I hope your ice is melting! I live in the southwest where it is usually in the 70s this time of year, but I've been whining about it being in the mid 50s and raining...guess I'll stop doing that!
To your questions, first O2 is oxygen. Some of the folks I know with NTM need O2 to breathe and are tethered to either a large or small device; I've never had to use it. I do use an oximeter at home to check my oxygen saturation. It's the same small device that is put on your finger at the doctor's office. I bought mine at a drugstore ($30-$40) and use it just to check in with myself and make sure my oxygen is good...especially if I'm feeling a little punky. Sometimes anxiety makes me feel breathless. That's a good time for me to use the oximeter and see that my oxygen is just fine and that I'm a little panicky over something else (pandemic/war/earthquakes/homeless folks, abandoned pets).
The cavity in my left lung is 7.4 mm x 6.5mm. It's relatively new and scared me a lot until I did further research. I'm praying that through exercise and good (as good as I can do it) airway clearance (along with a lot of prayer) will make it heal. I also have bronchiectasis in my right lung. It was suggested that be removed as well. I said not yet. I'm just not ready.
My colon surgery was a subtotal colectomy with the small intestines reattached to a small portion of the rectum, thus avoiding a colostomy. It has not been without a few issues, but I have a great GI doctor that I can turn to if concerns arise. I didn't have cancer. I just had a colon that stopped functioning - at all. After five years of total misery I finally consented to the surgery. I was terrified of a colostomy and remain grateful every day that that was not the outcome.
I tried the BIG 3 when first diagnosed in 2011...two years after my colon surgery. I couldn't tolerate the side effects of the drugs. My pulmonologist had me wait six weeks and re-introduce one at a time. I still couldn't tolerate the side effects. My ID doctor said that my body chemistry was not going to allow me to take the drugs. BUT, lots of folks do just fine. My dear, dear friend I roomed with at NJH took them plus had a port for another. She never missed a beat. They had no ill effects on her at all. As best you can, listen to YOUR body when/if the time comes to take them. It may take a little while to adjust to them or it may take very little time to learn that they aren't going to work for you. Either way, you will find a way to manage this disease.
I hear how important this upcoming surgery is to you and pray that it moves forward as you hope it does. I will happily answer any questions I can or just be here if you need a friendly ear. Like you, I've never known anyone that had their colon removed AND had NTM so I find this connection an unusual Godsend. My best to you, along with many prayers.
That's good that the hole is relatively small and they caught it right away! I'm going to do whatever they say. I am very terrified though about having the cancer with this and then possibly having to have some chemo which is immune compromising and having this MAC!?! It's absolutely terrifying and then I was reading an MRI report about the mass on my intestine and it said basically that there was a possible spiculated subtle area of that tumor that was extending outside the intestine. That is terrifying. Because if that's true I would have to get chemo, I'm praying that it's possibly precancerous that's extending. Most of the biopsies that I had were precancerous cells on this tumor except there was some places that had the very aggressive cancer very tiny areas that were very suspicious on the biopsy. I just want to get this out of me! My surgery is supposed to be on saturday. I see infectious diseases on Tuesday, and I'm hoping they give the go ahead that I can still have it!!
I had a complete proctocolectomy. I have Lynch syndrome which caused colon cancer, my brother died at 32 he was a year and a half older than me when they found out I had it five years later they removed the whole colon, and they actually found Cancer all over in the inside of the colon that didn't break through the colon wall but they didn't see on the colonoscopy. So it was very odd. So now I am faced with this intestinal cancer that's aggressive plus this MAC!
Do you happen to know anyone or heard of anyone with a non lung cancer with mac? I tried to do a search on here but I can't find much of anybody. I'm sure there is cases of it.
You've given me such great information, I appreciate it so much! I feel pretty silly that I didn't know what O2 was now. Haha you sound like you're very active, and that's really great, I take care of my 5-year-old granddaughter as I told you before and she keeps me going and going! I really appreciate all your information!! The weather here has gotten much better. The snow is actually melting a little today. I'm so happy about that!!!
And I hope you have a great day. And any information or anything you think I should know, please send me an email. Thanks so much for all your help. And I still think it's so crazy that you had your colon partially removed, I never thought I'd meet anyone that had that. It's been 15 years and I haven't yet until now. Haha
Angela
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