About two months ago, I found my perfect Kidney donor, Heather Cunningham. She is a friend of mine from high school, and I simply can not put into words just how much I appreciate her selflessness and willingness to not only help me to survive, but possibly many others as well. When I started my campaign to find the perfect kidney donor, I told the transplant team the only way I was going to get a kidney was thought the Paired Kidney Exchange Program. That is because after growing up and watching others (even my age) go through this, I could not get a kidney through direct donation. Not while knowing there was another way to get me and another well-deserving person a new Kidney. Well, when Heather came along, the transplant team tested her to see what blood type she was. She was o+; my blood type. They called me immediately to talk to me about considering a kidney directly from Heather if she matched in all areas. My first reaction was absolutely not, but they begged and told me it would be a better medical choice. I was explained that this was because with a direct match, there is less wait time on dialysis (which slowly causes your body to deteriorate). After much persuasion, I reluctantly agreed to participate in a direct transplant if Heather (or someone else) was a match. They continued to test Heather’s blood to see if she had any antibodies or proteins that my body would recognize from my previous transplant. She did have a protein that would negatively interact with my body, thus rendering her kidney an imperfect match for me. BUT a perfect match for someone else. When we found out Heather could not donate to me directly, we started taking the next steps to be a part of the Paired Kidney Exchange program. For those of you who are not aware, the Paired Kidney Exchange Program is a national list that matches up non-compatible donor/recipient pairs with recipients that the donors match (see attached photo). The Most amazing thing that I have realized in this whole experience, is that you can not control fate. Heather is met to save more than just my life this summer, and I am beyond excited to see this dream become a reality. Now that we know Heather will definitely be donating hr kidney on my behalf, I am gearing up for another fundraiser. I have contacted Murphy's Taproom in Manchester, and they are willing to donate the back room for a charity concert on Sunday, May 14th. There will be a Los Angeles based band called Weekend Celebrity who will be performing so that ticket profits can go to Heather to cover her expenses during the time of her recovery from surgery. I am trying to negotiate a deal With HolyChild to get them out here for that date! If anyone has any ideas, please let me know! They want money for flights and lodging, and I figured that maybe they could do it reasonably cheap and I would reimburse them after if we went over our fundraising goal of $3,500. If anyone has any ideas how to get them out here, please, let me know by commenting or leaving a message. I am going to work on posting more! It has been a very eventful month (to say the least). To put it into perspective, I started writing this short post on the 19th.... Here's to keeping everyone better informed!
0 Comments
The last couple of months I have been insanely busy and so much has happened since then that I would like to share with everyone! Since my last post, I have been on the ‘advocation trail’- working to spread awareness of not only my story, but a story that resonates with the hundreds of thousands of people on dialysis and waiting for a kidney transplant. In the beginning of October, I spoke for American Kidney fund at the Word Trade Center of Boston to celebrate some of their wonderful supporters. The reason I chose to support the American Kidney Fund is because they have done so much for me, while also advocating for other individuals with ERSD to be able to live fuller and a more meaningful life. The event ended up bringing in $97,800 when the original goal was $60,000! I was so proud to be able to share my story to not only raise awareness for ESRD, but to also inspire people to donate to such a magnificent fund! Observing the reaction from people as I told my story, I was filled with the strength and courage I need to move forward in my path to transplant. Towards the end of October I spoke for Akebia Therapeutics - a drug company in Cambridge, MA. The company is in the final stages of developing a pill form protocol (that activates our own bodily system to produce red blood cells) for Anemia. I spoke about my childhood struggle with Anemia (how much I would have rather have taken a pill everyday in replacement of a shot). I tried to inspire them to continue doing research in not only the dialysis sect, but also looking towards perfecting the cure that is transplant. Sharing my story to the employees of Akebia gives me hope for the future medical advancements that are being made available for thousands of people struggling with this chronic illness. I was able to see that we are not in the same place medically as we were 16 years ago- there are advancements ready to be used on people suffering ESRD. The beginning of this month, My mom and I went to Los Angeles to film for a television show. I can’t talk too much about it right now (hollywood, so hush, hush), but it is another way to raise awareness of Kidney Disease, dialysis, and how not to let it control your entire life- how to climb small mountains to get to the top! It is possible (Even with this life threatening illness)! This Labor Day weekend was by far the best i have had in a long time! I was able to travel to Colorado Springs with my mom and younger sister to see my brother graduate from a 6 month drug rehabilitation program. I was so proud of him, and felt incredibly blessed to bear witness to his truly inspiring transformation. I was so happy that I was able to travel with my family and celebrate his 6 months of sobriety (even while on dialysis) When I had a functioning kidney, I used to plan a trip within a couple days. Heck, the labor day weekend of my senior year in college, I traveled to California on a whim. I had planned the whole thing the day before I left. In my last year of grad school, I went to go visit my sister in Chicago (again, literally planning it 2 days in advice). I was all about spontaneous trips across the country since I had the luxury (BIG thank you to my mom for working for an airline for 25 years) of flying for free on the standby list. Of course, part of the rush of traveling for me was flying standby. When you fly standby, it’s an adventure all on it’s own. Basically, when flying standby, you fly “space available.” Meaning, you only get on the plane if there are enough open seats. If there are none, you wait for the next plane to your destination, no seats on that one? Next one…. basically you could be waiting days. Since I am on dialysis, this trip to visit my brother was completely different. I had to start planning 2 months in advance! Totally not something I am used to! The first step was to secure a flight with a guaranteed seat. Thanks to my Dad, I was able to get a secure seat using his accumulated travel points (without him, this trip would not have been possible)! The reason i would not be able to fly standby while going through dialysis (if not yet obvious), is because I can’t be stranded at an airport with no way home and no way to my destination….because that means no dialysis… and no dialysis means a very toxic and sick Riley walking (possibly wheeling) along. Step two was to get dialysis set up at a clinic near to where I was staying. This means calling the Fresenius Travel Line, securing a clinic, and apparently getting a referral for dialysis from my Primary Care Doctor (since I was traveling outside New England). At home, I have dialysis Monday, Wednesday, and Friday for 3.5 hours. Now, when I traveled to Colorado Springs, the dialysis clinic did not offer a Friday schedule. So, I had to go on a Saturday. Ahhhh traveling is not like it used to be back when I had a kidney. The last (certainly not least) step in traveling with dialysis is making sure that the technician has everything you need for the treatment (I.E. correct needle size and placement, correct size blood pressure cuff). These technicians see an average of 20 people in one day- I do not expect them to read through my chart and execute my treatment 100%- it’s simply unrealistic. So I kindly remind people what works best for me when I am at a different clinic. For example, I’m a big baby when it comes to those needles, so I always remind them to count to three and on number 2, I take a big breath in, and on three I blow it out. This technique helps with the pain, but how is a random unit going to know that without me telling them? Traveling on dialysis takes time and planning. Even though a lot of effort went into getting to Colorado Springs, it was well worth it. Not only was I able to see my little brother accomplish such a great obstacle, but was also able to see that traveling on dialysis is possible! I was empowered by the experience, and I would totally recommend traveling to other kidney warriors! I feel like this experience made me feel like I was living a “semi” normal life. How does one balance fighting for their life and living? This question weighs on my mind constantly. More specifically, the last couple of days. I know I am not the only dialysis patient that contemplates this fact of our existence on a regular basis. Especially young adults who have friends and peers traveling, adventuring, working the job they went to college for, paying down student loans, dating, and getting married. Sometimes, it is so hard to watch as others lives continue to move forward, and we (kidney warriors) are just stuck waiting….for a second or even third chance at LIFE.
However, if we lived our life everyday working, going to dialysis, laying home sick, and waiting to live… I ask you, what would we have to live for? If you're contemplating in your head for answers, the answer is simple-we would not. If we lived our lives by allowing dialysis and hospitalizations to control our life, we would live in isolation from the rest of the world. On the Davita Dialysis website, they specifically say, “Feeling calm can help you sort out things and you’ll be able to deal with your disease more effectively (2016).” For me, music and meeting new people helps me to be calm-these things heal my soul, thus allowing to be able to handle the change in my life. Seeing as humans are naturally social beings, one might hopefully be able to recognize and understand that not being able to live some semblance of a normal existence would cause us to lose the hope and strength it takes to survive. Of course, because we don’t have functioning kidneys, we also have to be careful with our bodies and treat them with ultra respect. We have to watch what we eat (in excess of the "norm") or our potassium, phosphorus, and electrolytes get all outta whack and can cause major problems. We can’t drink alcohol, and we can’t have a cheeseburger on labor day, but we sure can go to concerts, kayak, and enjoy ourselves when our energy levels and finances allow it. Most dialysis patients live on a very tight budget. That is because in-center hemodialysis treatments costs $89,000 a year (U.S Renal Data System, 2013). Mind you, that number does not include doctors appointments, transplant preparation/testing, and procedures. So, unless something is gifted or incredibly cheap, we often can’t participate. I am lucky enough to have an incredibly supportive boyfriend whom I live with and helps as much as he can. I am also lucky enough to work part time (3 days a week) as a nanny. This helps me keep up with my ‘everyday’ bills like rent, electric, and internet. Although I have a job, there are some weeks where I get sick and can’t work the entire work week, and my budget for the month gets slashed. I am lucky enough to have a fantastic extended family that has helped me out financially when times got rough. During rough times, if you know me, I am hunkered down in my apartment, resting, saving every penny, and trying so hard to get back that sense of normalcy. Monday, Wednesday, and Friday: dialysis
Three days I dread the most. Two painful needles inserted; leaving me with little control. One person, one kidney, to save one life. Zero lives lost, and a ‘forever’ bond created. Every single person on this planet has experienced some kind of trial AND tribulation over his or her lifetime. Usually, what keeps us from just giving up during the difficult times, is hope; we believe that life can and WILL get better. Now, for me that hope did not just fall from the sky- and for a lot of other people- it doesn’t just fall on their heads for them either. Young adults going through life threatening illnesses actively seek to normalize their chaotic environment in any way we can. It is through actively trying to normalize our lives, we gain positivity and hope.
During the first 3 months on dialysis, I was searching for things to be happy about. For example, since I wasn’t working in the hospital setting and really wasn’t in any sort of professional setting at all, I decided to dye my hair pink, purple, and blue- I also got my industrial placed (something I loved, but had to remove for surgery). These things all gave me what I like to call, ‘temporary happiness’ in my life…but they were short lived. First, I tried normalizing my life through doing things with friends, like hiking and going out on Friday nights. That’s when I started looking for nannying positions- actively seeking purpose in my life, while it was on ‘pause.’ While working with children gave me purpose, I continued to hike, exercise, and hang out with family and friends. The two of these things combined, gave me hope for the future. Many other #kidneywarriors have similar stories of what gave them hope in the dark times of dialysis. One of my fellow #kidneywarriors, Ahmad Alsardary - whom I meant when we were younger at Camp Sunshine, is currently waiting for his second transplant. He has been on dialysis for 6 years now. SIX YEARS of cramps, needles, fainting, and countless hospitalizations, and he is 26-years old! When his kidney failed, Ahmad was studying his third year at the University of Philadelphia to be a Occupational Therapist. Ahmad went onto finishing not only his bachelors degree (in 2012), but also his masters degree (in 2014) all while receiving dialysis treatment. Although he says that at times it was “tough juggling the two,” he also says, “my passion to help others far worse off in health than I was,” is what motivated him to continue moving forward. Ahmad, has also attributed his tribulation over his illness to his faith in God. Ahmad, who believes in the Muslim faith, says, “ God already has my book written for me - I'm just living through the pages. Yes, dialysis does suck and going to treatment sucks sometimes…I will continue to live my life to the fullest in whatever capacity God gives me and that's all I can do.” Both Ahmad and Rhodaja Shubrick (another friend from camp) both have followed their faith in God. Each of them follow different religions, but both expressed that their faith in that higher power has brought them a sense of hope for the future. Rhodaja, who is of the Christian faith, says, “My faith in God has kept me steady and grounded. When I feel I can not take anymore, I pray and I pray… I pray for forgiveness, for understanding, for peace, for love, for joy, and ironically even for the pain because it's a reminder that I'm alive and this too shall pass.” Rhodaja’s first transplanted kidney failed when she was 21 years old and a junior in college. She waited for a deceased donor kidney for 5 LONG years before she was transplanted this past May (thank God)! Dialysis never stopped Rhodaja - she graduated on time in 2012, (while still receiving dialysis treatments 3 days a week for 4 hours each time), with her bachelors in Communications. She says, “I didn't leave school… I didn't give up… I wouldn't allow this illness to win.” Rhodaja currently works for the Department of Transitional Assistance for the State of Massachusetts full time. A lot of fellow #kidneywarriors ascribe their sense of hope and positivity to the constant support of family and loved ones. When Rhodaja received her second transplant she posted on social media saying… “My mom, Marvenia Shubrickick, has been my nurse, my care taker, my strength, my prayer warrior, and my nutritionist. She made sure I had 3 meals a day and took my medicine. My dad has been my rock, my endurance, my personal comedian, my teacher protector, and my solitude. My siblings, for sleeping in the room with me helping me and making sure I'm alright.” Tiffany DeLorme, a 26-year-old aesthetician says she finds hope in her husband Matt. When her first transplant failed, they had only just begun dating - that was almost 10 years ago. Now, they have been married for 6 years and Tiffany’s kidney is functioning at only 30 percent. Meaning, she will need a transplant or dialysis a third time in her short life. Since Tiffany does not need to be on dialysis right now, she is moving forward in adoption. She says she looks forward to the life they will have with a healthy home and baby after her next transplant. Each and every person has their own story of trial and tribulation. When people encounter negative life experiences, most do not coward away; we rise up to the occasion and do not give up in accomplishing our goals. When #kidneywarriors are faced with complications of dialysis, second (even third) transplants - we rise above them- we persevere through personal resilience, family, friends, and normalization! Note: Writing this blog post was one of my favorites so far. I was so inspired by other’s life stories of resilience. Please, If you are a fellow Kidney warrior, share your story, I would love to hear more! Thank You! Staying positive when you know you have an illness that has, and will continue to interrupt your life, can be incredibly trying at times. Sometimes, I think that my life would be so much easier if there wasn’t one. Don’t worry, I am not suicidal - but with all that has gone on the last couple of years, I have had a day (or two) where I want to crawl into bed, stop dialysis, and never wake up.
When I have shared these thoughts with people in the past, the typical response is, “You’re depressed because of your situation. Once you get a new kidney, you’ll feel better.” 99.9% of the time I just smile and say, “ You’re right…” But, getting a transplant and what happens after are a part of this overwhelming fear I have for the future. Many people forget that a kidney transplant is another form of treatment for Chronic Kidney Failure - IT IS NOT A CURE. According to the National Kidney Foundation, live donor kidneys last 10-12 years and deceased donor kidneys last 7-10 years (National Kidney Foundation, 2016). Meaning, I’ll be looking at dialysis again in another 7-12 years depending on what kind of transplant I get. That is such a sickening thought to me, it takes the hope right out of me sometimes. When telling people about these statistics and expressing the fear I have for my future, the most common response is some variation of, “the medical field is constantly evolving…” Guess what? When I was 12, I was told the same exact thing by every single doctor, nurse, and family member. Now, we are here, 15 years later and still using the same treatment plan - the dialysis options and anti-rejection medications (some medications even cause damage to the kidneys in the long run and have some pretty NASTY side-effects) for after transplant. Lastly, after every transplant, your body builds antibodies. These antibodies prevent you from matching with a percentage of the population. Since I am waiting for my second transplant, I DO NOT match with 30% of the worlds population. The thought that in 7-12 (maybe longer) years, I’ll not only have to go through dialysis again, but I might not match to 60 percent of the world’s population by then. It is SO SCARY and SAD to think about the ‘big picture’ that is Chronic Kidney Failure - the ‘it’ in the room. Seems grim? Well, I can tell you that the 13 years I had with my transplant (even with the complications because of the anti-rejection medications), were the best 13 years of my life. I went to college - a college I had dreamt of going to since I was 14 years old. During that time, I made life long friends, traveled to different parts of the country, and spent time in Belfast, Ireland. I then went on to Graduate school, where I majored in Child Life (another life-long dream of mine). I got the most amazing internship at Hasbro Children’s Hospital in their ER Department. That was when I knew what my first “dream job” would be to be a Child Life Specialist in an emergency room at a children’s hospital. I finally achieved that dream when I got the job at Miami Children’s Hospital… MY DREAM JOB. Then My kidney failed and my life dreams had to be put on hold. After I moved back home to New Hampshire and was forced to temporarily quit my roll as a Child Life Specialist, I’ll admit, for awhile I felt like a part of me was missing. My work with children in the hospital had been something I was working towards for so long… and just like that…it was gone. After 3-months, I snapped out of ‘it’. I realized that my dream wasn’t over, it was just on pause. I realized my health had to become a priority. Once I came to that realization, everything just seemed to fall into place. I started nannying for my neighbor’s children. That role fulfilled my need to help children while utilizing my knowledge in childhood growth and development. Unfortunately, as the months went on, and dialysis began to wear down my body, I was forced to only work one day a week so ‘it’ started creeping in again. I have again moved past the ‘it’ and am working 3 days a week for a family in Cambridge while living in Arlington, Massachusetts with my boyfriend (I’m also significantly closer to Massachusetts General Hospital as well). Of course there are still times when ‘it’ starts to creep in, but then I remember those 13 years. I was healthy, thriving, and at my best. I can not wait to get back! Personally, that is what keeps me going through the needles, cramps, low blood pressure, etc. I know that dialysis is maintaining my health so I can be able to receive another transplant. When I think of the antibodies and my growing resistance to a match with every transplant, I have just been throwing myself into creating awareness about the ‘it’ that goes with Chronic Kidney Failure. For instance, the fact that right now (as I type ) 121,678 people are currently suffering through dialysis. Through Paired Kidney Exchange, there is the potential to save 90% of those lives. The Paired Kidney Exchange program is just one of MANY breakthroughs in the lives of Chronic Kidney Failure patients waiting to get the gift of life they so deserve. If we can make people aware of the change this simple mathematical equation made in the lives of #kidneywarriors, we have the potential to reach the right person who will create a way to zipper those kidneys in (which of course would be 3-D printed). Okay, so maybe not right away, but I hope you get the point. We need to make this go national. We need to make people aware that right now, kidney transplant is not a cure for Kidney Disease. But it can be, if we make a big enough fuss about it. Let’s rally together to create awareness about the ‘it’ that comes along with the Chronic Kidney Failure diagnosis. Phase one in getting myself and others a kidney through paired exchange is complete!!! Together, we have raised a total of $13,749! With these funds, I have been able to purchase not1, but 2 billboards in the Manchester NH area. One billboard will be a digital one on South Willow St near the mall of NH and will be up for 1 month. The other is a vinyl billboard located on Hanover St near the palace theater and will be up for 2 months.
That being said, phase two is now in full swing! Let's find a match! Now, this is where the #powerofthewordofmouth is pivotal in attaining the overall goal! One of the many reasons I am wanting to participate in Paired Kidney Exchange is because I have exercised all of my direct donation options. Meaning, all of my friends and family who were willing to donate, got tested, and were not a match. Due to their own convictions they chose not to participate in the Kidney Exchange Program. But I am so ECSTATIC to be able to participate in a program like this because it gives my donor a chance to not only save my life, but many others as well. Some friends and Family (as well as myself) have already reached out to the Ellen Degeneres Show. I am also going to reach out to Good Morning America and the Today Show because I want to make this go national. If this goes national, the bigger the chances are of the Paired Kidney Exchange Program reaching more willing participants. Therefore, saving more lives through the chain this program creates. In order to get over phase two (and onto getting Mr. or Mrs. Kidney), I need your help! If my story touches you in any way, please reach out to media sources, share on social media-basically, share, share, share! Everyday, people work towards attaining all sorts of different life goals - some easier to achieve than others. Most people my age are working to start a family, career, and finally being able to say they are paying off those student loans! Although those kinds of goals are certainly part of the dreams I have for myself, I have just one other that definitely is not common among my age group; I need a new kidney. Like with any large goal, I have mini goals in between to achieve - like getting this catheter out of my chest... This catheter not only prevents me from taking those nice warm showers everyone looks forward to, but is also a main source of problematic blood infections. This is because the catheter is a line going directly into your heart. Therefore, any germs that get in there, causes Septicemia. Typically, dialysis catheters are only used short term (3-6 months). This is because of the large risk of infection, decreased dialysis clearance rates (how well a person is being dialyzed), and they irritate the heart. Mine has been in for nearly two years - not by choice either. I have experienced all the side effects of having a catheter; the worse being the damage it caused to my heart. After a year and 8 months with the catheter and countless surgeries to get a fistula, I am happy to report that we have been successfully using the fistula with two 17 gauge needles for almost a week now. Which is FANTASTIC news, because that means I am half way to completing the goal of removing this stupidly annoying thing (that just so happens to give me life)! #2weeksdown2weekstogo In other news, the efforts of friends, family, and many people I have never even had the pleasure of meeting, has caused my GoFundMe page: www.gofundme.com/28by9es, to reach the halfway point as well! In just a little under a week, we have raised $5,576 out of the $10,000 goal. This is absolutely astonishing, seeing as I was so skeptical in the beginning.
Well, my skepticism has certainly turned into hope and faith...Not only have half the funds been raised, but my story and goal of a billboard advertising paired exchange, has gained some media attention. The New Hampshire Union Leader Newspaper picked up on the story, as well as NH1 News. This media coverage would not have been possible without Chantel McCabe of NH1 News Network and Katie Cote of the Union Leader. I can not thank everyone enough who has participated in this campaign thus far. To the people who have shared, donated, and reached out personally to other people, I am forever grateful. I strongly believe that without the #powerofthewordofmouth, we would not have made such gains in such a small amount of time. Let's keep this ball rolling so that not only my life can be saved, but others as well. We all have goals, some are attainable on our own, and sometimes we need a little help from our friends (or Sallie Mae) to achieve them. Getting myself and others a kidney through paired exchange is not a goal I can reach on my own, but with the love, support, and kindness of others, I know I have the strength to make it through the other half of this journey. This last couple of years on dialysis has not been easy. It has been especially hard to keep positive in the last 6 months because I have had two attempts (one that failed, and I almost lost the function of my left hand) to get a fistula for dialysis. This fistula is super important because as of right now, I have a catheter in my chest and can't shower. This last month or so has been the toughest because the second attempt at my fistula has led to one surgery and procedure after the other. Among these surgeries included two on my heart; one of these surgeries ended with me getting a stent placed. I was emotionally and physically drained...To say the least.
It's strange that when you feel the most defeated, people start to come forward...even without you asking. I personally attribute this to the recent passing of my Grandfather and God sending both him and the Holy Spirit to be by my side and send me the assistance I need (with a bit of work on my part and ALOT of help and encouragement from my friends and family as well, of course). Two weeks ago, when Brett Scott, owner of Scott Enterprises and President of Smokers Haven, approached with the idea of starting a GoFundMe page, I was skeptical. I had seen so many GoFundMe pages, for so many wonderful causes, that just seemed to go 'unnoticed.' After expressing my trepidation, Brett kindly provided me with the incentive and main idea behind my GoFundMe page. He told me that I should raise money for a billboard on a major New Hampshire highway. The total cost of the billboard being $15,000 for one month, Brett agreed to give me $5,000 if I was able to raise $10,000. DEAL - I couldn't be more grateful! Fast forward 5 days, and my friend Ashley from college called me and said, "You should think about making a website on Weebly. It's free, and all of your information could be in one place." She even offered to come over and help me set it up (because everyone who knows me knows I am in no way tech savvy). Man oh man, I am happy I listened to Brett and Ashley! Since publishing this website, I have had an interview with New Hampshire's newspaper, The Union Leader. I also have another screening interview with NH1 news station. In terms of the GoFundMe page, in the last two days alone, we have raised $1,025. There is still a lot to be raised, and sharing this website as well as the GoFundMe page listed under the Contact tab will help my cause. If you have the means to do so, anything you can donate puts me one step closer to my goal. I can not put into words how blessed and thankful I feel to have so many people that support me. The recent attention this has gotten has given me new hope for finding my new kidney and helping others in the process. #newhope #billboardforriley #powerofword #powerofkindness #powerofpositivity. |
|