Tag Archives: infection

2018 Recap

2018 started uneventfully – peacefully. The weather was very cold, Jarrod and I were both working regular schedules, our kids were just finishing up their winter break from school, and life was finally settling into a comfortable routine for our family. We had no idea what the year would hold for us, but Jarrod and I knew one thing: we were extremely happy to be together.

When our first tax time as a couple came along, we had some minor disagreements on how our tax refund would be used. He had his ideas, and I had mine. And since we had different ideas, it opened up new discussions about what we could do that would make us both happy. Compromise. And since it had been something we had brought up a couple times already, including on our way back from getting married in Colorado, we re-opened the discussion on having a baby together. Jarrod suggested that if this is something we would continue coming back to, we should just do it already and not waste any more time, considering our ages. We gave it some more thought and plenty more discussion, and decided rather than fantasize about it and regret missing our chance in a few years, we would go for it!

In March we took a small family vacation with all 6 kids to Pzazz, which is a family resort here in Iowa. The website promised a swimming area, arcade, good food, a spacious room for us all, and lots of fun overall. When we got there it seemed pretty cool, but as we stayed longer we realized it was aimed more toward a younger crowd. The biggest thing the kids got joy from was the arcade, but it was ridiculously expensive. And our hotel room opened into a giant ball pit, and our room a/c didn’t work. It was hot, stuffy, and very claustrophobic in my opinion. We ended up leaving early. Jarrod and I told ourselves we would plan something better next time we were able to do a family vacation.

During about that same time, I did some research as to which surgeons were the best for our reversal surgeries, and where they were located. I got medical records faxed, forms filled out, flights and hotels booked, and surgeries scheduled. In April, we flew to North Carolina to get my tubal ligation reversal by Dr. Monteith at A Personal Choice. In May, we drove to Oklahoma to get Jarrod’s vasectomy reversal by Dr. Wilson at The Reversal Clinic. Both experiences went very well!

Then the kicker – on May 30th, after complaining to my surgeon for a couple of months (breast reduction and tummy tuck Sept 1 2017) that I had a lump and pain in my right breast, he finally was able to give me a diagnosis. Mycobacterium Fortuitum. It would require months of multiple heavy antibiotics and surgeries to my breast to clean out affected tissue and bacteria. I was told I was not to get pregnant or the baby could be severely damaged by the treatment. He gave me a prescription for 2 heavy antibiotics and told me to start them once I got a negative pregnancy test for the month.

My period was due June 3rd, and Jarrod and I both believed it was incredibly unlikely that I would be pregnant already, considering we weren’t even totally healed from our surgeries yet. I took a pregnancy test on that day, May 30th. It was negative. So I started the less dangerous of the 2 antibiotics and waited the few days for the other one. On the morning of June 3rd I woke up, felt a little off… my breasts were more sort that normal and I still wasn’t bleeding. I didn’t really think much of it but figured since I already had a pregnancy test on hand, I’d take it just to get the treatment going. It was POSITIVE! I couldn’t believe my eyes. And just as fast as the excitement came, so did the dread. What was going to happen with my infection vs. my pregnancy?

So far, these are all things I’ve blogged about in this blog. And if you look back, so you can see so many more details than just a recap version. Let’s just say it was a very rough time for us. Our emotions were high and stress levels were even higher. Check out the 2 posts in June 2018 titled “Not The Boobies” part 1 and 2. I was extremely scared throughout the entire treatment… scared of hurting the baby, and I also felt like the infection would never go away. The follow up to those posts is: I had many different kinds of pills, and was on IV antibiotics for several weeks as well. I had 2 debriding surgeries. Treatment was stopped on November 6th and it seems as though the infection is gone. However, I’m still not 100% certain the infection is gone all the way because of the different little aches and pains from my breasts changing due to pregnancy. But so far, there have been no new lumps, no unusual pains or blotches of redness, no fevers, and my doctors and I do not feel too concerned.

Through all of the treatment of antibiotics and surgeries, I was referred to a NeoNatologist to make sure baby was growing properly and staying healthy. I started seeing her at 16 weeks along, and have seen her every 4-6 weeks since. She has done many ultrasounds including an echocardiogram and growth scans on the baby. She has also done the panorama blood test to check for things such as Down’s Syndrome and other chromosomal abnormalities. Every test and scan has come back perfect! I am currently 34 weeks along and this pregnancy has been as good as can possibly can be. No gestational diabetes, no crazy weight gain, no high blood pressure. Other than the more severe aches and pains that come with a “geriatric” pregnancy, baby and I couldn’t be better. Jarrod and I are VERY happy and excited for baby to come sometime in the next 6 weeks.

During the year we also celebrated everyone’s birthdays, we saw several concerts, went on plenty of movie and dinner date nights, and overall enjoyed our first full year of marriage. Our family found a groove all together and it feels quite natural nowadays.

In July, Evan, my 14 year old son, went to stay in a psychiatric home for a while to get help with some of his anger issues. He remains there, but visits home on weekends and holidays. It has not gotten any easier over the last 6 months to drop him off when he leaves from a visit. But it really is helping him, and I look forward to him coming home likely within the next couple of months. I’m glad I made the decision to do that for him and his future.

In September, Andy, my 16 year old son, had jaw surgery. It had been planned for about 3 years and it was finally time to get it done. The surgeon broke his bottom jaw on both sides and extended it out so it would be more even with his top jaw. I was there for him the whole time, staying with him in the hospital, pureeing his food for weeks at home, and making sure he had his medications and as much comfort as I could provide. It was officially fully healed mid-December. It was about a 3 month recovery. I was nervous about him getting hit in the face by the dog or something, but his recovery went very well, quite smoothly. And he’s all healed!

This year, both Thanksgiving and Christmas were hosted in our home. This ends up falling on us because we have the biggest house, and the most room for guests. For Thanksgiving, my mom came over and cooked for us all. And for Christmas, Jarrod’s mom and brother came over and cooked for us all. Both holidays went very well.

Our Christmas this year was a huge success. Jarrod and I made the accomplishment this year of purchasing all the gifts for our kids with absolutely no help from anyone at all. It may seem small to some, but it was huge for us! All the kids were pleased with what they got, and no one walked away disappointed. The gathering we had went so very well, too, with both Jarrod’s family and my family all under one roof and everyone got along so well. It filled our hearts with love and gratitude that we were able to have all we had this year.

And now we go into 2019 knowing that no matter what the obstacle or blessing, we are strong and have faith that we will come through it together even stronger.

Infection, Pregnancy and Everything Else

So much has happened over the summer, mostly related to my health.  I had posted a few things about it back in June.  So I’ll briefly recap and then start where I left off with a fairly brief explanation of what happened and how I got to where I am today.  Followed by a few bits and pieces from the rest of the family.

In September of 2017 I had a breast reduction and tummy tuck.  I healed very well from it, recovered and returned to normal activity fairly quickly.  In March of 2018 I noticed a couple small lumps in my right breast.  I made an appointment with the surgeon who did the reduction, and he believed at that time it was just unsettled breast tissue from the reduction.  A month later, I had an unrelated infection of my tonsil.  It was treated with strong antibiotics and steroids and went away just fine.  And so did the small lumps in my breast.  I thought it was just a cool coincidence and went about my life.  But when the antibiotics and steroids were all out of my system, the lumps in my breast came back with a vengeance, and I ended up making another appointment with my surgeon.  He prescribed me a few different antibiotics to try over the course of a month.  The lumps continued to grow.  Then in May, he aspirated some fluid from the area of swelling.  When he got the results back he had me come back in to explain it was a serious bacterial infection in the family of tuberculosis, but in the soft tissue of my breast.  He said it would take months of heavy antibiotic treatment to cure it, and told Jarrod and I to stop trying to get pregnant immediately.  This was on May 30th.  On June 3rd we got our positive pregnancy test.  I was referred to an infectious disease specialist.

So all together, my OBGYN, surgeon, and infectious disease specialist (and home care nurses) have been collaborating to make sure I’ve had the best care for both me and baby for the last few months.  I’ve had two debridement surgeries, and I’ve been on several IV antibiotics, switching every time I develop a reaction or allergy.  I had a PICC line for 6 weeks until I could no longer handle it physically – my body was pushing it out (which the nurse said she’d NEVER seen that happen before).  Once I hit my 2nd trimester I was able to start taking stronger (more risky) antibiotics.  But with that, came a referral to start seeing a perinatologist for the rest of my pregnancy to make sure baby handles it okay.  So… so that makes 4 doctors on my team.

But it seems to all be coming to an end…. FINALLY!  Just this week I was released from seeing the surgeon because I have healed so well since the 2nd surgery, and now that I’m on the proper antibiotics.  I see the infectious disease specialist again in a couple weeks, but I expect he won’t want to see me too often, maybe even just a couple more times, because the surgical open wound will likely be closed by then and the infection truly seems to be extremely minimal if not just about entirely gone.  And once I’m finally released from this illness, I can finally focus more on this joyous pregnancy!

E56B4DCA-96AA-490A-B132-91542CABFCB2Speaking of the pregnancy, everything has gone fantastic despite the infection and antibiotics.  I got a Sneak Peek mail order blood test at 9-10 weeks and they gave us the result it will be a BOY!  Then when we went to see the perinatologist at 16 weeks along and the ultrasound confirmed its a BOY!!  I am currently almost 18 weeks along.  Jarrod and I have a name chosen, but we aren’t telling anyone until he’s born.  We have a detailed anatomy scan coming up around 21 weeks along.  I’m trying to arrange a VBAC, but with the baby’s due date being in February, and my only doctor and delivery center would be 45 minutes away in good weather, I don’t know that it will be a possibility.  But I’m still going to try.

Unfortunately, my health issues kept us from doing much of anything as a family this summer.  Having a PICC line and an open surgical wound all summer kept me from doing anything involving water.  And being pregnant kept me from going on amusement park rides.  The antibiotics have made me feel very weak and nauseated.  So pretty much anything that anyone wanted to do, I was not up for.  Jarrod and I went ahead and let the kids who had the opportunity, go do things with their friends.  And I insisted that he take his girls to the Iowa State Fair without me.  All summer I felt like such a spoil-sport, a wet blanket, and nuisance and inconvenience.  I must say it’s probly been my worst summer ever because of all the guilt I’ve had from keeping the family from having fun just from being sick.  Of course it’s certainly not like I chose to be sick.  I was very much looking forward to going to Adventureland, the Iowa State Fair, and other summer festivities.  I very much hope next summer is much more fun for us all!

There are a few other things that happened this summer too…
– Autumn and Willow moved in with their mom in a town about 90 minutes away.  But they still visit every other weekend.
– Evan went to a residential psychiatric facility to get treatment for his anger and impulse control issues at last!  I’ve been trying to get him help for years, and I’m so very glad to report it’s helping so far!
– Andy is a few short days away from getting his jaw surgery to extend his lower jaw and improve his overbite.
– Jarrod has lost about 60-70 pounds in the last year and has been visiting the bariatric/surgical center that can do excess skin removal – his surgery is pending insurance approval.

And finally, I must say my husband is amazing.  Through all of this illness, all of the bullshit, he has stood by me and supported me through it all.  He’s been my rock, my best friend, my encouragement, my caretaker, and my reason to keep going on.  Thank you so much for everything Jarrod.  I couldn’t have made it without you.  I love you more than you’ll ever know.

Not The Boobies! (part 2)

….to continue this infection “adventure”…

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.

Not The Boobies! (part 1)

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.

IMG_2777
It says: Go ahead with Clarithromycin, Stop trying to get pregnant, Once you have a negative pregnancy test, add in the Cipro.

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…..