They say a picture is worth a thousand words. I tried my best to write a blog entry but was unsuccessful (multiple times). You see when I share my story…it sometimes causes me mental distress to do it. I relive the situations so others understand and become aware that this can happen to anyone at any time. I also do it to avoid those awkward conversations that could frankly take hours for me to really tell you how I am or how I feel. Today is the one year anniversary of my snail and although I get mad at it often…and hate the pain it causes me on a daily basis it has saved my life more than once. I couldn’t write a long blog this time..because my tears got in the way. I usually try to only post positive, upbeat and heartfelt blog posts. However, the truth is…I’m sad, mad, grateful, and beyond blessed today. Thank you to all my friends and family who help remind me everyday that I’m still me. I’m a wife, a daughter, a granddaughter, a sister, a cousin, a niece, a daughter-in-law, a best friend, a friend, and someday I hope to be an inspiration to others.
As I sit here, in an itchy and uncomfortable amount of pain I wonder what a day would be like without any pain or discomfort. Those days are a faint memory to me and I complain less and less because I don’t want to appear as weak-when truly I am emotionally and mentally the STRONGEST person I know. I know, I know..sounds a bit boastful right?! When you’ve endured seven surgeries to date and live in a constant state of skin burning and irritation-then you can judge. I won’t go on about the pain, but here’s a comparison for you all. Ever taken tall socks off after a long day, and when you take those socks off you can see the indentation mark from the socks…and it begins to almost itch from the restriction all day. That’s what it’s like wearing a bag with an ostomy belt 24/7. Except you can’t take the bag off, but for short periods of time. Welcome to my itching, burning, painful hell with what I have referred to as “the snail”–which mostly is because it is constantly moving.
The entire day and night before my very first surgery, I was beyond sick. Everyone who knows about colonoscopies understands you have to take, what I refer to as “colon blow”–the name speaks for itself. At this point I weighed about 117 pounds and I was weak from my two months in ICU and the Remicade reaction. From the time I got out of the hospital to the day before my surgery, anything I ate would go right through me-literally. So, when it came time to take the colon blow…there wasn’t much left to blow. However, my mother insisted that I try to drink some of it. I also was given an antibiotic to take with the colon blow-which created the perfect storm within my body. I was a mess, I was puking and sicker than sick (as if that was even possible). I have never been able to drink that stuff and by this point it was my third round of bowel prep in just five months. I truly hope they develop some kind of alternative that tastes way better for you future Crohns and Colitis patients, because this stuff is no joke. It tastes absolutely terrible going in and it’s equally as terrible coming out (via vomit or otherwise). Even writing this now, and thinking back to that last day of taking the colon blow, my throat clenches and my stomach does a flip or two. If you’ve never experienced it, consider yourselves extremely lucky!
I didn’t have a lot of choices, as my previous blogs stated…it was lose the colon or live with the excruciating pain. Obviously a no brainer for me, but even the most certain person has doubts. I had doubts up until the night before, when the nerves started to set in that tomorrow I would lose my colon. At this point my nerves set in and began to overwhelm my stomach. I remember sitting on the toilet (as if I had anything left in me-which I did not) and my colon was spasming. Colonic spasms are extremely painful and are known to be brought on by internal stress. Which, no doubt, I was having the night before the biggest surgery of my life. So as I’m sitting on the toilet, not going, but in excruciating amounts of pain-my mom came in the bathroom. By this time I was in tears and I remember her words to me like it was yesterday, “Jerica, after tomorrow you’ll never have deal with this much pain again.” I took those words to heart, and replay them over and over in my head even today. Weather it was the truth or not, it was what I needed to hear in that moment. Also in that moment, Gibson (my little Morkie puppy) who is no doubt the light of my life…came strolling into the bathroom with his little blue blanket attached to his bum! He could tell I was upset, and he too, knew I needed his little personality to make me laugh and temporarily forget about the pain.
The next morning I woke up, and tried my best to mentally prepare myself for what was to come. There’s no words to describe the fear I felt. There just is not. I knew things would change and I hoped for the better. I knew I’d have challenges ahead of me and that life would be different going forward. Very little people knew the details of the surgery I was going to undergo-and in the beginning I didn’t want anyone to know anything. In a way, I looked at it like this, the people who needed to know did and everyone else could wait.
As I laid in the hospital bed, waiting for the stoma nurse to come in and draw the spot where “the snail” would make it’s debut I became very nervous. I remember the nurse asking me where I would like the stoma to be. I had no idea that the spot I chose would be there for nearly two years-but I pointed and said how about here. I mean did it really matter? At the end of the day, a scar is a scar and it wouldn’t make a difference to me. She could tell I was nervous and said that sometimes people name their stoma’s-I immediately thought that was insanely weird but smiled and said, “Oh, really?” I think it’s odd that we name our stoma’s…but I understand why people do. I suppose that’s why I gave mine the name “the snail”…it’s weird looking…it moves and is almost always slimy. Thinking back to that awkward conversation with Denise (my stoma nurse), I’m sure she was trying her best to make me feel confident and comfortable with my decision. Nonetheless, it was a huge decision I was making and I don’t think anything or anyone could have made me feel at ease.
Even today, almost a year later as I’m writing this, the thoughts that come flooding back to me are those of fear and uncertainty. I often cry when I have to relive these memories-but I do this to help others. I think about what other’s want to read, what they need to hear, and what the world needs to know about me. I have a unique case, and I have from the beginning. I never intended to share my story with the world, and most certainly didn’t expect to write about my story for all of social media to read and experience. I had no idea how long this road would be. And still today, I don’t know where the road leads. It’s as if I’m walking without a map, without an end in sight. Each step seems like a mile and I’m thirsty for answers.
I often feel as if I’m stuck in a body I no longer recognize. It’s as if my insides are winning, and my body’s appearance on the outside now displays all the damage from Ulcerative Colitis. Whoever said this was an invisible illness was wrong. If you have Ulcerative Colitis and live with the pain on the inside and behind closed doors, eventually your outside appearance will reflect what your insides are yelling at you. The pain will ultimately wear you down so much, beating every last ounce of energy you had, until there isn’t any other options left but to choose the inevitable. We all suffer in silence and deal with the embarrassment and daily struggles of living every single day. What happens when you realize you have nothing left and no other choice-you fight some more.
The weeks after getting out of the hospital I remember feeling the withdrawal of the pain medicine, and being extremely sick and fatigued-to say the least. It was a hard transition, as I was still taking meds for not only the pain, but also for the C-diff I had acquired while in the hospital. I was sent home with a bunch of medicines and also a limited amount of pain medicines, as Toxic Megacolon (TM) was also a worry for my doctors. I remember being warned repeatedly, while in the hospital, that if I asked for too many pain medicines that TM was a likely possibility. Obviously, the pain far surpassed anything I could tolerate, and without much thought I continued to take the pain medication. I took Dilaudid in the hospital and Hydrocodone when I got home. After being on the pain medicines for so long, my body became used to having those drugs, and I experienced what I would later realize was a withdrawal. I remember laying on the couch tossing and turning and feeling as if I was going to puke. I did a few times, and it took days of feeling not well to feel “better” again. That feeling of unbearable pain mixed with prednisone, and about half a dozen other medications didn’t help much during the withdrawal process.
I remember being at home and feeling absolutely miserable, everything was getting to me, and unfortunately for my family-no one was safe. Life wasn’t fun for several weeks, and continued even beyond when I began to deal with the trauma of losing my colon. It was an emotional roller coaster, to say the least. I was lucky enough to have had my family around during such a difficult time, and it was a hard process. A decision I had to make that wasn’t easy. In my mind, I had exhausted all of my options. I had tried the holistic route, I tried the medical marijuana route, and I had tried every drug imaginable. After my Remicade ordeal, I was no longer a desirable candidate for Humira or Imuran nor was I brave enough to experiment with the drug Entyvio that was approved by the FDA in May 2014. The road was narrowing with less and less options and the only path left, or so it seemed, was the road that would lead to the removal of the diseased colon from my body.
During my first meeting with my surgeon Dr. Ramamaoorthy (in mid August-2014), she explained everything and it all sounded relatively routine. She explained the three step surgery to me in relatively simple terms. Step one, go in cut out the diseased organ (colon) and create the stoma. Step two (three months later) go in and create the “J Pouch” while rearranging my insides completely-in conjunction with tacking up my fallopian tubes out of the way (as to not create more scar tissue and keep them out of the way of the J Pouch). Step three (3 months later) the final surgery and “the takedown” of the stoma and the reconnection of my stoma back on the inside. It all sounded simple, straight forward, and as I mentioned earlier, routine. However, I should have known I would be the extraordinary case that wouldn’t go as planned. From the beginning of this entire diagnosis of Ulcerative Colitis I have been given a hard time-from the Doctor’s misdiagnosis, to the lack of proper medical treatment at Balboa Naval Hospital, to my stay at Pomerado Hospital that, certainly did not go as planned. It took me awhile to understand the process and what would be happening to me. In fact, I feel like I was in such a whirlwind of pain and anticipation that I couldn’t even recall what she said to me-lucky for me…my family was right there to remind me.
I can’t describe the pain well enough to help any of you who don’t have UC understand what it’s like. All of my life, I’ve eaten whatever I wanted…without much consequence- be it weight or anything else…and now I could only eat bland food. As everyone’s suggestions were taken under advisement-the message my body was giving me was clear…there wasn’t anything I could eat and no magical recipe of foods that would make the pain stop. Coffee, my love for coffee, was a distant memory in the weeks leading up to my first surgery. So on top of the physical pain, and the continuous embarrassment, was the daily emotional stress of figuring out what to eat and when to eat it. If I had to leave the house (for a doctor’s appointment), I would refuse to eat anything several hours before and while I was out of the house for fear of an accident. At times I considered starving myself, hoping that would help my colon relax and feel better. Emotionally, I was a wreck. I was angry, sad, fearful, hopeful—but angry. The prednisone didn’t help my anger (that’s for sure). Everyone in the world can think they understand…but until you’re walking in the shoes of someone who has UC…you have no idea the pain we’re enduring. Depression usually follows a diagnosis of UC (and I wasn’t the exception). You realize that a part of your life is over; the part where you can eat and not worry-have a drink and not worry…or do anything and not worry. Car rides became scary, and even trips to Target became scary (as it’s a huge and overwhelming store). Anywhere I went, where I didn’t know if there would be a public restroom close by would send me into an anxiety filled panic. There’s a saying, “You know you have UC when you choose where to shop and eat based on their public restrooms.” This was how I lived my life for 8 months before I realized, this wasn’t the kind of life I wanted to live.
I try not to dwell on the past but in order to understand me, this disease, and why I am the way I am today-living with part of my intestine protruding out of my body with a bag attached to my side-I have to share it. On the days that I feel like crying, giving up, or hiding from the world…I write. I write from the depths of my soul and I share my story to help other’s feel like they aren’t alone in this journey. With that being said…this is the transition from Pomerado Hospital to going home.
By this point it was weeks of being told that once my platelet count was good, I could go home. After a month and a half in Pomerado Hospital I was ready to leave. However, my Doctors insisted that my platelet count had to be a certain number before I could be released. Every morning, during morning rounds, I’d ask my numbers-and do my best to remember the answer by the time my mom and mother in law showed up. Still on Dilaudid daily, mixed with Benadryl and other medicines, it was hard to recall a lot. However, I remember the morning my Doctor came in and said that I could go home. I was so excited to get home to my puppies and to be able to sleep in my own bed. At this point I still had the picc line in my neck-and I remember my husband being the only brave soul in the room to stay and watch as they pulled this long tube that went in through my neck and was (for lack of better words) sticking into my heart. It takes a lot to make a Marine weak in the knees..and twice now he’s had to endure the same displeasure of seeing his wife having long tubes pulled out of her. Nonetheless, he didn’t faint and for his strength during a difficult time, I will always be grateful. I remember when the tube was being removed, the Doctor asking me, “Do you want a picture of this…” and I couldn’t bring myself to look at the tube (approximately the length of my arm) long enough to get a picture. Looking back now, I wish I had-but who knew I’d have such a long story to tell.
On the drive home from Pomerado Hospital, with my husband, I remember crying tears of happiness and sadness. I was so happy to finally be out of the hospital, after being stuck there for so long. Everything seemed new, after a month and a half of pure hell…I was in the car and listening to the radio. The world certainly didn’t stop because I was sick, and the new songs on the radio were music to my ears-literally. It was the strangest feeling, but I remember getting into my car (the passenger seat) and just feeling the sunshine beam into the car as we drove home. It felt amazing, with the sun glistening against my snow-white skin tone, I remember feeling free-finally free. It was the little things that I took for granted before…like riding in the car…that now..felt entirely different to me. I remember pivotal moments throughout my illness, the day I sat outside in the rain as my mom wheeled me around the parking lot while it sprinkled tiny rain droplets on my hospital gown, and the day I left Pomerado Hospital. I remember the feeling of pure joy, that until then I’m not sure I experienced. Pure joy, pure appreciation for life-my family and close friends. It wasn’t a vacation (by any means).. but to me these different memories I have in and out of the hospital are some of the best memories and better than any vacation I have ever been on.
The sadness I felt was beyond words, but I’ll do my best to explain the unexplainable. Imagine this, entering the hospital with hopes and high expectations that not only would my doctor fix what was wrong-but in turn make things all better. I mean this is why they get paid the big bucks right?? This was not the case for me. Not only was I told there was nothing else he could do, or offer me for pain relief, but now I was preparing myself mentally and physically for the next step. When I left Pomerado Hospital, I already knew what was to come. I already had an appointment with Dr. Sandborn (who came highly recommended from Dr. Lee). I needed to prepare myself mentally as the inevitable was coming. Through the process at Pomerado Hospital, and even into the first meeting with Dr. Sandborn-I had no idea that removing this diseased organ from my body would mean anything other than simply removing my colon. However, it’s not that simple-and perhaps I was naïve, or perhaps I was in too much pain to understand all the options as they were presented to me over the past few months. Either way, when Dr. Sandborn explained the process of removing my colon-I remember looking to my mom in shock. With a look of fear and panic as if to say to her “their going to do what and put it where?” As Dr. Sandborn suggested other drug therapies, which I quickly negated, the message was clear to him-surgery was MY only option and hope for relief. Without any other solutions to offer-he provided the referral to see Dr. Sonia Ramamoorthy.
One of the proudest moments for a military wife is when she is asked by her husband to pin him to the next rank. I barely remember Josh coming in to tell me (when he found out for sure) that he would be pinned on August 1, 2014 for Sergeant. I was so happy for him-in fact I remember asking Dr. Lee weeks prior, “Do you think I’ll be out of the hospital by August-I have to pin my husband he’s going to be promoted.” Looking back now, his response was always the same, “Let’s try for then, we will see though.” I now realize that this was his very gentle way of saying, “probably not.” Nonetheless, I was beyond proud of my husband. I wanted to attend that pinning ceremony on base more than anything! That’s what kept me going was having things to look forward to. Unfortunately, I missed two important events in both my best friend, Andrea, and my husband’s lives. I had been waiting years to be Andrea’s matron of honor and I waited even longer to pin my husband to the rank of Sergeant. These were huge milestones for both of them-and ulcerative colitis took both of those special days away from me. For that, I will always be both sad and upset that I wasn’t there to partake in their special events.
I remember when my mom, my mother in law and Josh came to the hospital and told me that we would have our very own pinning ceremony in the hospital for Josh. I was determined to pin my husband to the next rank, in a way-I earned it too. Some wives will say you should never wear your husbands rank and I agree-but when you stay with you husband from the rank of Private all the way up through–there’s something to be said for that. It was a happy time for us both, and I was excited and nervous for my husband’s co-workers/friends/fellow marines to see me in the state I was in. Unfortunately, from the plateletpheresis treatments along with my body enduring so much trauma in such a short period of time, everyone was able to look into my eyes and see the pain-literally. It was an odd vision, I’ll admit, but it was scary to look into the mirror-even for me. How could I expect anyone else to be able to look at me without wincing. From what I remember of the pinning ceremony that we held in Pomerado Hospital for Josh, no one looked at me strangely. They all had this open warm heart that wasn’t judgmental, however I remember not being able to look anyone in the eyes. I didn’t want to scare anyone and I also requested that no pictures be taken. I didn’t want anyone being able to look at me later on, nor did I really want to necessarily remember that I wasn’t able to pin my husband on base in front of his command and superiors in that patriotic outfit I had envisioned in my head.
Instead, I wore this very cute leopard print ensemble my mother had put together for me. With all the IV’s that were in my arms and neck it was hard to wear anything other than a hospital gown. However, my mom had purchased this leopard print dress and matching flip flops-an outfit I will never forget. It was beyond sweet, and only aided in creating a memorable evening.
Our mothers and friends did a great makeshift pinning ceremony for us though-I remember being so highly medicated that when I went to pin Josh I actually put it on upside down. Newhouse quietly whispered to me, “It’s upside down.” I remember snapping back into the reality of what I was doing at that moment and nervously giggled-as I think prior I was in a fog of pain medicine and uncertain feelings. Although everyone was supposed to be staring at Josh, in that moment, I could feel all eyes on me. Ethan Newhouse, Katie and Greg Hartig along with Diane and Alec Stoddard and their son stood around us as I pinned my husband. Without the help and support of our military family members as well as our mothers, I wouldn’t have the wonderful memory of pinning my husband. I will always be grateful and feel blessed that as my illness grew worse I had the support of other military families along the way.
Here’s a little video blog I decided to do in honor of my birthday today! It’s not often I do my makeup or my hair these days so I figured why not. I also want to say thank you to everyone for all of the birthday wishes!! It means so much to me that everyone took the time out of their day to wish me a happy birthday! Thank you all😘
Please watch the video of myself in the hospital and take it as a warning of not only what Remicade can do-but how different drugs can severely affect you. When you have a weakened immune system, the chances are significantly higher that some of these drugs can negatively affect a person. I read all the time that people are going to try this drug or that one-but seriously…do your research and know all your options. Doctors aren’t fortune tellers and they can’t predict how your body could react. They can give you the options at hand,but it’s up to you to decide if the benefit outweighs the risk.
This will be hard for some of you to watch-and I am forever grateful to my husband for taking these videos. Without them, I don’t think I would truly understand what happened to me. I am told stories but until I saw it with my own eyes-I don’t think I could have ever realized how bad things really were. When your sick, really really sick-you don’t remember the details. You remember the last memory and the first one if/when you’re lucky enough to return to a somewhat normal state of mind. When you watch this video I want you to notice the “moon face”…which was a result of being on the drug Prednisone for so long. A picture is with a thousand words-but a video speaks for itself.
The hardest part about recalling my memories for these blogs, is recalling what I feel I have suppressed subconsciously. However, I have all these random memories-some of which (I think) are a funny blur. Prior to my mom and mother in law arriving in California…I had this nurse that I had nicknamed “Milkshake Renee”. I called her this because I had two nurses named Renee-so to keep them straight… I eventually nicknamed one Milkshake Renee and here’s why…..
One night, my husband was at the hospital with me and I asked him if he wouldn’t mind getting me a milkshake from Carl’s Jr. I was feeling particularly good that night, Dilaudid was to blame, and by this point I had been in the hospital for a few weeks. Therefore, the highlight of my day up until this point was the night nurses (as they are so much more relaxed and just overall nicer), my husbands arrival in the evening (as he was going to work and then coming to the hospital at night), and the drugs they were giving me to keep me pain free (aka IV Dilaudid mixed with IV Benadryl). Most certainly, the best part of my day was when I would have all three-a great night nurse, my husband close by, and my IV meds. It was about 11:45 PM when I asked my husband if he would be a doll and go get me a milkshake. He quickly agreed since Carl’s Jr. was right outside of the hospital’s enterance (and I think he was in the mood for a milkshake too), and since he agreed so readily I then picked up the phone and dialed my favorite nurse. I remember thinking to myself, this is the least I can do from this hospital bed. So when she answered her nurse phone I said, “Renee, my husband is going to get me a milkshake, would you like one also-my treat!” Her response, after she giggled (as she must have been able to tell I was a little high on meds) was something like this, “I would love one, thank you-you’re such a sweetheart.” I responded asking her what flavor she wanted and she replied quickly, “Chocolate!”
To be honest, I don’t remember much after that. Except when I would talk about her I would refer to her as “milkshake Renee”…Not long after I was put into ICU. Where the memories went from milkshakes and nice nurses to having restraints put on my hands and feet and being scolded to stay in bed. The transition from happy to scared and feeling alone (although I know now that I had people around me) is quick and somewhat seamless in my memories. If anyone is confused by the sequence of events with this blog, it’s because in my mind-this is the order. I remember specific events not in sequential order-but I try my best to express the happiness, sadness, and how unbelievably scared I was and still am through most of this process. My memories are a blur, but to my close friends and family that were (and still are) a part of this journey with me know the gruesome and horrific details of living life with ulcerative colitis and now a burning stoma.
It was when I started to call my husband “Mommy..” that he broke down and called his mother. Explaining to her, he was unsure if he’d ever be able to have a normal conversation with me again. I can’t imagine how scared everyone was, but I can tell you that when my mom became aware of this she booked her flight along with my mother in law and they flew across the country immediately. It was the bits and pieces of information my husband provided to each my mother and my mother in law and together they knew they had to be here- not only for me, but for my husband as well.
The first time I remember seeing my mom was when my left hand began to swell up. Later I was told that I had a blood clot in my hand-and that no IV’s or blood pressure were to be taken/used with that arm. In fact, there was a sign above my bed that said this-and I remember asking the Nurse, “Why is my left arm not to be used for anything?” Her response, “I’m not sure let me look into it.” Awesome right? But this was much later on…when I started to come back to reality. The first time I truly remember seeing my mom and mother in law was when the doctor said, “We may have to cut her rings off.” It is the only clear memory I have-because it was at this point that I thought there is absolutely no way you’re cutting any of my rings off. I worked so hard to obain each and every one of them. So, it was at this point that we began trying everything to get my rings off…we soaked my hand in ice water..and I still remember the pain of it. Then my mom ran down to the gift shop to get windex as my husband continued to pull on my rings to get them off. Lesson learned: NEVER go into a hospital with Jewelry on…and I haven’t since. It was a hard and painful lesson learned.
Thinking back now, I think I can recall different specs of time where I would see my mom and mother in law there…but at the time my brain didn’t correlate it all. It wasn’t reality because it didn’t make sense in my web of scenarios. I remember repeatedly saying to them all, through tears, I’m so glad your all here and I meant it. Without the help of my husband, who undoubtedly had to make some of the hardest decisions of our lives, my mother who endured the pain of seeing me on the respirator and not knowing if I would live or die, and my mother in law who was the support we all needed and still do today-I’m not sure what would have been.
One of the best memories I have with my mom and mother in law was the day we all sat outside and talked and listened to the rain. The air was crisp and cool and it was truly a breath of fresh air for me. It was a day of serenity and peace. I was wheeled outside the front of the hosital, and we sat for hours. I asked questions I didn’t have the answers to-and we discussed what happened over the weeks I couldn’t recall. This was also the day I learned my mom and mother in law can make friends anywhere. As we sat there, I remember them chatting with different people. One family, who’s baby was in the hospital and couldn’t leave yet. Another woman who told us her granddaughter also had Ulcerative Colitis and died very young-about 22 years old. The older woman, who’s grandaughter had passed, said her daughter only believed in the hoalistic way and that if her gradaughter had recieved treatment sooner things could have been different. It was this woman, who spoke to us, using gods voice, that changed how I would forever look at my treatment going forward.
I felt at peace just sitting outside, and after hearing the old woman’s story we all agreed that for me to live with this pain was unacceptable and too dangerous. To be outside of those white walls where I had been trapped for nearly a month with sickness after sickness and complications beyond anyone’s comprehension-including my own-it felt great to escape that day and just sit outside listen to the rain and talk. I want both my mother and mother in law to know that today…on Mother’s Day…I truly appreciate both of them and all they have done for Josh and I. It means the world to me to know I have such a great support system-thank you both from the bottom of my heart. I love you both so much!
As I checked into Pomerado Hospital on June 28, 2014 I had no idea what I was in for (and neither did my family for that matter). I checked into the Emergency Room after an entire day of running to the bathroom. I believe when I checked in I had gone to the bathroom approximately 12-15 times that day…and by that time all that was coming out was blood with immense pain. After the normal ER questions, blood pressure and blood draw I was admitted into the Hospital. Admittedly, I can’t recall every detail of my nearly two month Hospital stay-but I can recall most of it in bits and pieces.
After I was admitted we tried every drug possible (and by we I mean my GI doctor-Dr. Lee and I). One of the last drugs I tried was called 6-MP or Mercaptopurine which is used to treat leukemia and is known as a chemo pill. Ingesting this drug scared me more than anything, little did I know that taking Remicade would be what almost killed me.
I had my first Remicade infusion on July 7th and with little to no relief, my doctor assured me that after the second Remicade infusion is when most people start to feel better. So, slightly earlier than two weeks from the first Remicade infusion, on July 18th, I had my second Remicade Infusion. It was at this point that I think I started to blank out quite a bit. I do know that my Doctor’s colleague came in for morning rounds, as Dr. Lee was on Vacation that week, and when he yelled into the bathroom all I spoke was jiberish. He then looked at my husband and said, “What did she say…” and my husband responded with “I have no idea.” I have no recollection of this…but it was then that my husband knew something was wrong. At first, my husband was suspicious of a drug overdose…as I wasn’t making any sense and speaking in what he would refer to as “chipmunk” talk. I was speaking fast but making no sense. I would know where I was born, but not my birthdate. It was as if my mind was battling for reality. I remember my friend Kelsey visiting me, but only later on when I was conscious and talking would I ask my family, “Did she dye her hair blonde?” Everyone was impressed that even in my state of anaphylactic shock I could recall such events. I also recalled things that were untrue…I could have sworn I had something taken from me and put on a plane. Later I would realize that my peace of mind about the future was what would be taken.
I was diagnosed with TTP (Thrombotic Thrombocytopenic Purpura) by a kidney specialist approximately four days into the darkest time in my life-up to this point. For those of you who have no idea what TTP is-it’s an extremely rare blood disorder where the platelets form like spider webs and when red blood cells pass through it cuts them in half which caused small blood clots all throughout my body. As a result it looked as if I was having mini strokes (or so my mother would tell me later on). It took my bone marrow being affected, my liver and kidneys almost shutting down for someone to figure what was wrong. I almost died because TTP was not a listed side effect of the drug remicade.
It took a pic line in my neck and ten plateletpheresis treatments where everyday for three hours through the pic line all the blood was drained from my body spun in a machine to take out all the bad platelets and replaced with donor platelets. So the next time you donate blood, plasma, or platelets think of me-it takes a lot of people to help one person. And if you’ve ever donated…maybe you saved my life!