In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Sat, Aug 17 1:12pm

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot…have been doing it for years. This year we had a new mulch supplier…… I could use a pep talk, if anyone has that for this!!

@dsilva

I have bronchiectasis for 12 years, and lived normal life. About 1 year Cat Scan and broncoscopia tested + for MAC. 1 pulmonologist from a renowned hospital in New York does not want prescribes medication, which may cause me more harm than good. I am planning a 2nd opinion soon. Where? I think I should be treated for the disease now , and don’t wait to get very ill and begin treatment.

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@dsilva Hi, who do you see in NY? I’ve been seeing Dr. Kamelhar assoc with NYU since 2016. That has been his approach also. I have nodules that come and go, and some shortness of breath, but no other symptoms. I also have bronchiectasis. My regular pulmonary Dr has also agreed about the wait and see approach. I have learned that even if you go on the antibiotics and get rid of it you can still become reinfected and might need to be treated again. I think that’s why they suggest waiting.
Gina K

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@dsilva I have a similar situation as @ginak in that my pulmonologist didn't think drug treatment would have better outcome than wait and see option because the side effects of the drugs might do more harm than good to my body and the drug treatment would not guarantee success once and for all. Even if the treatment did manage to get rid of MAC at first, there would still be possibility that it might re-occur. I was diagnosed with MAC 5 years ago and have had bronchiectasis for many years prior to that point. I did not have any symptoms that others described, such as weight loss, fatigue, shortness of breath, etc. at the time of diagnosis except coughing up large amount of blood once out of the blue. He suggested that I schedule visits with him, first every 6 months then once a year, and make decisions at each visit whether I should go through treatment based on my lung conditions at the time of the visit. So far my lungs have not deteriorated at all and I continue to live a normal and active life without taking any medication.

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@kp5450121

No ,I am going to anywhere I can cause I refuse to dye in 15 months due to heart failure cause of my lungs. I am going to re appeal to mayo. Work on trying to live ,just talking my lips turn blue.This is very hard to take in but my lungs are not better from the scarring and fibroise. Its a lot to take in and know there is not a lot you can do and at 43 your just getting to those best times of life to slow down and be thankful in life. When I was 15 ,I wished I could be grown 21 and live it up and your always going and don't take time to see the real good things. So DR. LEE said I was the first case of BOOP for mayo clinic, so only God knows what lies ahead for future

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@kp5450121 Hello Karen. So sorry that you are dealing with such serious lung issues. There is nothing worse than not being able to breathe. I saw my mother turn blue many times during her battle with Alpha-1 deficiency. I too was almost a candidate for a lung transplant back in 2013. Fortunately, my case was a matter of clearing out heavy infection from my air sacs. I'd like to try to guide you to to some good help if possible. I do know of a man who received a double lung transplant in Ca. He was turned down by everybody. That was over ten yrs ago, and he is still alive and well today. I will try to contact him and find out where exactly he went. There are a few 'great' lung transplant hospitals I know of. Duke Medical University in S.C, and one in San Francisco. (Will get back to you on that one) I am not saying you need a lung transplant, but at least the medical instituions that do great lung transplants would have great pulmonologists. What part of the country do you live in?

Liked by alleycatkate

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@sylvermoon8 It seems that many of us on this site with mac; have been avid gardeners. Hmmm…..

Liked by lorifilipek

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@kp5450121

No ,I am going to anywhere I can cause I refuse to dye in 15 months due to heart failure cause of my lungs. I am going to re appeal to mayo. Work on trying to live ,just talking my lips turn blue.This is very hard to take in but my lungs are not better from the scarring and fibroise. Its a lot to take in and know there is not a lot you can do and at 43 your just getting to those best times of life to slow down and be thankful in life. When I was 15 ,I wished I could be grown 21 and live it up and your always going and don't take time to see the real good things. So DR. LEE said I was the first case of BOOP for mayo clinic, so only God knows what lies ahead for future

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@kp5450121 Hi. May I ask why you were denied transplantation at Mayo? I wasn't denied, but put on the back burner, so to speak. They said I was on the cusp of needing one, but got the green light should I go downhill. I am aware of factors that would cause them to say no. One biggy is weight. You cannot be overweight. Old age, and other circumstancial diseases are also factors along with mental health. You have to be of sound mind and have positive attitude because it is a real fight to survive a lung transplant.

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baz

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@ling123

@dsilva I have a similar situation as @ginak in that my pulmonologist didn't think drug treatment would have better outcome than wait and see option because the side effects of the drugs might do more harm than good to my body and the drug treatment would not guarantee success once and for all. Even if the treatment did manage to get rid of MAC at first, there would still be possibility that it might re-occur. I was diagnosed with MAC 5 years ago and have had bronchiectasis for many years prior to that point. I did not have any symptoms that others described, such as weight loss, fatigue, shortness of breath, etc. at the time of diagnosis except coughing up large amount of blood once out of the blue. He suggested that I schedule visits with him, first every 6 months then once a year, and make decisions at each visit whether I should go through treatment based on my lung conditions at the time of the visit. So far my lungs have not deteriorated at all and I continue to live a normal and active life without taking any medication.

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@ling123 @windwalker My story is very similar to ling123 symptom wise-except my ID doc put me on the big 3-I did not tolerate rifampin which the cultures showed were specific to my MAC. After a year on the other two, cultures still positive. I cough some, but work full time, exercise daily, and can hike in the mountains! I’m going back at the end of the month to ID- I will not go back on the meds at this time.
And yes-I’m an avid gardener- now raising Monarch 🦋!

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@rmason I'm glad to hear that you are leading an active and interesting life despite being tested positive for MAC. From what I have learned, people can be positive for MAC but can still live a normal life and not have symptoms without being treated with antibiotics. MAC are such ubiquitous bacteria that it is very hard to live in an environment where they don't exist. The bad news is that for those who have other health issues that cause their immune system to run down, MAC infection will make their conditions worse. If you are otherwise healthy, like myself, the important thing to do is to be vigilant and work with your doctors to make sure that your lungs stay in good shape and there are no other medical problems that may affect your immune system and your general health. Hope everything goes well with you and the monarchs are thrilling under your loving care.

Liked by lorifilipek

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@heathert

@vetnyregr My Dr said she wrongly put me on them daily for 2 years, it should have been daily for cavities, she had not told me I had cavities for 2 years or I could have corrected her. Yes its a very long time on the big 3 but only a year on Amikacin inhaled, no I haven't had infused at all. My cavities did close on their own but they left a small scar, which I guess would also happen with surgery. I hope yours take alot less time, and hope you are on daily! The big three and Amikacin is a good combination.

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Now, they want me to go on clofzimine. Has anybody been on this? The side effects are frightening!

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@windwalker

@kp5450121 Hello Karen. So sorry that you are dealing with such serious lung issues. There is nothing worse than not being able to breathe. I saw my mother turn blue many times during her battle with Alpha-1 deficiency. I too was almost a candidate for a lung transplant back in 2013. Fortunately, my case was a matter of clearing out heavy infection from my air sacs. I'd like to try to guide you to to some good help if possible. I do know of a man who received a double lung transplant in Ca. He was turned down by everybody. That was over ten yrs ago, and he is still alive and well today. I will try to contact him and find out where exactly he went. There are a few 'great' lung transplant hospitals I know of. Duke Medical University in S.C, and one in San Francisco. (Will get back to you on that one) I am not saying you need a lung transplant, but at least the medical instituions that do great lung transplants would have great pulmonologists. What part of the country do you live in?

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My cousin's husband had a double lung transplant at Barnes in St. Louis. He is doing great and it's been about 5 years. Unfortunately, his wife died of colon cancer because she ignored all the signs while taking care of him.

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@tinaesims

My cousin's husband had a double lung transplant at Barnes in St. Louis. He is doing great and it's been about 5 years. Unfortunately, his wife died of colon cancer because she ignored all the signs while taking care of him.

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@tinasims, Hi Tina. That is good news about your cousin's husband doing so well after his lung transplant. They have certainly come a long way over the years with that. It is sad about his wife though. That is pretty common for caregivers to neglect themselves though. For one thing it can be very exhausting & stressful lcaring for a chronically ill person. As we all know, stress can also bring on illness. (As for colon cancer, it can come on with zero signs, that is why colon screening is so important.)

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@rmason

@ling123 @windwalker My story is very similar to ling123 symptom wise-except my ID doc put me on the big 3-I did not tolerate rifampin which the cultures showed were specific to my MAC. After a year on the other two, cultures still positive. I cough some, but work full time, exercise daily, and can hike in the mountains! I’m going back at the end of the month to ID- I will not go back on the meds at this time.
And yes-I’m an avid gardener- now raising Monarch 🦋!

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@rmason Raising monarch butterflies! How do you do that? Can you post a photo? That sounds amazing.

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@windwalker

@kp5450121 Hello Karen. So sorry that you are dealing with such serious lung issues. There is nothing worse than not being able to breathe. I saw my mother turn blue many times during her battle with Alpha-1 deficiency. I too was almost a candidate for a lung transplant back in 2013. Fortunately, my case was a matter of clearing out heavy infection from my air sacs. I'd like to try to guide you to to some good help if possible. I do know of a man who received a double lung transplant in Ca. He was turned down by everybody. That was over ten yrs ago, and he is still alive and well today. I will try to contact him and find out where exactly he went. There are a few 'great' lung transplant hospitals I know of. Duke Medical University in S.C, and one in San Francisco. (Will get back to you on that one) I am not saying you need a lung transplant, but at least the medical instituions that do great lung transplants would have great pulmonologists. What part of the country do you live in?

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@kp5450121 Hi Karen. How are you doing today? I am sorry for the delay in getting back to you, but I have been battling the flu or some sort of bug for the past week. The good lung transplant place in Ca., is at UCSF Medical. They have exceptional long term survival rates of lung transplantees. I am still trying to connect with a man in Ca to find out exactly where he went for his. He was initially turned down by just about all hospitals to do his transplant because he would not change his lifestyle (heavy drinking) One place did agree to do it for him, and he is still doing good after 13 yrs. I do not know him personally: he is a brother to a friend of mine up in N.Y. Have you made any appointments since your last post?

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@windwalker

@kp5450121 Hi Karen. How are you doing today? I am sorry for the delay in getting back to you, but I have been battling the flu or some sort of bug for the past week. The good lung transplant place in Ca., is at UCSF Medical. They have exceptional long term survival rates of lung transplantees. I am still trying to connect with a man in Ca to find out exactly where he went for his. He was initially turned down by just about all hospitals to do his transplant because he would not change his lifestyle (heavy drinking) One place did agree to do it for him, and he is still doing good after 13 yrs. I do not know him personally: he is a brother to a friend of mine up in N.Y. Have you made any appointments since your last post?

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Could I please get his name if he would contact me,I REALLY need
TRANSPLANT,I have no life for now you can private message me. Karen HARRELL I
GOT COUPLE OF QUESTIONS FOR HIM. Thank you so much and thanks for
remerbering me. Sorry you been sick.

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@windwalker

Fdixon63 'toby' is short for tobramycin, an inhaled antibiotic. That is what I am on as a maintenance drug to stay free of mac & pseudomonas.

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Just wanted to pass along that On Sept. 2 I was asking what "toby" was short for. Now have begun nebulizing with it. I had my first sputum results come back after starting with a different doctor in August. My sputum shows it is "growing a lot of Pseudomonas. There are 3 different colonies of this bug in your sputum, and 2 of them are resistant to Levaquin." I had been given Levaquin for Pseudo. A. this spring after bronchoscopy and thought it was gone because cough completely disappeared. Not sure if it was gone or just suppressed and came back. The specimen sent in a few weeks ago was the first one I was able to produce since spring. My doc had ordered the antibiotic cefTAZidime 2 gm injection (IV) every 8 hrs which I began yesterday after getting a PICC line placed. I will self administer the IV ceftazidime for 14 days and inhale the Toby for 28 days. Next will submit sputum to be checked. Has anyone else had experience with this treatment?

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