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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@windwalker, Terri I am answering you on the Main Forum because the info on your salt treatment is REALLY good info to have on our Main Page .. PLUS I am just SOOOO excited for you!! YEAH!! You are SUCH a trooper .. one of my personal heros with your oxygen tank at the gym etc!! You absolutely deserve every single good thing that happens for you!! I am so very proud of you!! You go girl!! I am sending you one BIG hug! Katherine
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update on my recent Mayo visit.
Posted by @windwalker, 5 minutes ago
Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn’t sound like much, but 4% in the other direction (down) starts to put me in the lung transplant category. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistently losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!
I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs – Terri M.
Replies to "@windwalker, Terri I am answering you on the Main Forum because the info on your salt..."
Hi Barb: my doc at UCLA did not know about, so I went to Mass General in Boston and they set me up with nebulizer and saline and albuteral. They have a large pulmonary dept. I think this is relatively new
@windwalker Hi Terris M., thanks for the info regarding reasons to keep up with daily saline nebs...very helpful to hear! Also, great idea on what to do with my time while doing nebs...spending time catching up with Connect!!! Helpful to hear I'm not alone with long time doing daily nebs! I know many of you do but it makes me feel less lonesome or just somebody to "complain" about it to...my husband certainly can't relate!!! Also good to have perspective, knowing it could be much worse! Best, Jen 🙂
@bschaper2 Hi Barb, the first time I had a Saline neb tx (I use short for writing out treatment every time:) was at Mayo in March. They did it to induce sputum for hopefully obtaining a culture. Some people start coughing during their the neb tx & it makes it easy to obtain a culture (also good for "cleaning" or "cleansing" your lungs a regular basis). I'm not one of the lucky ones that easily bring up sputum & I barely cough while doing the tx. But I find over the next hour it does loosen up the mucous making it easier to "clear". I asked at Mayo what percentage of Saline that they used & found out that it is a high concentration of 10%. When I got home & talked to my PCP & Pulm
Dr, they felt comfortable prescribing 7% but not 10%. The pharmacy did not have it in stock but it was easily ordered. Now I'm suppose to use it 2x/day before I do the other neb medications. Just thought I'd share what I know about Saline nebs. Hope it helps! Best, Jen 🙂
@jentaylor, Hello Jen! Can you guess what I am doing right now? Yep, nebulizing! I spent five hours on the boat and in the water today. It was hotter than blazes out there. I hope you had a good day also. XXOX Terri M.
@unicorn Can't help but be curious. Do you live in CA and actually came all the way across the country to go to MGH? I love MGH, that was where I had my transplant and they were outstanding, plus I go to a couple of doctors there. I wish I could go there for my PCP but it's just two far. You have to leave 2 hours to get there from here in NH in case of traffic. With no traffic it's about an hour away.
JK
Have you been doing the nebulizer if there has been no real cough? Yet. Has this been helpful in just getting the airways clear?
Jo Ann
@jkiemen, Jo Ann, get started reading the back pages .. many of your questions will be answered .. a WEALTH of Knowledge is at your fingertips .. as you gain knowledge .. you will gain in confidence .. get started! You can't get to college until you have gone through K-12 .. we have all been on your journey .. together! A good use of your time. Hugs! Katherine
In terms of nebulizing .. From My File Cabinet:
Congratulations on your 4% improvement! So my big question is: how did you psyche yourself up to do the cardio when you felt so bad? And did you do it every day or ? I can’t imagine joining a cardio class where I would be the one having to stop e wry two minutes to catch my breath. You inspire me!
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Hi, Barb, The saline is a prescription.