Questions to ask at your first appointment after diagnosis

Hi Coco1970, Did you get your appt moved up from December? I know it can be frightening to feel terrible and not really know how to try to fix it. Hopefully, your dr has experience in treating bronchiectasis. That would be the first thing I'd ask about. Experience! Next, I'd ask for more details about your right middle lobe. I am curious about that one myself because my right middle lobe is just about obliterated from years of infection and no proper treatment. It seems that most of us in this group has issues in that area of the lung. I wonder why this disease always attacks that first? Have you had a sputem test recently? if not, insist on one of those complete with a suseptibility test. You may have a specific infection, whether it be mac, mai, or pseudomonas, pneumonia, or some other thing. Once you have the answers to that, then formulate a treatment plan. I think for right now, you should cross that bridge when you get to it. Ask your dr about using 7% saline in a nebulizer, has he/she ever heard of that as part of managing infections. Have you ever been tested for GERD? (acid reflux) Please scroll to the top of this page and click on GROUPS, then a dropdown will offer a choice of Member List, click on that and look for @katemn, and click on her. She is a past mentor that has lots of info in her posts. Meanwhile, I will see if I can find a list of questions she may have posted several yrs ago. Just hang in there, I feel certain that you will get a grip on this illness and get your quality of life back.

It’s so hard when you’re new and don’t know what’s your Bronchiectasis and what is something else. if you’ve touched base with your primary care physician about this episode? It may not be related to the Bronchiectasis. I don’t mean to alarm you but if your pulse oximetry numbers are alright it may not be your lungs. Your physician may suggest a cardiac work up or something else totally separate from the new Bronchiectasis diagnosis. You definitely did the right thing moving your appointment up with the pulmonologist and what can it hurt to touch base with your primary care doc? All the best! Beth

Terri, I read somewhere that the right middle lung lobe and the left lower lobe (lingula) are affected more often with NTM/MAC because the bronchi from those lobes enter the larger bronchi at a somewhat downward angle which makes it harder to move mucous or sputum upward where it needs to be going. Another reason to do good airway clearance every day if you have bronchiectasis.

@poodledoc, Interesting, I have it in lower left, maby I need to do bigger breaths to get the saline into these. Take care Heather

What did your doc think about the sudden onset of these symptoms? It is very concerning to me that you have to wait after experiencing this since this is not typical for bronchiectasis...maybe even check with your medical doctor. I would think they would see you right away.

I have had such a hard time since the end of October. After the first episode the only thing I could think of that had changed was that I was reaching the two week mark on being on Flovent. The pulmonologist told me to quit taking it. I did and felt a little better for a short time but then felt worse again. My appointment in November ended up being with a PA in the practice who told me to start back on the Flovent and prescribed an Aerobica device. It was a little disheartening. He was looking at my C/T scan for the first time as he was showing it to me. He said my esophagus sits funny and I have a small hiatal hernia and that aspiration is most likely the cause of the damage to that lobe. After I started taking the Flovent again I got worse and between it and the vibration of the Aerobica device I was having to sleep with my neck in the just the right position because I had swollen tissue in my larynx. Luckily, I was able to keep the appointment with the pulmonologist at the end of December. He has started me on Singular and we have a follow-up appointment at the end of January. He said we will most likely schedule a bronchoscopy and another C/T scan then. I also have an endoscopy schedule the fist week of January. I know I need to get this done but I am so scared to go under anesthesia right now. I have terrible pain in my upper chest towards my shoulders and behind my right shoulder blade and if I do even a quarter of what I was doing prior to the end of October I have to use the rescue inhaler. The pulmonologist also ordered bloodwork that came back with a low level positive on the ANA test. My GP prescribed me nebulized budesonide after speaking with the pulmonologist but I just started it on Thursday so I'm not sure if it is going to help anything. I had an echocardiogram and everything was normal on it. It is so frustrating. I know something has changed. I'm not sure what everyone else's experiences are with this. I was thinking it would be a gradual decline with some ups and downs. I have been to the ER 3 times since the end of October with tingling toes and fingers and my calves and a few tremors in my left arm.

Hi @coco1970 ,
I am sorry you are still feeling so bad 🙁 .
I absolutely dreaded the anesthesia of my endoscopy because I was having so many symptoms and I don't do well under general anesthesia, but I talked with them about it and they assured me what they were using would be better (than my first one a couple years before done at the same time as a colonoscopy). And it was a very pleasant surprise and really a breeze - so don't get discouraged! I had mine done at Idaho Gastroenterology. I also had been to the ER twice before any of my diagnoses, and I always walked away with no answer and feeling so discouraged - like they thought I was a nut job.
I also have a small hiatal hernia, esophagus issues & aspiration, with some intestinal issues and stomach pain that frequently causes pain in my chest and behind my shoulder blades. I agree about the frustration!!! It is so painfully slow ruling out one thing at a time, and not being sure or finding one answer. Other than bronchiectasis & MAC, I don't have an answer for my gut issues yet.
But with each test and appointment you are learning a little more, ruling in or out things, and making at least a little progress.
Like you, I wrack my brain trying to think of what I did differently or what changed 4 years ago, but it changed suddenly when I had a bout of hemoptysis and I have not felt the same since. Not to say that it hasn't improved, I just have to deal with a new normal. I still tell my husband that I'm probably dying on a regular basis🙄, but I'm still here 😁.
I will say a prayer that your endoscopy goes smoothly.

Thank you so much for this reply shooei. I was going to cancel the appointment for my endoscopy today but that little boost of encouragement has given me some needed courage. I am also going to Idaho Gastroenterology and have heard many good things about them. I also have an appointment with an ENT and am hoping it can shed some light on my throat issues. I keep thinking this is all in my head but the reading on my CPAP machine the morning after the last episode tells me that something is definitely closing off in my throat. I think that is the hardest thing about this diagnosis. It is not just one thing we are dealing with. It is the cause and also the effects it is having on our other organs/systems and trying to keep up with it all and decide what should be dealt with first.

The last time I was in the ER they gave me hydroxyzine which helped the swelling in my throat but I think the intent was to calm some of this crazy! My husband and son can relate to your husband. I keep seeing sideways glances wondering when I am going to think I am dying again and getting ready for a mad ER dash.

Have you had a bronchoscope? I think this is what is frustrating me right now. I have had such bad reactions to the medications that they are using to treat symptoms but the talk of finding out and treating whatever is in my lungs has been minimal. I think my sudden down turn coinciding with the time I began taking the first medication has left me a bit untrusting. I am usually a people pleaser and would have thought myself to be a good patient but I am really struggling with trusting in anyone right now.

I am so thankful for you and everyone on this forum. It is encouraging to know I am not alone and read about everyone else's struggles and successes in dealing with this disease. It is especially nice to hear from you, as I know you are living in my area.

@heathert. Hi Heather...thanks for planting the seed of deeper, bigger breaths while nebulizing. I started doing belly breathing and holding the saline in for a count of 8 or so. What an amazing difference in the junk that I am able to expel. Wow! It has been productive since I started this and I must say it is still at least 5-10 times more sputum than with regular breathing. I started slow with maybe 10 belly breaths and at first it was a little difficult to belly breathe and hold it but now...easy peasy and such clearance!! Thanks for your brilliant thought! I read you were having cardio issues...sorry! I hope you get them worked out and feel better in the new year!! xxoo Kate

I hope the endoscopy went well! I have not had a bronchoscope. Well, now that I say that, when I coughed up blood clots they snaked a thing down my nose so I guess I have. Haha - it's crazy, with all this crud you actually start forgetting! I was pretty nervous about that as I thought the numbing might make it feel like I couldn't breathe, but it was really easy.
Let me know how the ENT goes. I need to see one, but just haven't had the energy to find a good one.
I REALLY get the trust thing! When nothing is helpful, and my GP just started throwing drugs at me (I don't do well with meds and avoid them if at all possible), I started feeling like I had to figure it out on my own and that is exhausting and discouraging.