4/25/18-6/28/18 From the Beginning to my Near End

I’ve been told I’m easily one of the biggest miracles the ICU nurses of UCSD has ever seen. I had doctors come in my room often in awe of how well I was doing and how far I had come. They told my husband it was likely I’d be in ICU for months and be on oxygen (possibly) for the rest of my life-that was if I made it out of there at all. Let me back up to the reason I initially went into the hospital.

I went in on April 25, 2018 to have the reversal surgery of my ileostomy. I prepared myself the best I could for this surgery-both mentally and physically. I had gone through EMDR therapy for PTSD and was doing my best to wrap my head around what was to come. Little did I know, I had no idea what was coming. Having a lung collapse and having (3) lung surgeries in addition to an intestinal reconfiguration was not what I had ever envisioned myself going through. Several days after the takedown of my ileostomy I began to get very sick and was vomiting almost uncontrollably. My doctors thought that I should have a dilation, which could help reduce stricturing-and could be the culperate for why things weren’t flowing as freely as they could have been-causing a backup in my stomach-hence the vomiting. I remember very little details of what happened next.

During the dilation procedure I aspirated under anesthesia and the acid had gotten into my lungs. I had gone through this same dilation procedure several times over the last 2-3 years without any major complications.  It just so happened that this last one, would almost cost me my life. My body reacts unlike anyone’s and tends to overreact- and that it did. I remember looking at my Doctor, post procedure, and asking her if I was going to die-she told me no, but I saw the worry and tears in her eyes as she explained what had just transpired under anesthesia. I held onto that “no” and eventually slipped into a state of disarray.  All I remember was a woman named Donna who held my hand as I nearly slipped away and she said “I’m going to stay with you, my name is Donna and I’m not going to leave you.” It was her words of comfort in a moment of panic when all of a sudden I had more than 20 doctors and nurses piling in front of my face-and in that moment I knew I was in trouble.  I slipped away and woke up in June-just a few days before my 32nd Birthday.

I don’t remember a lot, but what I do remember isn’t great and some of it isn’t even what actually happened. I had strong hallucinations from the harsh drugs that put me into a paralytic state. My body had been at rest, unbeknownst to me, for more than a month and I woke up unable to speak and barely able to move. I had a tracheotomy, which left me with a temporary trach-and I thank God everyday it was only temporary.  I didn’t realize how much I liked to talk until I couldn’t. Having the tracheotomy was a humbling experience and I gained a new outlook on how lucky I am to be able to speak. I felt like the little mermaid when she lost her voice. I had to spell out words in sign language using the little bit of the alphabet I could remember with nurses and when that failed I had a piece of paper with the alphabet pre-written out and I had to spell out what I needed or wanted from the nurses. Admittedly, this was challenging at times given how much the brain relies on autocorrect when we spell nowadays!

The day they put the purple speaking valve on the trach, I remember saying “hello” and being overjoyed just to speak. For the first time the nurses, who had learned to read my lips, heard my voice and they were all overjoyed with my progress. I remember asking the nurses not to tell my husband because I wanted to surprise him that night-I’ll never forget the look on his face when I said “hey, Babe.”

The nurses would continue to filter in (even if they weren’t my own that day-just to say hello and I continued surprising them with my ability to converse with them). Some of these nurses had never heard my voice but had come to know me so well and when I spoke their faces lit up. I was told, that in the ICU, there’s a lot of death and sadness looming in the halls-so when a miracle happens it’s what brings back hope and joy to their profession.

When I awoke, I learned a lot about what had transpired over the last month.  I had, in addition to being put on paralytics, been utilizing an ECMO machine.  All I understood at the time was that my lungs weren’t well enough to provide me with oxygen.  Therefore, I was put on ECMO in order to give my lungs a break so they could heal.  I was given very little details while in the hospital, none of which made sense at the time.  All I could focus on was my inability to communicate-which now makes perfect sense.  I have a degree in communications.  Communicating is essential to me, and all I knew was that I needed to be able to advocate for myself.  So for several weeks, it was the goal to size down the trach so that eventually I could regain my voice.  I write, even now, as communicating my story is important to me.  I feel extremely greatful for the opportunity to be able to share my story so that others don’t feel so alone.  Having IBD isn’t easy, and because having IBD is an autoimmne disease, sometimes that alone takes on a life of it’s own causing separate complications within the body.

Never in my life would I have guessed I’d need to use sign language as a way to advocate for myself. I commend the nurses for their patience with me, not only did I have to spell out words but they had to remember and put together the letters I was desperately trying to remember how to sign.

My progress was “slow and steady” a nurse would write in “my ICU stay book”. This book was one of the best things I had to help me understand what I had been through. This book, was essentially a written diary the nurses kept on me-letting me know about my progress. It was amazing to read all the positive vibes from my nurses. I’ve said it before, nurses are special people, but mine were exceptional. I became the talk of ICU quickly and when I awoke I had many nurses and doctors telling me how lucky I was to be alive. With the positive vibes came a few negative. One night, after a few weeks in ICU, I had a trach nurse (I’ll never forget) come onto the night shift and her bedside manner was less than helpful in my already confused head. She said, “I was happy to see you made it, I thought you were a goner.” She was not young, she was likely a mother herself…but to be told in such a blunt manner was extremely hard and I called her out on it several minutes later. I explained to her (through tears of frustration), that I’m sure she wasn’t trying to be harsh but it came across that way. She apologized profusely and I truly hope the next tracheotomy patient she assists will benefit from my discomfort with that nurse-as letting her know what not to say to a patient was a critical lesson that night.

While I only had a handful of Doctors and nurses who didn’t understand me, I had so many that did. When I awoke I was told repeatedly “it was good to see my eyes and to see me awake”-I was treated like a miracle on the ICU floor, because I was. To see the pure joy on their faces regarding my recovery was rewarding-but I feel I have a lot to live up to now.

I had a PT girl who’s spirit I will never forget-her name was Amy. She pushed me hard everyday-she would bust into my room ready to get me moving with so much energy and I couldn’t help but like her! During my last session with her, I remember going outside to the 4th floor terrace …with my unwashed hair and feeling defeated-she had me “doing squats”. I’m using quotes there because it was really me just standing and falling (without cushion to my bum I might add) onto my butt which landed on the hard cement seating that was built into the terrace. I cried that day, and she hugged me and said I know you’re going to get there and walk again and before you know it you’ll be running. I sometimes hear her cheerful voice inside my head, and I hope she realizes what a vital role she played in my recovery and will continue to be the cheerleader that many patients so desperately need.

Writing is hard, walking is hard, being sick is hard-but knowing I had a team of cheerleaders made it worth it. Many people don’t know, but I so badly wanted to sign a DNR prior to this last hospital admission. I never wanted to have to fight so hard for my life again, but I did-which can only be a true testament to my character. I am a fighter, I’m an IBD warrior, I’m a wife, I’m a mom to fur pups, I’m a daughter, granddaughter, a sister, and a friend to many. I’m all of these things still because of something I didn’t sign. I let the fighter in me lead, and knew in the end-when the end is-isn’t up to me. It’s only my job to keep fighting, and spread awareness of all that I’ve learned from this illness.

There’s a lot to my story, and I continue to learn about things that I didn’t even know happened. I have always said some scars tell a story, but mine tell a novel. I’ve never been ashamed of my scars, I’m actually really proud of them. It’s so much a part of my own history.  I have to say going into surgery on the 25th of April I was prepared for my ileostomy scar. I had seen many pictures from other brave jpouchers-but the scar that has left an even bigger impression on me is the Trach scar on my neck. I look at it everyday, multiple times a day-and remember the struggle. Initially, I wanted to hide having the trach, from anyone that I could. The first person to see me with it (outside of the hospital setting of course) was my little brother-I’m convinced I scared the shit out of him. His big sister was weak and broken-and without a doubt for nearly all of his life I’ve wanted to maintain the facade of being secure and strong, and it’s only now that I realize by me showing him myself at my most vulnerable time was indeed showing him my strength as an IBD warrior and as his big sister. He has seen me at my worst, and knows now (I hope) there’s always a light at the end of a tunnel if you just keep going…

I had several blood transfusions as a result of my lung bleeding which eventually led them to removing a piece of my lung. I’ve said it before, if ever you can donate anything and you’re healthy enough to do it–it’s one of the most selfless acts. People, like myself, rely on blood, platelets, and even stool. Yup-that’s right, even stool. I have needed platelets, blood and I have underwent a fecal transplant over the course of dealing with IBD. I’m thankful everyday that there are selfless people in this world who donate all sorts of things that assist people like me.

At this point, I’ve had more surgeries than I can recall and I can count the number of scars on two hands.  When people ask me how I am my response will always be “even my worst day is a better day without the bag”–and that response will never change.  Having the bag weighed me down in a way most people will never understand.  The skin irritation and constant worry of springing a leak was a four year long distraction from everything I ever did.

I have tried to be transparent through the diagnosis of ulcerative colitis, having my ileostomy and through the horrific ordeal of bringing me back to a state of normal. It’s sometimes hard and overwhelming to talk about-but I never wanted anyone to guess what’s wrong-which is why I put myself out there and do my best to explain. I want to be the example of strong to anyone who needs some inspiration and the friend to anyone who needs guidance.

I continue to push through and celebrate the little milestones as they come. I appreciate the normalities of a day and know the struggles I’ve overcome are extraordinary. I try not to take myself too seriously and understand how lucky I am to have survived. Mentally it’s a struggle at times, but I continue to work through them in therapy each week and learning this new normal will only make me stronger. They say God doesn’t give you more than you can handle.

“Some things just happen and we don’t get to know why…”

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