“there are moments that mark your life, moments when you realize nothing will ever be the same. And time is divided into two parts, before this and after this” -unknown
One year ago I had a surgery that became one of these dividing moments and began what has been the most difficult year of my life. I would like to say that I am writing this as a healthier (both physically and mentally) person, but this is not the case. The truth is that I spent a several hours Monday sitting in Roswell being told that they aren’t sure what is going on, that there are multiple possibilities but not one they can definitively diagnose. This appointment was the one in which I finally admitted to my doctor, my mother, and myself that I need help. That I wake up every single day and struggle with what I went through and how it has changed me. It is also the moment I decided to tell my story, in full, no details spared. So here we go…..
I have been living with chronic illnesses for about 12 years. Given this, I am no stranger to hospitals, needle pokes, surgery, and doctors who aren’t sure what’s going on with me. I do not consider myself to be an optimistic or hopeful patient as many of the things they have tried in the past have failed. But this time was different, with this doctor and this surgery I bought in and I bought in big. I truly believed that I would recover from this surgery and have my life back. Cue the roller coaster ride that has been the last 365 days of my life.
11-16-2016 I checked In to Roswell to have the surgery that would change my life. I woke up from surgery hopeful, my doctors were hopeful, my family and friends were hopeful. Three days in however I spent half of the night throwing up large quantities of bile and was delivered the first blow to my hopefulness. I was scared and disappointed, but clung to the thought that my doctors were right, my body just needed a few more days, I’d be home after the weekend. NOPE. Monday morning came and blow number two was delivered. Nothing was passing out of my stomach, the NG tube would have to stay in longer and I needed to start TPN (total parenteral nutrition) to provide my body with nutrition. A Picc line was placed in my left arm and I jumped on board, again believing that my doctors were right, that with time this would work itself out and I’d be on the way back to myself. I woke up every single day hopeful that that would be the day that my stomach would begin to empty. In the morning they would clamp my NG tube and I would will my body to figure itself out, mentally walk through my stomach emptying, I would try to use positive thinking to heal my body. By mid afternoon however, I was faced with the disappointment of needing to reattach the tube to suction to empty my stomach contents. It got to a point where everyone dreaded it, I couldn’t even look at the canister because I knew there was no improvement. The look on my nurses faces when they measured the output that came pouring out of me in under 5 minutes just added to my disappointment. I continued this daily roller coaster of hope and disappointment for 10 days, refusing to believe that it wouldn’t work. I woke up each day hopeful and went to bed each night dealing with crushing disappointment.
On day eleven, I begged my doctor to remove my NG tube; the sores in my nostril combined with a brutal ear infection made it incredibly painful, and he agreed. I was ecstatic, my nurses were ecstatic, my parents were ecstatic, for the first time in two weeks my face was tube and tape free. With this freedom came the wait to see if my stomach would empty. In the back of my head I was terrified, I was sitting there waiting for the other shoe to drop, but with each passing hour that little seed of hope grew. By hour 20 I thought well hey, maybe my body has finally figured itself out. Cue blow number three: horrible, violent, vommitting of all the contents that had built up in my stomach during those 20 hours. Followed by vommitting roughly every 8 hours after that culminating in the decision to have a G/J tube surgically inserted into my abdomen. The gastric port would be used to drain my stomach contents and the Jejunal port would be used to begin tube feelings. This plan was developed so that I could provide my body the time it needed to figure itself out from the comfort of my own home. It wasn’t what I planned for, but I was happy to finally have an exit from the hospital in my future.
The surgery went well, it hurt, but I started tube feeds the following day and was sprung from the hospital two days after that…18 days after I checked in. The first place I went was to see my boys, who wanted absolutely nothing to do with me. I couldn’t even bribe Atticus to come near me with Cheetos, and the cat loves nothing more than finger cheese. Because my care needs were still so extensive It was decided that I would stay with my mother. The first 24 hours were uneventful, I was uncomfortable and exhausted, but figured it would pass with time. It didn’t. My discomfort steadily increased over the next 12 hours while my energy steadily decreased. I lost my voice, I lost my hearing, all I could hear while I spent 12 hours dry heaving was the sound of my own racing heart. My mother Understandably terrified called and woke my brother at 4 am asking him what to do. Cue crushing disappointment number four: I was to go back to Roswell for a direct admission. I looked in the mirror before leaving my moms house and was terrified myself for the first time. I didn’t even recognize the person staring back at me, she was gaunt, had huge black eyes, and looked like someone who was dying. Which technically I was. I was so dehydrated my kidneys and liver function took a dive, the nurse blew out three veins before finding one she could use, and I couldn’t move without getting winded. I was terrified, but in too much pain and far to exhausted to care about the outcome. I remember thinking, well Jen, if this is how you go, so be it. Some fluids made all the difference. And my doctors were again hopeful, 24 hours of fluids and tweaks to my tube feeds and fluids and I was on my way back home.
I thought it would be easier this time around, we had a better plan of action, we had more information, we had new hope. The first 36 hours were uneventful, I was tired and uncomfortable, but felt OK. And then, the dry heaving started. I was up all night my abdomen painfully convulsing with each heave, my hearing slowly diminishing again along with my energy. Another phone call to my doctor, this time with him scheduling me to be seen that morning, me showing up hopeful I’d be leaving with advice. NOPE. Cue devastating blow number 5, I was severely dehydrated again, and it was time to discuss a second major surgery. My body couldn’t figure out the new connection, more than three weeks in nothing was draining out of my stomach and they weren’t sure it ever would. So, I was admitted and scheduled to have surgery the following afternoon.
I spent those 24 hours talking myself in to going through with this surgery, convincing myself that it would work and the results would be different this time. I actually almost refused to have it done. I was laying in the pre-op area when I was overcome with dread and fear. I wanted them to understand my terror, I wanted them to guarantee me that this would work, even though rational me knew that they couldn’t. I wanted nothing more than to tell them no, I wasn’t having more surgery. But, I didn’t, I had the surgery, and I woke up feeling great. My pain was controlled by interthecal morphine, my nausea was well controlled also, and I was in a good mood. Minus some serious itching, I was insanely hopeful that things were on the upswing. But, let’s be real, it’s me. A few hours later my nurse came in to give me Benadryl for the itching and couldn’t get my blood pressure to register on the machine so she took it manually, it was 80/50. I run low, my pressure is generally 90/60 so this low reading wasn’t a huge cause for concern, they decided to check it more frequently, limit my activity, and see what happens. What happened was that it steadily dropped over the next several hours before hitting an all time low of 64/28. This resulted in a rapid response being called, four attempts at a catheter placement and me being transferred down to the intermediate ICU where I spent the next 24 hours wired for sound and having countless medications pumped into my body. But the perk was, I could finally start a clear liquid diet. For me, that balanced out the awful of the catheter and the blood pressure cuff going off every 15 minutes. That night, after 27 very long days, I was finally able to drink, and it was the single greatest moment I had experienced in a long time. With that first sip the hope began to grow again, and it steadily grew as I was able to eat for the first time, and then enjoy a meal with my mother for the first time in a month. Three days later, I was released from Roswell, able to eat and drink on my own, and not needing the use my GJ-tube for anything other than intermittent draining.
I am fairly confident that my doctor was more excited than I was, a feeling that was confirmed by his PA who told me “I have never seen him this happy in the three years I have worked for him. He lost a lot of sleep trying to figure you out.”. And so with an ecstatic doctor, hugs from all of the nursing staff, and well wishes from other patients, I walked my way out of Roswell. Yes, I walked, it was an important step for me (both literally and figuratively). I was on the mend. I was going home to recover and regain the life I had slowly lost over the last 11 years.
I maintained that attitude for the first few weeks, as the pain decreased and I slowly advanced my diet. I felt good. And then, one day the nausea came back. I brushed it off as something I ate, until the following night when I threw up my entire dinner. My doctor thought it was a fluke, told me to keep a food journal and give my body time. So I did, and over the next few months I followed a similar pattern. I threw up less, but the pain and nausea returned on a daily basis. I was devastated. My doctor was too. He referred me to a specialist to have a muscle biopsy done, thinking perhaps my issues run much deeper than my digestive system. The results should be in within the next month.
In closing, I sit here 365 days after this journey began and still feel the unbearable devastation. A feeling complicated by my anger, confusion, sadness, and crippling anxiety. I cannot stand the smell of saline, I jerked my arm away so violently the last time I had an IV flushed with it that I ripped it right out. I do not sleep, I wake up every couple of hours, on the same schedule they used to check my vitals . I hate food, I eat because I have to, not because I want to or enjoy it. I am terrified daily, terrified that some simple choice is going to result in my life being forever altered again. I get violently angry when I hear people talking about deprivation diets or complaining about simple every day problems (I know it’s not fair, but its the truth). My blood pressure spikes when I walk into any doctors office or hospital. I can’t look in the mirror at my scars without reliving all of it. But my biggest struggle is where to direct all of these feelings. It’s not my doctors fault, he did his very best and honestly probably feels equal devastation that it didn’t work. It’s not my fault, it’s not my families fault. It’s my bodies fault, the body I was born with, the body I am powerless to change. So those feelings sit, and fester, and build, and eat away at me as I try to move forward with my life. This blog is step one at releasing them. It only took my 365 days to finally allow myself to start.
Chronically Sarcastic 