On May 23rd, at WBUR's CitySpace, Mike Romano and Genevieve Hammond shared their stories of navigating kidney transplant--Mike as the recipient and Genevieve as the donor. We shared the video with you on our blog last month, and will now share their written stories with you as a two-part series. Mike first.

By Michael Romano

I think sometimes we as humans like to think we have more control over our lives than we really do. We go about our days confidently making decisions as if we are in charge, but many of the situations we encounter are out of our control. Anyone here who has experienced significant health problems knows this all too well. My own experiences with polycystic kidney disease have often left me feeling powerless and wondering if there is much of anything we do have control over.

I thought I was healthy for much of my childhood and young adulthood. I grew up in the picturesque part of rural northern New Jersey, surrounded by mountains and cows...far from the smoggy Turnpike and the trashy but endearing-kind-of-trashy Jersey shore. I spent my childhood playing the saxophone, loving school and never pumping my own gas--that’s against the law in New Jersey. I moved to Boston in 2002--to this very street in fact--to attend Boston University where I studied biology and education. I went to grad school across the river at Harvard, and then started teaching. I’ve been teaching high school biology, marine biology and chemistry at the same suburban high school for the past twelve years, save last year when I took a sabbatical to work at NASA in Washington, DC. I came back from NASA to get a kidney.

I was diagnosed six years ago with polycystic kidney disease (PKD). It’s a genetic condition where as time goes on, cysts grow on the kidneys, limiting their ability to filter your blood and eventually leading to total kidney failure. I actually found out I had PKD as somewhat of a fluke...there was no family history of it, and patients don’t usually show many symptoms until your kidneys fail and it’s too late. One symptom is high blood pressure, which I did have in my early twenties, but my doctor chalked it up to “family history” and put me on an ACE inhibitor to keep it at bay. I went to the emergency room on the eve of my 28th birthday because something wasn’t right--I was having arm pain, chest pain, shortness of breath...I self-diagnosed this as a heart attack by reading WebMD, which is apparently a pretty common thing among millennials based on the number of memes I’ve seen about this. It definitely wasn’t a heart attack, but the symptoms were caused by abnormal blood chemistry that was kidney related. It’s funny thinking back to that day--the doctor wanted to keep me overnight for tests and observations, but I protested because the next day was my birthday and I had reservations at Oleana. Locals will agree--totally disappointing to have to miss that! But she insisted, especially considering that something serious might be wrong with my kidneys. One kidney ultrasound later, the characteristic kidney cysts of PKD were made visible and I was officially diagnosed with PKD. That high blood pressure I’d been treating? A classic symptom of PKD. (Luckily, the diagnosis and discharge came a few hours before dinner, which was delicious by the way.)

The next few years were marked by semi-annual nephrologist visits. They largely went the same each time...a slight decrease in my kidney filtration rate (bad), an ominous warning about the eventual renal failure I would experience and impending need for a transplant, and a rebooking for a follow-up in six months. Then every three months. I actually really liked my nephrologist--he was personable, compassionate, and talked to me like an educated person--he knew that I was reading up on my disease (and in primary literature--not on WebMD). These visits were emotionally-draining too though, because his recommendations and diagnoses sounded overly serious for how personally healthy I still felt. I didn’t *feel* like a sick person, you know? I’m not sure healthy people really have a concept of what it means to be a “sick person” anyway. We spend time with family members in the hospital. We see news stories about communities rallying around children in hospital beds hooked up to IVs, or pictures on Facebook of a woman wearing a bandana to cover her head that has gone bald from chemotherapy--that’s a sick person. That’s not me...I just had high blood pressure, right?

As time went on I did start to feel some physical symptoms though. As my kidneys became less able to filter out my blood, my blood filled with “junk” and this made me really tired. I also had a few flare-ups of gout—a really painful arthritis that can be caused by kidney disease. I was spending my summers teaching in Hong Kong, and the long flights became more arduous as my feet and legs swelled. My last trip to Hong Kong in 2017 was nothing short of a cluster...my feet were so swollen that I couldn’t wear shoes, ended up in a Hong Kong emergency room, and then had to teach on crutches for a few days. I knew a transplant was imminent...I was just hoping I could postpone it...well...indefinitely, you know? I was compartmentalizing my illness, which was easy to do because I still mostly felt fine, and no one could tell me when my kidneys would ultimately fail...it could be a year it could be a decade or more.

Part of this uncertainty came from my GFR, which stands for “glomerular filtration rate.” This is an indicator of how well your kidneys are filtering and working, which can be determined from a blood test. A normal, healthy GFR is 59 or greater. Mine had been hovering in the mid-20s for a few years. I knew that when I dropped below 20 I would qualify to be listed on the National Kidney Registry and real discussions of a kidney transplant could begin. This happened in January of 2017, and then it all finally seemed real. I didn’t realize my wait for a deceased kidney would be many years in Massachusetts. I have type O blood, which is highly desirable for blood and organ donations (if I were the donor), because it is a blood type that is highly compatible in many people, regardless of their blood type. The flip side of that, however, is that type O individuals can *only* receive blood and kidneys from other type O people, making the wait for type O kidneys exceedingly long--five or six years.

I started looking for a living donor, because if my kidneys totally failed before finding a donor, I would have to go on dialysis or I would die. Dialysis is crappy. It takes a huge physical toll on your body. It requires hours of treatment three days a week, severely limiting your ability to travel, or just live an independent life. It’s also not a permanent solution, because if you stop dialysis you will ultimately die. I didn’t want this, not in my early 30s. I started looking for a kidney among family members, but there were no healthy type O matches. This was frustrating because so many of my family members wanted to donate, knowing that you only need one healthy kidney to live a long, healthy life. After a year of looking and waiting and watching my GFR tick down, in January of 2018 I took to social media to ask for a kidney. The results were totally overwhelming. My Facebook post went viral, mostly being shared by friends, colleagues and former students. With all of those shares, I had over 60 type O people submit applications to be my donor! The hospital couldn’t tell me the names of those who submitted applications because of privacy laws, but people told me themselves: friends, colleagues, former students, parents of students, former classmates from when I went to high school, parishioners from my parents’ church...just so many generous and brave people.

I met Genevieve 12 years ago. She and I teach at the same high school, and while our classrooms were on opposite sides of the building when we met (she taught English and I taught biology at the time), over the years we’ve become good friends through co-advising the Student Council, chaperoning dances together, working as building reps for the teachers’ union and serving on committees together. I fondly remember working with Genevieve on a committee charged with re-writing our school’s mission statement several years ago. I had some pretty eloquent suggestions for our new mission statement, and Genevieve called me a “wordsmith.” That’s high praise coming from an English teacher! Ultimately all of my mission statement suggestions were ignored, but to this day, it’s one of the nicest compliments I’ve ever received.

It turns out this friend who called me a “wordsmith” a decade earlier saw my Facebook post, and after months of testing turned out to be a very close kidney match, and was willing--nay, excited--to donate one to me! I remember the conversation Genevieve and I had about the transplant timeline once the process was finalized--it was like we were scheduling a coffee date. “How about summer?” “Actually, I have a trip planned. Maybe early fall?” “Well, we should get the school year rolling at least...maybe October?” “I have a wedding the second week--could we shoot for the third week?” And like that, we scheduled this crucially-important medical procedure for October 25th, almost seven months ago today!

The transplant itself was certainly scary, and I remember the day pretty vividly. I showed up to the perioperative area at 8am, changed into my ugly blue transplant gown, and met a lot of faces I would see over and over throughout the day like the surgeon, the anesthesiology team, and the nurses. I had stopped eating the night before and stopped drinking at 7am, so I was hungry, thirsty, nervous and ornery. To add to my unease, I was hoping to see Genevieve that morning, but our paths didn’t cross. I was really frustrated by this, especially because I knew she was going under the knife first. By 9:30 I was being wheeled through the bowels of the hospital to the operating room. My anesthesiologist was wearing a Red Sox skull cap--a wicked Boston thing to witness. There were SO many scissors in the operating room, but I was reassured they were not all for me. In fact, this was one of the last things I remember--I was unconscious before they even put the oxygen mask on. I didn’t even get to the counting backwards, which to be honest was kind of disappointing. The next thing I know it was 7pm and I was waking up in my recovery room. I didn’t feel much pain at first (drugs) but I also didn’t feel great (also drugs), but I was told the kidney was working great and I was making beautiful urine, and honestly that’s the nicest thing anyone had said to me in a few days, so it was quite the compliment. Genevieve was recovering on the same floor, and I finally got to see her the next day. I remember feeling incredibly grateful walking over to see her. It was also incredibly hard to walk--huge incision, catheter in, hooked up to IVs, lots of pain--but I felt relieved it was over, and incredibly close to someone who had always been a good friend.

Genevieve’s recovery was so fast. It was such a positive light when I would go for a walk around the transplant floor and see her smiling face. Mine was a little bumpy. The kidney they removed from me was very large and inflamed. They had to take a lot more tissue out than expected, and as a result I developed an ileus, which essentially means my digestive system shut down. I started vomiting so they inserted a tube through my nose into my stomach that sucked out over a liter of grossness over a couple days. I don’t think I’d felt this physically miserable before. It hurt to sleep, to move and I couldn’t eat. I also ended up being allergic to one of my medicines, so I had some hives. Ironically, I also had one last painful post-transplant gout attack.

The victories were pretty sweet though. You forget what an accomplishment something like a catheter removal is! I was discharged a week after the transplant on Halloween. In remember getting a small cup of M&Ms with my lunch that day, and watching the Red Sox victory parade on TV while waiting to be discharged. I was relieved to finally be home and have my parents there to help me, though recovery would continue to be slow and difficult. Other small victories like taking a shower, going to the bathroom without pain, walking without pain, sleeping through the night, lifting groceries, being out in public, returning to work, and feeling like a normal, healthy person again really made me reflect on the entire process. The regimen of anti-rejection drugs is much more manageable than I imagined they would be, and the bloodwork and follow-up visits have significantly reduced in frequency. My immune system is compromised, of course, but even that has noticeably regained strength from right after the transplant. So I do notice a positive physical improvement, and my attitude has improved as well. I feel like I have a new lease on life--a chance to live a long, healthy, productive life that wouldn’t have been possible without Genevieve’s kidney. I feel like I have a responsibility to help other patients use resources like social media to find a donor. I recently spoke on a panel to a group of pre-transplant recipients, and continue to volunteer for National Kidney Foundation walks. Did you know that my transplant and associated costs were in excess of $300,000? Fortunately I have good health care, and paid less than $2,000. Unfortunately, many Americans don’t have this luxury. It shouldn’t be a luxury, though, it should be a right.

Genevieve and I have been using our platform as teachers to spread awareness about living organ donation as well. People have asked if it’s weird seeing my kidney donor now. Some friends had encouraged me to find a donor that I don’t know. What happens of something goes wrong? Will I forever feel indebted to her? In fact, it’s one of the greatest blessings to see her walking down the hall at school. Colleagues have shared how special it is to see us together, and how it gives them hope. We even have our photograph in the yearbook together, as our story has inspired students too. It’s a pretty special feeling knowing that she so selflessly saved my life, and I get to share this bond with her that most people will not ever get to experience. I do feel a greater sense of responsibility now--I have to do something good with this opportunity she gave me. I think that’s why opportunities like this to share our story are so important. I can share our story, so I must.

It’s hard to thank someone who donates an organ to you. It’s hard to find the right words to say, even for a wordsmith. My gratitude is there in many forms, however: the occasional text asking her to coffee, the soft smile on my face when I find her in the break room between classes, the messages of reassurance I share with other pre-transplant recipients, and the interactions with my family and friends that I can now spend many more healthy years with. I never would have known a decade ago at those Student Council dances or teacher meetings what future bond we would ultimately share, but that’s the essence of the human experience. We can’t control many aspects of our own health, or predict what the future holds. We can, however, cultivate friendships with those random people we meet at work. We can express gratitude to those who help us along when we’re struggling physically and emotionally. We can share our hardships and experiences with others, especially those going through similar health challenges to make them feel less anxious. We can also never really know what hardships our friends and colleagues might be facing in their personal lives, so we can practice patience and empathy in our interactions with others. We can be grateful for the things we can control and the challenges we don’t have to face. And most importantly we can share our stories--in doing so we are able to reshape our perspectives on life and the importance of the relationships we forge in it.

When a heavy object falls on one’s foot, it exerts pressure on the skin and muscles, and that hurts. Raw sensation is the pressure, and everything beyond that is interpretation. To feel is a combination of raw sensation and interpretation from the brain based on past experiences.

But when one loses the ability to recall, one loses the ability to interpret and sometimes even the ability to feel.

My grandmother’s gradual decline all started over a decade ago, in the Malagasy province of Morondava, in Madagascar. My father remembers the day when everything radically pivoted and his world turned upside down: after a strenuous day of housework, my grandmother —for just a moment — confused day and night.

A few years later, the diagnosis was given: Alzheimer’s disease, coupled with brain aging and a strong 25-year-old depression. My grandmother moved to the capital city of Madagascar to become the sixth resident of our household. My parents, sisters and I shaped our lives and schedules according to what we thought my grandmother would feel most comfortable with. She was the beloved center of our lives.

Within several years, all my grandmother could remember clearly was her name. It seemed as if she had entered a parallel universe she had created herself. She got lost in her thoughts while tracing flower patterns with her feet and counting the number of lights out loud. There was no way of telling what she was thinking. I could not bare thinking about how often she felt lost, alone, or misunderstood. The thought haunted me for days; it made me feel utterly helpless.

As her amnesia worsened and her brain activity declined, my grandmother stopped interpreting raw sensation, and, slowly lost her reflexes. She sometimes forgot to drink water after putting a pill in her mouth, and chewed on the medicine instead. The bitter taste surely made its way through the taste buds on the back of her tongue, and was probably sent to her central nervous system, but somehow was not interpreted. Not a single cringe showed on her face.

One may say that her inability to interpret sensation caused her to stop feeling. Indeed, not once did my grandmother show signs of anger, sadness, or even slight feelings of impatience. But she often laughed. Each time she disappeared into her parallel world, I witnessed genuine happiness.

Some people believe that acts of kindness and empathy do not make a difference in a world in which man has already reached the moon. But I believe that it is the little steps we make that end up being the most precious ones. Offering to share her popcorn while watching cartoons on TV made my grandmother happy. When I simply asked about her day, or commented on the flowers that grew in the garden, a smile appeared on her face.

As I grew older, I understood the importance of empathizing with my grandmother. And how could I possibly attempt to do so without her collaboration? I could not change the way she perceived her world, but I could change the way I perceived her world: it all had to do with acceptance.

Empathy, I feel, is the ultimate solution to alleviate one’s pain and help someone make peace with their condition. Within empathy lies acceptance. Coming to terms with a condition is the first step towards wellness. My grandmother was not part of the world I knew so well — this was a fact I could not argue against. There was no use in me trying to include her in the present by constantly reminding her of the time of day or the year, trying to bring her back into my reality only confused her.

In the last years before my grandmother passed away, my family and I ceased trying to heal her by forcing her to remember. We let her imagination go free, and even took part in her adventures. Her imagination, stimulated by compassion and attention, helped her recall certain pleasures of places, smells, sights, tastes, and faces from her past. This seemed to allow her to reconnect with small part of her old self, and make her feel more comfortable in her daily life. I am eternally grateful for all I learned from my grandmother. Her story taught me the immense powers of compassion.

Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

Anne grew up with privilege. She was well-educated, and she had resources. She married a Harvard professor. She sent her children to a prestigious private school. On the surface, her life looked neat and pretty, even enviable. But her life had another, hidden side.

For over forty years, Anne has struggled with drug and alcohol addiction, and for many of these years, while injecting amphetamines and heroin, her life was controlled by the need to find her next fix.

I knew Anne while growing up in the 1970’s and 80’s. She was my friend’s mom. I remember her as warm and open, striking in her mini-skirts and stylish boots. While she was certainly more Bohemian than my own mother, I had no clue that she was an addict. I never would have guessed at the suffering that was going on in my friend’s home.

Addiction is a disease with enormous financial and human costs: the National Institute of Drug Addiction estimates that substance abuse in the United States costs more than $600 billion annually. Addiction has been linked to increased incidence of cardiovascular disease, stroke, certain cancers, and mental illness. Intravenous drug use accounts for more than one-third of the new cases of HIV, and for the majority of cases of Hepatitis C, which can lead to liver cirrhosis, and in rare cases, liver cancer.

Medical research has only recently started to characterize addiction as a disease of the brain that preys on and alters the limbic system, the brain’s reward center. This has changed various approaches to treatment, and should also temper our judgment of the individuals who suffer from this condition.

Here, Anne, now 67, speaks about her long struggle with addiction. With tremendous courage, she talks about her pain, the pain she caused others, her numerous attempts to get sober and her many relapses. Anne has been sober for seven years now, a huge accomplishment. But her struggle continues because addiction is a chronic, lifelong disease.

Originally published by WBUR Commonhealth Blog, October 14, 2011

Resources:

To learn more about substance abuse, visit

http://www.mayoclinic.com/health/drug-addiction/DS00183

To learn more about treatment options, visit

http://www.helpguide.org/mental/drug_abuse_addiction_rehab_treatment.htm

1-800-662-4357 is the 24-hour, free, confidential, and multi-lingual National Helpline and Treatment Referral Routing Service for individual and family members facing substance abuse.

http://www.samhsa.gov/treatment/natHelpFAQs.aspx

In 2005, at the age of 36, I was diagnosed with mesothelioma, an extremely rare form of cancer caused by asbestos. I developed the disease because as a little girl I used to wear my dad’s coat – the same coat that he would wear to do construction with drywall and demolition work. Asbestos particles would travel back with him on his coat, and from there they got into my lungs.

Most people who develop the disease die within 18 months. The really lucky ones make it five years. My story is almost unheard of, as earlier this year marked 10 years of being free of this deadly disease.

The last 10 years have not been easy, but they have been a blessing despite hard times. One thing that has helped me get through it all is the work that I have done to spread awareness and educate the public about mesothelioma. I have also spent these last 10 years warning people about the dangers of asbestos, and trying to get the toxic substance banned here in the United States.

It is really amazing how many opportunities have come my way because of mesothelioma, especially because, for most people, the disease means closing rather than opening doors. I’ve met so many wonderful people and been a part of so many incredible events. It seems hard to believe in light of my original diagnosis.

In 2009, after I had attended a symposium run by the Mesothelioma Applied Research Foundation – a nonprofit organization dedicated to finding a cure for mesothelioma cancer – I became aware of the annual observance of Mesothelioma Awareness Day, started by the Meso Foundation. The idea behind this event is to have a single day when mesothelioma patients, caregivers, advocates, doctors, researchers, and others can take out all the stops and let everyone know about the disease. That day is September 26th.

But Mesothelioma Awareness Day is more than just any old awareness day. The Meso Foundation wanted to do something different. Every September 26th, supporters of the foundation-- Mesothelioma survivors, caregivers, individuals who have lost a loved one to the disease, union and industry workers exposed to asbestos--meet in New York City with the goals of coming together, learning together, and spreading awareness. On my first Mesothelioma Awareness Day, more than 50 of us met early in the morning outside of the Today show in Rockefeller Center. We wore the Meso Foundation’s T-shirts, all with large, bold letters, and held signs telling the world why we were there. The Meso Foundation combined this awareness event with a one-day seminar on malignant mesothelioma. Since, my mom and I made have made this an annual tradition. Every year, we attend the events put on by the Meso Foundation, and also take advantage of all New York City has to offer. I love having my mom be a part of something so important to me. Every year is a reminder of how far I have come since my diagnosis.

Over the past few years, I have decided to take in some other events to help bring awareness and raise money for mesothelioma research. For example, I have started participating in the Miles for Meso event, a fun 5k run or walk that has grown into multiple races held in several states. I am proud to be a participant again this year, and to be bringing my supportive husband Cam and my beautiful daughter Lily with me!

This year, for the first time, I participated in the 6th annual Kayaking 4 Meso event. Although I wasn’t able to kayak myself, I, along with the other survivors, rode down the river in a pontoon! This event, started by my close friend Mark Wells whose daughter is a 15 year survivor of the disease and only 16 when she was diagnosed, (the average age of diagnosis is 60), was held on September 10th, before Mesothelioma Awareness Day, and raised money for the Mesothelioma Applied Research Foundation. There was over 225 people kayaking down 8 miles of the Hudson River from Stillwater, NY, to Halfmoon, NY and there will be even more in attendance. Upon completion of the race, Mark was presented with the “Above and Beyond” award by Melinda Kotzian, the CEO Of the Mesothelioma Applied Research Foundation. A much deserved honor for Mark who has raised well over $50,000 for the foundation. It was so great to finally be there to support him and be there when he received the award.

All year long, I attend conferences and events and connect with patients, survivors, advocates, and others as much as possible. Back in the early years of my cancer survivorship, I even started my own observance on February 2nd that I call Lungleavin’ Day, as it marks the anniversary of the day that I had one of my lungs removed – an operation that saved my life. It started out as a small get-together with a handful of family and friends, but has since grown into an event that approximately one hundred people attend. We all write our fears on plates and then smash them in the fire to show that those fears cannot conquer us!

I know how lucky I am to have survived so long. I still sometimes struggle with strenuous activities, but this hasn’t kept me from getting out there and doing all I can. Ten years ago, when I was having a lung taken out and getting chemotherapy and radiation, I never would have guessed that I would have so many opportunities to spread awareness about my disease in order to help others.

I’m not writing all of this to pat my own back. I’m writing it in the hope that it will inspire others to get out there and spread some awareness of their own, about mesothelioma and the dangers of asbestos, or about some other rare disease or condition that has affected your own family. The important thing is just to get out there and make sure others know about it!

You can learn more about Mesothelioma Awareness Day here.

If you would be interested in writing your Mesothelioma story, please share it with us at abrewster@healthstorycollaborative.org

Emily’s eating disorder developed when she was just 14, shortly after she left home to attend boarding school, when her parents were getting divorced. She talks about the difficulty she had – and sometimes still has – in speaking and claiming the word “bulimia”. She reflects on how her eating disorder was not born from body hatred, but rather a plethora of painful emotions seething inside her.

For years, Emily’s eating disorder was her hidden identity, active to varying degrees but always present. She was convinced it would always be a part of her life. But finally, when she was 28, her family confronted her and revealed that they knew about it. Emily allowed them to serve as her initial motivation to begin recovery. 

When she first entered treatment, Emily struggled to even find the words to articulate her feelings, thoughts, and behaviors. But as she began to crumble in the safety of treatment, she also began to blossom.

Now 32, Emily resides in San Diego, California where she devotes herself to mothering her 20-month-old daughter, Winnie. She shares her aspirations for Winnie, and the values born from her experiences in recovery that steer her parenting decisions. And she speaks about how being a mom has bolstered her along the path of recovery, and celebrates how far she has come.