug - Terri M.
Hi Jen, me again. I left out something about myself. I went through pre-qualifying tests for a double lung transplant last Dec. I am trying my best not to need one; but that is how serious my lung issues are. Eating healthy, exercise, keeping your lungs clean like doing the inhaled saline twice a day, etc. When you find a great dr, follow their directions to a tee. I am currently operating on 1/3 of lung function, but I feel like a million bucks now. Ok, that million bucks is compared as to how I used to be. My current 'million bucks' could never run a marathon and gets hit with awful fatigue every afternoon. (and sometimes whole days of fatigue). Attitude is everything. Try to be positive that you will turn your health around to the point of living a natural lifespan. We cannot cure what we have, but we can slow it down considerably.
Thanks Becky! You too girlfriend!
Cila, sometimes the nodules are due to the type of bronchiecstasis you
have. There are several types. It may not be due to the MAC and the drugs are
working. Just a thought.
Absolutely!
Hello Jen, we are all here for you, and we really DO care! - Hugs Terri
M.
Hi Jen, yes....me again. I replied to one of your posts earlier this evening. I am hoping it did not come off as trite. After reading this post to Katherine; I have a better understanding of how much you are dealing with. Did not know you were battling diabetes too on top of everything else. Or that you were hospitalized recently with respiratory failure. Good God woman, who could fault you for feeling so desperate? Dealing with chronic illness is tough. I am sure you are tired of feeling sick and tired. I sure hope you get answers soon to what is going on with your lungs. My heart and prayers go out to you. - Terri M.
Connect
Dear dear Jen Taylor.....I am sending the white light right now to you so that you get a smattering of hope and a pinch of energy!!!
Feeling discouraged /down is a totally appropriate feeling for what you have been going thru these years.....and added to the mixture is the unknown of the future. It is sooooo good you feel comfortable with us and can express how you are feeling!!! I speak for myself...and probably many others in the group...when I say we not only sympathize but totally empathize with You!!! Our dear Katherine would I am sure direct you to do something soothing .....music...a movie etc and a big pat on your back for amazing problem solving and seeking for the best route for optimum care!
Tdrell