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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine
Replies to "Dear All, I apologize for not connecting with you sooner but I have been very ill...."
<br><br><br><br><br>Hi there. Am wondering if you are on Medicare by any chance? They covered <br>80% of my Toby, and there are scholarships out there to help pay for the rest. <br>Best of luck, Terri M.<br> <br><br>
@tutti Lisa, I feel the same way. The pulmonary specialist I've been seeing since 2014 has given me options of drugs or no drugs. He thinks because I don't have other symptoms and live a normal life except the blood, the side effects from these drugs being taken for long term outweigh the benefit. But if I decide to take them he will prescribe. As scary as this is, I'm actually more scared of the prospect of side effects and how they may interfere with my daily living. So I decided against it and still have not changed my mind even after I had blood clots in my sputum last month. However, when/if the doctor feels that it is time for me to start drug regimen, I will follow his advice.
@ling123, thanks for shareing your story with @ tutti!
Becky
<br><br><br><br><br>Hello. I got three opinions about the meds when I was diagnosed in 2005. <br>Two out of three drs said they wouldn't recommend the treatment because it is <br>hard on the liver and it doesn't irradicate the Mac, it only knocks down the <br>numbers in a colony. I was treated with one antibiotic, and was fine for years. <br>It grew in number again in 2013, then I was put on a monthly regimen of <br>alternating antibiotics. Then, Jan. 2016 showed Pseudomonas aspigillus and then <br>monthly meds got changed. I don't know if refusing the triple med treatment was <br>a mistake or not. I have steadily been losing lung function over the years. My <br>advice is to get sputem tests done every 2 -3 months whether you decide to treat <br>or not. STAY ON TOP OF IT! Don't let it creep up on you and destroy lung <br>tissue.<br> <br><br>
Dear Katherine - you are such an important mentor to so many of us and it makes me sad to know you are going through this terrible time. But you have trained us well and so many others are able to carry on in your footsteps to keep the dialogue going and support those who are new to the forum - we just want you to get better, so rest, rest, rest! I am sending you love and wishes for feeling better soon. Pamela
You take care of you and we'll take care of each other
@katemn you sure have your hands full at the moment. I hope i the tobramycin knocks those nasty bugs quick smart. We need some new drugs and therapies as soon as possible to kill all these bugs. Take care, hope you are feeling better soon!
The same thing also happened to me in October. I never had any problems or symptoms at all before that. I just felt a sort of gurgling just below my throat and it kind of bubbled up and made me cough. When I tasted it in my mouth I spit into a tissue and saw the bright red blood. It happened a few times for about half an hour. I went to ER and a CT scan showed some nodules. It happened about 6 more times with 5 more trips to ER over the next 2 months until I finally had lung surgery in December when they removed the large nodule. No more bleeding after that. That's when I was Dx with MAI. No meds for me yet since I have no other symptoms. I just saw Dr. Kamelhar at NYU and will be scheduling a swallow test and sputum induction (? not sure I have the right term for that). He also said I have bronchectasis and wants me to get an Aerobika to start with and then start treating my acid reflux first. I'm very happy I found this forum and have a learned a lot. I don't offer en comment but I read the posts every day.
Also, Katherine I'm sorry you're not feeling well and hope you recover quickly.
Gina K
<br><br><br><br><br>Indeed, we all will. Thank God for all of you.<br> <br><br>
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So glad you posted. I know how hard it is to fight to feel well and fight for the right medication. Last year i was prescribed toby podhaler and its not approved for non cf bronchiecasis pseudomonas only for cf, which makes no sense, so insurance wouldn't pay and we lost the appeal. Now im fighting them to cover my pain medicine that I've been on for years. Its like having to write a research paper while you've got the flu. I had cipro last month that didn't help, but they won't see me til May. I have a ct scan before the appointment so at least will have new information. That's always good. No need to reply. I hope you get what you need and feel better soon! You are loved!
Becky