November 28, 2023
TURKEYS AND TRANSPLANTS
Happy Thanksgiving! Do you actually like turkey? I really don’t, so my plate is filled with green bean casserole, squash, candied yams and other holiday yummies. Also, I save room for one medium-sized slice of pumpkin pie with whipped topping.
GRATITUDE
At my family table on Thanksgiving, we say what we are thankful for, and then I lead a prayer before we enjoy our dinner. Since I will be absent from the table today, I will share my gratitude list and prayer with you.
Most of all, I am grateful for my friends and family who are the lights in my life.
I appreciate the staff and community of MCCLV who provide community and instill faith in one another.
I am thankful for the freedom to love who I want and choose who and how I worship or choose not to worship. These freedoms are not guaranteed everywhere.
I am grateful for the fortitude to stop unhealthy habits and the courage to start healthy ones. So much transformation in my life!
I am grateful for my life, which has been saved more than once here in recent months.
I am thankful today and forever for your kindness and support.
TIME FOR A PRAYER
Here is my prayer for my family and the world this Thanksgiving:
Gracious God,
We dedicate this meal to our LGBTQ+ siblings in Uganda where it is illegal to be gay. God of peace, we pray for an immediate end to the violence against this community. We especially pray for the new Metropolitan Community Church of Uganda which MCCLV helped fund. May they worship in peace always.
We are thankful God for love for one another that is surpassed only by your love for us. We recognize the absence of friends and family we’ve lost over the years, and we know they are with Jesus at His heavenly banquet table. We praise you almighty God for gathering us together and providing us with the love and support of our extraordinary family. We enjoy these moments with awareness that life can be fleeting and fragile, so we pray for our health and wellbeing in the years to come.
As we sit down together in our warm home ready to devour this huge feast together, we boldly request that you will provide us with the fortitude and dedication to meet the needs of our unhoused and hungry neighbors.
Lord in your mercy we plead for peace where there is war and understanding where there is ignorance in places such as the Ukraine and the Gaza Strip.
Lastly, gracious savior, we pray that you will provide me with a heart soon. Please look after the well-being of every member of my family, especially my nephew Luke.
We praise you and thank you creator God. We welcome your presence in our home and in our hearts. Please bless this tasty, nutritious food and all those who eat it.
In the name of Jesus the Savior we pray. Amen.
REFLECTION
I am looking forward to quality holiday time with family and friends. The holidays will be rough since I can’t go home and be part of the annual festivities. Although I’m a grown man, I am overcome by a sense of loss. Heart disease is stealing me away from my family and work life.
Yet good news is always just around the corner. I have learned that physical and emotional pain are temporary states but God’s love is forever. Please stay in touch because your messages and visits are my links to the world these days.
And lastly, Happy Thanksgiving! I am truly grateful to have you in my life. Your prayers and support mean a great deal to me. Peace and blessings to you!
November 23, 2023
Grateful. Always.
As I anticipate Thanksgiving, I am grateful for friends, PT, and the quick responses of my treatment team.
Over the weekend, I had four friends here for visits. Cheryl and I had a wonderful visit because we have many common interests to discuss. In fact, Cheryl roped me into the role of Stewardship Chair alongside her on the Board of Directors at MCCLV. Her faith in me is surpassed only by her faith in God.
Later that evening Susan stopped by. She is my most trusted confidant because she is non-judgmental. Susan is among the VIPs of my life. Early last Sunday, I attended online meetings about the budget that our Board had prepared among other church business followed by our weekly worship service. Check out MCCLV.org for details.
Later that day, I had an enjoyable visit when Mark and Keith swung by. They brought my favorite snacks, which are salt and vinegar Poppables and Coke Zero. So they can come any time! Just kidding - I’d still let them in if they just brought Twizzlers or Reese’s peanut butter cups! LOL
Today I received thirteen amazing cards from the students of my friend Allison from college who runs an after school program. The cards were colored by the children who learned about how to love others the way they hope to be loved. In with the kind cards was a Christian coloring book and 48 vibrant colored pencils.I can now pass time reflecting on Bible quotes while coloring the pages. I appreciate the artwork and gift very much!
On Monday morning Aaron, my physical therapist, brought me to the gym on the other end of the floor or in my room. My fear of chest pain during exercise fades away with Aaron because with him I am in good hands. I smiled when he entered my room! I rode the exercise bike and lifted some light weights over my head while squatting. Suddenly, an announcement came over the loudspeaker, “Ben Phillips, please report to room 846 immediately.” It was repeated three times across the whole hospital consisting of 14 large floors! I quickly walked back with the physical therapist only to discover that my heart rate spiked while I was exercising. That set off alarms on my monitor back in my room. Aaron had forgotten to tell my nurse he was taking me to the gym. Ooops!
My new motto is “Nevertheless, he persisted.” I work with some discomfort while trying to avoid serious pain. My strength is increasing with PT, and my walking is definitely faster and more stable than it was! Also my weight is under control and going down (more slowly than I’d like). Losing weight so I have a healthier build will enable me to land a donor heart faster.
As for Monday night football, I was excited that the Eagles beat the Chiefs. I am still astounded by my newfound fascination with sports. Surprisingly, I am really enjoying these football games just as much as I liked watching the Phillies in the MLB playoffs. Next I want to add college basketball to my repertoire, but please never ask me if I can play. I am clutzy. I just want to root for Syracuse University where I was born in a nearby hospital.
When I walked the halls with mom on Tuesday I had sharp chest pain, so we returned to my room immediately. The next 14+ hours consisted of a drastic migraine and severe chest pain. I am still honestly hurting now at 4 AM. I was given a caffeine pill, which resolved the migraine but is one reason why I am up long past bedtime to write this blog. The other reason is that the chest pain is not abating fully even though I have been given maximum doses of several meds.
The CT scan and troponin levels indicate there is no emergency in my head or chest. Doctors and nurse practitioners have been in and out to formulate a plan and check on my status. My nurse Tatyana spent the second half of her shift solely with me. At 34 weeks pregnant, she hustled impressively to provide ice packs, pills, IVs, and injections. She stands out on this incredible team because as experts extra effort to ensure I received the best possible care. My dedicated mom is spending the night on the couch in my room.
The pain is temporary, and I am clearly in the right place. Pray for my well being please as I pray for yours, and good vibes are also always welcome! Happy almost turkey day!
November 14, 2023
Back on Track After A Brief Derailment
Our journey to Ben 2.0 was derailed last week in a very scary way. As many of you saw on Facebook, I was rushed to the Cardiac ICU on Thursday night. My blood pressure plummeted to 60/40 and my temperature was 103.2. I had whole body shakes and a severe migraine. I was later diagnosed with a blood infection. The doctors moved my transplant status from 3 to 7, which means that due to illness I wasn’t eligible at the time to accept an organ.
Of course, mom drove to the scene in the middle of the night and was with me as the central line was put in. I was in and out of consciousness, so I don’t remember many details of that night or the next day. That’s probably a good thing because it was terrifying. Chris visited on Saturday all the way from Brooklyn. He brought a Mario Bros drawing from Luke and a Thanksgiving decoration. These are both reminders that soon I will see Chris, Rich, and Luke for turkey day.
I was equally thrilled to see Matt and Brad who came by on Sunday. They made the journey by car from Connecticut just to visit with me for a few hours. Rumor has it I will see other family members over the holiday as well. I can’t wait to spend as much time with family as possible. If I’ve learned one thing in my time here, it’s that faith, family, and friends are the keys to a happy life. Life is short, love hard!
So far today I participated in physical therapy. I did some strength training and walking. These exercises are important so I will be strong enough AFTER surgery to come home without delay for rehab. I really like working with Aaron, the main physical therapist assigned to me. He makes a point of connecting with me, and he takes notice of all the steps I take to stay on the right path. Later today, I’m scheduled to see my psychologist. Juan helps me stay centered and goal-oriented while confined to the hospital. This amazing place has so many great resources. I may as well take advantage of them all!
Overall, I thought you would like to hear the update that the scary time has passed and I am back to status 3 again here at UPenn hospital. I’m eligible for a heart at any moment but am prepared to wait as long as it takes. So I’m slowly putting my new room together and resuming my routine. I have a great view, as you can see in the new pic in the updates album. Have a wonderful week, and please stay in touch as we journey together to Ben 2.0!
November 2, 2023
Sweater Weather and Mario Kart
Welcome to sweater weather! Currently, I’m having an exceptional week. I’m not having much pain, and I’m adapting to a routine in physical therapy. So far this week I have been tolerating the exercise well. I get quite tired afterwards and need to rest, but that’s to be expected for someone with advanced heart failure. The reason for PT is to keep my strength up so that after surgery my recovery will be easier. I also need to diet and exercise to lose weight so I can be matched more easily with a donor. The goal of PT is to maintain strength and not spend too much time laying around. I hope the wait for my heart won’t be too much longer. Sometimes for a moment I think about the poor soul who will give their life so I can live. That’s sad to consider, and I will hold their family in prayer. However, they are giving me the gift of life even as they pass into heaven. Enough heavy stuff, how about some fun news?
My brother Chris came to visit last Saturday, and soon after his trip he texted that he, my brother-in-law and nephew will be coming to visit me in the hospital on Thanksgiving. I haven’t seen my nephew since before I came here in June. I have seen pictures and FaceTimed occasionally, but there’s no replacement for that in-person visit. Sadly, I missed the annual summer vacation on Long Beach Island where we all gather together and have some family bonding time. My nephew also gave me a Nintendo Switch as an early Christmas gift so I can have some fun while I wait around for the big day. Of course, I stayed up very late last night learning how to play. It’s been awhile since I attempted to play video games. I will challenge my nephew to Mario Kart when he comes for the holiday. Such a great event to anticipate!
Some of my favorite days are when folks visit. My mom comes twice a week. She actually spent her birthday with me on Halloween. I can’t state often enough how grateful I am to her and all of you for the ongoing love and support. Last week, my good friends made a trip to see me and we even got outside. My pastor, Rev Goudy visits routinely as well and is always sure to check in regularly and provide pastoral care as needed. God works miracles through my friends and family! You all are really stepping up to provide all kinds of much-needed support during my time of greatest need.
Since UPenn is an Ivy League university, they have a highly regarded med school and the students come to work with us often. Only the best of the best work here, and the care is truly stellar. We see nurses in training. As a teacher, I appreciate all the learning that’s taking place because I know that someone who is an effective teacher really knows their stuff! Please stay in touch, and as always thanks for reading.
October 18, 2023
Watching Sports (Me? Sports?!) While I Patiently Wait
Hello from UPenn hospital! My mood has been happier since I stepped outside last week for the first time since June 29th when I came here through the ER. I’ve been able to walk more, and I’m experiencing somewhat less chest pain day to day, but it comes in waves. I still have rather strict limitations on what I am capable of doing and that will be fact till I get my new heart.
A common question I get is where am I on the list to get a new heart. The answer is that the patient is not privy to that information. The doctors know but dodge that question for HIPAA reasons and do not give me unnecessary hope or discouragement. The rankings shift based on the urgency of needs in the region. Also, the donor heart has to match in size to mine and have a similar percentage of antibodies (one aspect of the science of this journey that I don’t grasp). So it’s all in God’s timing. It truly is beyond my understanding, so I have let go of the anxiety and expectations that it needs to happen right now. Instead, I’m trusting God to deliver on God’s time. I’m not sure if you are spiritual or religious but that is how I look at it, and it gives me great comfort to let go and let God. I must remain vigilant and always be in good health, properly medicated, and ready to roll should my day arrive. My mom has a go bag packed in her car so as soon as she gets the call she can be on her way. Smart lady!
What else is new? This week I’ve renewed a focus on healthy eating. Thanks to my mom and brothers, my new mini-fridge is well stocked with fruit, vegetables, sparkling water, and healthy snacks. I’m sure to you that seems like an everyday obvious scenario, but for a long term patient in a hospital like me the fridge is rare and its contents give me agency. I can have favorite foods and keep food cold so it doesn’t always have to be over-processed junk. Thanks mom, Matt, and Chris! We’ve had wonderful visits as a family recently. The effort they are exerting to make sure my needs are met has been inspiring. Truly I am blessed with an extremely thoughtful and selfless family, and I thank God every day for them.
Without the fridge, it was very easy to eat junk food and lay around for the past 100+ days since it’s often quite boring here and it hurts my heart terribly to move as much as most people do. However, I worked WAY too hard in the year prior to getting here to lose those 120 pounds to get lazy and gain ‘em back now. That’s why I’m cutting back on carbs, sweets, and processed food. I’m not trying to lose weight so much as maintain and keep my BMI out of the obese range. The doctors vigilantly track weight changes, and I must step on the scale first thing every morning. Believe me when I say that number needs to go down or stay the same!
Another fun piece of news in my life is that I’ve become a Philly sports fan. I rarely if ever watched football or baseball before coming here, but now I’ve been glued to the TV any time the Eagles or Phillies have played. It breaks up my day and energizes me, plus it helps me bond with friends, family, and staff members. When in Rome, right? The nurse last night came running to my room alarmed by my shouting, but she was immediately relieved when she saw I was shouting at the TV because the Phillies scored a home run. My dad, may he rest in peace, would absolutely love this turn of events! This newfound joy watching sports is a thrill I want to keep when I get home. Of course, Eagles are having an amazing season, and Phillies are in the playoffs, so I’m tuning in at an exciting time. Go Harper!
As always, I’m in awe of your support and generosity. Recently, people have sent lovely cards to my mom and me. Out of the goodness of their hearts. One family did our fall landscaping and sent my favorite homemade baked goods. Another friend gave my mom a gift card toward her gas money to travel here. One family friend gave us a coffee maker and Starbucks coffee for my room, so I can indulge in my daily habit. Others have given financially to this fund with a generosity of spirit that is awe inspiring.
Regrettably, our nation does not provide us with a national healthcare system, so I need more financial support to cover medical costs. Because of recent donations, we are close to our initial goal of $8,000, but the bills keep rolling in, and I certainly can’t work right now. Since I’m an independent contractor as a tutor, I do not receive pay when I can’t work. I have no sick time, and I have no benefits from work. Believe me I’d rather be healthy and working!
How can you help? There is much to do. Foremost, please keep my family, as well my heart and well-being in your prayers. Also it helps greatly if you share this post on your social media of choice. Friends of friends and even strangers have joined the cause because kind folks like you have shared my link! Please personally encourage your friends and families to join the amazing list of supporters by giving if able.
In return, you’ll get to enjoy Ben 2.0 when he chooses to emerge! Ha! I promise individualized thank you emails from the hospital now and big hugs when I’m well enough to see you again! Check back here next week for another update. Love to all, and please stay in touch. Even a quick comment on my Facebook post would boost my link up so more people see it in the top of their feed. Thanks for reading!
October 10, 2023
Hello from my hospital bed. We are now on Day 91 of this journey to Ben 2.0. Your cards, texts, visits, and donations continue to flow in. I have such deep appreciation for each of you and feel so well-loved. Thank you on behalf of my family for your ongoing thoughtfulness and generosity. The best way to help is to spread the word. Please share the link to this site on Facebook if able so we can reach our goal! We have found that friends of friends - even strangers have been extremely generous. So please share the link far and wide!
This past week was unique because my church, MCCLV, organized a healing service for me. Friends and family gathered at the church or on Zoom to pray for my health and all the people involved in this journey, especially hospital personnel. The program included a scripture reading, a brief sermon from Rev Goudy, hymns, and prayer time. I was profoundly moved by the love and support I experienced during that service. It was beautiful to see people from various backgrounds and perspectives gather together with a unified purpose. This community sustains me during this difficult period in my life. Thanks to the organizers and participants for your prayers. God is so good! Please know you are all in my prayers as well. Each of us faces our own struggles in life, and we all need each other to thrive.
Rev Goudy visits regularly, which I find to be such a great example to set for all of us. Today Goudy brought me cards from my friends at MCCLV. What a kind gesture! They warmed my heart, especially the messages each person wrote inside. I will hang them up and review them when I’m feeling down. Thank you, Rev Goudy and MCCLV, for being there for me. I will never forget it. Check out the pic of the cards in my updates album.
Yesterday I had a right heart catheterization to maintain my status on the transplant list. My mom and I were stuck waiting in a small room by the cath lab for over 3 hours. They had an emergency right before my turn. During our waiting period, mom and I had a wonderful conversation about the healing service and how our family and friends are going above and beyond to ensure I am well cared for. My mother is at the center of my support system. She visits regularly and we FaceTime on days when we don’t see each other in person. As a single guy, the importance of my mom and my brothers is heightened in my time of need when I can’t be self-sufficient.
For the procedure, they sedated me and numbed a small area on the right side of my neck. I have gone through this process many times. While I was out of it, they inserted a catheter to take a close look at how well my heart is doing. After the test, the doctor informed me that the results were mostly good given my circumstances.
Also, the phlebotomy team continually monitors my blood with multiple tests each day. They even poke me in the middle of the night. Yes, it’s annoying, but I’ve gotten used to it. It’s their job to poke and prod! The doctors adjust my medication based on the results to keep me in tip top shape in case I get that highly anticipated call that my turn has come to get a new heart.
That’s all the news for now from UPenn hospital. Stay in touch and have a peaceful week. Thanks for reading my blog, and be sure to share the link to this site as we climb the mountain together to Ben 2.0!
October 2, 2023
The View From My Window
Hi everyone! My family and I continue to be incredibly grateful for your generosity and support. It means more than you know. I’ve been here for 94 days now. I never thought I’d spend quite so much time here in Philadelphia, but I have patience, and I’m really in a great place. Take it from me: if you have to be in the hospital for a long time, the Pavilion at the Hospital of UPenn is the place you want to be.
I thought you might like to hear a bit more about what life is like here. The hospital is only about two years old. My room is modern and large - and from my bed I look out at a wall of cards and well wishes from so many of you along with drawings from my nephew and my friends.
My room has a massive window. It looks out onto the city skyline of Philadelphia. Next to me is the UPenn stadium, train tracks, and the meandering Schuylkill River. Looking out the window helps me feel connected to the world. Check out the pic in my updates album.
I’m here with my books and my iPad. I like to keep up with the latest on Apple News. I’ve been watching Game of Thrones and Suits lately. There’s a massive flat screen TV in my room - connected to a system where I can control the lights, the temperature and ask the nurses for help when I need it.
The people are the best part! The doctors and nurses are world class. I appreciate how they take time to explain each step with my care and answer my questions. I’m building a nice relationship with the woman who brings my meals. I’m grateful how often my family and my friends visit me too.
I’ll keep posting every week - I appreciate you joining me on what we're calling the journey to Ben 2.0!
September 26, 2023
We’re Gonna Get There Together - Thank you!
Hello from Philadelphia! It’s been just over a week now since I put out the ask for some financial support as I continue to wait for a new heart. I felt awkward about sharing my situation. I knew I had great friends and family - but wow, I heard from more of you than I expected. Your check-in calls and cards and financial support all mean so much to me. Thank you!
I’ve received generous donations from many friends and family. I also received some gifts from friends of friends of friends and even anonymous people I’ve never met before. I’m beyond honored to receive these gifts from people who do not know me. I can promise all of you that these gifts are supporting me and I will do my best to pay it forward.
This is the most challenging time of my life. Your generosity, both financially and emotionally, sustains me. My mom and my brothers asked me to share their thanks with you too! Thank you for sending me some strength.
Maya Angelou said, “Try to be a rainbow in someone else’s clouds.” Thank you for being rainbows for me (even though it’s been non-stop raining lately!). My nephew in Brooklyn drew this rainbow for me this morning and I wanted to share it with you too. You'll find the pic over in my Updates album. I’ll post another update soon. I feel you all with me on this road to Ben 2.0.
