(So, I started writing this on April 17th. There’s been a lot going on here, and I’m FINALLY getting a chance to finish. Thanks!)
Hi everyone!
My birthday is next week; I’m turning 30. It’s insane that it’s happened this fast. I’ve been sitting here thinking about my 20s, and it’s amazing how much has changed. I have a diagnosis. I have a health plan. I have doctors who believe me. My brother is married and moved out of the house. I have 2 dogs. What amazes me more though, are the things that have stayed the same.
April 18th has some major significance in my life; not only is it my Grandpa’s birthday, but it’s the day that I discovered I didn’t beat my staph infection. In fact, it’ll be 10 years ago since finding my fluid pocket. Now, the story of how I got this fluid pocket is pretty involved. I’ve never wanted to share my full story, but I’m finally ready.
Growing up, my boobs grew differently. One side was ginormous, and the other side was tiny. It was embarrassing. People would stare, I had people make comments that I stuffed my bra wrong, and I genuinely hated them. Anytime I would mention this to different people, they would make the comment “every woman’s boobs are different sizes. You’re fine.” That statement completely diminished my feelings, and told me that my own self esteem didn’t matter. But what these people didn’t realize is that I wore a prosthetic all through high school. I decided that I wanted to even them out as best as I could. My senior year, my primary doc referred me to a plastic surgeon who said it would be no problem, and he would write to my insurance company to get them to cover the surgery because it’s a depression thing. He ended up taking pictures to keep in my file. After a few weeks, we received a bill in the mail for the consultation. We called to see if he had written the letter to my insurance company, and I never heard back from them. Mom called and pretty much told them to shove it, and because he didn’t live up to his end of the bargain, they weren’t getting paid. They dropped it and that was it. I felt SO violated. So incredibly violated. Not only was this something I hated discussing with ANYONE, let alone a stranger, but he took pictures. He had those pictures. It was such a betrayal of trust, and it took me a long time to work up the courage to even talk to another doctor.
I had a chat with my gyno (who has known me since I was a baby…) and she recommended another surgeon; the kicker with this is that my gyno had breast cancer and ended up having her own reconstruction done by this doctor. She loved him and told me he would take care of me. She talked him up–he used to work in the burn unit in an East coast hospital, he became the head of plastic surgery out of Beaumont, and he was good. It took me a while, but I finally made an appointment for a consultation with him.
Dr. Schenden was a 180° from the first doctor. First off, his office was AMAZING. It was gorgeous, he was on the 11th floor of a huge building, and owned half the floor. My entire demeanor was different going into this appointment. With the first doc, they put me in a room and made me change before even meeting this doctor. With Schenden, mom and I were brought into his office and got to sit in super comfy chairs. We weren’t in long before he came in, and the first words out of his mouth were, “so you’re the troublemaker here, huh?” Omg, I laughed out loud. He was funny. I had gone in, tense because of the last doc, but I immediately relaxed and was able to have a productive conversation. We started talking, and not once did he look at my boobs, but kept eye contact with me. Before going into my story, I had to tell him that I was allergic to latex. His response was, “so you’re a bigger pain in the neck than I thought!” What could I say? He was right! I told him what was wrong, and he began to describe my boobs without looking at them. It was amazing. Then, before even looking at my body, he came up with a plan. We had decided that we would do a reduction and a lift on the big side, and an implant with a lift on the small side; to try to find a happy medium between the sizes. He even said he would make sure to take as much as he could from the big side so insurance would cover it, which was fabulous. It was only after making sure I was comfortable did he ask if I would change so he could take a look and take some pictures for my file. He didn’t pressure me, and he said I didn’t even need to do the pictures that day. It was ok though, we did the pictures, and we were good. He gave me some pictures of previous patients (faces excluded) to see what size I was really wanting; he wanted to make sure he had the right idea in his head for me. All in all, this visit was great. I still wasn’t ready to actually have the surgery, but I felt comfortable enough to agree that he would be the one to do my surgery.
It took another year before I was ready to schedule the surgery, but I finally did it. December 18th, 2009 was the day. Going in, Doc pre-medicated me just in case of any latex exposure. I was the first surgery of the day, so my OR was completely sterile. He did what he had to do, made sure things looked good on his end, and I was sent home. Everything was great. The smaller side, he left the implant only half filled, with a valve right under the surface of the skin to inflate more after a few weeks to get to the size I liked. I hurt, but I felt pretty decent after. I was told that it would be about a 2 week turn around. No problem–I was done with my finals, and would spend my Christmas break recovering, and go back to school in January feeling great………..That was the plan anyways.
About a week after, I noticed one of my incisions had opened a little, and there was this orange fluid coming out of it. It was bizarre, and hurt like hell. We called Doc, and we ended up meeting him at his office at 10:00 at night, which was pretty cool. He told me that I had something called Fat Necrosis, which was the death of fat cells and the fluid was trying to get out. He said it was fairly normal, and not to worry about it. The next day, the incision had a bigger hole. Then another incision split open. This one had tissue push itself through, so I had raw nerve endings exposed. It was some of the worst pain I’ve ever had. It was then that we realized that I was rejecting the dissolvable sutures that Doc had used. Every single incision was splitting open. The original spot that split ended up making a cavern that was about 3 inches wide and 2 inches deep. We can’t just close it up, otherwise it could get infected and cause more issues. With the open incisions, we were able to snip out some of the sutures. 2 weeks in, and they were just as strong as they were the day of surgery. Doc had never seen anything like it. We ended up doing some skin grafting on the tissue that was exposed so that it wouldn’t hurt as bad. He saw me almost everyday at that point. There was one day where we discovered a new incision starting to split, and I mentioned it was itchy as hell. The nurse who was helping me got out some tweezers and spent a good 1/2 hour pulling these sutures out. These sutures were a part of a big long section all tied up in knots together. As soon as it was pulled out, the itch stopped almost instantly. It was such an amazing feeling. The entire time at home, we would do nightly checks to see if we could see any sutures spitting themselves up, and each night we would find a ton. It was said that these sutures should have lost some of their strength, but they were as strong as strong could be. We would clip these out, and hope that we didn’t find more (but, every time, we would…)
After a month, the biggest hole had finally filled itself in from the bottom up, and it was time for surgery to close up all of my incisions. However, I began to get really sick before the surgery–flu like. It was rough; I couldn’t keep water down, but we needed to get these incisions closed before I got even more sick. While inside, he said he saw where the next incision was going to split open, but he was able to remove the sutures out before it split. He said that there was a huge pocket of fluid around the sutures, basically trying to keep them from hurting me. Because of all the fluid he could see, he inserted a drain so that the fluid could keep draining and hopefully no infection would set in. He also said that he could see that the valve was exposed when that particular incision had split, and he had to remove it because it was a direct passageway for bacteria to find the implant, causing me to lose it. Now, when you mix being sick with anesthesia, it’s not a good combo. Coming out, I was miserable, and actually got sicker. I needed to go back the next day, I couldn’t keep water down. I was getting sick every half hour on the half hour. He gave me a medication called Compazine to try to help with the nausea. While I stopped getting sick every half hour, I instead was getting sick on the hour. I couldn’t make it up my flight of stairs without having to stop and rest. I was so weak, just sitting up was exhausting. It was at this point when we called Doc. Mom and I went in to his office in the middle of the night again, this time in the middle of a snowstorm! In his office, he started an IV for me, and gave me 2 liters of saline, plus an anti-nausea IV medication. I don’t remember the name, but it helped. After the 2 liters, I was still so dehydrated that I retained it all. When we got home, I had a glass of water, and actually ate some mac ‘n cheese. It tasted FABULOUS. Because I was so sick, I was sleeping on the couch, and mom had brought a mattress down and was sleeping close by so that she could make sure I was getting my meds on time, and to generally keep an eye on me. While laying there, my muscles in my neck kept tensing up and then relaxing. It was a bizarre feeling. I, making excuses, decided I missed my bed and asked mom to help me upstairs to my bed; except I felt worse in bed. So I asked mom to come back downstairs–She’s a saint and I don’t know what I would do without her–and she started to rub my shoulders, hoping it would help them to stop tensing up. As soon as she started rubbing, we noticed that my neck was twitching ever so slightly. She told me to stop and I said “I’m not doing this on purpose. This just started.” It was really bizarre. Mom went up to get my dad who used to be a paramedic. By the time he came down, the twitch had gotten worse, and I was full on turning my head to the side and relaxing. My dad immediately got on the phone with Doc (keep in mind, this is around 3:00 in the morning) and Doc answered right away. We were all scared, and we were told to get in the car and get to the hospital right now. He explained that I was having something called a Dystonic Reaction to the Compazine, and it can only be stopped at the hospital. By the time we jumped in the car, my neck was so contorted, it looked like I was trying to touch my back with my cheek, and I had started to seize. It was terrifying. The more I would fight it, the worse it would turn. Mom sat in the backseat with me, trying to keep my head from twisting off while dad drove. She was using all her might and my contortions were still stronger. Doc had called ahead to tell the hospital I was coming. They immediately got me in a room, and gave me a muscle relaxant and an anti-seizure medication. I passed out at that point, but my parents said they could see my muscles relax, and my body stop stressing out. What I remember is waking up the next day feeling like I had been hit by a truck. At one point, I felt my neck starting to tense up again, but I had some medication here at home that I took to help it relax. I don’t know if it was just me overreacting, or if it was coming back, all I know is that it was the most terrifying night of my life. When I was able to talk with my parents about what happened, they said the one comment everyone kept saying was “I’ve seen reactions like this, but NEVER this bad.” Doc had said that when my incisions split too. I was tired of hearing that I was the most EXTREME cases of everything I was doing. Just completely over it. Unfortunately, things got worse.
I think it was 2 days after the dystonic reaction, (I could 100% be off, but I know it wasn’t long…) I went back for a 2nd post op appointment. It was there that I was able to get my drain out. As he was taking it out, he mentioned that he had taken a culture of my tissue while he was in for the 2nd surgery, and the results came back that I had a staph infection. Now, it was right around this point when MRSA was really running rampant in high school locker rooms, and I froze…could this shit actually kill me? Yes, yes it could. We immediately called an infectious diseases doctor who took a look at my test results. She was afraid that the infection had attached itself to the implant, meaning I would never beat it. Because of this she set me up for immediate IV antibiotics, with check ups every other day. FABULOUS. What else could go wrong??? So, I started IV antibiotics. Well, because my body was so heightened, I began to react to the antibiotics, but I couldn’t give them up. I had been driving myself up to this point, but because of the reaction, now I was given IV Benadryl to help my body deal with the antibiotics. So, I became extremely reliant on my friends and family to get me to my appointments. Most everyone was great and helped; there was one day where the person I was relying on bailed…but I was able to get a hold of an old friend from high school who I hadn’t seen in forever to take me, which was really nice. Through this, I was still trying to attend college full time (I know, I’m CRAZY) and I even met a great friend who was more than willing to drive me to an infusion and work on homework together. It was hard work, but I managed to pass that semester with a B average…which I was pretty impressed with if I do say so myself! ANYWAYS! I did the IV antibiotics for 2 weeks–every day–weekends were a pain, because it was at 8am about a half hour from my house, and it was a long infusion. There were a few of us who all sat together on weekends and watched old game shows while we were infused. But, I was doing great. My blood work was showing that the infection was going away, and I was feeling good. My doc felt good enough about it that after the 2 weeks, she gave me an oral antibiotic to take instead of the IV (which was amazing.) It was a crazy heavy duty antibiotic–I had to drive to another city in order to get my prescription filled, and it was expensive, but it had to be. I was on that for a month. And we really thought that I had beat the infection…..for about a month. And then, April 18th came, and I discovered a fluid pocket. I was crushed. Not only did I not beat the infection, but because it had come back, that meant my implant had to come out. So, I discovered the fluid pocket on Sunday, the 18th. The 19th, I called my doc. The 20th, I saw her. She told me to call my surgeon and get in to see him. I called him the 21st. I saw him the 22nd. He said “What are you doing tomorrow?” I told him that I had my last final (again…crazy!) and his response was, “what are you doing after?” and my reply was, “What am I doing after?” And he tried to make a joke, but he knew that I was really upset. “You’re having your implant out!!!” We made the appointment for after my final…He told me that whenever I could get there, to get there. It was the 23rd, the day before my birthday, and I needed to have my implant out. Happy Birthday to me.
The day of my birthday, we had to go back for my post op appointment. I’m feeling utterly defeated–something that I had decided to do for myself had turned into a nightmare. I was in pain, I was depressed, I had put my body through the wringer, all to end up right where I started, but with more scars. I had never felt so low in my life. But, they surprised me with a card and a (mylar) balloon to try to make me feel good. The entire staff had become like family at that point. We were there so often and spent so much time together, it was natural that they would do something for me. It gave me the small boost I really needed to get through the day. Doc told me that my implant was covered with infection, and he scrubbed and cleaned my tissue so that we would get rid of any staph that was still there. Now, like before, you can’t close a big space up without letting it heal from the inside out without risking infection. SO! What we got to do was take gauze that had been soaked in Betadine solution and stuff the cavern until it healed…every day…until it closed itself. This was so painful, my tissue was raw, and it kept being poked and prodded which just made it feel worse. On top of that, we started another round of IV antibiotics; this infection just wouldn’t go away. I did the infusions for a week, and then had another month on oral antibiotics, and it FINALLY went away. So, everyday I’m getting to see Doc and get poked. Well, naturally, the incision wanted to close, to heal itself. We couldn’t let the incision close because we had to keep changing out the gauze everyday. One day, doc didn’t like how small the hole had gotten, and without telling me, he stuck his finger in it to open it back up. Not only was I surprised, but it hurt like hell, and I actually slugged him right in the face. It was a trigger response. The nurse ran over and gave me a high five and told him he deserved it. He acknowledged that he PROBABLY SHOULD have given me a heads up. I told him I’d slug him harder next time he tried that. He promised that he would, not only give me the heads up, but numb it up too, that way I wouldn’t feel it as much. We made up after that. He totally deserved the punch, and I’ve never been more surprised with myself as I was in that moment.
This went on for 7 weeks. Everyday. At some point, he told me that I didn’t have to keep going with the betadine, but I could switch to simple saline and if I knew someone close to home who knew what they were doing, they could do it themselves, so I didn’t have to keep driving out everyday. Thankfully, one of my 2nd moms is a nurse, and was more than willing to come and help me out. Fabulous. I was still depressed. I was lonely. I started talking with my parents about getting a dog, because I was so low, and a puppy would keep me company while they were all at work or school. So, I began scouting Petfinder, and I found this adorable little black lab that I absolutely fell in love with. He had the cutest face with this little white goatee…I couldn’t help myself. 
I filled out the application (without telling my parents I was doing it…) and waited. 2 days later, I got the phone call that I had been approved, and that Saturday I could go and pick up my puppy. I was so excited. I ran down my stairs, found my parents, and said “MOM! Do you know what we’re doing on Saturday?” She looked at me and simply said, “what are we doing Saturday?” “WE’RE GOING TO PICK UP MY NEW PUPPY!!!” She smiled and said “we are? Well, where are we going to find this puppy?” It was at that point when I knew that they were totally ok with getting the dog. OH MY GOD it was so exciting. I still had to go to the docs office that morning, but thankfully picking up the puppy was further out from my docs, and it was a perfect round trip. So, we get to the house where I’m meeting my puppy, and there are 4 of them all sitting there, all so tiny and adorable. I was in HEAVEN! Who doesn’t like puppies??? His foster came over and handed me him, and I was in love. I mean, seriously. Look at that face! How could you not be? We were warned that while he was the smallest, he was the most annoying. And he’s lived up to that reputation! I was insistent that I was going to name him Jack. As soon as I looked at him, I knew he wasn’t a Jack.
Running around in the back yard first day home.
So, he
remained nameless until we stopped and got some gas. My friends had started to text me, asking if I had gotten him yet; his reaction to the vibration of the phone was PRICELESS. He had the ears all cocked up, doing the head tilt, and I said, “he likes the buzz of the phone!” Mom looked at Jake (who wanted to come along because…PUPPY!) and I and said “that’s his name. Buzz.” And it’s fit. He was SO CUTE! And, while he was a pest, he was seriously the best thing ever. 
He has kept me company when I was lonely, kept me on my toes, and has been so entertaining when I’ve needed a smile. He seriously helped me get through some really rough times.
After the 7 weeks of healing, we were FINALLY able to stop with the gauze. I got some good news, and some bad news. The bad news was that now that everything was healing, I felt even more like everything I did had put me right back to where I was in the beginning: Uneven, self conscious, and depressed. BUT! There was good news! Doc told me that with all the gauze healing, I had developed enough scar tissue built up that I didn’t need the implant anymore. I cried when I heard that. For the first time since that first week in December when we thought everything was fine, I had hope that I would finally get what I wanted. We all agreed though, that my body needed at least 6 months before we did ANYTHING else to it. What we would do instead was something called a fat graft. A fat graft is where you take some fat from one part of your body, and put it in another spot. So, in my case, we would do some liposuction from my belly, and put it in my boob. It’s a really cool procedure. Because we were using my own tissue, I had a better chance of not rejecting it like my body would probably want to do if we tried to use another implant. I wasn’t complaining! So, those 6 months flew, and Doc and I decided it was time for the surgery. He also wanted to do some scar revision (he’s a plastic surgeon and perfectionist…) because he didn’t like how the scars looked. Again, I wasn’t complaining. Sure, it would hurt, but it was a great idea. The surgery went BEAUTIFULLY. There were no complications, and I felt good. We decided to do another fat graft 6 months after that. Everyone involved was happy with the result, and I was high on cloud nine. Sure, it had been a year and a half from my beginning instead of the 2 weeks, but I felt great. I was happy, and everything healed wonderfully. I was done.
Or so I thought…a couple years later, I found a lump. It was small, but with everything that had happened, I was afraid. So, I called up my gyno, and she felt it but didn’t really think it was much of anything, but sent me to see a surgeon anyways. He felt around and decided it was more fat necrosis, but this necrosis had calcified a small spot of healthy tissue. He did some needle aspiration biopsies to ease my concerns, but really didn’t think much of it. Sure enough, it was fat necrosis. He discovered a spot he was a little more concerned about though–at the bottom where the incision for taking the implant out was. Makes sense that scar tissue would build up there, but we didn’t think much of it. He directed me to keep an eye on it, and call if it changed. A year later, it had grown a crazy amount; it was painful and hard. I went in, and once again he thought it was more fat necrosis, but he would go in and take a biopsy anyways in an emergency surgery, just to make sure it wasn’t cancerous. While he was taking the biopsy, he was going to try to break apart the calcified tissue so it would be reabsorbed into my body. Once again, he was right; but, his attempt to break up the necrotic tissue failed, and once again, I was calling Doc up to take a look. Fortunately for me, his new partner took my insurance, and I was able to see him with insurance taking care of everything. The partner was good, but Doc was hilarious and had to come in and keep an eye on me–I was his favorite patient! In all actuality, he knew how much of a pain I was, and wanted to make sure that my body behaved for his partner. The partner told me that because it’s painful, it should come out. GREAT! BACK TO THE BEGINNING…AGAIN! WHY IS THIS CONSTANTLY HAPPENING TO ME??? Something that should have taken 2 weeks to heal has turned into multiple YEARS, and I’m not done! But, this time, instead of doing more fat grafts, he would take out the necrotic tissue, and do a flip of one of my ab muscles, and that would become my new breast tissue. Yes, I would be at a higher risk of hernias, but my boob would have ample blood supply and it would be fixed. We agreed. It was like a free tummy tuck! I was told to expect to stay the night, and I would be hurting for a while after. So, I went in and had the surgery. Doc made sure to be there for me, and to oversee his partner in helping me out. He loves me. He donated his time, simply because he knew my body and knew what would happen if something wrong was used. He is one of the greats. There’s a reason he’s the head of plastics at a major hospital in the area. Coming out of anesthesia, first thing I did was to check to see if my stomach hurt by flexing it (the wonders of anesthesia logic) and discovered that it didn’t hurt at all! It turns out that even with the lumpectomy, it still looked good and I didn’t end up having to have the ab flip. I asked how much tissue they took out, and they said it was about the size of a stick of butter. Which is insane when you think about it. It floored me when I was told. But, it was great because 1) I got to go home that night, and 2) it wasn’t as invasive, and would be a quicker healing time. FABULOUS!
Throughout the saga, we discovered that my body didn’t like anything sticky on it–tape, band aids, steri-strips…ANYTHING. Well, after this particular surgery, they used a big piece of clear plastic tape to keep things in place until the post op appointment. In taking off the plastic, my skin ripped, which is apparently a common thing to happen this particular kind of dressing. Doc told me to put some triple antibiotic cream on it, and it would be cleared up in no time. Unfortunately for me, I had developed a Sulfa drug allergy…2 of the antibiotics in the triple antibiotic cream are sulfa drugs. My would kept getting worse and worse. It was so painful and gross looking. It was the size of a quarter after he finally figured out, “oh gosh…maybe it’s the sulfa drugs in the cream that’s making it worse.” GEE, ya THINK?! We were able to talk to my allergist, and he got me some prescription strength antibiotic cream which cleared up the would quite quickly. I have a nasty scar from that, but I call it one of my battle wounds.
So, there you have it–my saga. 7 surgeries, all of them traumatic and hard on my body. However, I think I’m lucky to have gone through these battles–I ended up winning the war. They have made me the person who I am–literally. Not only mentally, but physically as well. It’s our hypothesis that it was all of these surgeries that made my MCAS get really bad as quick as it did, but again–I wouldn’t trade this experience for anything. It helped me to see who my real friends and family are. I lost a few friends who couldn’t handle being friends with the girl who was always sick. However, if they were weak enough to disappear when I needed them the most, they weren’t real friends to begin with. It helped me to see how strong I really am; I genuinely believe the stress and the trauma of these surgeries helped to prepare me for the battle I was about to begin with my MCAS. I love talking to doctors about this journey; most can’t believe everything that I went through. There are days where I can’t believe that I went through all of that. One thing I know for sure is I’m proud of who I am now. I haven’t shared this story with a ton of people before–it’s personal and I wanted to keep it to myself. I was a little embarrassed about it, but I’ve learned it’s nothing to be embarrassed about; it was a journey. Sure, it was a hellish journey, but again–I would do it all again in a heartbeat.
So, it’s been 10 years. I can’t believe it’s been 10 years since everything. 10 years ago, I was fighting for my life…and I’m still doing that. Sure, it’s a different kind of battle, but it’s still a battle for my health. I’m still learning who I can and can’t rely on; it’s been a hard battle with a lot of losses along the way, but I’m glad that I’m able to weed out the people who don’t actually care. I would not have gotten through this if it hadn’t been for my family, both blood and chosen. But once again, my mom is my hero. She gave up so much to help take care of me; I genuinely don’t know if I would be here without her. She’s my best friend, and I’m glad that I can call her that.
Ok, enough rambling. I’m going to get some sleep and relax. I love you all, and thank you all for sticking with me through this journey–it’s been a long one, but I know there’s a light at the end of this bumpy, rickety tunnel.
All my love,
Kristina♥
Life with MCAS 