Hi all hope everyone is doing well. I'm nervous about my appointment today with my pulmonologist. I don't know how long this MAC infection has been present as some of the symptoms are similar to cll.....ie fatigue, low grade fevers, weight loss, shortness of breath and night sweats. The first time I saw him I didn't have all the above symptoms just the shortness of breath so he said he wasn't going to treat it. He also said I would have to take antibiotics everyday for 12 to 18 months. Incidentally I have a 36 year old son with cystic fibrosis who had mycobacterium abscesses and was treated successfully with an antibiotic for a year. He is doing fine now and works as a registered nurse and paramedic. If I may ask, wish me good luck and prayers if you are the praying kind. I'm kind of fragile right now and not sure if my 104 lb. Body can take any more worrisome news. I will be back later with an update.....thanks everyone for the encouraging words and support...
Best regards,
Dianne
Written by
Ladydi49
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Hi again, ladydi, I'd say yr going to feel a lot better after they get rid of yr lung infection. Infection raises wbc so fix it and you'll feel much better. Yr doing the right thing. Let me know how it goes. I'll check on u later. Lots of love, my dear, Dana
Thanks for your input DanaNicholson. I'm pretty sure I've had this mycobacterium avium complex thing for several years and it didn't effect my white count. My pulmonologist said my lungs were clear, my weight is stable, no high fevers and no coughing up bloody sputum. He said to treat if those symptoms arise would involve 3 antibiotics every single day for 12 to 18 months and it might not wipe it out and if it did the MAC would most likely come back. He feels my fatigue and shortness of breath and racing heart are all due to the cll as I have enlarged lymph nodes in both lungs, behind the breastbone and as I already knew from my nursing classes the heart and lungs do work together. On another note, my pulmonologist thinks the excess mucus going down my throat causing this 4 1/2 month long sinusitis and bronchitis is from my maxillary sinuses (I did show him the written report and CD from the sinus CT scan I had a couple weeks ago). And now, my allergies are awful! I live in west central FL and the pollen is very high and the temperature is in the mid to upper 80's every day with lots of sun and virtually no rain. My allergy med isn't helping much as I get breakthrough sneezing! Ugh, can't catch a break....thanks for letting me vent.
I hope the pulmonologist can figure out what is happening and can suggest an effective path forward. You may want to remind the doctor that with CLL your immune system is compromised like someone with HIV-Aids or Multiple Sclerosis, so watch & wait for infections is not usually successful for us.
Best of luck to you Dianne! You were there in my prayer today and remain in my thoughts as I send you my focused hope for strength and the best possible outcome! I will check back later for your update.
Hi Ladydi! I am sorry for you - truly! I have had repeated severe lung infections for three months now, and I am on my third and different antibiotic. I went to my primary because of them and he sent me to the oncologist, three months ago. He sent me to a pulmonologist to get to the bottom of the lung, wheezing, breathing, and shortness of breath issues. I finally agree to see a pulmonologist. He is is very sympathetic and good. He listened to me explain CLL and the side effects of the drug Imbruvica, which has many similarities with congestive heart failure, anemia, and embolisms (blot clots). He is helping me to eliminate any other known conditions and will soon add a bronchoscopy (sp?). I wanted to see him less than I wanted to see an oncologist, but it was a a wise and smart thing to do. I will keep you and your needs in my thoughts and prayers. Michael
Thanks Michael. Hope you feel better. Are you taking Imbruvica? I'm not on any meds...still on W&W. What I read about some of the oral agents scares me especially the A-Fib part as I already get palpitations and a racy heart
I am getting scans tomorrow to eliminate congestive heart failure (CHF) or embolisms in my lungs or legs. The challenge is that the 90% of the symptoms of CHF, embolisms, anemia (part of my blood issues), Leukemia, and the side effects of the drug Imbruvica are 90% the same - wheezing, shortness of breath especially with minimum exercise, coughing, fatigue, dizziness, etc. So, I have a good pulmonologist and primary trying to eliminate all known sources so we can find out why I have these other conditions. I am also on my third round of antibiotics in 45 days - including doxycycline and bactrim. It is a journey, and frankly, if I make it there eventually, I wil have none of this in Heaven. Yesterday is not mine, I have no say on tomorrow, so I try hard to do my best and embrace each moment of each day.
Yes buy all means leave no stone unturned to make sure your WBC is not being helped upward by an infection, you never know. The doctors can tell from your blood results which of white blood cells are not from infection, there are 6 different white blood cells in your system. I even had a slightly infected tooth pulled because of chance it might be adding to WBC. May you be blessed and prayers for you.
Thanks Big_Dee.....Yes, I remember from my nursing classes that there are 6 different kinds of white blood cells. My pulmonologist thinks I have had MAC for a long time and it never affected my WBC count before. I was diagnosed with CLL in Sept of '07 but my first hematologist thought I had it for a year when a CBC showed the lymphocyte count to be 6.1 a hair above normal so that would have been August of '06. Interestingly a CT scan of the chest for chest pain in July of '04 for chest pain showed some enlarged lymph nodes in both lungs so, I probably had cll then! I'm still on W&W!
Good luck with MAC, good compliance is the key to eradication. I'm not sure if you are aware but there are two CLL Support groups, sponsored by the CLL Society in Central FL. One in Tampa and the second is in Orlando. Let me know if you need information.
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