Mayo Clinic Connect
I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!
Liked by Dee, adair, crepass
I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I’ve been told this mycobacterium is rare and difficult to treat.
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Welcome Kay, so glad you found our Forum! In terms of my own lungs .. since I was diagnosed in 2007 .. my reports say “mild scarring both lungs” which show up any time I have an Xray or Ct scan. Absolutely NO has there every been any mention of surgery! You are in good hands at Mayo Clinic! Just do as you are instructed .. just as I did .. and you will come out just fine!
Kay, this is just me .. but my advise to you is read through ALL the past posts/pages. From these you will receive a LOT of good information and help. We are all individual in terms of what may work for us .. you will find REALLY good ideas on taking the meds. For sure watch for info on probiotics .. they are important .. lots of good info here on that. Good info on when and how to best try things and getting organized.
PLEASE do keep coming back to this Forum .. you will NOT feel isolated if you do so because we are ALL on this journey together .. and we share it together! For me PERSONALLY .. and it is only ME .. I found the local “support” group not a positive experience. For me .. MAI/MAC is only a piece of who I am .. it does NOT define who I am .. and in that particular group I felt it had become their identity. MAC/MAI is NOT my identity. Sorry but that was just my perception.
But Kay, I promise you .. if you keep coming back to OUR Forum .. you will be a part of all our journeys .. and you will NOT feel isolated! Sending you a Big Hug! Katherine
Liked by Dee
I was recently diagnosed with bronchiectasis as well and I was quite shocked. I have it in several areas of my lungs, but I have had virtually no symptoms until recently – I had slight shortness of breath and oddly enough, since the diagnosis, I feel more tight in my chest. I haven’t had many chest infections throughout my life. I thought that perhaps I was misdiagnosed, but I guess CTs don’t lie? I also have a “possible” mycobacterial infection or colonization but I have to wait several months to see a specialist as my referral to the specialist has been marked “routine”. This doesn’t seem like routine to me. I am concerned that the mycobacterial infection could be further damaging my lungs. Does anyone know if this is possible? I am concerned about the wait to see a specialist. Please help! I feel like this is a life sentence!
Hello fransky, Welcome! First off .. WHY are you being told: “but I have to wait several months to see a specialist as my referral to the specialist has been marked “routine” “. Question: Is this an insurance issue .. your doctor’s decision??
I can ONLY speak for myself .. BUT as far as I am concerned “the squeaky wheel get the oil”!! If it is an insurance issue .. you DEMAND TO be referred/ GET TO an Insurance Supervisor and DON’T give up until you have been expedited to a quick appointment to an “Infection Disease Doctor”. Do whatever you have to do .. make as many phone calls as necessary to however many people you need to call. After you read the pages of this Forum you will know what to do/say/fight for!
Only AN “Infection Disease Doctor” who is familiar with MAC will be able to determine IF you have MAC or not. The reason I am advising you to PUSH HARD to get into a knowledgeable specialist is IF you DO have MAC colonies at this time .. yes they COULD multiply as time goes by without the necessary antibiotic treatment. This is at least my understanding. Myself .. I delayed antibiotic treatment and ended up with a second mycobacterium. Would it take months .. that I’m not sure of .. but for me .. I would err on the side of caution. You are given just one body in this lifetime .. take good care of it!
NOW .. that done .. do NOT put the horse before the cart (if you read past posts .. AND I encourage you to educate yourself by doing so .. you will see horse/cart is a favorite phrase of mine!) .. meaning .. do NOT assume you have MAC BEFORE you have even been diagnosed! AND then IF you are diagnosed with MAC .. nope it is NOT a life sentence! After you have read through all the pages of the posts you will be delighted to see that there are LOTS of us still kicking on our Forum .. ALL at various points of our journey with our MAC! Not only are we still “kicking” .. but many of us are actually having fun and enjoying life! How ’bout that! I know this is a tough time .. even kinda scary .. but know that you have found a place where we have all been on this same journey. Keep coming back .. there are really nice supportive people who are here to help you along every step of the way! Sending you a Hug! Katherine
Thanks for your quick response, Katherine, and for your encouragement. I live in Canada which is why the long wait to see a specialist. My GP referred me to a respiratory specialist, but from what you are saying, I should see an infectious disease specialist as well. I will try to press this with my GP as well as other people in the system, as you suggest. I am scared. very scared. thank you for the hug. I really needed it. 🙁
Hello fransky .. welcome back! I know ZERO about the Canadian system .. BUT I am a great “googler” .. so here is what I would do if I was you:
1. read through ALL the pages of this Forum .. you will be amazed at the knowledge you will pick up .. make notes about what you think may be relevant. Personally I cut and paste into my “Word” computer program . then print it out as a reference when you meet with your doctor.
2. I googled “TIPS ON GETTING A REFERRAL TO A SPECIALIST QUICKER IN THE CANADIAN SYSTEM” .. I didn’t read through any of it .. but was AMAZED at all the threads that came up!! WOW! Not surprised! Anytime you have a “system” .. people have figured out how to work it! SO .. YOU be smart and work the system .. just figure out how!
3. MOST importantly .. even IF you DO get a MAC diagnosis .. yes it IS pain in the batooty!! BUT it sure could be a WHOLE LOT worse!! Come on .. count your blessings .. it is NOT incurable cancer .. it is NOT SO many really horrible things .. PLUS you found this Forum of people who will walk you through it. Personally .. I was diagnosed in 2007 .. and have been stable since May 2014 .. AND am leaving on a WONDERFUL trip 8/31 to have a WHOLE LOT of fun in life! There IS life after the diagnosis. AND THAT IS IF you get the diagnosis .. as I said .. don’t put the horse before the cart .. count the blessings you have in your life right this minute .. be kind to yourself in this period of time .. and know that we are all here for you! Sending you yet another hug! Katherine
Thanks, again, Katherine. You are a very positive person! I hope you have a wonderful trip. Where are you going?
fransky, actually prefer not to say .. just know it is somewhere I LOVE to go and where I will find joy and serenity in it’s beauty! Thank you for your kind thoughts .. I am looking forward to it! Hugs to you! Be kind to yourself while I am gone and come back for support from the lovely people on our Forum! Katherine
Of course…and I am sorry to ask. That is private. Enjoy! And thank you again for your support.
Liked by Katherine, Alumni Mentor, Dee
I am new to this forum, and I am researching treatments for my husband. He has severe COPD and was diagnosed in December 2015 with MAC. He was taking ethambutol, rifabutin and azithromycin from December until the end of June and was doing pretty well. We were in Florida at the time and drove to NJ at the end of June. Two weeks later his condition worsened and he was diagnosed with mycobacterium abcessus. He has been on IV amikacin 500 mg every 12 hours and imipenem/cilastatin 1000 mg every 6 hours, and azithromycin 500 mg daily for seven weeks, one more week of IV to go. The infectious disease Doctor said he will continue the azithromycin and will add Bactrim when the IV ends next week. We will be returning to Florida, hopefully in three weeks. We live about 30 miles north of Palm Beach. We like his pulmonary Doctor, but he doesn’t have a lot of experience with this type of infection. We are considering consulting with doctors at Mayo Clinic in Jacksonville, FL or at Cleveland Clinic in West Palm or in Westin, Fl. Can anyone recommend a doctor? It would be wonderful to have a doctor we feel confident in. We have yet to find someone. ( Prior to the MAC diagnosis, he had been seeing a pulmonologist at Univ. of Pennsylvania. CT scans showed some nodules that were increasing in size over time. He felt that bronchoscopy was too risky due to the condition of my husband’s lungs, but referred us to a radiation oncologist at Penn. My husband had radiation for “presumed malignant neoplasm” in his right lung in November 2014. We saw the pulmonologist and the oncologist again a year later and CT scans showed some new nodules. They said it was cancer, never suggested doing sputum cultures, even though we said my husband seemed to have an infection with increased mucus and cough. We went to Florida, and a few weeks later he was diagnosed with MAC! ). As you said, Kathryn , it’s important to do your homework. I wish we had gotten a second, or third opinion before my husband underwent radiation on his already damaged lungs.
On this webpage http://mayocl.in/1mtmR63 you’ll find the contact numbers for all 3 Mayo Clinic campuses, including Jacksonville Florida. If you call, they can guide you further about MAC experts available for consult. You can read more about Pulmonary Medicine in Florida here http://mayocl.in/2dsqeeM As several members have mentioned on Connect, the physicians at Mayo Clinic work together. In fact the pulmonary medicine physicians routinely consult with colleagues in Cardiothoracic Surgery, Cardiovascular Diseases, Hematology/Oncology, Infectious Diseases and Rheumatology to ensure all aspects of a patient’s problem are evaluated.
It is important to do your homework as you say. There are a couple of members here who also live in Florida and can share their recommendations. @boomerexpert @Paula_MAC2007?
Thank you Colleen. I contacted mayo clinic in Jacksonville but was told they are not taking any more Medicare patients for at least a year. I am so disappointed! I am so desperate to find a good doctor for my husband.
Diane, if I was sitting in your shoes here is what I’d do. I takes work .. but I’ve done it for my husband .. and I’ll bet you will do it for yours!
1. I would google “Infectious Disease Doctors” and then “Pulmonologists” within reasonable driving distance from your home or whatever you are willing to fly to.
2. Google the name of each. Check into each bio.
a. Check to see if MAC/MAI is ANYWHERE in their area of interest .. papers they have written .. ANYWHERE in their bio
b. Look to see where they went to school. I feel the tougher the school they went to .. the brighter they probably are.
3. If you find more than one
a. call and ask: How many MAC patients has the doctor treated in the past 12 months
b. explain your husband’s situation and try to get him in ASAP
I hope the above helps just a little bit. Don’t give up. I am a great “googler” .. It takes time but it is amazing what you can find on bios by going from link to link. Sending you a hug in this tough time! Katherine
Thank you Katherine. I will get to work on this!
Good for you Diane! Just develop your plan .. and work that plan! You go girl! Good Luck! Hugs! Katherine
Was given the news of having the mycobacterium abcessus at the end of nov. Totally sent me on an crazy feeling i have an infectious disease doctor. Imipenem and amikacin for 2 months . Now on claritromyc, ciprofloxacn anddoxy-cycline 2 times a day. This has been trying but i am feeling better. According to our control disease center they did not know how to treat this disease. Just had another CT scan and do not see the dr for about 2 weeks. Not fond of going out anymore.
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