This post contains graphic imagery on being in a coma and open heart surgery, which may be uncomfortable for those on the transplant wait list.
I was in a medically induced coma for four days.
This was not planned and my husband was told that each day I was in a coma could result in possible cognitive impairment, even long term brain damage. He was terrified that when I woke up that I may not be the same person.
I knew the risk of a coma, while rare it was a possibility when going into a heart transplant. Transplant is not optional and likewise, the risks just go hand-in-hand. Don’t get me wrong. I had a healthy fear, but mostly I was not terrified because the alternative was death.
I do not fear death. I fear pain.
My only request if I was going to be in a coma was that my family play Tori Amos music on repeat, much to their annoyance. Yep, I just wanted good tunes if I was going to be in a coma. Perhaps Tori’s emotive music would seep into my unconscious and bring good dreams. I didn’t hear the music during this time, but her music does bring me good vibes when not in a coma.
I needed time for my body to adjust and reduce swelling after the surgery, so the decision was made to induce a coma. I went straight from the OR to ICU and put on life support.
My chest cavity was swollen and the surgeons had to wait to close and stitch my sternum together after the successful heart transplant. On an x-ray you can see the distinct “Crazy 8” stitches of my heart transplant, those are the internal stitches.
No one could predict I would be in a coma for four days.
The part the surgeons had to wait to address was my external stitches and staples that would fused my chest back together. So they packed my cracked sternum up with special packing materials, probably the same stuff the military uses on the combat field.
During the four days of waiting for my chest swelling to reduce, I was in the ICU and on a ventilator, also known as a life support. I required constant care from two nurses and my husband was not allowed in my room. He got five minutes with me, here and there but otherwise it was a strict “keep out policy.”
One of the nurses, later told me, that my husband stood outside my door for four days and that he had never seen a family member so devoted as my husband, Adam.
This memory brings tears to my eyes and reminds me how grateful I am to my husband for his care, support and love.
The nurses were attending to my every need, putting drops in my eyes to keep them moist because my eyes were open and not blinking for four days. I have seen pictures of myself, something I had asked my husband to do if I ended up in coma, and they are disturbing. I do not look like myself.
My eyes are expansive and wide open, pupils large and staring blankly. It’s like my eyes are the largest feature on my face, which is not the case when I am alert. You can tell that I am checked out, I saw nothing through my eyes. No light, no shadows.
My hair is in a strange pony tail on the top of my head, probably to keep it out of the way of the tubes and wires everywhere. I look like a strange cupid doll dressed in a bright yellow hospital issue gown. The yellow means that I am “fall precaution,” which is ironic since I am in a coma and can’t move.
It upset my husband to take these pictures, he felt they were an invasion into a time and place he did not want to remember. But he acquiesced to my request and I am grateful to have a reliable source to create my memories.
For some reason, I enjoy taking pictures of my battle scars, track marks and pints of blood collected. It’s probably because during my first battle with cancer, I would not allow any pictures to be taken of me because I was an angsty bald teenager and as a result I have no documentation of that time in my life and it disappoints me. Memories can fade and I want to know what the event was actually like, not my romanticized version.
ON WAKING UP FROM MY COMA…
When I eventually woke up, I felt like I was opening my eyes from being underwater. My vision came in slowly, seconds probably and while I had the false sensation of blinking my eyes open, they were already open but without vision. I had the sensation of waking up and knew instantly that I must be waking up from my heart transplant surgery. I had no concept that 4 days had passed, yet I knew I had been “asleep” for away least a nights rest.
When I was on life support, I had plastic tubing in my mouth, down my throat and the tube was held in place by white medical tape. My hands were tied down so that I would not pull out my breathing tube, not that I could control my hands. I couldn’t talk for first 24 hours. I couldn’t even mouth my words because the vent was in the way. The only form of communication that I had was blinking and widening my eyes.
I was terrified that I could not communicate my basic needs. Hot tears streamed down my face, as I felt “locked in.” I can only imagine the terror patients with ALS experience when they can no longer talk, but are fully cognitively functioning.
I wanted desperately to shout, “I am in pain!” I just kept thinking the word “pain.”
My body ached everywhere from being so swollen. My hands and feet were the area of most discomfort and I couldn’t move-I had no control or strength. I couldn’t wipe my tears away or touch my nose.
I wanted them to ask me “yes” or “no” questions where I could blink my answers. You know like in the movies, it always seemed like a successful form of communication, but this type of questioning never occurred to my veteran nurse. Instead my husband thought I was calling him an “idiot,” which I was not, but I was frustrated. I was anxious and restless. This went on for hours.
During this time, I talked to myself and told myself to remain calm, that this was only temporary. I said mantras in my head, anything to soothe my thoughts:
“This is only temporary.”
“Jennifer you’re ok.”
I had to repeatedly convince myself to calm down and not panic during the first 24 hours; the time until I could communicate passed by slowly and uncomfortably.
When I was still in the coma, I was told that my Mother would stand at my door in the ICU and say “hi, Jenny…it’s Mum, I love you!” She too was not allowed into the room to limit germs and people. I was told that the sound of my Mum’s voice caused me to have a noticeable physical reaction where I would move my one leg up and down excitedly. I have no memories of this, but even as I type this 2 years later, I can hear her words of love and support in my head.
My Mum died from ovarian cancer 16 months after my transplant. It brings me comfort that she was able to see that I had a successful heart transplant. 🕊
ON EMERGING FROM A COMA…
When the breathing tube was eventually pulled, my mouth would just fall open, hanging there and I needed a nurse or loved one to wipe away my drool.
My doctors were nervous to pull the breathing tube for fear that I would revert and not be able to breath on my own. They did short tests, turning off the vent and seeing how well I could breath on my own. It took a few tests before they felt confident enough to pull the tube. When the vent tube was pulled it was fast and it didn’t hurt. It was more like holding my breath or breathing hard after a hard sprint, except I didn’t run anywhere.
Soon I began to notice my lips. I could feel them again and my dry mouth would soon become my new fixation.
My lips were scaly and puckered like I was dehydrated and severely chapped, like wind burned. I know that by protocol that they put vasoline on my lips, but it wasn’t enough.
I had great relief when the pharmacy delivered Carmex. That jar of Carmex was like liquid gold to me and I would ask for it repeatedly, feeling great satisfaction when my lips were soothed. It is things like my need for lip balm that suggest I would never do well on the TV show Survivor.
My mouth and lips were a huge focus when I emerged from my coma. Huge.
It was a source of intense discomfort and dryness. I begged for water, which I was not allowed to have for quite some time, for fear that I would aspirate, choke or get pneumonia. So if I could not moisten my mouth then I focused on my lips, constantly asking for lip balm. Eventually, I would be allowed to suck on ice, then I would graduate to a moistened pink, square sponge on a stick like a lolly pop, which for some reason I called a “boppy.”
I did not smell or taste anything when I was in a coma. I was not hungry, even though I had no food in me during those four, by then five days. I did have a gastrointestinal tube place (AKA G-tube) to provide me with nourishment, so I was fine. I had no physical sensation of appetite for days.
When they eventually pulled the feeding tube, I felt a burn and then a tickle in my nose that made me want to sneeze, but otherwise it was painless. I think my first food was thickened applesauce.
MY THOUGHTS, DREAMS & MEMORIES DURING MY COMA…
I would characterize being in a coma like sleeping. Sometimes I was in a deep, dreamless sleep. Other times I was in a lighter sleep where I had dreams. Then on one occasion I could hear my loved one talking to me.
I recall one long epic dream. I was in a very bright corn field, like a sunflower field and I could walk on top of the poppies. I could cover expansive parts of the world by walking on top of the flowers and fields. At one point, the sunflower had an animated face, like something out of the Wizard of Oz. If this dream sounds like I was on drugs, its because I was on drugs while in my coma. I don’t recall the purpose or plot of my dream, just that it was in technicolor and involved. I know this because when I emerged from my coma, I had the sensation like I had had a very good, drugged induced sleep.
My strongest memory of my time in a coma was hearing my brother-in-law talk to me. He was speaking to me on my left side. I could visualize him sitting in a chair, again on my left side. In my mind’s eye, I felt I could see him but of course, I could not see anything. He sounded solemn and serious, saying that the family loved me and had been there the whole time.
I had several thoughts during this brief interaction. I recall thinking, “Oh no, this must be serious if my brother-in-law flew in from New England.” I figured that I made it through the heart transplant and I knew that I was in some sort of state, like I was sleeping or just waking up from sleeping, but I don’t remember thinking “I am in a coma.”
Somehow I didn’t think through the entire experience, I just took what was happening at face value. I remember being comforted by his words and presence, I found him calming and it made me feel peaceful. I knew I was alright and then I must have slipped off to sleep because I don’t remember him ending the conversation or saying goodbye.
My family tells me that my brother-in-law visited me a few times in the ICU and that the last conversation he had with me was at least 24 hours prior to waking up from the coma. He flew back to New England the next day.
I don’t recall anyone else talking to me, nor did I hear the music my family played for me. But I do recall the feelings of comfort and love from the words I did hear. They say that hearing is the last function to go when your dying. This is why when my Mum was actively dying, I talked to her, telling her to “let go” just as she took her last breath on this Earth.