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Questions to ask at your first appointment after diagnosis
MAC & Bronchiectasis | Last Active: Jan 1, 2021 | Replies (23)Comment receiving replies
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.
Replies to "I have had such a hard time since the end of October. After the first episode..."
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 âout of the blueâ 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 âaging/menopausal â)....and oh! Finally labeled âlate onset Asthmaâ 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 âdiffusedâ appearance. This is what is KEY...I insisted insisted loudly to my doctor...the Pulmonologist that was treating me for Late Onset Asthma...âIâm not waiting 3 months to repeat scan...I will go broke with the emergency visitsâ...he repeated that and scheduled the Bronchoscopy 2 weeks later. I have MAC and it has been 3 months and still no âsensitivity resultsâ 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 âwhy such a healthy women would allow MACt to invade?â. My ANA is positive, my CCP way high over the normal, so RA âcould explain the chest inflammation and pain?â 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 âfor progressionâ 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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Hi @coco1970 ,
I am sorry you are still feeling so bad đ .
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.