Recommendations for nebulizer machine

Good morning Linda, thank you for responding and sharing your advice on how to disinfect the Aerobika with manometer safely. My dad did get the OMBRA with Aeroeclipse from Tampa Specialty Pharmacy (TSP) last week and we were glad to see it came with 2 Aeroeclipse nebulizers because it provides him peace of mind in case one suddenly fails as his mesh nebulizer did after only using for 2 weeks! My folks live in St Pete during the cold months (I’m on an extended visit) so we just drove over to TSP to pick it up so he could get back to neb’ing again (sooner than later) after the other abruptly stopped creating vapor and started dripping from the place he connects his mask. TSP definitely seems to offer the lowest prices on these items (including Aerobika) and I’m also glad they allow customers to pick up items rather than wait on the mail. We are so very appreciative of people like you and others here because this is all so new to us. While I don’t believe my dad has either MAC and/or Bronchiectasis, like many here seem to battle with, he definitely struggles with stuck/sticky mucus in his throat and fluid build up in his lungs so nebulizing with 7% sodium chloride seems to provide him with the best relief so far since it allows his mucus to loosen up a bit which makes it easier for him to bring up the mucus which, in turn, allows him to breathe better! Unfortunately, he’s still unable to lie flat or even elevate his legs in a recliner since it makes it difficult to breathe so his legs are very swollen (edema) from body fluids even though his heart is now able to pump out fresh oxygenated blood throughout his body since he recently had his aortic valve replaced with one made from a cows heart tissue. I swear sometimes he makes a moo’ing sound, but he says it’s all in my head 😉. Anyhow, we’re hopeful that this new pulmonologist (he’ll see later in May) can offer more insight as to what’s going on, and better still, hoping there might be something more my dad can do to improve his ongoing shortness of breath. He’s working out faithfully, albeit in a limited capacity, and although he needs to stop a lot to catch his breath, he always feels better and can walk further without stopping AFTER he works out, but this doesn’t last too long. Thank you again for chiming in and sharing your thoughts. Hoping you have a glorious day - we appreciate you Linda! Cheers, Scott

Yeah he’s definitely a fighter and maintains a positive attitude, and I’m glad he’s willing to try things that may help since it doesn’t make sense to me to sit around and whine about things in life when there might be solutions out there worth trying. We’re very grateful for peeps like you & others here who are willing to take the time share their experiences with others as much can be learned from each other and so hopefully someday we’ll be able to pay it forward to others ourselves as we continue to learn more about his condition and what seems to help and what doesn’t. This far, it doesn’t seem as though either Albuterol (alone) or Duoneb (combination of both Albuteroland Ipotropium) seem to provide as much benefit as 7% sodium chloride for loosening up the mucus enough to allow him to cough it up and spew it out which provides some relief to his shortness of breath. We realize that those 2 medicines are designed to open up passages to those who battle with asthma (or even maybe bronchitis?) so I’m thinking he doesn’t have either of those conditions. And he does have an allergist test him annually for both food & atmospheric allergies that might contribute to developing excess mucus, but I’m beginning to think avoiding certain foods has less to do with causing secretions but can’t entirely rule out the possibility that they (or pollen, etc.) does exacerbate his condition. We certainly agree that blogs like this one at Mayo Clinic’s website is profoundly helpful in better understanding what others find helpful/beneficial so we’re extremely blessed to have you and others here who are willing to take the time to share their thoughts and experiences with others. Thank you again - we hope you have a glorious day! Cheers, Scott

Hi Scott,
Thank you for the feedback. Good to hear that they are stocking the Ombra. If your father likes the pulmonologist, be sure to share his name with us. As crazy as it sounds, finding a good pulmonologist in Florida feels like looking for a needle in a haystack. Hopefully now that the bronchiectasis care center is in the process of being built out, with already 33 centers approved, they’ll be more options for the Floridians in our community. I was just looking for someone in the Delray Beach area and came up with nothing. Dr Hadeh, in Weston at the Cleveland Clinic was the nearest expert, but it’s an hour away. Not an easy drive for some.

Warm regards, Linda

Hi pcathy, thank you for responding here. We appreciate your warning to watch for signs of fluid retention like shortness of breath (SOB) and/or edema. He’s actually been battling with SOB for over 15 years yet cardiologists always say his heart is fine so they refer him to pulmonologists who say his lungs are fine until 3 years ago when a pulmonologist from Univ of Mich diagnosed him with asbestosis in his left lung and said it’s only operating at 50%. Apparently he didn’t feel anything could be done to remedy this and only told my dad he likely acquired it from exposure to asbestos in industrial environments he worked in for decades as an industrial electrician. From things I’ve read it can take 30+ years before you show symptoms of lung damage from inhaling airborne asbestos particles! I find it fascinating how much the heart and lung work together because in my dad’s case, things really got bad this past fall when he couldn’t breathe one day and his calves had become very swollen (from fluids backing up/poor circulation) so him & mom went to ER where they discovered his right coronary artery was 90% blocked so they placed a stint during angioplasty/groin entry catheter procedure. He could immediately breathe better than he had for years, but just 4 days later he was back to square one when his SOB returned. A couple weeks later a CT scan revealed a large pericardial effusion had developed (fluid in sac surrounding his heart) which contributed to restricting his heart from fully expanding which limited its ability to fully pump blood throughout his body. Since it’s risky to attempt draining these fluids from the sac, they monitored the size of this effusion via monthly echocardiograms which showed it gradually got smaller each month, I.e., severe to moderate then finally small 🙌 This allowed him to be cleared to travel south to the Sunshine state where he looked forward to doing (sooner than later) since we’d learned that Tampa General Hospital has a well respected cardiology clinic (in top 50 out of thousands throughout the U.S.) and we were able to get him scheduled for an initial appointment about a month before departing Michigan. Shortly after his initial visit with a cardiologist in mid Feb, she ordered a complete echocardiogram (versus a limited echo) which revealed a low flow/low gradient severe stenosis of his aortic valve which had narrowed down to a very small 0.7 cm2 opening rather than the normal 3-5 cm2 opening of a normal aortic valve. This immediately prompted sitting down with a cardiac interventionalist doc who routinely performs minimally invasive TAVR procedures (via groin catheter) which was done a few weeks back on April 2nd. This new valve instantly allows his left ventricle to fully pump fresh oxygenated blood throughout his body, however his right ventricle remains enlarged and isn’t pumping deoxygenated blood to the lungs very (dysfunctional) so there’s a 50/50 chance the right ventricle will improve over time OR it may not if the cause of this right ventricle dysfunction is somehow linked to his asbestos condition in his left lung. While recovering at Tampa General Hospital after his TAVR procedure, my mom and I asked if a pulmonologist could stop in to have a look at my dad and a couple of them came in together (after examining some post procedural digital imagin like X-rays, echocardiogram, etc.) and told him they agreed with the asbestosis diagnosis from 3 years ago and said they were concerned about fluid in his right (good lung) so they decided to keep him one additional night (3 nights total) so he continues on diuretics (Bumex water pill) and now also nebulizing sodium chloride 2-3x/daily and looking forward to adding the OPEP treatments soon once the Aerobika (with manometer) arrives at Tampa Specialty Pharmacy near where my folks reside in St Pete during cold months. This is likely far more than you cared to hear, but I think it’s beneficial to share as much info as possible since there may be others here who might be able to relate to some of this and possibly be helpful somehow. Thank you again for responding and your concern for my dad to keep an eye out for certain symptoms. Hoping you a glorious day! Cheers, Scott

Hi dpaula, that’s very kind of you to say, but I’m sure that you/others would do the same for one of your parents if you were able to and I feel tremendously blessed to be in a position where I have time to reside with them and help where I can since they’re both coming up turning 87 in the fall and I’m retired (at least for now) and at a place in my life where I don’t need to be elsewhere or have anyone else who needs me to support/provide for them. As the youngest of 4 kids, I’m grateful to be able to spend so much time with them since I spent 22+ years in the military (AF) living abroad for about 10 years then remaining in Dayton (where I retired from the military) for an additional 17 years working as an AF civilian so I’m grateful to be at a place in my life where I’m able to live with them these past 5+ months since I’ve lived a fair distance from home these past 4 decades! Thanks again for your kindness, I hope you have glorious day! Cheers, Scott

Hi Linda, yeah you’d think with all the retirees down here there’d be loads of top notch pulmonologists and cardiologists, right? There very well may be, but finding them probably IS like searching for a needle in a haystack! I do believe Tampa General Hospital (TGH) has some of the best cardiologists in the nation (ranked ~#45 in the nation), just not sure about pulmonologists yet. I do know they rank in the top 50 in the nation in 8 categories (cardio being one of the 8) but don’t know what all of the other 7 are. While it seems like you may be on the other side of the state near Weston (from your last message) I’ll still let you/others know how things go once we actually meet with this pulmonologist on May 20th. They do many heart and lung transplants here at TGH and my dad was fortunate enough to get Dr. Matar to perform his TAVR procedure. When my dad asked if Dr. Matar would be stopping in to check on him the day after his procedure the staff said he was kinda busy that day performing a tricuspid valve trans catheter replacement (1st in Florida) and one of very few performed in the states thus far, so that gives you an idea of how good the cardiologists are here in the Bay Area! Hopefully the pulmonologists are equally advanced. The pulmonologist my dad is scheduled to see on May 20th is Dr. Restrepo and he works in the advanced pulmonary clinic so I believe he’s likely one of the best in the area as well! Not sure if he actually performs lung transplants, but I believe he works on the same team of pulmonologists that do perform lung transplants on a regular basis. Be assured that I’ll report back here to let you/others know what he discovers and what the plan is moving forward regarding my dad’s situation. If you’d like, I can ask Dr. Restrepo if he specializes in MAC/bronchiectasis or, better still, if he can suggest a particularly good pulmonologist in your area. I noticed on your profile that you have/are currently dealing with bronchiectasis but not sure if you still struggle with MAC or not so please advise what specifically you’d like me to ask about if I’m off base and I’d be happy to ask him. I’m really impressed with all staff here at TGH and especially appreciate how responsive most are when asking questions using the MyChart app! What a game changer this app has made for patients since it posts test results quickly regardless if it’s bloodwork at the hospital or Quest, echocardiograms, CT scans, catheter procedures, X-rays, etc. Plus all doctor visit results are posted including comments by docs, Nurse Practitioners, Physician Assistants, nurses, techs, etc. This in itself is very helpful especially for elderly folks who either can’t remember as well what is said during the doctor visits, don’t understand some of terminology, review the course of action/plan moving forward, etc., cuz these things allow the patient to review comments later and/or look up unfamiliar terms and not worry so much if a friend/family member/etc. isn’t able to accompany them on their appt. to either take notes, help them understand terminology, etc. Plus, it lends to the entire transparency when the medical professionals put down in writing their diagnosis, treatment plans, referrals, on & on! I’d suggest to all who are reading this blog to inquire with your doctor or hospital about MyChart (or other) electronic medical charting that allows you to follow your own medical records at a near real-time basis cuz it’s truly a game changer (for the better) in so many ways! And, it’s easily shared with others. For example, while I was in the Dayton Ohio area this past fall, and my dad was in the hospital in the Detroit area, I could easily log into my dad’s MyChart account there and read his blood results, echocardiograms, doctors comments, etc., because my dad gave me his log in info willingly so HIPA is not an issue cuz he chose to share his log in info with me, then after you, or the new user, submits the username & password once, thereafter all they/I have to do is type in a 4-digit code which allows me into his MyChart account within seconds. Now, down here in the Tampa area, the same applies. MyChart also allows users to request appointments, check upcoming appointments, check current medications, view billing details, ask questions to various medical professionals (including doctors) and much more, besides just reviewing remarks from previous appointments. Wow! It’s sooo helpful that I just love it! Anyhow, while I realize Tampa is about 4 hours away from you Linda, I truly can’t say enough about TGH so far, but rest assured I’ll ask Dr. Restrepo if he recommends anyone in particular in the greater Weston area, or other area if you want. Just let me know what part of Florida you’re nearest and I’d be happy to assist you, or others, in any way I can. Wishing you have a glorious day and thanks again for responding! Cheers, Scott

Hi Scott,
It’s wonderful that you’re there supporting your father. It really seems like you’ve embraced the experience fully, and I truly admire that.

I’m based in New York City and feel very fortunate to be under the care of Dr. Addrizzo-Harris, one of the leading experts in bronchiectasis and NTM. She’s now overseeing the development of the Bronchiectasis Care Center Network, which is such an exciting step for our community.

I’ve actually heard of your doctor as well—I make a point of keeping track of top BE/NTM specialists around the world.

BE well,
Linda

Oops! I totally misunderstood your previous blog message. I was thinking you were searching for a good pulmonologist the Florida area for yourself! Sorry about my misunderstanding. It seems like you were searching for good pulmonologists in Florida for my dad’s sake - bless your heart. Thank you so much for your thoughtfulness Linda, that’s very kind of you! So are you saying you’ve actually heard of Dr. Restrepo (pulmonologist) down here in Tampa? If so, that’s very encouraging to hear! Thank you again for responding, and so promptly too. I can’t always get back to checking this blog for responses as often as I would like to so I’m always so impressed when others like you do! Thanks again, Scott