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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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Replies to "Echo1970...you have found the right docs...right here on this forum. Healers and Providers come in a..."

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 .