Accessibility for all: Helping people connect with who and what matters most
No results found. Please try modifying your search.
We are writing to share the hardest decision we have ever had to make. After a long process of deliberation and evaluation, Christopher has decided to proceed with the heart/liver transplant process. He is now a candidate at Stanford Medical Center. After a lifetime with congenital heart disease, six heart surgeries, several other heart-related procedures, three pacemakers, multiple hospitalizations, and nearly dying on more than one occasion, Christopher’s doctors have advised that all treatments to keep his heart going have been exhausted: a new heart and liver is his only option. This will be a long, difficult, and costly process. We embark on this journey with mixed emotions ranging from terror and sadness to excited anticipation for a new lease on life and many more years with his wife, young son, and loving community.
Family and friends have asked how they can help. As of now we expect Christopher to be officially listed on the waitlist by the end of November. At that point, we simply wait “on-call” until the donated organs are available. When the call comes we have to get to Stanford within two hours. As we sort out logistics, it is clear that financial assistance will help. While Christopher has decent insurance, there are hefty copays for both hospital stays, testing, the transplant itself and a lifetime of continuing high volume medications (some of which are specialty medications with high copays or no coverage).
Christopher’s family has been warned that they can expect to hit the maximum out of pocket expenses for both medications and treatment which will amount to thousands of dollars. As well, there are many expenses simply not covered by insurance. Christopher and his family will be required to live near the hospital for three months post-transplant, after he is released from the hospital. Stanford is in Palo Alto, one of the highest rental markets in the country. During this time, the family will be paying double rent in order to live near the hospital and keep their current housing in Sonoma County. Lastly, there are also travel-related expenses, lost wages, possible professional physical therapy and caretaking, and other unanticipated expenses.
Stanford has made it clear that they cannot proceed with transplant without assurance that some of these expenses are covered. We are asking for donations and whatever small or large gift you can give. These donations are our hope for a longer life for Christopher and for his beautiful, light-filled boy to have a father for some more years to come. Your gifts of money are so much more than just that.
We have always tried to live our life with community as a central value. We know that the community we have tried to nurture and support has also been what has helped us survive thus far. Your kindness has kept us hopeful, and quite honestly sane. We are blessed to have you in our lives. We know these are tough times for many people, and completely understand if you are not in a position to donate. Regardless, we appreciate your listening and wish you and yours health and happiness. Thank you.
Details of Christopher’s History and Current Condition
Christopher was born with a Transposition of the Great Arteries, First Degree A-V Block, and a Ventricular Septal Defect. In lay terms, his plumbing was poorly constructed: blood that should go to his lungs to be oxygenated pumps through his body, and blood in his lungs has already been oxygenated.
Shortly after birth, He was airlifted to another hospital and had his first surgery at six weeks old. He had other surgeries at ages three, eight, thirteen, twenty-seven, and forty-three (the last of which sent him into renal failure almost killing him). He has had surgeries at the Mayo Clinic, Stanford Medical Center, University of California San Francisco (UCSF), and a hospital in Texas. He has had three pacemakers, a device called and occluder to cover a hole in his heart and titanium plugs placed in his heart to repair other circulatory issues. In 2016, he was diagnosed with cirrhosis of the liver and was discovered to have large varicies that were at risk of causing internal hemorrhaging. He had those banded in 2016 and since has only had small varices.
Currently, Christopher has been diagnosed with Congestive Heart Failure. He relies on 22 pills a day, a high volume of medical appointments and hospitalization when needed. In recent months his kidneys have shown signs of injury and weakness due to his weakening heart. At times his kidney labs revealed he was heading towards kidney failure. Consequently, he has been in and out of the hospital in recent months. As well, as a result of one surgery he had in 1988 he developed cirrhosis (40% of patients who get this surgery also develop cirrhosis). The sooner the transplants happen, the better the outcomes will be. The sicker Christopher gets waiting for a transplant, the more likely he is to have complications or other poor outcomes.
Financially, Christopher and Jen get by on mostly Jen’s income with some federal disability money that Christopher receives. They make ends meet but their income alone would never cover the forthcoming expenses.
Christopher struggles to get through most days as he has so little energy or ability to exert himself. Even simple house hold chores or playing with his son can be exhausting. Fortunately, with the help of wife, his parents, and his in-laws he is able to do what needs to be done and enjoy the many small, sweet moments in a day. That said, despite the privilege of this assistance, it will not be enough to get him through the journey of his transplants and we hope that our community can step in to help as well.
Christopher, Jen and Rylan
Hello Everyone. On January 16th I celebrated six months with my new organs. It’s incredible to feel so good and to have energy I haven’t had since I was young. In the last six months I literally shed my skin, grew new nails, and watched skin conditions and varicose veins just clear up. I am able to move, run, and exercise in ways I haven’t in years. Best of all, I can play with my four-year old boy in the physical ways that he has longed for but only his mama, relatives and friends have been able to give him. Now, papa can do it too. My donor and his family gave me so much more than just two organs. Transplant is not merely a physical experience however, and emotionally and spiritually, it has been more challenging. There is an understandable sense that someone in my position would feel nothing but joy and gratitude. While I do experience both of those, the reality is more complex. Any life-threatening struggle is intense for everyone involved even after, and maybe especially after, you survive it. Returning home to a house with two other people who’ve also been through this huge, scary, and exhausting experience is… well as a friend says, it’s a trauma lasagna. It is understandable that we would struggle after such an experience, even if it went very well. Most people I’ve talked to about this, including counselors, are not at all surprised. But it took me back and has been harder than I’d anticipated. That said, we are slowly making our way through it and re-learning how to be a family and figuring out what that may look like moving forward. We are ever grateful for everyone’s love and support through every step. We also have begun feeling a strong draw to get back into life. So while I am immune-compromised and we still need to take precautions, please don’t assume we wont want to come to your party, dinner, or event. This also includes giving back to this community that has given us so much. So if we can be of any help, in any way, please give us the opportunity to do so. It would not be a burden but an honor to again participate in the mutual indebtedness that allows communities to thrive.
Hey all- while last weekend was my first weekend I was allowed to go home, my care team informed me that when I go home this weekend, I don't need to come back (except for routine appointments and check-ups, of which there are many in the first year). This is a huge milestone and I feel so fortunate to have done this well so far. The road ahead is still full of challenges, concerns and healing but I feel ready for it thanks to Jen, our families, and all the support we are getting from you all. So thank you!
I’m still dealing with fluid retention and some other small complications. Despite this, things seem to be going well and moving in a forward healing direction. I definitely feel stronger each week while also having up and down days in equal measure. All that said, I am happy to report that starting next week I will be getting to go home on the weekends. Hopefully, that will soon shift into me going home for good. I’m still very much recovering so I am not able to visit much with others and still have to take many precautions as I am very immunosuppressed at the time (but will be less so as time goes on). Jen is feeling less stressed these days and still doing an amazing job of caring for our son and for me. We also want to give a big thank you to her parents, May and Paul, who have provided a great deal of childcare and overall support. Thank you May and Paul! And thank you all for the deep-hearted prayers, love and logistical support you’ve all sent our way. We are blessed with you as our community.
With love from a new heart,
Christopher was discharged from the hospital last eve…. He’s doing well with his recovery. He’s in a comfortable home and being well cared for.♥️
He will be going back weekly for clinic visits with his team and has home health coming to the house for visits throughout the week.
I can’t believe it’s only been a month since his surgery, it feels like a lot longer ago that he went into the OR.
♥️Thank you for keeping us all close in your thoughts and hearts and for all your prayers and support. We’ll continue to update as time goes on. The road to recovery will be long and not without difficulty, and, we have so very much to be grateful for. May that continue to be the leader in the path ahead.
Hello all. One week ago Christopher went into and came out of surgery and he is currently doing well! He is continuing to recover in a pretty incredible way. The nurses and doctors are very pleased with his progress each day. His body it’s accepting the donors heart and liver and though the recovery road will not be without setbacks, he has been very fortunate thus far. Your continued thoughts and prayers are always welcome! Thank you.♥️
Well it has been a busy and intense last three days. Christopher got the message that his Stanford team accepted an offer for a heart and liver donation on Friday morning. They scheduled the surgery for Saturday morning and after a 14 hour double transplant surgery, successfully transplanted Christopher‘s new heart and liver. His surgery team is continuing to finish up parts of the transplant process to make sure he is in the best condition to start healing. He is in an induced coma-like state for a few days and will likely be in the ICU for a week or two. As of this afternoon the ICU and transplant nurses and doctors feel that he is in a relatively stabile state for what he has just gone through. This is good news.♥️ This will be a long up and down process of healing over the days, weeks and months/year ahead. Thank you all so much for your love and support. We couldn’t have done this/can’t do this without you all.
Dear Friends- Today is the day. I will be going into surgery in 6-12 hours. I can't tell you how blessed I feel by your consistent support, love and prayers. It has made a phenomenal difference and made things easier for me, Jen and Rlan. Please send a little extra good juju tonight. Much love and gratitude.
Hello Everyone. Well, I was informed today that I am officially moved up to status 2 on the transplant list. This means I will get my transplant within the month. This is good news and of course extremely daunting. A lot of mixed emotions. But I have been preparing on multiple levels for this for quite some time and I am healthy enough to do well in surgery and after. My goal now is to make it home by Christmas. Thank you all for your amazing love and support. Jen, Rylan and myself are so lucky to be in community with you. So much gratitude and Love. For everyone and everything.
“Even damnation is poisoned with rainbows” - Leonard Cohen
Good day friends. So after eight scans of various types, Stanford is still unable to find cancer. That said, it is also still their belief that I have cancer due to a rapidly rising lab value. Unfortunately, if that lab value hits 1000 I become disqualified for transplant (which at the current rate of rise is about 3-5 months). So to hopefully expedite the transplant, they have asked me to be admitted to the hospital and wait for surgery there, eventhough it is still months away. Being in the hospital will allow them to advocate for me to be higher on the waitlist. However, this means I will be in the hospital for several months now and then 1-6 months post-surgery (possibly up to a year total). So, sometime during the week of the 20th, I will begin this next phase of my journey. While it is daunting my concern is also with my wife and son who will suddenly be basically a single mom (with some big help from the grandparents). I ask for your thoughts and prayers to be sent their way as well. Thank you for all your loving support. I could not have done this without you. Blessings.
I am officially back on the transplant list today. They said the adrenal gland tumor is too small to worry about￼. They are also still looking into possible liver cancer and I will have a couple of more tests coming up. But it’s good to be back on the list at least. ￼
Hello friends. Well, in the last two months I have had four scans and many blood tests and all results are currently inconclusive. They are investigating the adrenal tumor I do have but also suspect, because of some of the blood results, that I have some other cancer, likely in my liver. I have more blood work and more scans ahead and they told me yesterday that it will be a “long, drawn-out process”. That said, if they can rule out any danger from the adrenal gland tumor at least, then I can get back on the list for the time being. More updates to come and as always, thank you for your love, support, positive vibes, well-wishes and prayers. It all helps. Happy Holydays.
Hello Friends. There have been some complications in my transplant process as of late. I have been temporarily deactivated from the transplant waitlist. This is a result of the fact that they have found a tumor in my adrenal glands. I am currently doing a series of tests to determine what type of tumor exactly and if it is malignant or benign. Even the latter can be problematic and may require intervention. Though I am doing pretty well all things considered and working hard to stay as fit and strong and healthy as possible for surgery, this is disappointing and concerning. It will take a couple of months to sort this all out. In the meantime, thank you for your continued love and support. It means a great deal to me, to Jen and to Ry.
Well my kidney and other complications are about as good as it's going to get so Stanford has decided to proceed. As of today, I am officially listed as "active" on the transplant waitlist. This means that at any day, at any time, I may get a call asking me to get to the hospital within four hours for transplant surgery. They suspect it will be a while, but no-one really knows. So finally, the journey, full of excitement and terror like any worthy journey, has begun. Thank you everyone for your support. You've helped me prepare in ways you'll never know. Many blessings.
We are excited to announce that between Go Fund Me, Help Hope Live, and cash donations we have met our Fundraising goal! We will keep the sites open and available for donations but we want to say we are so grateful for and awed by our community. We are privileged to be connected to some people who were able to give big and there were others who I know have their own economic struggles and couldn’t give big- yet they still did. And there those who gave small, heart-felt donations that also helped. Many of you helped us get the word out through reposts, media, and word of mouth. And some of you like Grace Villafuerte,@Jen Balletto, and Jeff Rooney organized fundraisers for me. Many others offered food, labor, rides, childcare and other caring gestures. It all mattered and it all made us feel very supported less afraid. My rusty old heart is shiny today. Thank you everyone and we hope you all know you can call on us for support when you need it. It would be our honor. Thank you!
Well, it seems western medicine is a much softer science that it's hubris would let it think. Despite all of the medical miracles I seem to be at the edge of what western science has to offer. The second treatment helped my kidneys but not enough for them to go forth with the needed procedure that would result in greatly reduced risk at time of transplant. So they will think, cavort and consult until sometime in January when they promise to have a new plan. In the meantime, I will be sent home today or tomorrow with a PICC I-V line (a long-term IV line for home drug administration) and a life vest (which will shock me if my heart goes into a bad rhythm). This will take away my ability to drive. So it seems that the old art of digging one hole to fill another will be in full play, at least until transplant sometime next year.
GOOD NEWS: I am a mere $6,000 away from reaching my $75,000 fundraising goal. For this, I have a gratitude for the community I live in that is unbreaking my heart. The awe I have at people's generosity is itself a healing force. Thank you everyone. Thank you! Many blessings.
A nice article in the local newspaper. Thanks to Chris Smith at the PD for this: www.pressdemocrat.com
They have decided to try one more drug on me as a last-ditch effort to address the kidney issues. So I'll be here through the weekend at least. Stay tuned...
gratitude to my compeñera in heart troubles Jen Balletto for making this happen. And even if you don't buy one, check out her other cool offerings! getcreateit.com
Unfortunately, the kidney treatment has only made things worse. So that puts on the table a number of complications. Everything is not sort of up in the air. Also, the hospital may also shut down to everything but COVID in which case the entire process would be on hold. I will likely be sent home, temporarily at least, in the next few days. A pleasant surprise, but for unpleasant reasons.
Off to the Hospital on “Giving Tuesday”
Hey folks. Today I head to the Stanford Medical Center for treatments on my kidney. There is a chance I’ll come home for a week or two around Christmas but either way they are keeping me until the transplant (which is still weeks or months away). Today is also #GivingTuesday, created in response to the consumerism of “black Friday”. It’s a chance for everyone to put some of those holiday funds to a good cause if they can. And there are a lot of good causes. Please give to whatever moves your sense of love and justice. I would never want to compete with those who are in far more need than I, and as many of you know, I too am raising money for my heart/liver transplant (helphopelive.org ). As the old adage goes: “The heart is a muscle the size of your fist. Keep loving, keep fighting.”
Nov 26, 2020
HOLIDAY CHALLENGE GRANT GIVEN FOR CHRISTOPHER's HEART/LIVER TRANSPLANT JOURNEY!
I am grateful for so many things this year. In this moment of personal crisis I somehow feel MORE grateful than I ever have for so many things. Among those things for which I am grateful, I have this amazing community who has stepped forward to form a safe place of support for me. This has come in many forms but lately, donations for my medical expenses.
To celebrate the holiday (as well as offer an alternative to the consumption of black Friday), two individuals who wish to remain anonymous have offered a $1000 "challenge grant". If I can raise $1000 more in the next 48 hours, they will match it.
Many of you have given so much already and some of you I know are strapped right now and can't. That's fine. But if you have considered giving but haven't yet, or think you want to give more, now is the time. I appreciate it and am grateful for whatever people can offer be it money or prayers or jokes or whatever!
Check out Christopher's interview on KPFA''s Pushing Limits. Christopher discusses his upcoming transplant and what it's like being a father in the face of such big events, as well as the things he is grateful for even with all of this going on: kpfa.org
Raising the Goal
My family and I have been so moved and inspired by the generous outpouring of donations, well-wishes and other help. We feel so supported. We are both stunned and thankful that in less than a week we have almost reached our original goal of $25,000. Since, making that goal (somewhat arbitrarily as Stanford gives no guidance about this) I have spoken with folks who have previously had transplants and been advised to raise my goal. I am reminded that I am in a sense setting up a fund for life since I’ll be on expensive medications for the rest of my days. As well, due to ongoing kidney issues, there is some consideration of a kidney transplant as well. With or without that, doctors have told me it is likely I’ll need kidney dialysis for at least some time after the surgery. They also expect that due to my complicated history my recovery both in hospital and living near Stanford may be longer. It is uncertain outcomes and a financially more intensive post-surgery situation that I did not consider originally. Therefore, I now set my goal at $75,000 to ensure that these possibilities will be covered. They tell me too that even in the best situations, things can get expensive. Thank you for all your support thus far. If you are able to give more, great and if not your offers of labor, spreading the word, and simply healing thoughts and prayers mean more than you will know. Thank you!
sending love and healing from all 3 of us to the 3 of you.
Jen, Christopher and Ryan - our best wishes on this journey, knowing you treasure each day together. Marcy and Jerry Clausen
May your heart feel the love of the community you help to heal. Sending love and wellness from Kim and Rick.
Sending all our good thoughts to you and your family. prayers for you all
I was one of your teachers at Montgomery High School. I very much enjoyed knowing you then. I last talked to you when you worked for SAY. Please know that I am thinking of you and wishing you well.
Best wishes to you and your family
We wish you all the best in your campaign and hope you are able to come home soon to your beautiful family. You have our sympathy for having to make this decision, and our hope for bright possibilities for you all because of it.
God bless you and Merry Christmas! C & R Bacher
From a fellow Hospice social worker with much love.
Given with great hope from a fellow social worker.
From one social worker to another, my prayers to Father God for a miracle has been taken to Him as sweet incense, may you family be comforted and keep the faith!
Sending you a giant hug, my friend. Sorry this isn't a bigger contribution.
Never give up!
Holding you in love and light at this difficult time. Candles are lit
Holding you all in my heart and thoughts during this tremendous healing journey
Hello to you and your family sending my prayers up to heaven for a Miracle to Happen! Helphopelive help me when I needed a Kidney Transplant. I often tell people this organization is truly an amazing fundraiser. Keep the Faith and I will continue to pray for you and your family.
Blessings to your beautiful, loving family!
Sending prayers of love and support to you, your husband & your son, Jen.
I've never met the Bowers, Parr family but we need to all step up for it is folks like them who have dedicated their lives to help others. For all they do we owe them our support. May their lives be brightened by our efforts
We are praying for you!
Wishing you all the good luck as you go through this harrowing ordeal.
My husband, Dr. Stephen Jacobson had a liver transplant.
He was a very strong advocate for organ transplantation.
I\'m sending you his positive vibes and a white light as you make this journey.
Looking forward to having you back in Sonoma county!
Chris---Your life is so special to all who love you.... Hope we can help in a small way to strengthen you towards your recovery and the rest of your life.
Mary and Michael M.
Keeping you and your family in our prayers
Best wishes on your journey.
the courage exhibited by chris should inspire us all in this moment of world wide stress. our collective efforts can oversome
Be well, the world needs you around.
Keep up the good fight, Chris!
Wishing you a speedy recovery and good health!
Keep fighting, my friend! All my love and healing energy is with you and your sweet family.
Jenn, Christopher and Rylan - Our thoughts and prayers are with you in this difficult time. It is also a time of hope and miracles as Christmas approaches and we pray that this will give you peace. Nick & Cheryl Morell
Nick & Cheryl Morell
I pray for you and your family that you receive the gift of life!
Beaming extra love your way
Hi Chris and Jen,
Thanks for reaching out and letting those of us who\'ve been out of touch know what\'s going on. Whew! My former wife went through two organ transplants, so I have an inkling about the incredible journey you\'re on.
I\'m envisioning a brilliant set of heart and liver with the right blood type, antigens and all matching criteria lined up for you, Chris. I\'m also wishing for a skilled harvest, transport, and transplant process. I also envision the right immunosuppression drug combo with excellent acceptance by your body!
Chris and Jen, you both do so much for the community at large that I thank you for letting us give back to you.
My thoughts and prayers are with you.
Sending you and your beautiful family lots of love and healing.
Wishing you all the best for your treatments, and for healing.
Have faith in yourself
Sending loving and positive thoughts your way!
West county, we can help each other!
Daniel De Kay
Blessings to you on this arduous journey. We send encouragement and support.
Pam and Bill Austin
may you be healthy, safe and happpy
I read your story in the Press Democrat. I\'m hoping being in the newspaper that it gives you a big jump start! I know the PD readers care very much about our community.
Best of wishes to you and your family.
Good luck Christopher. I had a heart transplant 1/4/15. Doing well and praying the same for you. Jim
You are in my prayers for a successful campaign, successful transplant surgery and a wonderful new life.
Thoughts and prayers from Timber Cove.
Love and best wishes
Many are praying for you!
Keeping you and your family in my thoughts and pryers.
Wishing the best for Chris and thanking him for his loving efforts on behalf of Jim Foser.
Christopher, you can do this. I had a kidney transplant in 1994 and have had no issues. I'm a member of Transplant Recipients Internat'l Org and you can check us out at trioweb.org. I will contact May about some members who can talk with you about their heart and liver transplants. Sending big optimism to you!
Love towards a grand recovery.
Sending blessings and healing
You are one resilent person! You have this behind you already! I am praying for you and your whole little beautiful giving sweet family. Miss you guys. Hugs!
Gwen Fox wheeler
Chris...Kitty just shared with me what you’ve been going through. Many blessings to you. -Naomi
Hoping and praying that the next year brings you so much to be thankful for, but especially improved health and strength.
May your new heart and liver be infused with the vibrant aliveness and love that your beautiful spirit exudes.
Scot & Sky
all love and healing to your precious heart
You have such a big heart for everyone else! May this journey bring you health & happiness with the support of all your wonderful family and friends. Sending you love & and huge hug!
May all the forces of love and healing gather behind and around you through this passage, you are so loved
We are all gathered in small, quiet circles of love and prayer for you, Christopher, while you embark on this healing journey. You already have a heart of gold, so may your next heart and liver find a safe home in your courageous spirit.
Much ❤️To you Chris and your family - you are in my thoughts and ❤️
I believe in miracles and I believe in you.
Christopher Bowers has always stood together with people and communities struggling for a better, more just life. It's time for his community to stand with him. Hoping for smooth healing and recovery. ❤️
For someone as giving, as brilliant as passionate about justice and community as Chris, this support is the least that we can do.
Debra and Bruce Harrow
Sending love and healing thoughts!
Katie and Rex Boyd
Sending love and strength
Abbie St Marie Kearns
Holding you all in my heart Christopher, Jen and your sweet boy!
Be well Christopher!
Lots of love and healing to Christopher and his family.
Sending so much love to you and your family Christopher. Hoping you get all the care and treatment you need and support for your recovery. Sending faith, hope and wishes of a long life well lived with friends, family and community by your side.
Sending you best wishes for a journal of health and wellbeing. Thank you for your work for social justice and remembered that your community is with you.
May your next heart be as beautiful and kind as your first heart. Blessings.
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Christopher James Bowers
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087
Accessibility for all: Helping people connect with who and what matters most
Building leading-edge mobility products
One of the largest mobility dealers in the U.S.
Advanced medical care and air transportation when you need it the most
Consult with specially-trained pharmacists, get your medications for pickup or delivery and more
All news, and all that matters to you
Your first step to optimized communications
The event for the disability community
Philadelphia's Hometown Bank℠
Born to connect, empower and inspire the rare disease community.