My story begins in 2011, when my then 13-year-old son first entered the children’s hospital for complications from ulcerative colitis. I felt helpless and powerless – a sensation that no parent comfortably bears. By the time my son’s intestinal health was on the path to recovery, eight months had passed, and a lifetime of irreversible consequences had been set in place. If a platform like IBDLyfe had existed, I believe some of my family’s circumstances would have come out differently. But my mantra has always been that timing is everything in life, and so here I am to tell you about my motivation for joining Lyfebulb on this journey.
My son had been diagnosed with UC at age 9, after several years of digestive issues, but his situation did not reach a life-threatening state until that December of 2011. At that time, he had been on corticosteroids for almost a year and wore the typical “moon” face and puffy weight gain of someone taking long-term steroidal medication. His recent onset of puberty growth had also been stunted. That December of 2011 would be the start of a decline that would lead him back into the hospital in April of 2012 for his colectomy and J-pouch reconstructive surgery (after becoming refractive to corticosteroids for 18 months), followed by his reversal surgery in July, which resulted in complications that led to a third surgery days later. In total, he spent 81 days in the hospital from December 2011 to July 2012.
During the time that I lived in the children’s hospital, so much of my life was put on hold. Of course, I could not leave my job at the college where I taught, nor could I stop raising my younger child, who was 11 years old at the time. But in my heart, I had abandoned the quality of my work outside that hospital. And other people suffered.
As the parent, one of my obligations was keeping family and friends informed of my son’s status. The only source I found at that time was a website whose name I will not mention here but which served then as a great source of sharing information and maintaining communication on an intimate scale with those who needed to know. However, what that site could not provide me were the resources I desperately craved:
I wanted to know what others in my parenting situation were doing or had done. I wanted to talk with those who understood what I was experiencing and feeling without being pitied. I wanted to know about predicted scientific outcomes for the surgery my son was undertaking. I wanted to journal about my experience in one organized place, to create a history of what was happening, lest my memory fail me when I needed to retrieve details for future medical visits with my son. I wanted parental advice on how to productively manage my professional and family life beyond the hospital. I wanted someone in the know to reassure me that my family and I would get through this intact, not just physically but also mentally. I wanted a community to call my own as the parent who was suffering in a different way from my son but suffering, nonetheless.
Here I am nine years later in 2021. My son lives a mostly healthy life with his J-pouch still appearing to do its job, but there are issues. Since he is 23 years old, I have had to step back and let him tackle those issues independently. Still, he reaches out to me as a caregiver and partner on this life journey of his, and still, I am often stumped as to what to say or recommend. Now I am the IBD Community Manager at Lyfebulb, and I am excited and finally optimistic, not only for my son’s potential access to information and resources but also for my own. I could not prevent the personal casualties of 2012, but now there is IBDLyfe. Hopefully I can help current and future caregivers along their IBD journey, encouraging their contribution to this community that has so much to offer … before it is too late. And that can only be better for the patients we love so dearly. I will conclude by repeating my mantra: Timing Is Everything in Life. And the time is now.
I chatted with Petter Björquist, one of the finalists for the CSL Behring Transplant Innovation Challenge, about his novel innovation for the future of transplantation.
His company, VERIGRAFT, is developing a method of creating personalized organs from donors without the requirement of immunosuppression, avoiding tissue rejection, infection, other side effects, and the high price tag associated with typical transplantation. Currently, they are developing non-vital organs, such as blood vessels and nerves. It is a two-step process that first takes off the donor’s cells – decellularization. This leaves an empty tube, which is the 3D structure scaffold of a blood vessel, for example. Yet without the cells, it has no identity. The second part of the process gives the organ an identity again – personalized with the new patient’s cells and other noncellular material. What’s unique about this innovation is that it only requires 50mL of blood to be incubated with the blood vessel scaffold for about a week. Then, the new organ is ready to be transplanted into the patient.
The inspiration behind this research
I asked Petter what his inspiration and driving force behind this research was and what propels the continued advancement.
Although he has no direct connection to transplant (He worked in the field of cell therapies for 25 years and saw many ill patients.), Petter sees the opportunities and the significant challenges for those suffering and in medical need. He often receives emails from patients who are hoping to be cured of their disease. They are his motivation.
“This is the best job in the world – it’s a scientific challenge and I’m also working towards solving patients problems,” Petter said. He added that being a finalist in the innovation challenge was an incredible experience, despite not actually winning.
As we know, performing research is very expensive. It requires hard work from many individuals, material consumption, clinical phase regulation, and administrative burdens, which all have to be financed. Although he didn’t win the Innovation challenge, the opportunity to share his innovation with a larger transplant-research community and potential investors helped him tremendously. He was also able to benchmark his innovation against others in the field who gave him useful input and asked questions that challenged and supported his business model. For him, coming in contact with the large ecosystem of the transplant community was truly a pleasure.
The Future of VERIGRAFT and personalized transplants
I asked Petter how he hopes this innovation will advance the health of patients, and his answer was quite simple: He hopes it will change people’s lives.
In the eight years since starting his research and company, it has already advanced so far – currently testing the solution in patients and examining a range of diseases to provide viable therapeutics. Petter hopes this innovation method ultimately changes the lives of people and allows them to have a much better quality of life. Those that are significantly hindered in their daily activities are in desperate need of health improvement. This innovation will hopefully provide just that.
To advance, Petter wants to see positive results from the current ongoing patient testing, before he expands the company, clinical trial sites, and business connections beyond Europe and into the US and Asia. The pipeline for the clinical testing and expansion for other indications will continue for the next three to five years. And, Petter’s long-term goals are to partner with a larger company that can help speed up development of these products and innovations and to expand this technology into larger vital organs. The current research is laying the groundwork for anticipated regulatory hurdles and securing financing from a positive track record with the current study outcomes.
The transplant field is filled with many heartbreaking and inspiring stories. Some linger deep in the soul and provoke action. This is the situation my friend, Denise, found herself in. Denise is a heart-transplant recipient herself who, in the middle of her own personal transplantation experience, started the HeartFelt Help Foundation.
Having been sick her entire life, the medical world wasn’t new to Denise. Prior to her lifesaving transplant, Denise had been shocked multiple times, had 3 ICD’s, and had more hospital stays than she could keep track of. Despite knowing her situation would almost certainly end in transplant or death, she believed a heart transplant was something that wouldn’t happen to her.
In December 2017, Denise was given the news by her doctor that without a transplant she wouldn’t survive more than a year. And so Denise went home and planned her funeral.
She selected music and spoke to her pastor. And, upon finalizing her last wishes, Denise endured a ventricular tachycardia attack.
Denise was rushed to the hospital via ambulance, and after multiple hospital transfers, she arrived at Stanford where she would wait until a heart became available.
Three weeks after being admitted, at 11:30 pm on January 30, 2018, a call came. There was a heart that had become available, and while it was high risk, it was Denise’s if she chose to accept. She called her husband on the phone and they discussed this offer, which she describes as feeling more like a real-estate transaction than being given a second chance at life.
The surgery took a long 12.5 hours. Due to internal bleeding, Denise had a follow-up surgery later that night, and again a week later. She faced infection, both types of rejection, and her post-transplant hospital stay ended up being far longer than the stay she faced prior to receiving her new heart.
In April of 2018, Denise returned home, and in July, she began rehab and the slow process of learning how to live again with a new heart. As she recovered, Denise made a vow to live as though her donor was watching. And in the midst of rehabilitation and her own complicated recovery, something shifted.
In a waiting room, she overheard a conversation where someone would be moved down the transplant list since they could not provide adequate funding for post-transplant housing. And, Denise, a firecracker of a woman still recovering from her own complicated surgery, knew deep down in her soul that this wasn’t ok, that no one should be denied lifesaving organs because of their financial or housing status, and that she would be the one to do something about it. Denise became the difference she longed to see in the world as she interrupted the meeting, in typical Denise fashion, and put her foot down, insisting she would find a way to gather the funds so this individual could have a safe place to stay post-transplant and not be moved down the list.
Enter the Heartfelt Help foundation. It began as an effort to raise money for one person’s post-transplant housing. But the lack of safe and affordable transplant housing close to major transplant centers doesn’t just affect one person, and once the fire had been ignited to make a difference, there was no way to simply turn it off. In 2020, Heartfelt Help Foundation became an approved non-profit organization with a focus on supporting transplant patients in California and providing post-transplant housing close to the hospital.
I could see the emotion on Denise’s face as she spoke, and her stories of those she has helped through her organization translated into pure joy. I felt it, too, as she explained that nonprofits are there to fill in the gaps and provide a safe place for people who have nowhere else to turn.
“Transplant is a new life,” Denise said. “And, it shouldn’t create additional worry in life.”
I asked Denise how, in the middle of her own struggle, she continues to reach out and provide for others, and she told me that it is from others that she draws her inspiration. Her sense of value comes from serving others, and in the end, it doesn’t matter what she has but how many lives she has been able to touch.
Tomorrow isn’t promised. And, if there was ever a time to make a difference, it’s now. Denise is a shining example of drawing from personal pain to create beauty and building a life full of thriving for herself and others post-transplant.
Read Rennie’s take on throwing cancer a curve ball on CancerLyfe.
My Diagnosis Story: At the age of 15 I was a scrawny, little girl with terrible stomach pains and barely any meat on my bones. But let me backtrack. At the age of 12, when I wasn’t growing or gaining any weight, while all my friends were thriving, I was misdiagnosed with a growth hormone deficiency. I started growth hormone treatments, which I was on for almost 4 years; and even though I grew, I was making little progress with my stomach pains and my weight gain. So we (and by we I mean my relentless Mom who never gave up on me, and me) went back to the hospitals, back to the gruesome tests, back to the doctors… only to get misdiagnosed again with an eating disorder. But my Mom and I swore to the doctor that I was eating, I just wasn’t gaining any weight and was in a lot of stomach pains constantly. God, the Universe, (or whatever higher power you believe in) must have wanted to help me out when he put me under the care of Dr. Jesse Reeves-Garcia at Miami Children’s Hospital because he properly diagnosed me with Crohn’s disease at the age of 16, with only 75 pounds on my 5’4″ frame. He quickly put me on a high dosage of steroids to help with inflammation, which got me on the path to recovery.
Treatment Plan:The steroids worked well for me for two years. Once they stopped working, Dr. Reeves decided to put me on Remicade, which I was on for almost 11 years. During that time, I did have to have a small bowel resection, but other than that, I was able to live a pretty normal life with my Crohn’s disease.
Recently, my doctor switched me from Remicade to Stelara, which I actually just started two months ago in the hopes of getting my disease completely under remission as I start family planning.
Where I am now: I am happy. I am healthy. I have the most amazing team of caretakers, including my husband, who battles this chronic disease with me and complies to my dietary restrictions and gives in to my every craving; my family and my friends, who have gotten me through very rough Crohn’s disease days (you know, the ones where you can’t even get out of bed); and of course, my incredible team of doctors and nurses at Cedars Sinai LA led by Dr. Christina Ha. I am not fully in remission, but my doctor is working arduously to get me there. And I know we will.
I also wrote a moving note for my last Remicade infusion. I think it might be helpful for other patients in a similar place as mine:
My last infusion ever July 22, 2021
As the nurse pokes my vein to draw 12 tubes of blood (checking for TB, hepatitis, CBC differential, regular blood work, mercury levels, etc.) tears start running down my cheeks.
“I can stop if you need a minute”, she says kindly. Her name is Kristine. I’m holding my husband’s hand tightly, he knows how much I dislike needles. I’m looking at the painted canvas that acts as a room separator and I look up at the high-ceiling recently renovated room at Cedars Sinai Hospital in Los Angeles. I feel the blasting AC hit my body and the needle successfully go into my left arm. I ask her to please continue and I grip my partner’s hand a little tighter (mental note: I owe him a hand massage) because it’s not sad tears rolling down my face and splashing on the comfortable gray reclinable chair.
It’s tears of gratitude slipping from my eyes. It’s gratitude to be treated in one of the best hospitals in the world, with some of the most caring nurses in the world, who care about my well-being beyond the walls of this hospital; who deal with my intense fear of needles—and the kicking, crying, cursing and screaming that comes with it; who accept my apologies for cursing under my breath when they stick me; who genuinely care for me.
It’s gratitude for being under the care of one of the greatest medical minds when it comes to IBD, Dr. Christina Ha, who doesn’t settle for having my disease under control but pushes until we find the solution to get me under remission; who holds my hand right before I go under for my yearly colonoscopy because I’m scared (it’s kind of our thing now); who hugs me when I cry loudly because we didn’t get the results we wanted; who promises me she’ll get me to a healthy place so I can have a safe pregnancy in the near future; who reminds me I have to remain positive through it all, regardless of the latest lab results; who patiently answers my every question, and who works so hard to keep me healthy. My Mom would have loved her. I’m actually pretty sure she finessed my care under Dr. Ha straight from Heaven.
It’s gratitude for having the most loving life companion, who calms my fears of all the scary side effects of this new drug by making a joke about those crazy pharmaceutical commercials we watch together that warn for everything; who makes dinner for me after infusions because I’m too tired to stand up; who drives me to every single infusion every six weeks without hesitation or complaints; who holds my hand through every needle stick and tries to distract me with “busy talk” like my Mom used to do when she held my hand 11 years back for my first infusion.
It’s gratitude for God’s Grace for putting me in the hands of this medical team; for guiding my path with this scary illness; for giving me strength and courage to battle Crohn’s disease with positivism and gratitude; and for not letting me lose hope.
It’s gratitude for my body for carrying me through all of these infusions since I was only 18 years old; for allowing me to receive these different drugs successfully with relatively no side effects; for giving me a grateful heart that can see the good in everything, even a chronic life-long illness.
It’s gratitude for my friends and family who have supported me in this journey through the flare-ups, the infusions, the new drugs, the dietary restrictions, the weight loss; who educate themselves on Crohn’s disease just so they can help me navigate it a little bit better; who keep track of my infusion dates and gastro appointments so I don’t feel like I’m going through it alone; who are texting me simultaneously throughout my hour-long infusion, checking in on me or just trying to keep me company virtually.
It’s gratitude for my father; who takes care of my medical bills so that I don’t have to worry about the finances behind my illness and I can focus on battling my illness; who has supported me so that I can get the best medical care and treatment for my disease as possible; who was by my side for my first and only Crohn’s disease related surgery 8 years back.
It’s gratitude for my Mom, who didn’t give up on an incorrect anorexia diagnosis 13 years back; who relentlessly fought to get me the best possible care; who didn’t give up on me—or my health— ever; who treated me to shopping sprees and yummy meals for making it through “tough” days at Miami Children’s Hospital when the doctors couldn’t find what was wrong with me. Gratitude that even after she’s gone, my illness— and everything in me and around me— keeps me connected to her. She would have been so happy to know that medicine has advanced to the point that I can now inject myself at home instead of coming to the hospital for IV infusions every 2 months. I know she is happy today. I know she is celebrating with me right now.
And even as I write this, the tears— and the gratitude— keep flowing. Thank you, God, thank you life. Here’s to the next chapter of my Crohn’s Disease.
Rob Weker describes how he took his diagnosis and started living, read more on CancerLyfe
Trauma leaves such a mark and imprint on us, that if we don’t do something to heal the trauma, it will only wreck us! This is where I was left after having several traumatic events in my life. For myself they just started compounding on each other, and it was not good!
The first part of my life, I dealt with a lot of childhood trauma, and this definitely left emotional scars on me that I still feel to this day. At the age of 20, I joined the Navy, and this was my escape from all of my problems, or so I thought. Well to fast forward through my Navy career, I was in a natural disaster in March of 2011, where my ship had to respond to the tsunami from the Japan 9.1 Tohoku Earthquake. My ship had to go on a search and rescue mission to help the Japanese government recover boats and what not from the aftermath of the earthquake.
During Operation Tomodachi, my ship had to completely secure all ventilation and potable water for close to a week, so we didn’t get contaminated by nuclear radiation from the Dai Chi nuclear power plant that was hit with the tsunami. There were some events that took place during this time that really messed up my mental health! Following this experience, my mental health completely went down hill. Eeventually I landed on limited duty for my mental health.
My drinking had gotten to the point of no control at all! I just wanted to drown every single thing that I felt. I was in Japan at the time, and even went to inpatient rehab for drinking where I made some significant improvements. But the Navy set me up for failure and put me right back in Japan where I had just come from. They sent me right back to where I had no support, and this was where events took place that had let my mental health completely go. They sent me back to Japan to be on limited duty, and to basically finish out my time of a 6 year contract. Well, when you put someone directly back into the environment that destroyed them, it is only going to destroy them again. So the Navy started me back on Klonopin, which in the words from a Navy Psychiatrist, is “alcohol in a pill form.” So I wasn’t really set up to succeed in this situation for my sobriety. I even had my rehab Psychiatrist and Counselors highly encourage me to stay stateside for my sobriety.
To make a long story short on this topic alone, this eventually led me to the point I was blacking out again. I ended up failing a urinalysis for drugs, and I had been diagnosed with panic disorder and agoraphobia this whole time, until I messed up. Then the Navy said I had adjustment disorder, kicked me out, and I get absolutely nothing for the 6 years I was in. Even for all the health problems, they don’t give me anything for it. I went in the Navy a lot healthier than I am now, but since my mental health was so gone, and I failed a drug test, they won’t help me at all.
Now this event stuck with me and my image for years! I felt like I had made the biggest mistake of my life, when really I wasn’t being helped for a severe mental health issue. I got out of the Navy, and I went to the bottom of the barrel! I was reckless when I got out, because I didn’t care about anything anymore. I just wasted 6 years of my life, to only get a hell of a lot of health issues, and nothing more. I wasn’t too happy with this! I am very thankful to still be alive today, because I didn’t like anything about myself.
I tried to run from myself and my problems more when I got out. Rather than facing my problems, it always seemed as if I just moved it would fix everything. So this landed me in North Dakota working in the oil fields for a year. Let me tell you, it is brutally cold there, and if you enjoy trees, well forget that. North Dakota doesn’t have very many of them. I was only running from my problems there, and I got very involved in drugs again.
I eventually got out of North Dakota, but I was only running again from my mental health issues. I started a job in Seattle, which didn’t last long, because my problems came right along with me. I drank myself out of that job, and I was also very involved in drugs then as well. This eventually made me lose everything that I owned, and this was the big wake up call that I needed in life!
When I lost everything I owned, it felt like it ripped a little part of me away with it. This was what I needed to wake up, and realize what I was doing! This is when I started to make the shift towards working on my mental health.
I took a different approach than many do when dealing with drugs and alcohol. Healing is a self journey, so whatever works for you is what you should do. For myself I couldn’t do AA meetings, because my mom used to take me with her when I was a kid. So for me this is a HUGE trigger. I don’t feel comfortable being in there listening to someone tell me stories that I have all experienced. So I took a different approach to this.
My approach to sobriety was diving into a lot of self help, and how can I improve myself as a person. I also used a lot of affirmations when I would have negative thinking come up. I have had people from AA meetings tell me I am absolutely crazy for not doing AA, but healing is all a personal journey, and it isn’t linear. I am not a big fan of the mentality of people thinking like that either, because you are placing judgement on my way of healing, which works for me. So that is another reason I don’t jive much with AA meetings. I feel I have been judged by them with my approach to staying sober. If it works for you, then you should stick to it! Do whatever works for you, because this is your healing journey! Do what works for you, and I will do what works for me.
Now I am in the process of working through my traumatic memories with a therapist. We are doing EDMR, which is specifically for trauma, and working with the memories. I put off this portion of working on myself for years! I won’t say it is easy, but it is totally worth it! You have to deal with your trauma, otherwise you could be repeating exactly how I was with my addictive behaviors. Trauma isn’t something that goes away by itself either. It gets trapped within us, and it stays there causing a heap of problems! You have to work through these things, and it will lead you to a much happier life!
A Celebratory Conversation with the Winner of the 2021 Innovation Challenge in IBD
At Lyfebulb, we believe that personal experiences with chronic illness can lead to potentially lifesaving and definitely life-improving innovations. One example of this success can be seen through the Lyfebulb and Arena Pharmaceuticals 2021 Innovation Challenge in Inflammatory Bowel Disease. The Winner is Atray Dixit, PhD, the Co-Founder and CEO of Coral Genomics. He was inspired by a family member who suffered with IBD. On September 14th, Lyfebulb spoke with Dr. Dixit and a small panel of guests as part of their virtual Fireside Chat Series.
The chat was moderated by Lyfebulb Founder and CEO, Karin Hehenberger, MD, PhD. Other panelists included Tina Aswani Omprakash, a Lyfebulb Patient Entrepreneur, Founder at Own Your Crohn’s, and Co-Founder at IBDesis, along with Brad Vale, PhD, DVM, who is the Co-Founder and General Partner of Treo Ventures.
The award-winning product by Coral Genomics involves a special type of genetic screening that helps identify which medications will and will not possibly work on a particular patient by identifying critical biomarkers. In the Fireside Chat, Dr. Dixit said that the first application is a blood-based clinical test to help doctors decide on best medications for their patients, with the goal of avoiding unnecessary surgeries. The process includes obtaining information on the patient’s clinical history, such as what clinical drugs they have tried in the past, because all the details are important for a biological learning model. Dr. Dixit hopes to collaborate with other companies to develop infrastructure for clinical studies, especially “to help track patients in the middle of the before and after time points.”
Ms. Aswani Omprakash, who lives with Crohn’s and a permanent ileostomy, has been personally affected by her father and other relatives who lost their lives from IBD. She understandably praised Dr. Dixit, saying she is grateful for all entrepreneurs who bring the community together with new innovation, medications, and metrics that improve quality of life, such as the biomarkers identified by Coral Genomics. Noting that it is difficult to predict how IBD will present and evolve over time, she says that biomarker technology will hopefully help that; anything that makes the patient and caregiver’s life easier is crucial. Ms. Aswani Omprakash added that this innovation helps make her more comfortable and hopeful about her future. However, she believes that we need more IBD specialists, not just gastroenterologists, “for better patient access and to eliminate disparities.”
Dr. Vale has also had a long-term interest in diagnosis, therapy, and “getting the work done that ultimately leads to improved patient care.” In response to Ms. Aswani Omprakash’s reference to eliminating disparities, Dr. Hehenberger asked Dr. Vale about diversity as a venture capitalist. He noted that “diversity manifests itself in open mindedness in patients we’re going to treat to create a bigger market.”
In later discussion, when Dr. Hehenberger pointed out the evidence of so many drugs only working on a specific racial group, the advocate in Ms. Aswani Omprakash talked passionately about diversity in clinical trials, pointing out that the South Asian population, in particular, demonstrates how different phenotypes of disease present in different ethnic populations.
On this front, all agreed that Dr. Dixit’s innovation would address all their concerns about the ever-evolving IBD community and the varied needs of its diverse patient population. Hats off to Coral Genomics!
You can watch the Fireside chat here
You can watch the winner announcement here
I am the mother of a 23-year-old with ulcerative colitis. Some could argue that I statistically had it coming since my mother lost her colon to ulcerative colitis at age 22 and my son’s father also lives with the disease. Beyond that, IBD is prevalent in other relatives on both sides of my children’s family. As one can plainly see, this illness was not new to me when my son was diagnosed at the tender age of 9 years old.
Unfortunately, familiarity and experience with a disease does not make one an expert when thrown into the caregiver role; emotions can run rampant even as we work hard to learn all we can to help our children. That is why my September 28th conversation with Grady Stewart was so rewarding – it provided me the feedback and validation I needed as a parent who still questions her past and present efficacy as a caregiver.
On Grady’s ambassador profile in Lyfebulb, you can learn a bit about his story and passionate involvement with the IBD community, but in the live chat I had with Grady, you can see the impressive young man he truly is. When I was thinking of what questions to ask Grady, I focused on my own concerns as a parent caring for my child. What follows is a sampling of the questions and points that touched home for me the most.
Since Grady was diagnosed as a freshman in college, he talked about how hard it was to suddenly be thrown back into the role of the child who needed his parents while he had already taken steps towards becoming an independent adult in the college world. He said he felt extremely isolated when he first learned of his diagnosis because he really did not know anything about UC. He felt vulnerable, adding, “It takes a lot of courage and bravery to be open in public about it … I don’t know that I was there in my journey.” So he was grateful for his ability to seek out parental support.
That led me to ask Grady which was more important to him – independence or support, given his age upon diagnosis. He definitely chose support, stating, “Support was the pathway to independence for me.”
As the parent, I was encouraged to hear that. Even though my son is now an adult, he has lived with this condition for almost as long as he has had memory, and I have worked hard to transition myself from a fully responsible parent and caregiver of a child with chronic illness to a far less responsible parent and support partner along my son’s journey. But I would be lying if I said it has been easy.
I asked Grady to discuss the most and the least helpful things his own parents had done for him and continue to do in regard to caregiving.
He noted the ongoing support of actually being there for appointments and treatments as a big plus. When Grady observed that “There is so much love in that act of a friend or caregiver coming with you for a [two- or three-hour treatment]”, it particularly hit home for me. I spent more hours than I care to count trying to entertain my son with movies, stories, or jokes while he sat through an infusion or prepared for an MRI or other more invasive test or procedure. I really needed to hear how important that support has been to Grady because our own sick children often do not have the wherewithal to thank us at those moments because they are under their own duress.
Regarding the least helpful thing his parents have done, Grady demonstrated such insight and compassion when he recognized that “Caregivers are very much going through the same wins and losses as the patient, in a different way, but it very much impacts them.” Still, he has been frustrated when they worry too much or are overly involved. He says they seem to have difficulty giving up control.
Well, there you have it, I thought to myself, realizing that I have certainly been just as guilty as Grady’s parents, which brings me full circle to my comment that becoming the less responsible parent and support partner is not easy. It is our own ongoing journey.
Grady and I summed up our visit with his advice to caregivers: Don’t forget to take care of yourself too.
At which point I was thrown back into memories of walking the treadmill at the gym in the children’s hospital in Miami back in 2012, while my son lay under full sedation after having finally lost his colon due to this pernicious illness. And I remembered how guilty I felt stepping out of the ICU for those moments just so I could clear my head and breathe full breaths. But Grady’s advice is spot on. If we are not good to ourselves, we can be no good to those who need us.
So continue soldiering on, my fellow caregivers. As Grady also pointed out, we are part of an ongoing partnership with the patients we hold dear. And according to this remarkable young man, we are definitely needed and appreciated.
Lyfebulb Live with Grady Stewart:
This interview holds a special place in my heart, and not only because Jacob is my brother, and my living donor. It’s a unique insight into the experience of an organ donor, one I, as a transplant recipient, cannot fully understand. I am one side of the story, the donor is another, and together we come together to create the transplant community.
Jacob is a university student, currently working towards an English degree and minoring in theology and communications. His hobbies include working out, playing sports, reading and watching movies (He lists Lord of the Rings, Star Wars and the Chronicles of Narnia among his favourites).
As a donor, he underwent surgery to remove 60% of his liver and, despite challenges along the way, he describes his recovery process as fairly easy and straightforward. This may not be what everyone would say, but he credits an amazing medical team for his recovery, and upon entering the transplant centre, I can confidently say he is still more popular than me. Young, physically fit and the most generous guy around, Jacob quickly became the topic of conversation all around the hospital, and he is still an inspiration to doctors and nurses today.
Going back to the basics and relearning how to walk post surgery was an enlightening and oddly enjoyable experience, says Jacob. As a busy college student, he was also forced to rest and recover, giving him an entirely new perspective on life.
His sense of humour kept him going through the bumps in the road, from asking his doctor when he could hit the gym again after waking up post surgery to shrugging and saying “You win some, you lose some” when it came to his near death experience overdosing on pain medication while on the recovery floor.
Throughout the whole process, with all it’s complex losses, Jacob says it is beyond worth it. He draws his inspiration from people who are doing what they love, living life to the fullest.
Jacob is passionate about living life and loving others. And I am beyond proud to be his big sister.
(Jacob would also like me to add he is currently single and now accepting applications for potential dates)
