Saturday, August 8, 2015

Mastitis During Pregnancy

EDIT: Last update added on November 21, 2016

Saturday, August 8, 2015
I don't normally put personal things on my author blog, but because so many people have never heard of what I've been going through, and because others missed my posts on Facebook and wanted a better place to read about everything, I really felt I needed a more permanent place to put this information. I hope by posting these things, I'll help someone somewhere who is experiencing mastitis while pregnant know what to do and what not to do.

By the way, my case is an extreme, severe case. Most people will NOT go through what I've experienced! But if you do, please know you're not alone.

I put up regular updates on Facebook and I'm going to be copying and pasting those updates here (while removing the unimportant parts of those updates), with dates included and some partial entries from my journal to fill in the blanks. I'll be running this post like it's "live," meaning I'll add updates as they happen in the future. (And I'm hoping not to have too many more, now that things are finally winding down.)

The Beginning
I first noticed painful lumps in my right breast around the end of June 2015. (I was just over five months pregnant at this point.) I did a bunch of online researching, and found that they were most likely blocked ducts. I didn't worry too much about them, since I'd had a couple earlier in the pregnancy that had worked themselves out.

However, over the course of two weeks, they didn't go away and actually got much more painful. My next regular pregnancy checkup with my OBGYN was scheduled for July 13, so I decided to wait until then to get the ducts checked out.

By Friday, July 10, I was in so much pain, I couldn't handle not doing something. I read online that lavender (essential oil) would help clear up mastitis and blocked ducts, so I mixed several drops of that with a tablespoon of coconut oil and started applying it throughout the day. It seemed to help with the pain, but I began oozing green pus from my nipple. I also massaged and tried hot showers and compresses and many other things.

Friday evening, going off of what I'd read online, I expressed some of the infection (pus). By Saturday morning, the entire right half of my breast was bright red, incredibly painful, and hot to the touch. The infection had spread across triple the original space. So, my mom took me to an urgent care (my husband was at work).

The doctor explained why what I'd done hadn't helped and had actually made the problem much worse. (And more on that in my first Facebook post below.) She put me on amoxicillin and told me to have my regular OBGYN check up on it the following Monday, at my already-scheduled OBGYN appointment. I went to that appointment and the doctor told me the antibiotics wouldn't clear things up for at least a week.

Facebook post, Wednesday, July 15, 2015
(Four days later)
So, I've been experiencing something the past week that has been absolutely horrendous and incredibly painful. The only reason I haven't said anything about it here is because it's personal. But I decided to speak up because others who experience this might do things badly like I did. :-)
Here's what I've learned:

1. It's possible to get mastitis while pregnant (milk production begins at the conception of the baby)
2. It's a billion times more painful and horrible than getting it at other times (I had it both while nursing and weaning. Trust me - this is much, much worse)
3. Things that work and relieve while nursing (and weaning) only increase the infection (or cause other problems) while pregnant
4. There's not a lot of solid information available for women who get mastitis while pregnant

I'm on antibiotics, after everything I tried on my own didn't work. (And both doctors I've seen explained to me why nothing else helped, then explained why those things made the issue much worse.)

The gist of their explanations:
While nursing, everything you do to clear up mastitis (including natural remedies, any sort of touching, etc) encourages milk flow. This is BAD while pregnant, since the milk doesn't have anywhere to go.

When you aren't nursing, everything you do to clear up mastitis (including natural remedies) tells milk production to stop. If done while pregnant, this causes issues for the pregnancy and leads to not being able to produce milk when the baby is born. (Many home remedies are natural sources of estrogen. Too much estrogen is dangerous for mom and baby. Over-the-counter products are just as bad/dangerous.)

Lastly, trying to stop milk production not only causes issues when the baby is born, but methods have to be continued the entire duration of the pregnancy, which again, causes other issues.

Both doctors said the same thing: I'll most likely get mastitis again before the baby is born. And both doctors warned me that the infection and pain will take more than a week to clear up, especially because it's such a severe case.

Anyway. Live and learn. If you don't see me out and about a lot right now, this is why.
(End of Facebook post)

I took Tylenol - the maximum dose recommended - and that helped a GREAT deal. Which, of course, surprised me, since Tylenol hasn't ever helped my pain before. :-)

The next few days were absolutely miserable. I couldn't use my arm at all and couldn't bend over, move around a lot, or do anything that increased my heart rate.

On Wednesday, July 15, I called the nurse at my OBGYN office because some of the hard/red spots were bruising. I wasn't sure if this was normal or not. She said that it does happen sometimes, and that if the hard spots didn't start softening in the next day or so, I'd need to go in and get checked out because the antibiotics probably weren't working.

By the next day, the redness and pain started clearing up. This was a huge relief. But I started leaking pus again. As I wrote in my journal, "I'M SO TIRED OF DEALING WITH THIS!!!" :-) Sadly, the road ahead of me would be a very long and painful one. :-(

On Friday, July 17, I talked to a nurse again. We scheduled a follow-up appointment for the next Tuesday, as things seemed to be clearing up and we wanted to be sure. But on Saturday evening, the pain came back as strong as it had been before and a new red, painful spot appeared.

Facebook Post, Sunday, July 19 at 9:33pm
(The next day)
Heading to the ER for the mastitis, as the pain has come back really badly and the infection is spreading. Please keep me in your prayers. :-(
(End of Facebook post)

That Sunday was probably the most painful the mastitis infection itself ever got. I should have gone to the ER Saturday, but didn't want to make a big deal out of it. Sigh.

Facebook Post, Monday, July 20 at 3:01am
(Sunday evening/Monday morning)
Back from the ER now. They think I had two infections - one that amoxicillin worked against and another one that amoxicillin is ineffective against. Switched my antibiotics to clindamycin. It *should* clear things up in the next 48 to 72 hours. However, I'm developing an abscess. If the infection doesn't clear by Tuesday/Wednesday, I get to have surgery to drain it. Really, really, really praying that won't need to happen! I was hoping my knee surgeries would be the last surgeries I'd ever have. :-(

Thanks for your prayers! I really felt them tonight. And many thanks to my friends and family who have been checking in with me regularly during the last two weeks. This has been such a struggle and trying time - it helps knowing I have people to turn to. Makes the trial a lot less lonely.
(End of Facebook Post)

At the ER, they ultrasounded the infection. Women with mastitis, hold on tight, if this ever has to happen to you! I can't even begin to say how painful that was. But it was necessary.

Now, a break to mention three things I learned from my breast specialist/surgeon since this whole thing has started:

First: When there's pus in the breast, an abscess has already developed. Pus isn't a normal occurrence with mastitis - you can be infected and have red, swollen tissue, without pus actually being present.

Second: While at the ER, I should have insisted on them doing cultures of the pus. Why? Because they would have found out exactly what sort of antibiotic I needed to be on, thereby preventing a month of three different types of antibiotics.

Third: According to a mastitis study mentioned on Wikipedia (I HIGHLY recommend reading that entire mastitis article! It was very helpful), antibiotics only clear up 15% of mastitis cases. Actual nursing clears up the rest of the cases. Where nursing isn't possible, incision and drainage is almost always required. So, if you're in my boat (mastitis during pregnancy) just know now that it's going to happen and it really will make things better in the end.

In fact, at that first appointment with the doctor to verify you really do have mastitis, I would a) insist on cultures (expressed through the nipple, if possible) being done immediately (it takes seven days for some of the test results to come back), and b) schedule an appointment with a breast specialist who will most likely tell you that incision and drainage is the best course of action. I totally agree! Rather than being scared of it happening like I was, embrace it, because healing will come soon after.

Facebook Post, Wednesday, July 22
(Two days later)
I had a follow-up appointment today for my Sunday ER visit. The physical examination showed that my abscess hadn't gone anywhere and that I'd need further work. They sent me to the hospital for another ultrasound and the request that the infection be drained.

The hospital radiologists did that ultrasound (ouch) and compared between Sunday's and today's. And... no change whatsoever. The antibiotics aren't working. Again. The infection hasn't spread, but it hasn't gone down at all either, even with the stronger antibiotics.

We decided to go through with the draining (needle aspiration), but there wasn't a big pocket of pus, only tons and tons of small ones. They were only able to get a tiny sample out with a needle, which they're now sending to the lab to figure out what kind of bacteria it is and to hopefully find antibiotics that will work against it. Mastitis nearly always responds to amoxicillin and when it doesn't, it responds to the next stuff they put me on. I'm just really "lucky" to be in the totally random infection group.

(Note from present-day Andrea: because nursing clears up mastitis, and because amoxicillin is almost always the first antibiotic prescribed, most doctors believe this particular antibiotic is the one that works the best. Yes, it does, in that 15% of cases where antibiotics actually work. But it doesn't work nearly as often as health professionals believe. Simply nursing, which isn't possible while pregnant (unless you have a child currently nursing) is what clears things up the most.)

They then manually drained the pus by putting a hole in the tissue above it and squeezing it all out. The numbing didn't work because I'm too swollen and infected.

I am really praying I never have to experience that again. I can't even say how horrible and painful it was. I can barely move anymore, and the entire area is on fire. Clothing is excruciating to wear. This is the most painful it's been since the infection started.

Because of Pioneer Day (Utah holiday), we won't find out until Monday what antibiotics will even work. I'm needing to continue using the ones I've got to prevent farther spreading of the infection, since things haven't gotten worse while on it. (Thank goodness.)

I'm incredibly exhausted now, physically and emotionally. Really hoping for answers... and really, really, really hoping and praying not to experience this ever again. I've had two doctors agree that because I have mastitis while pregnant, it's almost guaranteed I'll get it again before the baby is born, since there are still three months to go. Just can't handle thinking about that right now.

Me and myself have agreed that it's someone else's turn. Any volunteers? This past year has thrown a lot of really, really weird and horrible (and expensive) physical trials at me. I'd like to take a break now. :-)
(End of Facebook post)

The next several days were horrible. I was incredibly close to breaking down at every moment. Though I don't cry easily (even while pregnant), crying happened frequently. I was at my tolerance threshold from the pain and exhaustion. During this time, my mother-in-law came to stay with us and help out. Such a blessing! However, the infection got worse (again) and was exceptionally painful. Not only that, but the old flu symptoms came back really strongly. So not fun!

Facebook Post, Monday, July 27
(Five days later)
Update on my situation: I had a follow-up appointment at my regular doctor office today to get results from the lab. The first set of cultures came back negative. The second set won't be finished until seven days after the sample was taken, so I won't know what sort of bacteria I have until Thursday, at my next appointment.

The infection got really, really bad over the weekend again. It ended up breaking through the old needle hole made five days earlier and drained itself. Yeah, that was painful... but I did feel marginally better after, with the pain from the pressure lessened. The needle hole closed off and the infection is building up again, but I'm really hoping things will start looking up soon. I've had mastitis for over three weeks! It's been horribly awful and an experience I'm hoping not to repeat.

I absolutely love the doctors who are working on this with me. After talking it over, we've decided to try a third antibiotic, a strong, broad-spectrum one (keflex), with thoughts that it may change again this Thursday when we get more test results back. If this antibiotic doesn't work, I'll be going in for surgery to be more "aggressive" with the deeper infections. (The surface ones are the ones that were drained this week.)

Also, if the rest of the cultures come back inconclusive, my doctors office has an infectious disease specialist who will be taking on my case. Yayness. :-) (He can't take it on until the test results come back, in case you're wondering.)

Even though I'm still sick and am in tons of pain and those flu-like symptoms aren't completely gone, I'm feeling a lot more positive about the situation. First, I've got awesome doctors working on this with me. Second, we have a good plan of action (and no holidays or weekends to get in the way). Third, my husband and I bought a car today and actually have reliable transportation again. HALLELUJAH.

Many, many, many thanks to my wonderful mom and my super amazing mother-in-law! My mom spent several hours with me at the hospital last week, even though she'd recently had knee surgery. And my mother-in-law has been with us for nearly a week now, helping with our two-year-old and letting us use her van to get around. I LOVE these women. :-)

So, even though this has been the experience from Hell (pardon the language, but there's no nice way of putting what I've been through these past weeks), things are going to be okay, and we've been blessed throughout it. I know we may not be through everything yet, and there will probably be a few more hurdles to jump, but I will overcome this! And hopefully not get it again before the baby is born... though my doctors say the chances are very, very high that will happen. :-(

As of today, I'm officially in the third trimester. Yay. :-)
(End of Facebook post)

The infection filled again, and again got incredibly painful. I ended up sterilizing a needle and worrying at the old needle hole, encouraging it to open and drain again. It did, and I stood in the shower, nearly passing out from the pain and dizziness, letting it drain with the water. Most difficult shower I've ever taken, hands down (including the first showers after an emergency c-section and major reconstructive knee surgery on both knees).

The next Facebook post was written after a very long day and while I was on the way to the hospital for emergency surgery.

Facebook Post, Thursday, July 30 at 4:12pm
(Three days later)
More updates... Had my next appointment today. No changes from the last two appointments. I'm going in for surgery in a little less than an hour and will be staying at the hospital possibly for 24 hours. Keep me in your prayers and wish me luck! And thanks sooo much for your prayers thus far! I've really felt them.

And now I'm hoping there's an end in sight to this experience.
(End of Facebook post)

Facebook Post, Friday, July 31 at 9:38pm
(Following day)
Update on my situation: The specialist who operated on me last night gave me the choice of having the procedure done in her office with local numbing or to do it under anesthesia at the hospital. Because of how things had gone last time I'd been "numbed" and drained, I chose surgery at the hospital. (Yeah... a two-inch incision when a simple needle nearly killed me? Not a hard decision to make, especially when local numbing doesn't work against infected tissue.)

After surgery, my doctor said it was a good thing we'd done it at the hospital, since there had been "complications," and I would have ended up there anyway.

Apparently, the infection was really, really deep, and she had to dig very far to remove it all. I bled a TON (was still bleeding when I woke up - they had to keep stuffing gauze under the ace bandage). Doc said there was no way they could have numbed me enough, and the pain alone would have killed me.

Also, if we'd done the procedure in her office, I would have required blood transfusions and an ambulance ride to the nearest ER (which isn't covered by our insurance). Much more traumatizing, horrible, and expensive than a scheduled surgery. (So grateful I followed my gut, even if half of my brain said I was wimping out!)

Waking up was a joy. Because I'm pregnant, they operated without pain killers. They were in a big hurry to get the infection out and didn't want to hurt the baby (and I appreciate that). But I was at about a fifty billion out of ten on the pain scale. It took an hour and a half to get it to "manageable" levels, with medications safe for baby and me.

Had the wounds redressed today at my doctor's office, where they pulled ten inches of iodine-soaked gauze tape out of the incision. (Ouch.) Then yes, stuffed that much more back in. Good times.

I'm home and will be having a nurse come in once a day for the next while to change my dressing until I can tolerate the pain enough to do it on my own. It still hurts a great deal, but it's a different kind of pain from the infection-induced type of before. This, I can handle, because it finally means recovery.

It'll take 3-4 weeks before the incision heals and I don't have to put gauze in it anymore. During that time, I'm supposed to take it easy (no heavy lifting, no exercise, etc.). I've already missed four weeks of church, due to this bout of mastitis. Never thought I'd miss for any reason other than my recovering knees combined with pregnancy! But with all the rest I'm getting, my knees are actually doing fantastically. It's the little things, people.

Oh, and the second set of cultures came back negative, which means I haven't had bacteria in my system for well over a week. Basically, my body was attacking the pus it was creating to combat non-existent bacteria. Go team.

The baby is a trooper - he's still kicking away inside me, happy as can be. :-) I had a non-stress test completed today, and he's perfectly fine. So happy about that!

And now I can say that I've experienced four straight weeks of mastitis while pregnant, which has resulted in three hospital stays, seven doctor appointments (and counting), one urgent care visit, several painful infection drainings, surgery, and what's looking to be a HUGE medical bill. :-)

If anyone is searching for good professional care for this sort of thing in Utah, email me and I'll give you referrals! I can't even begin to say how grateful I am that I've had access to such fantastic care.

And again, thanks to all of you for your prayers and kind words during this time. It has meant so much to me.
(End of Facebook post)

The next day, I posted on Facebook that the nurse was on her way and I didn't know what to expect. I asked a few questions, basically worried about how it would go. Welllll.... yeah. It didn't go great, as you'll read below:

Facebook Post, Saturday, August 1, 2015 at 10:59pm
(Following day)
I've had an incredibly long, grueling, horrible, upsetting day, and I'm so exhausted and really need to get to bed. But I know family and friends need to know that I'm okay, and I'm too tired to text the details. So, here's my update:

I can now say that I've ridden in an ambulance. That definitely wasn't on my to-do list for today, not to mention EVER.

The nurse came to change my gauze and repack the wound. As soon as she started pulling the top layers of gauze off, I began gushing blood. In only a couple of minutes, I soaked three bath towels. She called 911. The paramedics, who work just around the corner (so, so many prayers of thanks being given for that!), showed up right away. By this point, I was incredibly lightheaded, dizzy, and nauseated. I can't believe how quickly I went from feeling fine to almost passing out over and over again. They got me set up on oxygen and an IV, then took me to the hospital with my husband following behind.

I almost started bawling several times on the way there, praying so hard that things would be okay. I don't cry easily, even when pregnant. But I've really passed my threshold for tolerance. I just can't handle anymore.

Here's what had happened: a little artery, unknowingly exposed, had really just had it, and when the gauze barely bumped it, started spurting. The doctor put in eight stitches (without me being numbed, mind you - he was in too much a hurry to get the bleeding stopped) and my surgeon from Thursday came and added her own stitches.

It stopped bleeding right before my surgeon got there, thank goodness.

In all, I lost two liters of blood. I'm home now and yet again, really wishing this trial were over. The blessing I got at the hospital said it was. I'm holding to that!

It'll take a few days to recover from the loss of blood. They gave me 3 liters of saline, and if the bleeding hadn't stopped when it did, they would have given me blood transfusions.

I feel so bad for the nurse. She's coming again tomorrow, and when she called the hospital to check up on me, she told the ER nurse that she's completely paranoid it's going to happen again. I don't blame her!

So, to recap. Now I can say that I've experienced four straight weeks of mastitis while pregnant, which has resulted in FOUR hospital stays, seven doctor appointments (and counting), one urgent care visit, several painful infection drainings, emergency surgery, an ambulance ride, two visits to the ER, and what's looking to be an even BIGGER medical bill. I'm really trying not to think about how on earth we're going to get caught up, financially!

If you've ever felt like gifting any of my eBooks to someone else or buying one or two for yourself, now would be the best time ever: http://amzn.to/1fV3gZm

Please continue keeping us in your prayers. :-(
(End of Facebook post)

Facebook Post, Sunday, Aug 2
(Next day)
I'm happy to announce that I just had my dressing changed and it went perfectly fine. I only bled a little. So much better compared to the 2 liters lost yesterday! My nurse, husband, and I were all very relieved. (Exceptionally relieved.)

I'm super lethargic and sluggish, and haven't been able to do much. Been lying down a lot, trying to catch up, physically. The baby is doing well - he's such a trooper. He's happily kicking away, thank goodness.

Again, thanks so much for your prayers!
(End of Facebook post)

Facebook Post, Tuesday, August 4
(Two days later)
Just got back from a follow-up appointment with my specialist. She's very pleased with how well things are healing. She said we'll only need to have the wound packed for another two or so weeks, instead of the four she'd originally thought! :-) She also said that as the infection clears up, the pain that occurs when we pack the incision will also go away. Not only that, but she doesn't think I'll get mastitis again before the baby comes. Oh, heavens. Hallelujah. I love hearing good news.

Due to what happened on Saturday, she opted to leave the stitches from surgery in for another week.

In the meantime, I'm still very dizzy and weak from blood loss and feel like I've got a really bad bout of the flu, but I'm in good spirits. So grateful for talented and inspired doctors and friends and family, many of whom included us in their fasts on Sunday. Much thanks for that!
(End of Facebook post)

Facebook Post, Thursday, August 6
(Two days later)
Yesterday (Wednesday) was really, really difficult. I was severely nauseated nearly the whole day and very dizzy/lightheaded. Sigh. Things are just going to take a while to resolve themselves. I wish I could say, "Hey! I'm all better!" but it takes time to recover... especially since I'm pregnant and not getting much sleep while all of this is happening.

On the bright side, my mom came and hung out with me all day and my friend Leah visited, as did my sister-in-law. Yay for not being bored! :-) :-) :-) And thanks so much for coming, ladies. :-)
(End of Facebook post)

Facebook Post, Friday, August 7
(Next day)
Well, the nurse never showed up yesterday and didn't return my calls... (I'm hoping she didn't have her own emergency) so my exceptionally amazing and brave husband got to unpack and repack the incision with gauze. I'm sooooooo grateful I'm married to a guy who isn't squeamish and handles blood regularly! He did a fantastic job. :-) :-) I love him. :-)

I still go back and forth between groggy, dizzy, nauseated, and lightheaded. I'm sure if I weren't pregnant, my recovery from blood loss would go faster. Yesterday was a really good day, but last night, I had an "episode" of nausea and dizziness. Maybe because we did "too much." (Went outside for the first time in weeks for something other than hospital visits and doctor appointments. We walked to the mailbox, which is about 1,000 feet away. :-) )

I am, however, off of all medications now, minus the prenatal vitamin. After a month of antibiotics and a week of narcotics, THAT'S something to celebrate! Yayness. :-) :-)

I'm also getting back in the saddle again where writing is concerned. Reclaim, the last book in my Katon University series, is now up for pre-order. I'm super excited about this because now, when I have my huge promotion right before the baby comes, I won't have to worry about anything - the entire shindig will be in place and I'll be able to sit back and relax. (Ha ha. With a new baby. Relax. That's funny. :-) Hey - it's a different kind of stress from book stress. :-) )
(End of Facebook post)

That was my last update on Facebook, put up yesterday. I'm really hoping not to add to it with more bad news! I really believe and feel that things are getting better now.

I've discovered that Tylenol works for infection-related pain, but not for the pain related to the incision. The incision, by the way, is about an inch long, half an inch wide, and an inch deep, with stitches on either side (one set from the surgery itself and the other set from the artery that bled). It's super gruesome looking, but I'm grateful to have it because it represents healing and freedom from pain. Of course, it in and of itself is painful... but the pain is much less than what the infection pain brought. (This is stabbing pain and it happens at random times throughout the day, making my muscles in my arm and chest clench. Good times.)

Please, if you have any questions and especially if you are suffering through something similar, feel free to email me or comment below. My breast specialist says that mastitis while pregnant is a fluke - it happens so rarely that half of the medical field has never heard of it. I found that to be true with the doctors and nurses I've seen and worked with the past month.

Also, the artery-spurting thing is incredibly rare. My breast specialist says in twenty years of doing this, she'd only ever had two cases of this happen - me and one other woman. It just doesn't happen often. Thank goodness! As I said to fellow writers, I would never, ever wish what has happened to me on my meanest reviewer. :-)

But I am grateful that I've been able to help other people - especially to educate women (not make them paranoid, of course), so that they know what to do if this ever happens to them.

One last thanks to friends and family for their prayers and kind thoughts as I've struggled through this ordeal! Looking back, I really can't believe I survived half the things I did. The pain was so intense and horrible! But I'm sure it's made me a stronger person. I hope so, anyway. :-)

UPDATES:
Facebook Post, Tuesday, August 11
Saw my specialist today. She removed the stitches (except one that was too deep). That was the first time it's ever hurt me to have stitches taken out! She had to cut some skin to get to the ones that were put in when I bled so much.

She gave me a bit of disheartening news. :-( Because of how deep the infection went and where the bulk of it was (right where most of the ducts are located), I may not be able to nurse on that side ever again. She worries that the ducts were too damaged from everything that has happened. :-(

We're both praying that the next two and a half months will be long enough for things to heal up so I can nurse on both sides. I'm strongly opposed to using commercial formula even just to supplement one-sided nursing (some of you will understand immediately why, and others will think I'm silly - oh, well :-) ), and I'll use that as an absolute last resort. I know there are TONS of options out there for women in my situation. Thank goodness for that. But I'm still praying that everything will heal! (Of course. :-) )

Also, I had my three-hour glucose test today to see if I have gestational diabetes. My first glucose test came back high. Wouldn't it just be the icing on the cake of this wonderful and exciting pregnancy to get that? Ha. :-)

I have more and more energy each day. Most of the time, I only get sore or dizzy if I'm moving too much, bending over, or taking car rides. :-)

My doctor put through an order for another week of at-home nurse help, as there's still about three quarters of an inch to pack with gauze. I really like the nurse who has been coming lately. She's a wealth of experience and compassion, and I'm grateful I've been able to get to know her!

Facebook Post, Tuesday, August 18
Just got back from my most recent checkup with the specialist who did my surgery. Now that enough time has passed and my body has had a chance to heal, the scare of another artery opening up is pretty much gone and she said I no longer require the help of a nurse. I'm sooo very excited about this! It was really hard not knowing what time the nurses were coming. Some days, they weren't here until 9:00pm and then the next day, they'd come at 9:00am. Even though I'm not exactly going anywhere these days, it was still a bit frustrating.

So, instead of having a nurse pack the wound, my doctor said my husband is fine to do it until the incision heals up. (She was surprised he was okay with taking over. So grateful for my awesome hubby. :-)) She said it will probably be another four or five days before the incision heals enough for us to let it close. This means there's a chance I'll be at church this Sunday!!!!!! Fingers crossed it works out!!! :-) :-)

The incision has been hurting almost constantly the last couple of days, even when I'm not moving. Not sure why, but my doctor said the infection isn't coming back, so at least I don't need to worry about that. Car rides, walking, and having my heart rate elevated still cause a lot of pain, as does using that arm for lifting or reaching. My mom has been coming to help every day while my husband has been at work, and that's been a HUGE lifesaver. She's super awesome. :-)

The incision itself is healing very well. There's only about a half inch hole left that is a little under a half inch deep. It only requires about an inch of gauze, where in the beginning, the hole was big enough to need up to ten inches.
I'm guessing that once the incision is fully closed over and more healed, the pain will go away. Probably in another week or two. There are still hard lumps where the infection first started, but my doctor said it just takes time for the body to clear those things up. They don't hurt anymore, and that's an awesome blessing.

Anyway. :-) I'm pretty happy with today's visit. :-) And I'm excited because the third book in the Katon University series comes out this week and the fourth (and last) book is up for pre-order. And I've also started working on my next series. :-) Having my brains come back has been a huge blessing, especially now that I'm in the "painful" part of pregnancy, where moving isn't fun. :-) Less than ten weeks to go!
(End of Post)

Facebook Post, Friday, August 21
No more packing the incision! My husband was only able to get a tiny bit of gauze into it last night. :-) :-) I'll still have to cover it with gauze and an ace bandage for a few more days - until it closes up and heals over completely - but I'm so super happy about this. My life is going to get back to normal! (For a handful of weeks, anyway. :-) And then the baby comes and a new normal will have to be established. :-))
(End of Post)

Facebook Post, Sunday, August 23
Well, yeah. Trying not to freak out (and yes, this is an update on the mastitis situation). Pus came out of the incision on Friday for the first time (only blood has come out since the surgery) and there's a new red spot over the area where the infection first started. I don't know if this means the infection is coming back, but I'm worried it is and really praying it isn't.

Going to keep an eye on things and see what happens. There isn't any associated pain, but that area hasn't had pain for over a month, even while it was infected. I'm hoping my nerves weren't permanently damaged. :-(

My husband is wondering if this means more of the old infection is trying to come to the surface and break through. The red spot is about an inch and a half away from the incision, so if it tries to go that way, it's got a long way to travel. The incision is nearly closed over now.

So ready for medical drama to be over. (Like I wasn't two months ago...)
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Facebook Post, Monday, August 24
Update: Lumps started hurting yesterday and I had a bunch of pus leak during the night and again off and on today. The redness has spread - not by a lot, thank goodness, but it's still concerning. I've got an appointment with my specialist tomorrow. She's going to try to reopen the incision. If she can't, and we suspect it won't work (due to the fact that the incision has been closed since Wednesday), it's surgery for me again this week.
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Facebook Post, Saturday, August 29
Update: There isn't a whole lot to update on. My appointment on Tuesday went well. Doc decided (with my consent, of course) to monitor my condition during the rest of the week and see where I'm at for my next appointment (set for Tuesday). So, every day, I've been calling in to let them know how things are looking. I haven't posted about it because the changes have been minuscule. The red spot got a little worse, but is faded today while the lumps are harder and hurt more. On the other hand, pus isn't leaking any longer and the incision looks good still. (Yay for that. :-) ) So, good/bad ratios seem to be pretty even.

What frustrates me is that it's so slow moving and the fact that I don't know which way it's going--getting better or getting worse. I'm tired of drama, so am not in any hurry to press my doctor for answers, especially when I'm not dying and she'll probably have me wait until Tuesday, anyway. Which is what I would do if I were in her shoes. :-)

Curse mastitis while pregnant! Things would be so less complicated if I weren't in this situation. :-)

In the meantime, I'm back to nearly full-functioning. I still have pain in car rides and am having to be careful with the clothes I wear (anything tight or layered makes things worse), but I'm writing books again and playing with my two-year-old and that's much better than how I was a couple of weeks ago.

Thanks again for your prayers. I really do believe that things would have gone so, so much worse if it weren't for the people who have been praying for me over the past two months.
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Facebook Post, Tuesday, September 1
Just finished with my next specialist appointment. She has no idea what's going on with me - she said it's baffling and doesn't follow what typically happens in cases like mine. (Hey - since when have I followed typical? ;-) )

She said that she's not entirely sure it's mastitis anymore - the lumps are too hard, and it's not moving as fast as mastitis usually goes, as it's only gotten a little worse in the week since I saw her. She said it could be a slow-moving infection, which isn't life-threatening (thank goodness), or it could be fat necrosis.

If it's fat necrosis, it will need time to work its way out of my system. If it's a slow-moving infection, it will need time before we know what to do. Either way, it *is* progressing (the lumps are harder and more painful, the red has come back and covers a bigger area) and should reach a pinnacle soon, then calm down. (Or continue to get worse, which would lead to surgery again, if it's an infection.)

The more I read up on fat necrosis, the more I'm inclined to believe that's what's going on. Fat necrosis sometimes occurs after severe damage or injury to the breast tissue. It causes hard lumps that are red and sometimes painful. And it takes time for it to clear itself up - for the inflammation to leave.

Anyway. We left things open ended. I'll be updating her regularly and she'll be checking up on me a few times a week. If it continues to get worse, and ends up being fat necrosis, I'll have an ultrasound plus needle aspiration (which is sometimes required, if the necrosis doesn't go away on its own). If it gets worse and ends up being an infection, then I'll have surgery.

And if it gets better, then I'll be done with doctors FOREVER.

Until the baby is born, anyway.

Oh, and all those appointments leading up to his birth.

And all the appointments after. :-)
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Facebook Post, Friday, September 18, 2015
An update on my situation, as I haven't posted one in a while: I'm still seeing my specialist on a regular basis. We've ruled out fat necrosis. She's positive I still have an infection, it's just a very slow-moving one (and therefore, non life-threatening, thank goodness). We decided to try another batch of antibiotics (augmentin, and just for three days this time) to see if they would speed up the process. They didn't. However, the infection below the red spot, which is now purple, looks like it's going to break through the skin fairly soon.

She told me to avoid puncturing it or trying to drain it myself... because she knows I'm likely to do that, given the fact that I've done it before. :-)

So, as a recap for those who weren't around when I was updating regularly: I'm pregnant and I've got mastitis (milk duct infection). Because I'm pregnant, regular methods (and even the non-regular ones) don't work to clear up the infection and actually greatly increase the problems associated with mastitis.

If you'd like to read the entire story, including what has been done and all the exciting drama that we've gone through, go here: http://andreapearsonbooks.blogspot.com/…/mastitis-during-pr…

In other news, the baby is coming in about a month. I'm at peace with the situation. And fairly emotionless about the fact that I've had mastitis for three months now. :-) I'm no longer in agony, so that's a huge blessing. :-) The pain is low-grade and only acute when I accidentally bump myself or wear the wrong bra. (GASP. I just said "bra" on Facebook!!!! :-) )

Anyway. There's your update.
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Facebook Post, Tuesday, September 22, 2015
Another update on my situation: the infection made its way to the surface, and my doctor had me sterilize a needle and go to work on it. Lots of pus came out, the area is super tender now, and we're hoping it's on the way (finally) to clearing up.

In other news, my husband made some really awesome cream cheese brownies. We're feasting on those right now with vanilla ice cream. Super yummy. :-)

Facebook Post, Tuesday, October 6, 2015
A couple things. I only have one more doctor appointment before the baby comes. Yay! My doctor today told me that I am the most uncomplicated complicated pregnancy they've ever had. Apparently, the doctors talk about my case regularly. So glad I'm not in a constant state of emergency anymore. I've had several pockets of infection come to the surface now, and things seem to be moving along nicely.

Next thing - something that makes us laugh. Our two-year-old, when she's upset with us, has taken to exclaiming, "You need to go back to school!"

Funny, because it's a legitimate argument. Ha ha. :-) We don't know where she picked it up. :-)
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Facebook Post, Thursday, October 29, 2015
I'm having to pump on the side that had mastitis during my pregnancy - milk is collecting into a lump and not draining when my baby nurses. The lump has gotten big enough where he can't latch on anymore, so I may end up pumping for the rest of the time and nursing on the other side. I do have an appointment with my specialist on Tuesday, just to check out the lump and make sure it's not getting infected. In the meantime, she's wanting to see if pumping will empty it.

But I'm really glad milk actually comes out. That's huge, after all the damage! My doctor was really happy to hear it too.
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Facebook Post on Monday, October 12, 2015
An update on the mastitis: It's been hurting lately - the dull, stabbing pain. I'm really hoping nothing more comes to the surface, so that when the baby comes in a week, I won't have open wounds and will be able to pump the excess infection away. It's only dead stuff that's still there, but it's really irritating my body and I know my body is still trying to fight it.
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Facebook Post, Thursday, November 5, 2015
I haven't updated on the mastitis situation for a while... not because it's ended, but because we've been under incredible amounts of stress where feeding our baby has been concerned. We've encountered nearly every problem under the sun, many of them related to the mastitis I had while pregnant, but a lot of them also due to problems the baby himself has had. My emotions are pretty messed up at this point and I haven't been able to put things into writing until now.

Long story short: I don't produce enough milk on the one side to keep my baby fed. :-( After two weeks of an incredibly fussy and upset baby, we finally realized that he was starving. Wish babies could talk. :-( So heartbreaking. :-( During the past two and a half weeks, and in an attempt to resolve the issues we were coming across, I met with three lactation consultants, a midwife, worked with several la leche league leaders, had two appointments with our pediatrician, and even worked with a doula. Nothing helped. My milk supply didn't step up, even while I was both pumping AND nursing around the clock for five days straight, while taking a TON of herbs. Not only that, but the baby's own issues didn't end.

We went to a hospital in SLC a couple days ago for one of the nursing consultations and had him weighed before and after nursing to see what was going on. After all the work I was putting in to increase my milk supply, none of it had helped. My right side—the side that was infected—only produces a teaspoon of milk, and the left side only about an ounce. No change in over a week. :-( My baby needs three ounces each feeding. No wonder he was starving. :-(

This has been absolutely devastating to me, and talking to friends who've been there, I know I'm not alone in the negative emotions that come from wanting, but being unable, to give my baby the best. I'm still pumping every two hours and bottle feeding him that, along with goats' milk. (Through other awful experiences, we found that formula wreaks havoc on his little system.) I struggled with producing enough milk for my little girl while completely healthy, so this isn't totally surprising to me. But it is severely disappointing.

(Oh, and yes, I'm still having old infection come to the surface on the side that had mastitis.)

Some of you will understand why I'm so disappointed, and others will think I'm just being silly. :-) Regardless, I hope you all know how much we appreciate your help, support, and prayers during the past several months. I really hoped there would be a happy ending to that horrible mastitis experience. Perhaps the happy ending is me being able to help other women who are going through what I've been through.

And I know that any heartache I experience now will help me be more compassionate when my children experience heartache later. I'm grateful for that—my mom has been such a big help and a great source of strength while I've dealt with all of this.
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Facebook Post, Monday, November 9, 2015
Guess who has mastitis again?

I swear, if this ends up being "my thing" until the end of my life, I'm going to throw one heck of a fit, and *SOMEONE* is going to hear about it.

(Andrea shakes her fist at the heavens... while warning friends and family to stay away in case lightning strikes.)

Sigh. They've got me on antibiotics again, a kind I couldn't take while pregnant. The mastitis is on the other side of the surgery incision, and regardless of what I do, I haven't been able to work it out. I don't think those ducts lead anywhere, and my specialist agrees. So, I'm trying to dry up one side while still pumping/nursing on the other. Anyone have success at doing this and want to offer advice?
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Facebook Post, Monday, November 16, 2015
Update for all ya'lls.

And the mastitis rages on... I'm in the process of drying things up. Since I wasn't producing very much milk in the first place, it's not been very painful. The reason I didn't dry up earlier is because the lumps of infection were actually going away while I was pumping/nursing. Until about a week ago, and then they started getting bigger again, and fast.

Over the weekend, I found a fourth red and angry lump in a new place - closer to my arm. I also discovered that my c-section incision was infected. This pretty much freaked us out - the mastitis spreading and an infection in a different place? No bueno. I got on antibiotics (Dicloxacillin) and have been watching things. As has always been the case, the mastitis has gotten worse and the antibiotics haven't done a thing. (Except for where the c-section incision is concerned - it's actually healing. Yay!) I have an appointment in the morning with my breast specialist and really have no idea what to expect, other than her saying "let's watch this and see what happens." Again, my case is extremely weird, odd, and different, and NO ONE has ever seen something like it.

How to fix things when no one knows what's wrong?

My baby is doing well, other than awful congestion from a nasty cold. We're having to hold him while he sleeps at night, just to help him breathe. The poor little guy.

It's weird how everything has worked out. My baby had severe latching problems (partly due to a high palate) and couldn't nurse. After only three and a half weeks, we realized I needed to stop producing milk. At that point, he'd been on a bottle for a little over a week, so there weren't any huge adjustments to be made. So, him unable to nurse and me unable to produce milk. It's like the Lord knew ahead of time when matching him with this pregnancy. ;-) :-)

Oh! My mom wonders if I may have celiac disease, which is why I've been getting infected so easily. (Unhealthy intestines leading to body not taking in the right amount of nutrients leading to body not being healthy leading to getting infections easily.) I had my blood drawn today to test for it and we will know in a couple of days.

I can't help but be nervous/worried for future pregnancies. How will I know if things have healed up? If it's okay to try to nurse again? Once the milk really started coming in this time around, I began having issues. I want to know if I've healed... but I don't want to repeat the problems I've had. And I'm really nervous to get mastitis while I'm pregnant again. We already know I've got hormone problems (which is why I have to have c-sections - there are a TON of issues going on), and once I started producing milk with my little girl, it never fully stopped. Two years after she was weaned, when I got pregnant with my baby, I was still producing about a teaspoon a day, which probably led to my getting mastitis.

So, yeah. Afraid. Nervous. Not sure what the future holds. This is life, though. And part of learning to trust and have faith. We know that we're supposed to have at least one more baby - we both feel it very strongly. After we've done our part - getting me healed up and physically ready - we'll need to put our trust in the Lord that things will work out for us to finish our family.

This has been a really hard year for me physically. Those awful, horrible knee surgeries (four months of no walking and intense pain), followed by six months of really severe morning sickness, followed by four months of mastitis...

Life is entertaining, huh?

In the meantime, I'm working on a set of non-fiction books for authors - teaching how to get newsletter subscribers and reviews, along with finding beta readers, editors, and cover designers. It's been a nice outlet. :-)
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Facebook Post, Tuesday, November 17, 2015
My appointment with the specialist today went okay. She wants to see what happens with the mastitis spots once my milk is fully dried up. I have to check in with her on Thursday with any and all updates. In the meantime, she's having me massage the lumps. Tried that tonight. Exceptionally painful, and only resulted in one of them getting bigger and another one bruising. The biggest of the lumps is rock hard and about the size of a golf ball. They're all still growing, since I'm still producing milk.

I'm going to keep taking the antibiotics, to prevent the spread of infection.

My specialist also checked the c-section incision and said it's doing really well now (yay for good news!) and to continue having my husband clean it with saline and apply neosporin after letting it air dry for an hour or so.

An interesting thing (and I hope this isn't TMI): when my letdown happens, the milk in the infected side doesn't stay inside me. It immediately starts leaking at a fast rate, while the other side only leaks a little. It's like the bad side doesn't know how to hold milk anymore. With everything it's been through, I'm not really surprised, merely fascinated.

Anyway. So, wait for milk to dry up and see if the lumps take care of themselves. The body is amazing - I'm really hoping that everything will resolve itself soon. As before the baby was born, the infections I have now are slow moving. Thank goodness for that. Tender mercies, people, tender mercies.
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Facebook Post, Sunday, November 22, 2015
Update on my situation...

The biggest area of infection has doubled in size (and pain). I'm at the point where I can't use my arm much anymore again, and bending over or shifting my weight in any way is agonizing. It's been this way for a couple of days now. I'm back on narcotics again. My milk is almost dried up now, thank goodness.

Yesterday afternoon, the pain from the biggest lump got so awful that I ended up sterilizing a needle and going at it myself. Took four or five stabs (OUCH) to create a channel for the pus to come out. It's been draining steadily ever since. Which is good - that stuff has to go somewhere, and since we already know those ducts are too damaged to lead things out the natural way, it was going to come to the surface on its own anyway.

Unlike last time when I took on draining the infection myself, there isn't much relief in pain. Most likely because of the vast quantity of infection that still needs to come out. There are tons of lumps that need to work themselves out.

A couple hours ago, I opened up another spot that was ready to drain. That time, it didn't hurt, thank goodness.

My body is forever changed from this. It's depressing. In the three locations where I've had pus rise to the surface and exit, there are now brown pits in the tissue. I've now got five places where infection is draining or has drained. I hope I'll eventually heal and those dark spots and pits will go away.

Ironically, the two-inch long incision from surgery is completely healthy looking and nearly invisible. The man-made exit for infection looks better than the body-made ones. Sigh.

When I sent my update to my doctor on Thursday and she prescribed more antibiotics and again said, "let's wait and see what happens," I got SUPER frustrated and upset. I started calling around, trying to find someone who could help in a way that didn't involve MORE ANTIBIOTICS. (Read the Wikipedia article on mastitis. Antibiotics only clear up mastitis in 15% of cases. Nursing clears it up the rest of the time. So wish none of this had happened so I could actually nurse. :-( )

I called infectious disease specialists and general practitioners and of course my obgyn. My obgyn and nurses were very helpful (all six of the doctors and all of the nurses know me by name now. Yeah. That's the sort of fame I didn't ever ask for). They gave me numbers to call and even called several places for me.

The answers we got from EVERYONE, including the office that has the best infectious diseases specialists in the state, was this: "Talk to your obgyn. We don't work with mastitis. We wouldn't even know where to begin."

I told them all that my case is different, that I HAVE been working with my obgyn, that I've had mastitis for four months. Their responses were still the same, that they wouldn't know where to start.

And I'd still need to go to my breast specialist for any and all surgeries, since she's the one everyone refers to when it comes to breast problems. (And she is FANTASTIC with surgeries and reconstruction, etc.)

Sigh.

I got a priesthood blessing Friday night. I was promised that my body would work the infection out on its own. I felt a lot of peace when I heard those words, and the impression I got was that I'm being too impatient.

Yeah? Me, impatient? Maybe the HORRIBLE, forever-reoccurring pain has something to do with it. :-)

Anyway. I'm feeling more positive this morning. Wishing I could have gone to church, but even if I were healed, I still have a newborn that shouldn't be around lots of people (especially with how sick he's been)... so I'd still be at home. :-)

I'm praying for patience to deal with everything until it's all gone. And I'm praying for healing... not just for the infection to leave... but for the underlying issues to go away. To get back to normal as much as possible. To have a LIFE again, for Pete's sake.
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Facebook Post, Friday, November 27, 2015
A quick update (like I'm capable of those... ha ha. :-)):

Things are getting better. YAY!!! After trying EVERYTHING (yet again), the only thing that has worked has been stabbing holes into the infections and letting them drain. I'm having to open them up again every other day, just to make sure things continue moving along. There are several lumps, many of which are really deep, and will take a long time (probably months) to work their way to the surface.

But at least I'm healing!!! YAY!!!! :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-)

It still hurts like the dickens, but only when something rubs the infected areas wrong or when I'm too active or bump myself.

The next year or two will show if we want to have more kids. Given the fact that milk production begins with conception, and there's no way to know if I've healed enough ahead of time... I'm weighing pros and cons and thinking things over. I'm definitely NOT making any decisions at this time. But I do need to be smart about my health. Five months of mastitis that could have gone systemic at any point isn't something to mess around with. And I'm nearly positive it'll happen again. If the mastitis hadn't flared up so badly after the baby was born, I wouldn't be so sure. But four months after the surgery I still wasn't healed enough for 90% of the milk to leave my body. No bueno.

And guys, the pain, stress, and frequent trips to the ER and doctors office definitely weren't fun. I've been struggling with this since the end of June. JUNE.

So, I'll be mulling this over for the next couple of years. I have time to decide. Just don't EVER ask me when we're having more kids. You WILL get slapped. :-) Ha ha. :-)

Anyway - thanks so very, very much for your prayers, for putting my name on the prayer roll, for your support and advice and help. I love and appreciate you all.

(We all knew I wasn't capable of a quick update... :-) Hey, I'm a writer. :-))
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Facebook Post, January 3, 2016
Things are still pretty awful, and it feels like we're being hit on all ends. Lots of refining going on here.

The biggest part of the infection is still producing pus and is still draining every day. When the abscesses come closer to the surface, they stretch the skin really thin. This latest abscess was an inch and a half big by the time it got to the surface. Consequently, there's a section of skin that big around that is purple and paper thin. The needle hole I made a month ago that the pus has drained from is now half an inch big because the skin is pulling back and separating from the tissue. As you can imagine, the now-exposed tissue is very raw and very sensitive. It's been painful enough to make me cry every time I shift anything around the wound when I'm not wearing a bandaid. :-(This has been going on for a month now.

I'm finding myself in a catch-22. I'm still producing enough milk where I have to wear nursing pads. But having anything rub or touch that hole is excruciating. So, I've been covering it with a bandaid. But covering it up slows the flow of pus, which means I'm introducing and holding more bacteria around the wound. Not to mention the fact that skin hates being ripped off by bandaids on a daily basis...

The "ideal" situation (in quotes because honestly, what's ideal about any of this?) is to let it air for a while, but with me still producing milk and needing to take care of two little kids, that's not feasible most of the time.

I'm so discouraged about the situation. People have commented on my positivity through all of this... it's not in my nature to be negative. But I'm really struggling. I'm now going on seven months with no end in sight.

I had an MRI last Monday. Got the results back on Friday. Normal. Which is good - there's no cancer or other weird thing - but what is going on, and why am I not healing?

My husband and I have a theory about that, which is this: I won't heal until I stop producing milk. Makes sense, right? The only problem is I may never stop. I was still producing a few drops a day when I got pregnant with my baby, two years after my girl was weaned. This is why I got mastitis while pregnant in the first place. I've tried every single natural remedy for clearing infection and stopping milk production that I've heard about, even the really weird stuff, but nothing has helped. And the more I read, the more I learn that it's really very common for women to leak for years afterward. I just get to be luckier than most to have severe complications from it. :-)

There are shots doctors once gave to stop milk production, but they don't do them anymore because the side effects include stroke and heart attack. I'd rather face the uncertainty of infection than the possibility of death.

I feel like I'm coming to understand the woman from the Bible who had an issue of blood. I'm not sure if her situation was painful, but if it was, my heart aches for her. If only the Savior could walk by me so I could touch the hem of His clothes...

And even as I wish for this, I realize I don't need Him here to be healed. I need the faith to be made whole again.

But even having faith isn't good enough if it isn't the Lord's will just yet.

My mastitis isn't the only thing we're dealing with. Our baby is still having congestion and breathing problems at night, bad enough for him to stop breathing and to have to really fight to get past the congestion to breathe again. We're still having to hold him upright all night long so he can breathe. He's mostly fine during the day. I recorded him breathing and we're going to send it to his pediatrician tomorrow. We're thinking he has a weak epiglottis and it's allowing milk into his nose while he eats. Hopefully, that'll resolve itself as he gets older. We'll hear from the pediatrician soon.

We're so emotionally and physically exhausted. My husband and I haven't slept in the same room since the baby was born two and a half months ago. We're only getting four to five hours of sleep a night, and in some cases, much less. (Like last night - I only slept from 5 am to 7 am.)

Anyway. I hope my experiences are helping others appreciate the good health they have. Appreciate it, Dang It! :-)

I've had several people wonder at my ability to continue doing book work during all of this. It's my escape. It makes me feel normal. It feels good to get outside of the house, even if only on the Internet. And it feels good to be able to do things for other people (like, the book promotion I'm running) since I can't do a lot of that physically.

Anyway. I hope your year is going well so far. :-)

And it's amazing how getting this stuff off my chest makes me feel. I'm feeling positive again, so thanks for listening. :-)

Facebook Post, January 5, 2016
I just finished with an appointment with my infectious disease specialist. He's sending me back to my breast specialist for surgery. The MRI came back normal for cancer, but it found a very large abscess that will need surgical draining, along with several smaller ones. He's calling the breast specialist to give the order. I'm not sure when surgery will happen, but I'm really hoping it will be the end of all of this.

Facebook Post Friday, January 8, 2016
Update on my situation:
We won't be doing surgery yet after all. My doctor wants to try needle aspiration guided by ultrasound again. At first, I was really, really upset. But as I've been reading and researching, I've found it works just as well as surgery if done properly. And my last one wasn't done properly. So, I'm willing to try it again, with a different doctor performing the procedure.

Unfortunately, needle aspiration is the most painful procedure I've had done ever (and I'm no stranger to weird and painful medical procedures). Last time, they were only trying to empty one abscess. This time, there are multiple, and I'm really, really nervous and scared to do it again. Numbing doesn't work well (or sometimes at all) on infected tissue, so they're giving me a numbing cream to apply an hour beforehand to the healthy skin.

Update on my baby:
He's had a few tests done this week, with normal results for the most part, but his chest xray showed slight abnormalities. Our pediatrician is contacting other specialists and should be getting back to us soon.

For those who are interested, and we invite you to join if you are, we're holding a special fast this coming Sunday, January 10. We need some miracles! We'll be fasting and praying that the procedure on Monday will be successful - that my mastitis will clear up. We're also praying and fasting that our baby's issues will become clear and that we'll know what needs to happen to help him overcome whatever it is that is causing his breathing problems.

Health, being able to move forward, is so very important to us. Our situation has affected every aspect of our lives and we're so very much ready to move beyond these trials!

Please keep us in your prayers! We love and appreciate you all. I'm nearly positive that if it weren't for the prayers offered on our behalf, I wouldn't be here still. There have been far too many close calls over the past few months!

Miracles happen, and I'm ready for some manna of my own.

Facebook Post, January 14, 2016
Update on the baby and me:

The baby's test results are all coming back normal and everything the doctors have seen that looked to be abnormal have turned out to be something he'll grow out of, without any lasting effects. What a relief and an answer to prayers!

Thank you so much for helping us pray and fast on Sunday. We really appreciate it! I really felt those prayers during my procedure on Monday. Which wasn't nearly as bad as the last two times I've had it performed. I only called out in pain once, and the rest of it was totally fine.

The doctor emptied one abscess that was full of trapped milk but hadn't yet become infected. Then he partially drained another one full of pus. And... that's all he did. We were under the impression that he would be draining all of the abscesses, but apparently needle aspiration doesn't work as well on smaller ones. It's too imperfect of a solution to get every last bit. When it does work, it's usually because the patient has one large abscess and isn't riddled with abscesses like I am.

Also, the doctor explained why the last time was so incredibly painful, and why it only hurt once on Monday. When the needle bumps or sucks against the wall of an abscess, it starts trying to pull in tissue, which is not comfortable, to say the least. The last doctor bumped multiple times against the walls of the abscesses and Monday's doctor just once.

The doctor did explain why the cultures have been coming back negative. He said that antibiotics tend to mask or slightly change the type of bacteria the body is fighting.

He also said he would have thought I was exaggerating or outright lying about what I've been through if he hadn't read my chart himself. Yeah, lots of crazy things have happened over the past seven months.

By the way, this doctor comes from a long line of physicians. His dad performed my knee surgeries ten years ago and my dad's knee surgeries something like thirty years before that. They're all kind and very tall men. All of the boys in their families became physicians, and they're all over 6'5". :-)

We learned something else on Monday too... and that is that Valium does absolutely nothing for me. Thank goodness I didn't end up having to rely on it! I don't usually have reactions to medications - don't get highs from narcotics, etc. Maybe this is why I don't get sugar highs? Probably not, but who knows.

So, where to from here? We don't know. It partially depends on my milk supply. I'm drinking an herbal tea three times a day as a last-ditch effort to get things to dry up. It contains parsley, sage, and peppermint. (I've got you singing Simon and Garfunkel now, don't I? :-)) All of these herbs are rumored to stop milk production. I've actually researched pituitary gland removal, but feel like brain surgery is still a bit premature, even if it turns out to be the only way to get over mastitis. (Does that warrant a smiley face? I'm not sure...)

My breast specialist wants to see me again when the cultures come in. Who knows what she'll decide.

The prayers and fasting delivered two much-needed miracles:
First, the baby's test results coming back as things he'll outgrow.

And second, the procedure turning out to be one of the more mild ones I've been through so far.

Thank goodness on both counts! I'm bruised and sore still, but not emotionally scarred. :-)

Oh, and it's looking like the baby's congestion issues might be caused by a swallowing dysfunction. Basically, milk enters his nose while he's eating, and it doesn't clear out, but instead thickens, making it nearly impossible for him to breathe. His doctor wants us to try thickening his milk to see if that helps.

Thank you again so much for your prayers and fasting. I'll continue to update as we have more information. And many, many, many thanks to the primary presidency for bringing dinner to us on Monday night! You are angels!

Oh! And the end of the world is a month from today, according to that one lady on Ghostbusters. Is everyone ready? What do you plan to do during your last month of life? :-) I plan to continue life the way it is now. Despite the obvious frustrations we're dealing with, things are fairly decent. I have two beautiful kids, a wonderful husband, and I love being an author. :-)

Facebook Post, February 14, 2016
Mastitis update:

It's been a while again since I've updated. I think monthly updates are easier than the more frequent ones.

Yes, I still have mastitis. No, it's no longer life-threatening. Yes, it still hurts. And it's kind of heartbreaking, thinking that I'll never be the same. The scars where the infection first started rising to the surface are just as ugly now as they were in the beginning. :-(

There are four, maybe five abscesses still making their way to the surface. They ache constantly. I've had an open wound for two and a half months now of the eight months of mastitis. It's painful and raw. My specialists check in with me periodically, but there isn't anything they can do, since I'm still producing milk. My breast is so damaged that I don't think the milk production will ever stop.

It did slow down considerably, though, when I started drinking that herbal tea three times a day that has sage, parsley, and peppermint in it. But I stopped drinking it when it started making me gain weight. Sage is a natural source of estrogen and estrogen has always made me gain weight.

Weight gain on its own isn't a big deal if it meant my milk production was stopping and my mastitis was leaving. But some of you may remember that I had major reconstructive knee surgery on both knees a year ago. The weight gain was causing severe knee pain and instability, and I can't afford to go through those surgeries again, emotionally or financially, if I tear things up.

So, yay for another catch-22.

If we can somehow stop the milk production without causing severe side effects, then I project the mastitis will work itself out in the next six or seven months. The abscesses so far are taking a couple months each to come to the surface.

I pray so hard that things will clear up, and that I'll continue to bear this burden gracefully. I struggle still to understand why all of this has happened, but I have a profound love and appreciation for the Savior who has been right there with me through all of this, and who truly knows what I'm going through.

We're running a book promotion this week, starting today, to help cover the costs that my mastitis has incurred. Please help me spread the word about this sale. I'm putting something in the first comment of this update that I'd love you forever if you wouldn't mind sharing for me. Feel free to edit it to say what you would personally say.

Thanks so much for your prayers, support, and friendship through everything. I love you all!

Facebook Post, February 15, 2016
Okay, not good news. I've just discovered a new abscess and a new red spot, closer to my armpit. It's tender and angry and making me nervous, since it shows that the infection is still moving toward my major blood lines. I now have six red spots and abscesses! I'm talking to my mother-in-law, who has worked in the medical field, and we're trying to find a specialist who deals with milk production issues and possible pituitary gland problems. I may have to go out of state to get my issue resolved.

Facebook Post, February 23, 2016
I won't be trying any more natural fixes (or random antibiotics). None of them have helped in the slightest, and the last three natural remedies have made things significantly worse. I almost had to go to the ER again Saturday. My new red spot grew from one inch around to five inches. I started getting flu-like symptoms again and was in horrible pain. I stopped the treatment (cabbage leaves and peppermint oil together) and went to bed with pain killers and an antibiotic, and my symptoms had lessened by the next morning. The red spot is a little smaller, though still larger pre-treatment. I'm still in a lot of pain and feel gross, but not as bad and no longer critical. And I'm still producing milk. Sigh.

The next step is an appointment in three weeks with another specialist (an endocrinologist) to find out why my milk production won't stop. We can’t get rid of the mastitis without stopping the milk.

My promotion last week brought in around $2,000, all of which will be going to medical expenses. I can't say thank you enough to you all for helping me spread the word about it! Friends I hadn't spoken to in years stepped forward to share the promotion, and several hundred authors and readers helped out. Thank you so very much!

The Complete Katon University Series box set is still discounted, if you didn't get a chance to help out last week. It's at $5.99 now, instead of $7.99.

Anyway. For those who have wondered: I'm almost completely functional. I've learned to work around the infection, and I've figured out which clothes not to wear so that the pain is minimized. I'm not in complete agony like I was for the first couple of months. This is what we call a tender mercy from the Lord. :-)

Facebook Post, March 3, 2016
Well, I went and saw the endocrinologist (he had a cancellation and fit me in three weeks early), and let me tell you, regardless of the results of the tests, I am NOT going back to him again. It was a horrible experience. He acted like I had no idea what I was talking about - told me it's impossible for women to get mastitis while they're pregnant. I told him to look at my chart. He did, then backpedaled because my chart shows when I had my surgeries and when I was in and out of the ER and getting all of the initial tests done, and it also shows that all of that happened months before my baby was born. He then contradicted me on several other aspects of my case. I couldn't believe it - he's a specialist of ONE area, not MY area, and I've done more research into it than he ever has.

There are a billion other reasons I'll never go back. He was an arrogant know-it-all who humiliated me (wanted to do a physical exam and didn't leave the room so I could disrobe. Instead, he sat there and waited for me to do it while he grumpily/angrily/impatiently WATCHED. Yes, there was a nurse in the room, but that doesn't matter, it was still inappropriate. And I'm not fast on my feet in uncomfortable situations--I don't think of what I should say or do until after it's happened. I should have slapped him multiple times and then insisted he leave) and I'm definitely going to be reporting it to my breast specialist who referred me to him. This was the first time I've been treated extremely poorly (or even badly at all) since all of this started.

Grrr. Glad to get that off my chest.

Ha ha.

Bad pun. If my editor ever sees that... *Andrea ducks her head, looking around for Tristi...

:-)

In other news, I'm living off of four ibuprofen three/four times a day again and am in serious pain. A huge abscess is making its way to the surface and it's been horrible.

We should be getting the results of my endocrine tests back tomorrow.

So, I've now had mastitis for eight full months. I can't even count how many doctors and specialists I've seen for this or how many remedies (natural and man-made) I've tried. I'm seriously just done. (And I'm not taking suggestions for treatment anymore. Sorry, and I really appreciate all the help everyone has given. Gentle hugs work great, though! :-) )

And I'm a tad grouchy tonight, if you can't tell. :-) I really wish I could sit down and play the piano for a few hours in a big, quiet building with the knowledge that I'll be alone the entire time I'm there.

Anyway. That's all for now. Thanks for putting up with me. :-)

Facebook Post, March 4, 2016
Happy fifth anniversary to my husband and me! We're heading out the door for an emergency surgery to drain my abscess. What a lovely thing to do on a wedding anniversary. :-) Here's to a good experience and relief from the pain, though.

Facebook Post, March 4, 2016
Just a quick update before heading to bed.

I've figured out why that one ultrasound and needle aspiration hurt so bad and the one a month ago didn't. Inflamed tissue is much, much more sensitive than regular tissue (such a no-brainer, huh?), and when I first got mastitis, there was a lot of inflammation. Unfortunately, things have been super inflamed lately, and today's procedure was incredibly painful.

Due to lots of our regular babysitters being sick, we had to bring the kids with us, so instead of having my husband by my side on our anniversary while I was getting stabbed multiple times by large needles, he ended up taking them outside to play and the physician's assistant held my hand instead. I screamed a lot. :-( I was drenched in sweat when everything was over.

My husband surprised me by taking the day off, and we feel blessed that he didn't have to work when I ended up having to go in. I'm also feeling so blessed to be working with such amazing medical personnel. My doctor's nurse had the day off, but she still made sure I got in to see my doctor on a day when they don’t normally see patients. My doctor was scheduled to perform surgeries all day, but she had a cancellation and was able to see me. So many blessings.

We did an ultrasound before and after the aspiration. Even though she got a ton, she wasn't able to get everything, and there are six or seven more abscesses left, including a really large one deep inside. My body has walled them off, which means they'll be heading to the surface eventually, but there's still a chance they'll take care of themselves without further medical intervention or tons of pain. Either way, it's most likely going to be over a year before everything is resolved.

The needle aspiration took care of the big abscess that was near the surface, and she was able to push/squeeze a lot out. She's having me watch things over the weekend to make sure I'm not getting worse. My skin and tissue were so upset after the procedure today that I could barely move for several hours. Instead, I got in some good cuddling time with my sweet three-year-old and then watched Just Like Heaven while my wonderful husband cooked dinner.

Anyway. I'm heading to bed now, much later than normal. Good night and thanks for your support, prayers, and friendship. It means a lot to me.

Facebook Post, April 26, 2016
And the cycle continues... I've had increasing mastitis pain over the last few days, and then during the night last night, I had an abscess pretty much explode. Ew. Even though it hurts, I'm grateful I didn't have to resort to the needle like usual. Unfortunately, there's another abscess that's hurting a ton and still probably has a few more days before it's ready to come through.

I've had five ultrasounds and one MRI. Everything has been ruled out, including breast cancer. This really is mastitis. (Someone always asks. :-)) I've also tried every natural and man-made remedy and all of them have either made the situation worse or they've done nothing at all. Please note that this isn't a challenge to find that perfect remedy - I'm not open to more experimentation. If I'm not creating more abscesses, then I'm good - it's just a waiting game from here on out, with the hope that I don't get reinfected.

I'm on pain killers again and back to going bra-less, which means very limited time outside my place. Unfortunately, I'm also having to deal with two stress fractures in my foot... Sigh. Life is never boring, eh?

Anyway. Just thought I'd post an update. If I'm not creating more abscesses, then I only have six more left to have drain. Someday, I'll be known as just Andrea, mom to two cute kids, wife to my awesome husband, and an author. In the meantime, you can call me that crazy lady with the insane health issues.

In funnier news, my three-year-old, pointing at the colorful cover of one of my journals, said, "That's chocolate candy, and that's chocolate candy, and oh! I love that chocolate over there too!"

I blame my mom for her love of chocolate. And my husband. But mostly my mom. :-)

Facebook Post Friday, June 24, 2016
This month marks a year since I got mastitis. Can you believe it's been a year? I can't! But I'm so grateful the time is passing more quickly. I'm still having abscesses come to the surface, but they're smaller and not as painful. I'm also still producing milk, but that's probably going to be my lot in life. :-) It's not much anymore. My days are relatively painless now, and I can't even begin to say how grateful I am for that.

November 21, 2016
I haven't updated this in a while. I was just expressing to my husband that if I'd experienced the pain I have every day now because of this infection BEFORE I had the infection, I would have downed a ton of pain killers and curled up in a ball to sob. Ha ha. That's what perspective gives you. :-)

I haven't had any abscesses come to the surface in a few months now - they're churning, moving slowly, and constantly aching under the skin. It's not an emergency situation anymore, though, and that's such a relief. My life and goals and dreams and projects are marching onward. AND we're finally paying off all of the medical debt this situation has presented us with! Mercies from Heaven, I tell you. :-)

Thanks for coming along for the ride. I hope to someday have good news - that this whole ordeal has finally ended. Until then, I'll be keeping on with my keeping on and hoping you're doing the same. :-)

11 comments:

  1. Wow Andrea! What a crazy and painful journey. I've spent this whole summer dealing with my own health issues. Dx with MS and lost the use of my legs and pelvis (at least for walking) in June. Learning how walk again. Anyway I've had little pain so nothing like your horrendous experience just the difficulty that comes with feeling broken and your body not working. Read a great line from a fictional book about cancer patients. It said pain doesn't change you, it reveals you. So this is me saying thank you for sharing this vulnerable and brave account. It spoke volumes. And so important to help as many women be aware of this. Sending prayers and hope you heal quickly. - Emma Kruger (Jones)

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    1. Emma - my heart goes out to you! My brother was diagnosed with MS during the past few months. It's a complete life changer! He's really needed to make several major adjustments to help him stay on track. His version of MS causes blindness, memory loss, and vertigo. But we're so grateful that they actually have medication that helps somewhat now compared to even just a few years ago!

      My prayers are with you.

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  2. Reading this puts a lot of the trials I'm going through into perspective. I've not been able to put my thoughts into words about what you've been going through, despite having read all your posts. You've always been a huge example of strength to me (that might seem weird for me to say, but it's true). I'm glad you have an awesome husband who is there for you and family nearby that can help. I want to say thank you for helping me with all my questions. I wish you all the best.

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  3. I am so sorry for what you'be been having to go through. I am 25 weeks pregnant and have red swollen areas on my breasts for 2 months now. I suspect it is mastitis and will see a breast specialist in a week for an ultrasound. Thank you so much for sharing your experience!

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  4. I found this site researching mastitis during pregancy for a friend. She's in her 7th month. I pray hers is not as tramatic as yours & your trial ends soon. I know 1st hand how frustrating ongoing health problems can be. My heart also goes out to anyone struggling with MS. My daughter was diagnoised in 2012 (per dr it began 15 years earlier). Since it was misdiagnosed for years it was very advanced & had become primary progressive. God called her home in May 2015 after multiple hospital stays & various very expensive prescriptions & treatments. Even though it took her short term memory, the use of her legs & several body functions, and was severely painful she never lost her faith. We knew God was in control & even though we didn't know why she (we) had to suffer, God would use all the pain for his gain. Before leaving the hospital the last time, she told everyone that momma and doctors couldn't stop her pain but God could & she just wanted to go home with me then home to heaven. We came home 2 days later & 5 days after that she went home to heaven. God used her to touch so many lives that might not have been touched had she not spent all that time in the hospital. For that 3 years I was with her 24/7 (except during surgeries & other procedures) and I thank God for that time. I admire you for sharing your story to help others. Maybe God used you to help medical professionals when dealing with other patients with similar conditions or to help those patients before they even go to their doctor. Only God knows why these things happen, but I know he uses all our situations for good. Praying for God's will in all our lives for I know regardless of how trying this life is at times, the rewards in heaven will be so worth it (as longer as we let God be in control & use our lives as a testimony for him). In the words of my precious daughter, "there's no pain in heaven". God never promised life would be easy....but he did promise he would go through it with us! May you and anyone reading this be comforted with that promise.

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    1. Wow. Your story and that of your daughter is so touching. I really appreciate you posting it!

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  5. Andrea, your bravery and positivity is such an inspiration to one and all. My heart goes out to you and your beautiful family. Will be keeping you in my prayers and hope things will sort itself out soon for you. God bless!

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  6. I read your entire post while researching possible mastitis during my pregnancy. Did yours start by being severely sore, warm to the touch? After reading this I am definitely going to see my doctor. I'm so sorry for what you have gone through. I'd really like to know how you are doing now. You are an angel to share this experience. Best wishes.

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    1. I haven't updated in a very long time! Things are still going on. Ten months now.

      At first, I just had a lot of pain. Then the redness and inflammation came on.

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  7. Thank you for sharing this. I know you are going through a very tough time right. I went through a similar ordeal when I was pregnant. It was incredibly scary and lonely. I had a core base of support and they just kept being there for me. And that is what you need. Support from loved ones goes surprisingly far.

    Pearlie Kreidler @ U.S. HealthWorks Seattle (Northgate)

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  8. I had mastitis for 6 months straight after I had my baby. I am now 6 weeks pregnant and am so scared I am going to get it while pregnant.

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