When I first heard that I might need a transplant, I was in disbelief. It was a trip-the-light-fantastic thought… in my mind other people, sick people, dying people got transplants, not me. I pushed transplant out of my mind and continued on with life. I don’t even remember when or where I was, when I was told that a heart transplant was the likely course of action but it was a couple of years prior to getting on the list.
I do recall a milestone in my journey that caused me a few tearful and at times sobbing moments, and that is when I found out that I needed a pacemaker. I could put a number on my heart functioning and it wasn’t good. The pacemaker meant that my Ejection Fraction was at or below 35%. I had never slipped below 40% before and it was an eye opening moment. I couldn’t escape getting a pacemaker, it was a surgery and a tangible event that would not be ignored. Denial time was over, I was getting closer to death.
How close to death, I don’t know, but I did know that I was tired, I felt like I was walking through mud. During this time, I was working full-time and I took a medical leave to have the pacemaker surgery. The recovery from pacemaker surgery does not require the 12 weeks that FMLA offers you, rather it was more about my anxiety and getting my feet under me-letting the idea of a transplant sink in.
It was 2009, I was 33 years old and my heart was failing me, it was time to take stock. How was I going to live? Was I going back to work? I recall telling my boss that “my head wasn’t in the game” and I couldn’t concentrate on work, at the time I was providing outpatient counseling to children and adolescents. They needed me present and emotionally available and I was just simply none of those things.
I eventually went back to work in the fall of 2009. I was able to stay working until January of 2012. Working became increasingly difficult, as I was so tired. I took every ADA accommodation I could to make job sedentary, but it just wasn’t enough. On a few occasions, between clients I would turn off my office lights and take a nap on the floor, under my desk. The light from my computer screen would annoy me, but when I turned it off I was in total darkness because I didn’t have any windows.
My light was going out. My looks were deceiving, as you can see from this spring of 2009 picture of me feeding the ducks. From the outside, I appeared healthy but on the inside my heart was failing. I struggled with a hidden disability for years and I still do as a heart transplant recipient. I had to stop working in 2012. By 2015, I was in trouble. I was having shortness of breath and using an electric shopping cart on the rare occasion I could muster the energy for a trip to the store. By the fall of 2015, I was being pushed in a wheelchair for most outings outside the house because I lacked the life force energy to walk. My light went out slowly, over the course of months and prior to that a few years.
For a long time all I could do was go to work. I never went out on “school nights,” because I needed all of my energy to go to work. I didn’t run by the grocery store after work, because that too required too much energy. I would take naps, sleep and rest and still wasn’t enough to wake me up. Congestive Heart Failure was knocking on my door.
It would be a long, arduous path to a heart transplant and I was on my way. Eventually I would be hospitalized many times between 2011 and 2015 for fluid overload, a symptom of heart failure. By the time I was told I needed a heart transplant I was ready or at least I was not terrified of the idea of transplant. Transplant is a journey, despite what you see on TV it does not happen overnight.
“You have such a good attitude,” “You’re so positive” and “I can’t believe you’re so positive” are comments I hear often from medical professionals and people who know of my experience with two bouts of cancer and a heart transplant. Sometimes I feel like a broken human being and in those moments I cry, I lament “why me?” I can really dig in to morose thoughts and negative statements. Cue the sad Tori Amos music.
Being positive takes work and it’s like a mental diet-it takes practice, diligence and its not easy. I have to jolt myself out of the negative moments. I have to work on “coming around,” drying the tears and seeking out the positive aspects of my life, or the fact that I am even alive.
Most people are inspired by listening to motivational speakers or mindful people. I remember being held captive by seeing Maya Angelou storytelling and reading her poetry. Spellbound. Unfortunately, I wish it was as easy as seeing or hearing a vibrant speaker and having their good juju rub off on me.
Instead, I go to therapy and practice achieving mindfulness and a positive outlook. I think of my various coping strategies as “tools,” and I need a variety of tools in my tool belt. Perhaps practicing the art of patience is my most valuable and likewise, difficult skill to maintain in my quest to have a positive outlook.
Prior to transplant, I was fortunate enough to lose some weight, I reveled in the attention and questions, “how did you do it?” Leaning in for a conspiratorial whisper, “you want to know the secret?” Seeking the panacea weight loss cure, I would disappoint my listener by saying, “there is no secret…it’s diet and exercise and it sucks.” It takes time, effort and every meal, every bite you don’t put something into your mouth is a mindful choice. I need to listen to my former self, because I currently have 50lbs to lose (thank you post-transplant steroids) and this is a good reminder to myself.
Mindfulness. That’s what it’s all about. Being mindful of your body, mind and spirit is how I’ve overcome such adversity.I’m like a Jedi trained in mindfulness. Since my first bout with cancer at 15 years old, I’ve been training in guided imagery and mindfulness. Goodness, I even obtained a master’s degree in clinical social work, so that professionally I could teach others coping skills.
I like to listen to YouTube videos and the app CALM, which has free guided imagery and audio stories to help you sleep. Interesting how close the word mediation and medication are…
Imagery of the lake and the beach sustain me. I paint elaborate scenes in my mind, pictures and sounds that help me endure painful procedures.
I hate bone marrow and cardiac biopsies, both of which you are awake for during the entire procedure. The bone marrow aspiration involves a drill into your back to draw out solid bone marrow. The nurse said that once you numb the skin the bone marrow draw is not painful. I absolutely disagree and to the nurse who told me is wasn’t painful can suck it! I had to do breathing exercises and visualize being on the beach to get through this terrible event.
Same with cardiac biopsies, which are uncomfortable and anxiety provoking because they take a tube and go into your neck (or groin) and take a sample of your heart tissue. During these procedures, the cardiologist will play Pandora music and ask for my favorite band (I like Red Hot Chili Peppers during cardiac biopsies). I’m also pretending to be on the lake with deep blue water and emerald green trees.
Being positive takes works. Therapy has helped me to develop these skills and when I can’t do them on my own, video and audio stories carry me through to the other side. A good sense of humor and ability to laugh at death has also helped me overcome difficult times.
A now I leave you with lyrics from the Red Hot Chili Peppers for no particular reason other than I like the band. 🙂
“I heard your voice through a photograph, I thought it up and brought up the past, Once you know you can never go back, I gotta take it on the other side” -Otherside by Red Hot Chili Peppers
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 coma, while rare it was a possibility when going into 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 a quick 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 music during this time, but her music does bring me good vibes when not in a coma.
The coma was the result of the rare complication of swelling. 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 the distinct “Crazy 8” stitches of a heart transplant, those are the internal stitches. 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 know 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 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 during the transplant work up. 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.
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. When I was vented, 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. I felt “locked in,” and I can only imagine the terror patients with ALS experience when they can no longer talk but are fully cognitively functioning. I couldn’t tell them that I was in pain, that my body ached everywhere. I got so frustrated that I cried in vain. 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.
During this time, I talked to myself and told myself to remain calm, that this was only temporary. 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 when my Mum would call to me I would have a physical reaction where I would move my 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.
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 uncomfortable but it didn’t hurt. It was more like holding my breath or breathing hard after a hard sprint, except I didn’t run anywhere.
My lips were scaly and puckered like I was dehydrated and I had significant discomfort from them being 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. It was a source of 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 had a gastrointestinal tube place (AKA G-tube) to provide me with nourishment. I had no physical sensation of hunger nor did I feel full, but I was adequately nourished during this time. 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.
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.”
I am often asked, “where we’re you when you got the call for transplant?”
For months I was vigilant, perhaps hyper-vigilant with answering my phone. Nothing would prevent me from picking up an “unknown” call, not even the sacred space of the movie theater was going to cause me to miss the call for a heart transplant! When you get the call, you are expected to drop everything and go straight to the transplant hospital.
It was 3:45pm on a Tuesday and I was lying down at my parent’s house, just getting ready to take a nap. I often joked that napping was my new pastime that I shared with my Mum who was going through cancer treatment. Driving the 17 minutes from my sister’s house over to my parent’s house earlier in the day made me tired, but then again everything made me tired. My Mum was in her hospital bed and I lay a few feet away in her king-size bed, the TV volume was loud with her favorite true crime tv show. I saw the unknown number pop up on my cell and thought jokingly, “maybe this is the call,” and I couldn’t believe it when it was The Call!
My transplant doctor, Dr. Morlend, on the other end was excited to tell me that they found a heart for me. The call was short and to the point, both of us were excited and talking fast. I remember telling myself to go “into business mode,” because I had to be calm if I was going to get to the hospital. I was excited, I didn’t quite have the words. I had imagined this is what it was like when a pregnant women goes into labor. I had a bag packed (with all the wrong stuff) and was mentally just waiting.
My first call was to my husband and all I said was “I got the call.” We had an agreement that we answered all calls and nothing went to voicemail. Since then I never answer my calls, much to my family’s annoyance. My husband was stunned into silence, and literally dropped everything. He was in a cold, noisy server room holding computer equipment in his hands. He later told me, he got off the call and turned to his co-worker and just put the equipment in his hands and said he had to leave, his wife was getting a heart transplant. He then drove three hours at over 100mph.
My drive to the hospital was much slower with my Dad at the wheel and my Mum in the front seat. I felt like a teenager again in the backseat going to the hospital with both of my parents. This was not the plan, but it was working.
I had once asked Bob, my brother-in-law, who works from home, that if I should get the call would he drive me. Since I lived with him and my sister, it seemed likely that one of them would be driving me (while the other stayed home with my nephew). Bob ever the jokester, told me that I should really consider Uber to drive me to my heart transplant, since he might be on a conference call! Ha! I laughed for days about this one…I mean, could you imagine telling your Uber driver that you need them to take you to your heart transplant!
One night we were all sitting around watching American Idol, when Bob pulled up his Uber app and told me that at that very moment there were 8 nearby Uber’s that could take me to the Transplant hospital, if I needed them. And since it was for Transplant, he said he would spring and upgrade me to the Executive Uber. Bob is a funny guy (you’ll have to read my not-yet published blog post about the night I woke up from a coma, because its hysterical and of course involves Bob). I digress, back to getting the call about transplant.
My Dad continued driving his usual speed: slow. It was rush hour traffic and this just made the derive slower-it was agonizing. When I asked him to speed up, he was stressed and asked me if I wanted him to drive on the shoulder and cut people off, as if this would be impossible, to which I told him “YES!!” Next thing you know, he was driving like Mario Andretti! We arrived safely and right at 4:59pm. The check-in was smooth and uneventful; this was just another day for the ER staff and admissions. However, it was an extraordinary day for me and my family.
I would characterize getting the call for transplant an extraordinary life experience. But if you ask me what I was doing at that moment, I would tell you that I was experiencing an ordinary life moment: nodding off for a nap while watching TV with my family, but isn’t that what it is all about? Being in the moment, being ordinary.
At 15 years old, I had bone cancer and one of the chemo drugs gave me heart failure. At 39 years old, I had a heart transplant. 4 months after my transplant, I discovered I had breast cancer. I had a double mastectomy, then weeks later and just 2 days before my 41st birthday, my Mum died after losing her battle with Ovarian cancer.
The last 2 years of my life have been almost intolerable.
People often compliment me on my “positive attitude,” which sometimes I am positive and other times, I want to tell them I am not fucking positive and that I am fucking faking it. Thank you and have a nice day.
Here is a more detail about my journey with a heart transplant and cancer. I’m always on a journey.
Shortly before I turned 15 years-old, I was diagnosed with bone cancer. Specifically Askin’s Sarcoma, a rare and aggressive soft tumor on my chest wall, near my right arm and shoulder. It’s genetically inherited and shares features with Ewing’s Sarcoma, which is often described as the garden variety childhood cancer, typically discovered during puberty when hormones activate cell growth, as was the case for me.
I had chemotherapy for 13 months, radiation treatment and several surgeries. One of the chemo drugs, Adriamycin (generically called, doxorubicin), gave me a heart condition. This drug is often called the “Red Devil,” because it is red in color and it causes heart conditions. Knowing I was at risk, I had routine echocardiograms and 8 years post treatment, I started showing signs of heart trouble.
This is called a “late-effect,” and I would say that most of my medical issues as an adult are late-effects from chemo and radiation. In general I would say that even with some heart problems noted in my 20’s, I was in overall fair to good health. I could never climb a mountain or run a marathon, mostly because exercise was not a part of my daily routine and in general, I just did not have the stamina.
Starting in my 30’s, my heart functioning declined and I needed a pacemaker, I also was hospitalized many times with congestive heart failure, until finally I needed a heart transplant. At 39 years old, I received a heart transplant.
Three months post-transplant, I discovered that I had breast cancer (another late effect) and that my treatment would be a bilateral mastectomy. I had to wait over 6 months for this surgery because the transplant team felt I was too vulnerable and were concerned about my survival. If you live the first year after a transplant, then your chances of living five years increase. The first year after transplant I was fragile, like being a newborn baby.
So I had to wait until I was at least one-year post heart transplant surgery for the mastectomy. I refer to this time as “ripping off the slowest band-aid,” as I cried and mourned the loss of my breast longer than one should tolerate.
Then just within the first few weeks, as I recovered from my mastectomy, my Mum died of Ovarian cancer.
The last 2 years of my life have been almost intolerable at times, filled with physical pain, aching loss and total lack of control. I would also like to think that during this time, that Humor has been a helpful weapon in my arsenal.
I can laugh during the most darkest or solemn moments. Like the time, my family all had terrible gas during midnight mass when the church softly sang Silent Night. It was not silent in my aisle, as my family farted and suppressed laughter. I have some funny memories.
My beloved grandmother whom we called “G-Mum,” was pushing me in my wheelchair when we entered the elevator at the same time as Kim, one of my pediatric clinic nurses. She was dressed from head-to-toe in bright yellow scrubs, with yes…wait for it, matching yellow Keds and hair ribbon (it was 1991 after all).
My G-Mum said, “why Kim, you look like a ray of sunshine dressed in yellow.” I snickered and was proud of myself for waiting until Kim exited the elevator, to say to my gentle, kind grandmother, “G-mum she looks like a fucking banana.”
I laugh at this memory because, even though I was a sassy teenager with an impulsive mouth, it’s something I might say today too. It was the first time and if I wanted to idealize my memories, I might say it was the only time, my grandmother ever heard me swear, but I would be lying. When I was 15 years old, my favorite word was “fuck.” I said it to provoke, cajole and irritate, especially in moments of physical pain and when I could not control a situation.
I had Askin’s Sarcoma, a form of bone cancer in the Ewing’s Sarcoma family. I was powerless over the drugs flowing into my body and likewise of the vomit spewing out. So if there was one thing I could control it was my language. For a teenager to say to their oncology team, “fuck, fuck, fuck…fuck this, fuck you…” was sometimes all I could do.
It was very disrespectful, and sure I knew this at the time, but I had no remorse. I was barely holding on. There were times I wanted to die. I would beg to be sedated, but that required a shot or to drink odious medication that, of course, I often refused. It was a no-win situation, that after hours of stalemate would end up with a physical confrontation. The only reason I did not pull my IV out of my arm was that I had a plastic port under my skin that was used for harsh chemotherapy drugs; a normal IV would be eaten up by the corrosive chemo drugs. The needle that they used to put into the port-a-cath was a curved, jagged hook. It looked like a fishing hook and terrified me. I found it painful to have my port accessed, some nurses told me it was not painful, but they had no idea.
I would later learn that I was allergic to pork based Heparin, which is what was used to flush out the port-a-cath before and after treatment. I would jump off the bed and scream in pain at the burning sensation, it felt like a dagger was being plunged into my ribs. On many occasions, nurses and technicians had to physically pin me down with force to access my port-a-cath and start my chemo treatment, which I routinely refused.
The doctor’s told me that if I did not do chemotherapy treatment that they would have to call Children’s Protective Services. My parents panicked, they were not negligent and they supported my cancer treatment, but they could not control a 15 year-old that weighed 150 lbs and was 5’6” in height. In true rebellious fashion, I told the doctor’s to “fuck off,” and if they thought a Judge could get me to submit to treatment they were wildly mistaken. Oh, it was quite the scene.
Cue my Mum crying, pleading with me to do my Chemo. Doctor’s impatiently waiting. Nurses ready to jump in and me ready for a fucking battle. I would kick, spit and thrash my body, curling into the fetal position, so that the nurse could not start the IV. I’m not proud, nor am I bragging rather this was just the reality of my situation.
On one occasion, I decide to run away from the hospital and drive home. After all I was 15 and I had my learner’s permit and been out to drive for total of a handful of hours, so Dallas highways were going to be piece of cake. I did not really think my plan entirely through, all I planned was to get to the car and to try drive away. My plan had no more elaboration that just get the hell away from the Children’s Hospital.
It was July in Texas and it was at least 99 degrees out. Hot. Too hot for a cancer patient to steal down to the parking garage, use the keypad to get into the car and get quickly discovered by my parents. I then began to irrationally scream, sob and attempt to manipulate my parent’s to give me the keys. The standoff lasted for at least 45 minutes to an hour, at this point Dr. Kamen, nurses and staff circled the car and attempted to talk me down in the parking garage. I was sweating profusely and refused to get out. The windows were electric, so they could not be lowered. There was no way that they were going to lower the windows and give me relief, which would have probably added hours to my full blown panic attack. Dr. Kamen told me that he was going to call the fire department, break windows if had to and/or wait until I passed out. I eventually opened the door and went inside, I was hot and knew that I was not going to win this battle-I had to do chemotherapy there was no other option.
I am not bragging and yet 25 years later, I still have no remorse for how I behaved as a teenager. There were other kids in treatment with me, that did not throw the temper tantrums that I did and I was aware of this and it still did not stop me. I had poor coping skills, even with therapy. Goodness, my therapist was even at my bedside doing relaxation techniques and with sedating drugs, I was still a terrible, rotten teen patient.
Years after treatment, I asked my oncologist the late Dr. Bart Kamen, “do you remember me?” He laughed, “remember you, I give a lecture on you: How to treat the difficult adolescent cancer patient.”
I would like to think that I have helped educate many doctors.