Connect
One Week in Hospital/Two Bronchoscopies!
I spent a full week in the hospital several weeks ago. It started with a scratchy sore throat on a Monday morning...which scared me because I knew what was probably going to happen. I just happened to have an appointment with my pulmonologist that day. Told her I was scared. She upped my prednisone, and said to hit the sinus flushes in addition to everything else I was already doing. By Friday it felt like it was breaking up. Then Saturday the breathing tightened up. Sunday morning I experienced something I have never had before and it was scary. After coughing and clearing absolutely nothing it would be a second or two before I could catch my breath. Went to the ER and got admitted. The doc asked if I was open to a bronchoscopy...whatever it takes. Monday morning's bronch didn't go as planned. The pulmonologist said he could clear only about half the mucous I was packed with. He said it had come up into my trachea. He had problems suctioning, my oxygen level dropping, and my trachea collapsing (bronchomalacia). I could breathe much better. Tuesday morning breathing was still OK but I could tell I was heading right back to the where I was Sunday filling with congestion. A different pulmonologist was on duty and said we should go back in. The second Bronch was Wednesday morning and she and I both felt good about it. She loaded me with mucinex and gave me a good flushing...breathing afterwards was great!!
At this point I have been out of the hospital 3 weeks and produced hardly any mucus at all. I feel better now than I have for as far back as I can remember. Here's what changed:
1. I had been on Brinsupri 10mg for about 5 months. The Friday before I went into the hospital I started the 25mg dose. So I doubled the dose on what was now a fairly clean set of lungs. May or may not have made a difference, I don't know???
2. The doc sent me home with a bipap, replacing my cpap. In the case of my bronchomalacia this may be a game changer.
3. I am still tapering the steroids. Received 60mg through IV while in hospital, Sent home with 7 day tapers of 40/30/20/10/ down to the 5 and 2.5 on alternating days. I start the 20mg tomorrow.
I'm not sure what is going on but at this point it is very good. Prior to hospital stay the mucus is what woke me up every morning and I had no choice but to get up and nebulize/clear. Since coming home I really don't feel at all like I'm congested in the mornings and could skip nebulizing all together -but I'm not!!!! Right now I am in a very good place. I just pray that it continues.
And now I really have to be a bubble boy. This was all brought on by something as simple as a sore throat!!!!!!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
How was your cough at night- dry, with scratchy throat or wet? I recently have this scratch in throat that makes me cough very often and also at night and when I cough I can not cough up anything. I am 8 months on brinsupri 25mg
@mpowers501 So interesting. Thank you for sharing. I have not been sick since my diagnosis but my NTM infection has caused A LOT of damage and I am concern about what that may look like for me with something as simple as a cold, let alone something worse like a flu or Covid, etc. It is good to be on our toes and seek care promptly and knowing others’ experiences helps to educate us for when we find ourselves in similar circumstances and may feel uncertain, or concerned with “over-reacting” etc. Great work getting yourself the care you needed and am so glad you are feeling better now. Phew!
@bayarea58 I have the same concern...."what that may look like for me with something as simple as a cold etc. etc.
I did have Covid (Feb. 2024) per ER doctor and took the Paxloid. I did not finish the full amount due to feeling better almost immediately. The only problem I had as a symptom with Covid was back pain...deep soreness and ache.
Other than Covid nothing else (Cold/RSV/Flu etc.) for years before the BE/MAI diagnosis and after the Covid of 2024.
I have not taken the antibiotics, as you probably know, and do have the low load of MAI...only. You mentioned A LOT of damage from the NTM infection.
So when you say a lot of damage due to the infection....Are you referring to what shows up on the CScan and or the PFT, Pulmonary Function Test.
I am so hoping that with not taking the antibiotics I am not doing any further damage than what was there to begin with...when diagnosed with BE/MAI.
So far, however, no pulmonologist is saying "worse damage." Next visit I am going to ask that he review the first C Scan compared to the most recent.
Barbara