I went to the Infectious Disease specialist, Dr. Kumar, and he noticed right away how knowledgeable I was, and how much research I had done on my own. In a way, I think that helped him communicate with me. He was showing me scholarly articles that I had already read on my own to better explain my situation. Jarrod and I both agreed it would have been a bit more encouraging if he had just been able to tell us the information rather than site articles, though.
Between Dr. Kumar, Dr. Coster, and another doctor, we worked up a plan to get rid of the infection the safest, hopefully fastest way. But it won’t be pretty: After showing improvement with the 2 antibiotics, it was decided to bring it down to one for safety, removing the Cipro. I continue to see gradual improvement with just the one, and it has been a week since it was changed. Next Thursday (a week from today), Dr. Coster will surgically open and debride the infection, removing all fluids and infected tissue, and then leaving the wound open to heal from the inside out. This is to eliminate the environment where the bacteria are thriving, and make the single antibiotic as effective as possible. (Don’t worry, I won’t post photos.) Once the open wound has healed entirely, and the infection is 100% healed as well, Dr. Coster will then surgically remove the scar tissue and make my breast cosmetically correct again.
My estimated treatment will be approximately 6 months long. I’m hoping though, with the slight improvement I’ve already gotten, that I won’t have to be on meds that long. I hope it heals faster than that.
Another piece of this puzzle won’t be figured out for a few weeks yet either. We know I have the rare atypical mycobacteria infection, but we don’t know which strain or which medication it is most sensitive to. Those tests take about 6 weeks to get results back. Once those results are back, perhaps I can be on the one antibiotic that will knock this out the fastest… still hoping for a quicker recovery.
But I know these things take time. I’m trying to keep myself out of the intensive research and anxiety, keep my eyes on the light at the end of the tunnel and the wonderful man supporting me, and remember this too shall pass. I have a great team I’m working with, and this will get better.
As most everyone knows by now, I had a breast reduction on September 1, 2017. It was a pretty drastic reduction, but was deemed medically necessary because of the pain it was causing my back, shoulders, neck, skin, etc. I was excited to get it done! The surgeon, Dr. Coster, assured me he wouldn’t go too small, since I felt it was a part of my identity. However, immediately after the surgery I was extremely unhappy with the results. The pain from having large breasts was gone right away, but I felt he went WAY too small. He again assured me that with healing, they would settle and be exactly what I wanted. I had no choice but to take his word for it. As the settling of my breast tissue progressed, it felt lumpy and bumpy and sometimes painful. But overall, it wasn’t a terrible process. I must say though, still not too thrilled with how small he went, I would have been happy with about another cup size larger. But there’s really nothing to be done about that now but accept it and move on.
Fast forward to 6 months later, in March of this year. There was a painful lump about maybe the size of a large marble that was not going away in the top part of my right breast. I made an appointment and talked to Dr. Coster about it, and he told me it was still settling breast tissue, and not to worry too much about it. But it didn’t go away. And it continued to be painful.
In April I had an unrelated illness, a tonsil infection, for which I was given 3 weeks of antibiotics and steroids for the inflammation. To my surprise, the lump in my breast went away as the tonsil infection went away. I really didn’t think much of it until the steroids and antibiotics were done. About a week later, the lump in my breast came back. I made an appointment, and in the 4-5 days it took until that appointment date, the lump quadrupled in size and became much more painful.
Still, when I saw the Dr. Coster toward the beginning of May, he told me it was just settling breast tissue, and I explained what happened with the course of treatment I had for my tonsil and stressed the pain and concern I had. So he gave me some stronger antibiotics. They did no good, so after a week I was prescribed the same antibiotics I had been on for my tonsil. So another week later, the antibiotics had not worked, and he did an ultrasound. He found a pocket of fluid, and aspirated some of it with a needle (NO fun at all, I say!!). He sent me home with more of the same antibiotic and low-dose steroids. It started to do a little better with the steroids, but as the dose decreased, the swelling increased again. No relief.
1 day before my next appointment I got a call from the nurse saying the fluid they aspirated had been sent to the lab and cultured. The nurse said the result was a super-rare bacteria in the same family as Tuberculosis. She said to keep my appointment and the surgeon would explain in more detail and discuss treatments during that appointment. So yeah, if you know me, you know I want as much information as possible for whatever new thing happens to me or a loved one, medically. Science and medicine fascinate me. So I scoured the internet for information about TB-type infections of adipose tissue (fat tissue). I found a large number of options of what the infection could be, looked up case studies, and went to bed that night knowing this would be a very long process.
The next day at my appointment, Dr. Coster told me this was a non-tuberculosis atypical mycobacterial infection. That is basically a long way of saying this is a very, very stubborn and medicine-resistant infection that will take anywhere from 3 to 12 months or more to heal with the proper antibiotics and the potential for surgery to remove infected tissue. Seems it has a slightly rising occurrence in post-surgical patients, but usually with breast augmentation rather than reduction. No known cause other than just environmental exposure. He had only ever seen one other case in his entire career, and he’s a pretty experienced surgeon. He also said NO PREGNANCIES because nothing about the treatment is pregnancy-safe. He gave me two antibiotics which have some pretty severe possible side effects – Ciprofloxacin and Clarithromycin, and this note.
This was on Wednesday, May 30th. Jarrod and I had been actively trying to get pregnant, so there was a very small chance that I could have conceived during the 2 weeks since his vasectomy reversal. I took an early-detection pregnancy test that day, being only a couple days from my expected period, and it was very clearly and plainly negative. So I started taking both medications immediately.
As of today, 6 days later, there has been no improvement. The lump is a little bigger, and now takes up about 1/3 of my entire breast. It is painful, and I can no longer go without wearing a bra to bed, which is miserable for me. My skin is discolored where the lump is, and without the medical knowledge of this possibility, I am concerned this infection will come through the skin.
I have an appointment with a specialist at the Center for Infectious Disease tomorrow (Wednesday), and hopefully he will have answers as to what medications will certainly work. Hopefully the lab culture results have come back to show what medications this bacteria is sensitive to, and we can hit it hard and kill it! At this point I am open to anything, even surgical, to get this gone as fast as possible. Neither Jarrod nor I want to wait an entire year or longer to get pregnant, considering our ages and the financial and emotional investments we’ve made in our reversal surgeries. But I know being healthy first should be my first priority. I just want this bacteria out of my body!!! It’s not welcome here, dammit!
It is also very important to mention here that Jarrod has been amazing through this all. In our 9 months together, he has been there for me through my tummy tuck and breast reduction, a couple nasty tonsil infections, of course my tubal reversal surgery, and now this. Seems I just can’t stay healthy these days. But he is absolutely amazing, supportive, helpful, and always listens to my rants and anxieties, and puts up with my ridiculous amount of intensive research that is admittedly entirely excessive. He’s the absolute best husband and best friend, and I don’t know what I would do without him by my side.
To be continued in “Part 2” once I have some more answers, and perhaps some progress in the right direction…..