← Return to Need Surgery on Cancer & Just Found Out I Have MAC! Help!

Discussion
Comment receiving replies
@bellsina71

Busy,
I hope you're doing good! Things have been so crazy here but I've been meaning to send you a message. I saw infectious diseases today. He looked at the CT scan and said that even though there's a 3.2 CM hole in my long, he said the infection was mild. That seems crazy to me! But of course since there's a cavity, I have to be on the big three now. I can go pick them up today, I'm going to start one every five days. He didn't cancel my surgery so that's still scheduled for Saturday. He said he would come and see me in the hospital because I'll be in there a few days. I'm not sure if this is normal or not, but he wants me to see an immunologist because he's curious as to why I would have gotten this. He doesn't think that being immune compromised from the cancer would have caused me to have contracted this? But it seems like there's a lot of people on this site that aren't immune compromised to have this. I mean I don't have a colon, I've had this cancer in my intestine for who knows how long.. I also do a lot of planting in the summer, I'm always digging around in the dirt. The last three Summers have been like this. He looked at a CT scan from 2011 because that's the last time I had one, and there was actually little nodules in that area that the mass formed and he was a little suspicious that I could have had this way back then but wasn't sure. He said I've at least had it a few years. Scary!
You said above that you've been diagnosed with several strains of Mycobacterium..what?! Why is that? I feel that I'm going to get all sorts of crazy things going on in my lungs until this goes away, if it ever goes away? He said I have a good chance on it going away because it's mild and of my age. I hope he's right. This is very rattling. I know what you mean about living with your share of TERROR! I love the way you put that actually because it's so true. It's like living on the edge of your seat wondering what's next?! When I decided that I would go through with the colon surgery, I didn't have any thought about not doing it. I saw my brother die of colon cancer and I just wanted that colon out of me. So it was a completely different set of circumstances. But, it's like losing a huge part of your body and even though it's your colon it's still something's being taken from you and some people feel less than themselves when that happens.
Anyway I wanted to let you know I saw ID today, he said that I'll start one antibiotic at a time so I'm hoping I don't get sick from any of these. I really hope I just adjust. He said I have to see an eye doctor, just to make sure nothing weird goes on with the eyes and ear doctor because of the medication with the ears. I mean that's scary.! I hope you don't know anyone that went blind or deaf I need some meds!
Hope to hear from you soon! 🙏😀❤️💖
Angela

Jump to this post


Replies to "Busy, I hope you're doing good! Things have been so crazy here but I've been meaning..."

Hello Angela,
I'm so happy to hear that they are going to move forward with the surgery. While recovery isn't the most fun thing, it'll be a relief to have it over with. After my colon surgery, I was back to work in two weeks. I hope you'll be up and about in no time. You're on my daily prayer list - and in my mind many times a day. Just know that I'm sending healing, healthy thoughts.
It is possible to have several strains of NTM at once. At present I only have one, Kansasii. It's a slow-grower thankfully. But my body has cleared several others without the Big 3 for which I am eternally grateful.
Have you had genetic testing? I learned at NJH when I first went in 2011 that I am Alpha-1 Antitrypsin deficient. AAT is a protein made in the liver that protects the lungs. I evidently inherited this from my fraternal grandmother. I am not deficient enough to need infusion (as are some folks) but coupled with being severely anemic from the faulty staple in my colon, and because I am always digging in the dirt, I contracted NTM. For many years, probably the first 10, aside from a few episodes of severe hemoptysis, I had no symptoms. I still have very few - which is why I've been able to stay off of the meds.
And no, I've not heard of anyone going deaf or blind from the meds. But they can affect both your hearing and vision so it's necessary though to have regular visits to both the ENT and eye doc just to make sure the meds aren't messing with either one. My doctor had me do that before beginning the meds in order to get a baseline.
Your doctor sounds like a compassionate person so I trust that you're in good hands - both his and your surgeon's. I will continue to pray for the very best outcome, that you will feel the presence of both the God of your understanding and all of us on this website who are rooting for you.
Blessings to you!
Busy