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I have Absessus and pseudomonas. The Absessus was diagnosed end of last year. I was being treated for pseudomonas at the time. I had been hospitalized for IV meds and sent home with a line. The ID suspected MAC, but came back with Ab. He ordered another iv line and iv Imipenem and two oral meds. I started those in January and didn’t make it through the day due to a reaction to the Imipenem. His next course of treatment was not feasible. Infusions twice a day at the hospital 40 minutes away for three months! Plus oral meds.
I switched doctors and that hasn’t been any better. I did have a bronchoscopy in February that confirmed the diagnosis. I’m currently having no treatments and have been put on the “back burner” while she investigates. That was 4 months ago. She had ordered a PICC line for Tigecycline, Bactrim and Arikayce nebulizer. It was a mess. She had no clue about Arikayce and didn’t understand why the local pharmacy had not filled it. I told her my research showed my insurance did not cover and my out of pocket was $16,000 a month!! Plus no one ordered my PICC line, but my meds were ready.
I am having a CT this week ordered by my PC to see what my lungs look like. I also had Covid 4weeks ago! We will decide what path to take after my report.
Treatment for Ab is more intense then MAC and the results are not great.
Probably more than you wanted to hear, but I don’t see a lot of Absessus patients on here and finding a doctor that really knows is difficult.
For now, since I feel ok I’ve decided to take this path. If I seek help, it will have to be long distance and travel is not a great option.
Replies to "I have Absessus and pseudomonas. The Absessus was diagnosed end of last year. I was being..."
I have Simiae which is also almost impossible to treat. I have many health issues and don’t want to risk the side effects of the medications. We are also on the watch and wait plan although I don’t really like what we are waiting for. I have two great doctors at Cedars Sinai in Los Angeles, but all they do is CT and sputum every six months. I just do airway clearance, exercise and ;good diet. I really can’t afford the kind of prices I hear anyway so it’s in God’s hands now. Your story touched me and I send you all good luck and my prayers.🙏🏻
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Bamaqueen. Hi. Wow, you've been going through a lot.
I have been dealing with pulmonary issues for five years now -- Bronchiectasis, Pseudomonas, MAC and now M. abscessus. I could not take the Big 3 but once had a PICC line and did several rounds of Tobramycin. I too had COVID and was an inpatient for 8 days. Not on any medications now for about six months. The doctor is going with the "watch and wait" program. I nebulize the 3% and 7% Sodium Chloride twice a day. He will start treatment based on my condition, i.e. appetite, fatigue, any shortness of breath, night sweats. Question: You're having a CT this week? Surely it is not your first. Interesting that was ordered by your primary care doc. I have changed doctors twice. Once because the first pulmonary doc did not have the expertise needed and finally said, "I don't think I can help you." He never offered to do a referral or anything. I found a doc in Atlanta (3 1/2 hrs away) who was great. After a couple of years I had him refer me to B'ham (1 1/2 hrs away). I still wear a mask in certain situations and try to be careful. COVID is around again and I just feel that one more viral or bacterial lung problem may be all I can fight off. Anyway, I just wanted to respond as I saw a lot of similarities between your bio and mine. Blessings.
Faye