Questions to ask at your first appointment after diagnosis

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.

Echo1970...you have found the right docs...right here on this forum. Healers and Providers come in a variety of packaging...believe it.
My story sounds like You and I have impersonated each other. Here it is...
I am a 64 year old normal height and slender Woman...been active my whole life, walk/run/yoga/gym/...all. I too “out of the blue” noticed I was short of breath going up just a flight of stairs(I use to run up 5 flights as a medical interpreter in the hospital that I worked at 4 years)...my blood pressure would go up (distress from panic and lack of breath), headaches, tingling in hands, fingers, toes, 3 emergency room visits in 2 years...unexplained...work ups for cardiac...headaches...complained to my PCP my voice was weak and changed (labeled “aging/menopausal “)....and oh! Finally labeled “late onset Asthma” and put on inhalers (never ever had breathing issues or Asthma myself or in the family). The big event was this past summer during Covid...my cardiologist sent me to the ER suspect or a PE. Upon CAT scan they saw the lung involvement with a couple of nodules and a “diffused” appearance. This is what is KEY...I insisted insisted loudly to my doctor...the Pulmonologist that was treating me for Late Onset Asthma...”I’m not waiting 3 months to repeat scan...I will go broke with the emergency visits”...he repeated that and scheduled the Bronchoscopy 2 weeks later. I have MAC and it has been 3 months and still no “sensitivity results” back from Texas for the pathology. Meanwhile...my lower left lobe pain/discomfort is always present...my right middle lobe shoots sporadic spears of pain aimed at my heart. Total cardiac workup again...echo, stress tests...ultrasounds, r/o pericarditis...all good...my cardiologist swears that if all her patients had my diet...whole-plant based...no meat, dairy, etc...her office would be empty. My discomfort, pain, fatigue continued...while we were still waiting on pathology to report any drug resistance...I INSISTED on a full rheumatological work up to shed some light on “why such a healthy women would allow MACt to invade?”. My ANA is positive, my CCP way high over the normal, so RA “could explain the chest inflammation and pain?” I was started on the cocktail of 3 drugs by the ID doctor...again because they listen to my pleas...and I am at high risk “for progression” because of my low BMI. Idid contact JNH (Jewish National Health) at the suggestion of my ID doc...they should be first or last options...they wanted to repeat ALL the work my doctors have done over the past 2 years...I will not do that.

So Echo...it has been here...Personas...a God Wink of characters that by virtue of personal experience enveloped in much brain power, grit, consideration, and stewardship, are administering to each other. In this forum you will find the wealth of care and support (free mind you) that will help lead you and girdle you when you pass the threshold of any doctor, specialist, or clinic. Read, listen and research all that you can...from these persons...gifts from God.

Thanks for your reply and understanding cmi. I feel like I am at the point where I am going to have to start pushing harder or make an appointment at the Mayo or JNH. My family is urging me to go somewhere else because my decline has been so fast despite the fact that I am trying so hard to go back to some sort of normalcy and at least stable state. I am also a member of a Facebook group and found a post yesterday regarding use of inhaled medications on a podcast that I am going to make time to listen to today. When I went for my breathing test at the first of October everything was good. I passed with flying colors and I felt like the tech was wondering why I was there.

I seemed to get worse after the two week mark of being on a Flovent inhaler. This was prescribed before my C/T scan and diagnosis. I should have questioned the need more when prescribed as the my breathing had been fine up until then and I was functioning normally as far as my exercise routine and daily routine it was just a feeling in my chest like I had been exercising in the cold. A cold burn/heaviness in the center of my chest. My two previous visits to the urgent care had been diagnosed as costochondritis and treated with tapering doses of Prednisone which seemed to clear things up for three or four weeks and then it would start up again and so I was referred to a Pulmonologist.

I am wondering if somehow that inhaler opened things up and whatever was in the right middle lobe escaped and is wreaking havoc in my body. I was taken off the inhaler because I told the pulmonologist I thought I might be having a reaction and he put me on the next (3rd) round of tapering Prednisone to be followed up with starting Singular and twice daily nebulizing Budesonide. In the middle of the round of prednisone I awoke with swollen throat to the point I could hardly keep my mouth closed on my CPAP because the air had nowhere to go. I had another trip to the ER and they gave me Hydroxyzine which I think was to calm me down but it is also an antihistamine and so it helped my throat although they did a CT of my throat and found a small growth on my thyroid which they say is not big enough to worry about and an inflamed area that I am going to go and see a ENT about.

I notice when I am off any medication I start to get achy behind my right shoulder blade and at the top of my chest and out to right below my should blades and armpits. This starts to happen and I want to take something and I think they are running out of things to give me. I'm not sure if I have developed an allergy to steroids or if something has been let loose in my body and when I start taking something new the lungs feel better but I am allergic to whatever is being coughed up or moving better through my body. This sounds totally crazy as I am typing it but that's how I would explain the scariest symptoms that I have....an allergic reaction and I'm just not sure if it is to the medications or something that is in my body. Despite the positive ANA the rheumatoid levels looked good, I was told so there was no referral to an immunologist.

I had another allergic reaction on Sunday night and was able to take an antihistamine at 4 a.m. and then again at 9 to calm things down enough that I didn't feel the need to go the ER but just barely. My throat was so closed off that I could hardly breath or swallow. I was able to make contact with my GP who spoke with the pulmonologist and they decided to have me stop taking the Singular pill but to keep nebulizing. I haven't taken a treatment since Sunday evening because I am terrified. My appointment with ENT is later this morning and I am going to see if he will prescribe and EPI pen before I nebulize again. Having said that though, I did take Mucinex yesterday and during the evening really went on a coughing jag that seemed more productive than usual and when I woke up this morning my throat was a little bit restricted but I am trying not to take anything until after my ENT visit. Can you become allergic to yourself. I have so many questions that have not been answered.

I really appreciate the support, input and encouragement that I am receiving from this group. I am hoping to one day be able to contribute something that might help someone else.

Thanks for your reply and understanding cmi. I feel like I am at the point where I am going to have to start pushing harder or make an appointment at the Mayo or JNH. My family is urging me to go somewhere else because my decline has been so fast despite the fact that I am trying so hard to go back to some sort of normalcy and at least stable state. I am also a member of a Facebook group and found a post yesterday regarding use of inhaled medications on a podcast that I am going to make time to listen to today. When I went for my breathing test at the first of October everything was good. I passed with flying colors and I felt like the tech was wondering why I was there.

I seemed to get worse after the two week mark of being on a Flovent inhaler. This was prescribed before my C/T scan and diagnosis. I should have questioned the need more when prescribed as the my breathing had been fine up until then and I was functioning normally as far as my exercise routine and daily routine it was just a feeling in my chest like I had been exercising in the cold. A cold burn/heaviness in the center of my chest. My two previous visits to the urgent care had been diagnosed as costochondritis and treated with tapering doses of Prednisone which seemed to clear things up for three or four weeks and then it would start up again and so I was referred to a Pulmonologist.

I am wondering if somehow that inhaler opened things up and whatever was in the right middle lobe escaped and is wreaking havoc in my body. I was taken off the inhaler because I told the pulmonologist I thought I might be having a reaction and he put me on the next (3rd) round of tapering Prednisone to be followed up with starting Singular and twice daily nebulizing Budesonide. In the middle of the round of prednisone I awoke with swollen throat to the point I could hardly keep my mouth closed on my CPAP because the air had nowhere to go. I had another trip to the ER and they gave me Hydroxyzine which I think was to calm me down but it is also an antihistamine and so it helped my throat although they did a CT of my throat and found a small growth on my thyroid which they say is not big enough to worry about and an inflamed area that I am going to go and see a ENT about.

I notice when I am off any medication I start to get achy behind my right shoulder blade and at the top of my chest and out to right below my should blades and armpits. This starts to happen and I want to take something and I think they are running out of things to give me. I'm not sure if I have developed an allergy to steroids or if something has been let loose in my body and when I start taking something new the lungs feel better but I am allergic to whatever is being coughed up or moving better through my body. This sounds totally crazy as I am typing it but that's how I would explain the scariest symptoms that I have....an allergic reaction and I'm just not sure if it is to the medications or something that is in my body. Despite the positive ANA the rheumatoid levels looked good, I was told so there was no referral to an immunologist.

I had another allergic reaction on Sunday night and was able to take an antihistamine at 4 a.m. and then again at 9 to calm things down enough that I didn't feel the need to go the ER but just barely. My throat was so closed off that I could hardly breath or swallow. I was able to make contact with my GP who spoke with the pulmonologist and they decided to have me stop taking the Singular pill but to keep nebulizing. I haven't taken a treatment since Sunday evening because I am terrified. My appointment with ENT is later this morning and I am going to see if he will prescribe and EPI pen before I nebulize again. Having said that though, I did take Mucinex yesterday and during the evening really went on a coughing jag that seemed more productive than usual and when I woke up this morning my throat was a little bit restricted but I am trying not to take anything until after my ENT visit. Can you become allergic to yourself. I have so many questions that have not been answered.

I really appreciate the support, input and encouragement that I am receiving from this group. I am hoping to one day be able to contribute something that might help someone else.

I admire your chutzpah!!!
What's the diagnosis from the Rheumatologist?
How long have you been on the Big 3 and how is that going?
Best,
Ellen

I admire your chutzpah!!!
What's the diagnosis from the Rheumatologist?
How long have you been on the Big 3 and how is that going?
Best,
Ellen

Ellen, I have been on the cocktail of 3 for one month....and doing great! I was terrified to start the regimen because my doctors & pharmacist scared me with pessimistic tolerance for the drugs and high dosages; however I felt I “had to toughen up and try”. I truly believe my diet has saved me the ill effects...I have always taken pre/probiotics, lots of fermented foods, no dairy, meats etc. I take Azithromycin & Ethambutol in am one hour before coffee..and Rifampin 2-3 hours after a very light dinner...no problems whatsoever. I’m thrilled. I only pray these meds do the trick...I don’t produce any (absolutely none) sputum...so unless that changes...I assume I will have to wait till my next Bronchoscopy to verify success.

Ellen, I have been on the cocktail of 3 for one month....and doing great! I was terrified to start the regimen because my doctors & pharmacist scared me with pessimistic tolerance for the drugs and high dosages; however I felt I “had to toughen up and try”. I truly believe my diet has saved me the ill effects...I have always taken pre/probiotics, lots of fermented foods, no dairy, meats etc. I take Azithromycin & Ethambutol in am one hour before coffee..and Rifampin 2-3 hours after a very light dinner...no problems whatsoever. I’m thrilled. I only pray these meds do the trick...I don’t produce any (absolutely none) sputum...so unless that changes...I assume I will have to wait till my next Bronchoscopy to verify success.