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National Jewish Health Helpful Tips and my recent experience
I just returned from two weeks at NJH. IN A NUTSHELL…LOTS OF TESTS…..saw Infectious Disease Dr ..Dr Eddy….saw. Pulmonary Dr Daley….
****saw Gastro Dr who I wouldn’t recommend to a dog. He was harsh, arrogant, condescending, and I didn’t like one thing about him, his demeanor, attitude etc. If you want to know his name private message me…….I couldn’t wait to get away from him. They ought to unload him..he’s a bad apple and doesn’t reflect what NJH is all about, in my opinion.
I learned that my reflux could have caused the Mac. Aspiration into the lungs! Recommendations..get a bed where the head of the bed is at least 30 degrees on an incline, otherwise the stomach contents can aspirate into the lungs.
If you nebulize first, then eat. If you eat first, wait three hours before you nebulize. Don’t nebulize too close to bed time. Don’t eat three hours before bed time. I use 7% saline. I use Aerobika, I then use Ombra with aero eclipse xl cup by itself….all while I have the vest thing going….., I then use autogenic app for four to six minutes.
I purchased a Hill Rom. “THE VEST AIRWAY CLEARANCE SYSTEM.” I opted for the wrap, …the vest exacerbated my fibromyalgia. I use that with the nebulizing. It’s supposed to shake loose the stuff in the lower part of my lungs, Per NJH. $15,000.00. From what they tell me insurance will pay for most of it. I’m glad I got it. The company comes to your home to deliver it, and shows you how to use it.
THIS IS ALL SUGGESTED BY NJH because I am not doing the Big 3., which helps many people, but….there is no way my system could tolerate such strong meds…God bless those who are able to tolerate the meds and get rid of the Mac………it can come back from what I am told. In my case it would annihilate me….I can’t even take penicillin for a few days without getting deathly sick.
It is suggested I start aerobic walking daily……very important for lungs they said.
I have to avoid foods that exacerbate the reflux. Very important.
They told me I also have Bronchiestasis, which my local pulmonary said I did not have. I was devastated when they first told me about it,..it was a shock. Come to find out a lot of people with MAC have that too. This is all a process of adjustment, having a lung illness. I’m going to take all suggestions to help myself……religiously……..
I was given two sputum kits to send in every two months for analysis by NJH. Then I can request more in the portal when I need them. They consider me a patient now and I can communicate with concerns through the portal which is a comfort.
There were many other tests I had done. It was worth the trip, but I was exhausted. Grueling, but worth it!
The altitude in Denver got to me immediately, and I was extremely out of breath. I had to use oxygen the entire time I was there. It scared me, big time, but now that I am home in Georgia it is much better. Some people adjust and others have this experience there.
I see my new Mac Dr, Dr. Swenson, in Atlanta on July 20th, and will be in his care. He is friendly with Dr Daley……..and is thought highly of by Him. Dr Daley said he will be seeing him and he is going to discuss me with him, so I was grateful for that.
Overall, the experience was good……..worth the trip..learned a lot, they ruled out a lot……
I highly suggest that if you find an employee who is not treating you correctly you report them to the nurses immediately. The first respiratory girl sucked….she had her nose in her cell phone and was very rude to me. It was appalling how she spoke to me….I reported her and never saw her again. ALWAYS ADVOCATE FOR YOURSELF, NO MATTER WHERE YOU GO. There’s always at least one rotten apple in the batch…don’t let ‘em get away with it. It’s YOUR LIFE, YOUR HEALTH…..stand up for yourself.
I’m glad I went, but more glad I can see Dr Swenson from now on in my own neck of the woods. In my opinion, most pulmonaries are ignorant when it comes to Mac and Bronchiestasis..at least my local drs are…so find someone who is knowledgeable.
I hope this was helpful to you and would be happy to share any of my experience with you if you have questions. I’m sure every persons perceptions are a little different, but I hope this will somehow be helpful in some way. Bon
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@rstel7272 I had Cavitary NTM and could not even take antibiotics for 2 weeks.I had a Robotic, wedge, lung resection done at NYU . My 3 cm mass was totally encapsulated and easy to take out. I was told by the surgical team that antibiotics never would’ve worked anyway, because it never would’ve penetrated the encapsulated mass.. I had no symptoms before surgery and have no symptoms post surgery…… My NTM was found on an incidental finding of a chest x-ray.
I will be following up within six months of another CT scan ….other than that no meds, other than treating my asthma. I do have acid reflux and was on a PPI for many years, and now have developed gastric polyps as a result of taking PPIs.,so I stopped .I am not sure of the relationship with acid reflux and NTM but I will ask pulmonologist today at NY U . There is a dedicated team that worked with this disease at NYU in New York.
@ahs389 I was at NJH in Oct. 2023. As we know all patients are different in their approach to matters and all doctors are different in their approach to matters. We have to remember that many times in our dealing with medical professionals. My experience was seamless and I was pleased with the doctors.
My understanding is that if tests are welcomed however they should not be older than six months old. So if you do go, it could give you more insight, be sure to ask and find out about acceptance of your tests and test results that you mentioned a bit before you go. Sometimes it takes time for one facility to send to another facility and as well we have to stay on top of it to make sure the facility sent and the facility received.
Barbara
I also go to NJ H Denver and asked my ambassador for another ID doctor being honest why( phone pinging, he checking the phone every time, leaving the room to make a phone call, leaving me with a brochure to read about side effects of brinsupri). Yes I was nervous about the change and what to say if the new doctor asks me why I switched the doctors, but he did not ask. So now I am with Dr E.
I have MAC, BE, maybe COPD.
Found this out little by little.
Different information from different doctors.
I had to go off meds because WBC became so low.
NP called me after blood test and said best to stop.
My Pulmonologist said which antibiotic caused the problem?
Try one at time.
ID doctor said no they have to be taken together.
This is confusing me because on this forum a lot of you have started them one at a time.
I noticed some people here have to stop a certain antibiotic yet keep taking the other antibiotics.
If I mention Mayo forum I get eye rolls.
The egos of professionals are fragile.
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1 Reaction@lilianna Dr. McShane recommended me to Dr. E. if I was thinking of going back up to NJH.
So far I have not needed to return due to all going well, overall, for me here in OKC.
Hope you are doing well lately.
Barbara
@sheila7a We are all different and as well different doctors, medical people, all have their own thoughts and beliefs just like us.
I go with what I feel is best for me after listening to them, researching, listening to others experiences etc.. however, I am 83 and truly believe with all the decisions I made in life for me medically, so far, the decisions were right for me.
If you feel you know your body well, how it has done and reacted, etc., you might go with your gut opinion for yourself????
Barbara
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3 Reactions@sheila7a sheila join Lung Matters and follow their protocol. It saved my life not the doctors.
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4 Reactions@healthybon
Good to hear from you! Was wondering how you were. What in their protocol do you feel made the difference?
@healthybon Welcome back, will you please explain what you are doing differently compared to the protocols we all discuss and recommend on Mayo Connect?
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2 ReactionsHi Sue...
I am nebulizing 2x daily with 7% saline (sodium chloride)....I do nasal rinses daily with NeilMed Sinus Rinse...I purchase a box of disposable, sterile 30 ML Syringes Luer slip from http://www.bhsupplies.net. I think you get 50 in a box which is isn't bad at all..and they are reasonably priced. After one use, I toss.
I do what is called the "squeeze". It is a clearance technique I learned from Lung Matters. They have a tutorial/video on their site showing how to do it by Kelly.....who runs the site.
Ever since I have be doing the squeeze...for the past three and 1/2 years, I have had no infections except NTM. My sputum samples say normal respiratory flora. Nebulizing alone I have discovered is not enough. When the squeeze is done patiently, and properly, the technique slowly enables me to get to the very deep mucus out , on a daily basis. The gunk that comes up is disgusting looking...but because I get it up and out daily..there is no home for that nasty bacteria to grow infections....no lingering mucus inside.
Previous to doing the squeeze, I was hospitalized two times, about four years ago; because I was only getting out the stuff that nebulizing enabled me to get out. I had infections that required a cocktail of antibiotics that were administered via IV. I had to do it in hospital because my stomach can not tolerate them. I had many bouts of C-Diff prior to these two episodes and luckily that did not happen again. C diff sucks....
I tried the big 3 and could not tolerate it. I felt deathly sick, and was not willing to give up my quality of life just so I could take the meds.
My personal opinion....which is just my opinion, is that Mac usually is here to stay. If it goes away, it morphs back into a different strain...and the suffering from the meds is in vain. The good news is ...NTM can be managed with proper clearance on a daily basis. I have bronchiectasis also.
I stay active..as much as possible.......I take guafineson prescription, and if I am really congested, I nebulize with Levalbuterol. I can not do it often because of side effects, but in a pinch it really works.
I boil ALL OF MY DRINKING WATER..I use distilled from the store. I boil for at least 10 minutes sea level.. I sterilize my Aerobikas, and cups in boiling water for ten minutes, and only use them once... and then sterilize again. I put them in a Bololo bottle dryer/sterilizer, set it on dry only and dry all my equipment......I use an Ombra Nebulizing machine.
My last three CT scans have been good and many of the plugs have gone away. My bronch has not progressed. My pulmonary dr...Colin Swenson in Atlanta, was very impressed at what he saw at our yearly visits.
I initially went to the National Jewish Hospital in Colorado when I first found out I had NTM. All they wanted to do was give me those meds. Their mention of clearance and the importance of it was practically non existant. SHOCKING.....
I had a bad experience there..the respiratory therapist wanted to hang my neb equipment in a bag on the wall and not replace it each day...I knew better intuitively that bacteria GROWS..which we do not want. She was arrogant and so was my doctor...I couldn't wait to get the heck out of there....I insisted on new equipment every day and the therapist had an attitude you could cut with a knife. I complained about her and never saw her again. We have to be our own advocates..Many people are ignorant in the respiratory therapy profession...I will never understand that. I mean, what do they learn at school, if not the importance of sterile equipment?
Everything I have learned in terms of NTM and bronch has been through Lung Matters.
Regards...Hope you are feeling good. Bon
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