Questions to ask at your first appointment after diagnosis

Posted by Echo R @coco1970, Nov 17, 2020

I was diagnosed with bronchiectasis in October. My first appointment was not supposed to be until December but at the end of October I was on the treadmill and experienced severe shortness of breath and a racing heart rate and I have not been the same since. I have called and gotten an appointment earlier because I feel like I have damaged something in my chest. I have gone from being able to walk/jog 4 miles at least 5 times a week to not being able to do light chores around the house without getting breathless and having such a heavy chest at night that I can’t sleep. I thought I was going to have more time to prepare for this fist appointment to do some more research. What questions are important for me to ask on this first appointment? I am so uncomfortable right now that all I am thinking about is getting some relief from whatever I have going on right now. Any input will be much appreciated.

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.

Liked by migizii, Echo R

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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

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@windwalker

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.

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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.

Liked by heathert, migizii, Echo R

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

Liked by alleycatkate, Echo R

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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.

Liked by Echo R

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@windwalker

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.

Jump to this post

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.

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@coco1970

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.

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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.

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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.

Liked by shooei

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@heathert

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

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@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

Liked by shooei

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@coco1970

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.

Jump to this post

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.

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@coco1970

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.

Jump to this post

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.

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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

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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.

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@cmi

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.

Jump to this post

Wow you’ve been through a lot as well similar to myself , pain in the lung upper right lobe for months which I still get at times I went to a pulmonologist only cause after I was sick with a very bad cold they told me I had pneumonia in Dec 2019 last year so they put me on antibiotics and did a repeat X-ray which showed fuzziness so they put me on more antibiotics and predisone so few weeks later I did a ct scan which showed more fuzziness so few weeks later more antibiotics and predisone my dr was like hmm not to scare you but it could be cancer he then also did a PET SCAN as well then wanted me to go for a lung biopsy This past JUNE which I did and let me tell you that was very painful they have you up and lightly sedated you feel it all . I was so upset I was sick for weeks about the whole thing all they told me was it wasn’t cancerous thank god but there’s nodules then he sent me to a thoracic surgeon to see what his opinion on this whole thing was and they both agreed to get in there and CUT IT OUT! I said to my husband off to the city we go I need to know the truth and if this is the right thing . I then saw a dr in Manhattan very nice great dr and he recommended I do a bronchoscopy which I did this past August and he then discovered MAC /Mai he told me to follow up with a pulmonologist so the first pulmonologist I didn’t trust anymore so it took time to find another and about a month ago I went to one and that’s when he looked over all my paper work he said yes you have Mac so he said you need to be on medication called Arikayce for 12-18 months I’ve been on it since Dec 16th I lost my voice it’s changed which is upsetting I’ve been drinking teas eating lozenges,This is all pretty new to me I am not going to lie I feel alone and none of my friends and family understand it all they are ok but sometimes I don’t really talk about it with family because I feel like I would be complaining and they just don’t get it.m or understand it all I hardly do imagine them they never heard of it and believe me I never did either . I just need to know and wonder if this will be a life time on medication will I ever get a break one day for a bit the not knowing some answers is hard for me so on this forum it definitely helps. I’m in good health otherwise before all this MAC I still can’t believe this happened I wonder how I got this I did work in 6 schools and 1 hospital hmmm maybe that ok well I would appreciate if you give me any feedback . I would love to hear about what you think thanks Jennifer HOPE FOR A GREAT 2021🙏 I sure hope you feel better as well what do you think about Arikayce fi you think this is my best option? It’s what my pulmonologist said for me to do .

Liked by migizii

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@coco1970

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.

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Yea you e been through enough I think you should go to a another pulmonologist and see what he or she thinks as well are you here in New York I would say go to Manhattan the drs there are awesome as well it’s where I had my bronchoscopy done have you had one to see exactly what’s going on inside your body? Let me know coco please feel better let us know how you are doing and what dr says

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