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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .
Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.
I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!
As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!
You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine
Replies to "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..."
<br><br><br><br><br>Hi David! Congrats on the weight gain. I know how special that is to <br>regain some fighting weight. I too have gained and held on to 3 lbs. I am taking <br>this as a good sign. <br> <br><br>
<br><br><br><br><br>I too have bronchiectasis. I used to cough non-stop for years. Since I have <br>been on tobramycin, my cough is completely gone. I have COPD (severe range), <br>Pulmonary Hypertension (though not badly), Alpha-1 carrier of that gene, get <br>aspergillis fungal infection and MAC. I am a mess, but you'd never know it to <br>look at me, (until I tried to exercise, then o2 plumments to 80, even with <br>oxygen.) Most days I can function like a normal person, just not for very long, <br>I get severely fatigued. -Terri M.<br> <br><br>
<br><br><br><br><br>Hi Terry! I am sure you have already read the tips from others on a <br>possible schedule that would work when taking your meds. Have you tried it, and <br>did it make a difference? -Terri M.<br> <br><br>
Hi Terri, I'm sorrry to hear about the severity of everything. That must be rough to handle & manage. I was on oxygen 24/7 for 3 years & miraculously I was able to wean off. We have no medically based answer for it. Regardless, I still have plenty on my plate but that has been one huge blessing over the years. Most people don't realize the severity of illnesses or understand what it might be like. It makes it really hard. Although, when I was wearing oxygen 24/7, (I still do at night) everybody would stare & it was apparent that something was wrong & I hated that! People probably still stare when I'm doing poorly or on oxygen for short periods. So I don't know if it's worse to have people know & maybe try to be understanding or at least considerate, or if everything looks normal on the outside so nobody knows...?!? I guess both ways just awful. I just wanted to respond & let you know that I'm & sending you good energy! ~Jen
<br><br><br><br><br>Thank you Jen. <br><br>
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@david1952, David, so good to hear from you .. and even better to hear such good news! Good for you! Check in occasionally whenever you feel like it .. good news or whatever .. we are always here for you! Sending you a hug! Katherine