Pulmonology visit today, emotional roller coas... - CLL Support

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Pulmonology visit today, emotional roller coaster of a day

Ladydi49 profile image
9 Replies

Hi everyone! First of all a ginormous hug to everyone on here for the support and well wishes. Every night before I go to bed I say some prayers for all of us. So, yes I do have MAC Mycobacterium Avium Complex. The doctor said my lungs are clear, my weight is stable and I'm not coughing up bloody sputum so there's no need to treat which would be 3 antibiotics everyday for 12 to 18 months which might irradicate it but then it could come back. He thinks my shortness of breath and fatigue is from the cll. I do have to go back in 2 months for some pulmonary function tests. He said to continue to take Claritin for my allergies and Mucinex for chest congestion. Today before my appointment I pushed myself to do my 2 1/2 mile walk. It was tough but I told myself "I can do it and nobody or nothing is going to stop!" What made me sad today is that it's my oldest daughter's birthday and she lives in Massachusetts while I'm here in Florida and missing her like crazy. I have another grown up daughter and son also in Massachusetts. Hubby and I spend the summers up there and I'm hoping my cll doesn't prevent that.

Hugs to all,

Dianne

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Ladydi49
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9 Replies
Spacee profile image
Spacee

Hi LadyDi, Wow. Bad news/Good news. Bad news you have it. Good news you are well enough to not treat. Gentle Hugs to you. I pray for all too everynight. I know what it is like to miss children. I miss mine though they only live a state or two away. I am hoping too the CLL won’t prevent any traveling.

Linda

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Having answers, even if they aren't the ones you want, is helpful. CLL and other health issues are scary, but not as scary as the unknown. Hopefully knowing what's going on will help you, and you will be able to join one of the support groups for more direct support and feedback.

Ladydi49 profile image
Ladydi49 in reply to MsLockYourPosts

Thanks MsLockYourPosts....The thing that bothers me the most is the shortness of breath which my pulmonologist says is from the cll

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to Ladydi49

Are you anemic?

Ellieoak profile image
Ellieoak

It always is a roller coaster ride for most of us but hey we’re still here! Keep thinking of the good and don’t let it get you down. Keep the faith ! Hugs and prayers. Anna

Ladydi49 profile image
Ladydi49 in reply to Ellieoak

Thanks Ellieoak...hugs and prayers to you too

gp7591 profile image
gp7591

Ladydi49- Saddened to hear of your condition, but it looks like it is not too serious and that you're getting along well. Wishing you all the best! -G

Ladydi49 profile image
Ladydi49 in reply to gp7591

Thanks gene7591....all the best to you too

pkpayne profile image
pkpayne

Hi Dianne, I'm sorry that you have MAC but it sounds like you have a good doctor. Mine wouldn't treat me either as I was asymptomatic. And I've had it since at least 2007. He told me the same thing yours told you - that it would take a long time to be on medication and that it would be better if I waited until I showed symptoms - sort of like CLL. I haven't had the fatigue or shortness of breath that you are experiencing and I would suspect that it's due to the CLL as well since those are such common effects of it. You are doing better than I am though with your walks so keep that up. If our weather ever gets suitable I plan to do the same thing! I'm in the south too and it's not that cold but we've had rain almost everyday and it's just been so dreary. Happy Birthday to your daughter! Ours doesn't live near either - we are in Texas and she is in Georgia! I miss her too! Blessings!

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