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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI......multiple tests. My local pulmonologist sent me to local ID doctor in OCtober......but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks.....
I do not show indications of the infection hence do not require treatment.
The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much...I dont have the typical NTM symptoms....fatigue,chills,weight loss,fever....only the cough and mucus.
The final outcome after tests and analysis:
-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ....weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think.....had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell
Replies to "Folks here is my report after my 6 day workup at National Jewish Health for MAC..."
Thanks heathert....I felt sorta guilty sharing the news with the group....but I guess my experience makes the point as Katherine keeps telling us " Go to the experts".....even my area which has a decent quality of medical care, I would have been started on the MAC meds without proper proof. I have to remind myself, the three separate day sputum specimens have 5 more weeks to see if colonies of MAC appear. So then I will be assured of not having MAC. TDrell
Dont feel guilty, its great to hear some good news. All the best for your next sputum.
@tdrell, Terri, you have ZERO need to feel guilty! What YOU ARE is an inspiration to ALL!! A PERFECT example of someone who came on to our Forum REALLY concerned .. THEN read all the past pages of the Forum .. educated yourself .. did your 'due diligence' .. THEN became your OWN BEST ADVOCATE! YOU my dear are our HERO!! We are SO proud of you!
Come what may after the 5 weeks of the sputum culture . YOU know in your heart that you have done absolutely the very best things possible for your health .. AND will continue no matter the outcome! PLUS you now have the tools to deal with whatever comes .. the antibiotic treatment or NOT! You have found a community of people who support you .. whatever the outcome! Sending you a BIG hug!
Katherine
All ....I forgot to include that Dr Huitt my primary Dr at NJH doubled the Vit D I take to 4000 units a day....MY lab test showed I was at 50 and she said she likes to see it at 100....i asked" for immunity?" She said yes. Tdrell
Thanks @tdrell, Terri That is is one of the testing I recommend .. it is common for MAC patients to be low on VD .. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.' Hugs! Katherine
<br><br><br><br><br>Katherine, has anybody told you today that you are AWESOME! Thank you for <br>the countless hours you give to this support group. You are a Godsend, and we <br>all appreciate you. HUGZ! -Terri M.<br> <br><br>
@windwalker, Terri, how nice of you to say that! Truthfully I think only my husband really knows how much time I put into it .. but why do I do it? Because I know that all of you would do the same thing .. because we ALL know how scary the journey was in the beginning .. and I know just HOW much easier I would have been for me in 2007 if YOU ALL had been there to help and support me! That is why I do what I do .. 'playing it forward' .. as you are all now doing as you jump in and try to help new people. We are all on this journey together .. I'm just blessed to be a bit further along .. a few steps ahead. But always aware those nasty critters are always 'lurking" in my lungs .. stable/BUT .. darn things! So again thank you .. I have put my heart and soul into this Forum since I was asked to be a Mentor .. BUT I have gotten SO much back from all of you!! SO MUCH!! Hugs to all! Katherine
<br><br><br><br><br>Hugs back!<br> <br><br>
Thanks for all you do for all of us. Even the silent observers like me. We learn so much from you and the forum. We can always count on it being here. So thanks! And know that You are appreciated and you are loved! Becky
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Lindam....concluded that the mucus and the evening only cough is from the GERD.....silent aspiration during day into lungs and at night as well as new diagnosis of the allergic rhinnitus( runny nose due to allergies)?
I used to drink gobs of water for my asthma....to keep mucus thin.....Gerd fluid restriction is 6 ounces an hour including yogurt ice cream....no eating 3 hours before sleep...no laying on right side when sleeping....anatomically it encourages fluid from stomach to go into lungs....i need to buy a new bed that the head elevates 30 degrees.
I am using most of restrictions and doing nasal wash and aerobeka and quantity of mucus less and lessened coughing in evening.
They say that my sleep apnea worsens the GERD etc...so will see Pulmonologist locally to get equipment etc for cpap
When I use my newly issued aerobika, to bring up the mucus from lungs, I can feel drainage coming from nose going to ??
My local allergist was eager to know the results, so that I assume he will see if the flonase nasal spray and singulaire and antihistamines will cover the nose issue tdrell