My name is Lynn, I’m 67 years old and I live in Pearl River, Louisiana.
My name is Dr. Nicole Lapinel and I’ve been in pulmonary critical care for the last few years.
Lynn had had a long path—diagnosis, you know, many years before she had actually met me.
When the infectious disease doctor became aware that I had NTM, she told
me about a doctor who was involved in treating NTM, which is Dr. Lapinel.
I was very impressed the first time I met you, I was impressed with the
abundance of knowledge that you had about this illness.
That makes me feel very, very good to hear that. Very comforting for me as a physician.
My first visit was involved. I was a bit intimidated and overwhelmed at this point because it was just so much information for me to absorb.
During that first appointment, I always try to get as much of that
background history as I possibly can. So, all of that is important in terms of setting our pathway, setting our treatment regimen up and everything like that, getting more of that history. And I hope that even though it was overwhelming to kind of hear all that, that you had a sense that we are going to be taking this kind of step by step.
We had put you on a daily regimen and discontinued one of the antibiotics that you were on and then added two more antibiotics to that regimen on that very, very first visit.
I wasn’t excited about taking more medication, but I felt hopeful for the
first time in a long time of being treated properly.
When Dr. Lapinel told me that my sputum samples were still coming back
positive, I was disappointed. I had a lot of hope that I would see more of a result at this point.
Treatment can potentially not be successful for a variety of reasons. That is something that we also talk to our patients about in terms
of managing expectations.
I knew there was a possibility after six months if I was still
producing positive sputum samples, that we were going to add to the medication I was already taking.
So, it was actually six months into your regimen when cultures were
still positive that we actually decided to add a new medication, an inhaled antibiotic, which is called ARIKAYCE.
Knowing that ARIKAYCE was available for people like me, made me
feel hopeful that I could get this disease under control.
I felt confident that this was the appropriate addition to the regimen, because for the first in its time for MAC lung disease, we actually had an evidence-based approved medication that was also FDA approved.
Whenever we’re introducing new medications, we like to go over those side
effects because that’s…that’s part of handling the treatment. I always discuss cough because so many patients are already suffering with cough.
So, I was prepared for just what she said, the cough, the hoarseness, and the shortness of breath. But she also gave me ideas on what I could do to make it better.
I did keep track of my side effects. I took personal notes so that when
I did see you I could relay them to you and not leave anything out.
I enrolled in the Arikares Support Program. They have been very, very
helpful to me. Someone has come out to my house initially to educate
me on how to use the medication. If I had a problem all I had to do was
make a phone call and somebody was always there to help me immediately.
I’ve actually heard truthfully from many patients that they’re very satisfied with the support that they provide through the program.
We started to see that your sputum cultures started coming back negative
within that first six months of treatment on ARIKAYCE. And so that was a very welcoming sign that we were finally getting the effects, you know, that we had hoped for.
When I found out that my sputum sample was negative after taking ARIKAYCE, I was very excited, and I was very grateful.
You finally got to the point of actually seeing that progress from having
consistently positive cultures to turning to negative cultures.
I appreciate you, Dr. Lapinel. You made sure that I got all of the
proper treatments. You didn’t give up when one of them or three
of them didn’t work, you added to it to make sure that we continue to try to fight this illness.
I appreciate you, the commitment, how seriously you’ve taken this. And just overall being just a wonderful, agreeable person to, to kind
of go with on this journey.
I think that all of the work that we’ve done, all of the treatments that she has recommended and put me on, everything through all of this time has been so successful.
My advice for someone just starting ARIKAYCE is to be positive and take one day at a time. As of today, I’m still MAC-negative.
I feel good about the future.