December 28, 2017
New Years Message from John
My "Heart to Heart" Journey Continues…
On the last day of this year I will be celebrating the
8 month anniversary of my heart transplant, which has provided me another chance at life. While it may sound a bit cliché, this year has been and continues to be a journey physically, emotionally and spiritually. I have learned many things about myself that I should have known by now but didn’t or chose not to acknowledge.
I am grateful to say that to date I have had no physical rejection of my new heart and my medications slowly continue to be reduced. Other than a 10 day setback in July which required a hospitalization and home infusion through a PICC line for 6 weeks, I have had no other major complications. My scheduled follow up visits to U. Penn are moving to every 6 weeks and hopefully to 3 months soon. I am slowly regaining my strength with physical therapy which at my age doesn’t happen as quickly. I am back at work 3 days a week which seems to be about right for now. I am trying to figure out this “new norm” which seems to keep changing.
During these seasons of Thanksgiving and Christmas I have had a chance to reflect on the gifts of life, family, friends, work and each new day. Each new sunrise or sunset, the smells of freshly cut grass, the breeze blowing across my face, snowflakes melting on my lips, I find myself reflecting in the surreal at times. If it weren’t for a gracious donor, the incredibly gifted staff at U. Penn, my family, especially my wife Debbie, my personal angel on earth, the prayers of many around the world and the miracles of a Gracious Loving God I would not be alive. I wouldn’t be here to hold my 2 new grandchildren, born within one week of each other in September, cook the Thanksgiving turkey, be in our Christmas family picture, watch my grandchildren play soccer and basketball and on and on.
At other times I confess that I forget the miracles and find myself complaining about this or that and feel guilty when I am not so grateful. I realize how quickly I can return to the “old norm” and then wonder, am I worthy of this new gift of life? There is this new or strange sense of responsibility and accountability that can seem a bit overwhelming at times as I steward this “new heart” that once belonged to someone else. Am I worthy, am I living up to the expectations of the donor family, who I don’t know at this point, or the expectations of my family, friends, others and foremost God who has extended new life to me? What do I do with that? I can find that overwhelming at times and wonder, "Why Me Lord?" Since my heart transplant I have had other friends who have died and not been given this second chance and again I wonder, "Why Me Lord?"
I hope and try to be worthy.
Many thanks to you, some of whom I don’t know personally, for your faithful and ongoing prayers, thoughts, kind remembrances and love. It is my prayer that each of you on your journey will experience in a new way the love, life and light of God and others this Christmas Season.
A Holy and Blessed New Year to all,
John
October 2, 2017
September 30th
FIve months post transplant
Today we celebrate another milestone - another month. September has been a month filled with blessings and love and laughter and inner peace that have all contributed to the healing process.
John continues to move forward one day at a time. He has resumed a fairly normal fall routine with the exception of working fewer hours and filling that time with physical therapy and cardiac rehab. Although he feels his progress is slow and that it is taking too long to get back to where he was physically, those of us closest to him see him gaining strength and stamina and recognize the need for him to find a healthy balance.
It has been an emotional month as two grandchildren were born within one week. Lydiana was born to Jeremiah and Kristine on September 8 and Jackson was born on September 15 to Julie and Tyler. Holding the newborns for the first time brought tears of joy and gratefulness to all of our eyes, as we remembered being told of their upcoming births just before Easter and then faced the uncertainty that they would meet their "pappy" in this life. We also celebrated three birthday and one anniversary this month ...Jon, Tyler & Jonalyn's birthdays and Julie & Tyler's anniversary. SO much joy!
We are also grateful for the excellent reports John had at U Penn this month. His biopsy showed no rejection, his CMV is in check and his other tests indicate his meds are properly dosed. He will continue his monthly trips to U Penn and weekly blood tests in Lancaster.
As a family we are grateful for each new day. Sometimes when we pause we realize all we have been through we wonder how we all kept going. We know God has been with us and sent many people to walk alongside us. The journey will continue but our pathway and story are forever changed.
Thank you so much to all of you who have supported us with prayers, gifts, cards, texts,visits and your friendship. It is the "little" things that mean so much - like going on a cycle ride with friends to the Border Cafe in Delaware, hiking in the woods, seeing friends and family at the fairs, church, birthday and wellness celebrations, watching the hummingbirds at our feeders or just walking in the meadow taking in the sights and sounds. We are so aware of all of our blessings!
We leave you with the words of one of John's favorite songs. This song was sung at our wedding and this song was also sung at our church one Sunday this month. It strikes a chord deep within each of us. May the words be a blessing and comfort to you as well.
My God and I walk through the fields together;
We walk and talk as good friends should and do;
We clasp our hands, our voices ring with laughter;
My God and I walk through the meadow's hue.
We clasp our hands, our voices ring with laughter;
My God and I walk through the meadow's hue.
August 28, 2017
Today marks 17 weeks post transplant. As we conversed with several of our children today, we are amazed how some of us continue to wake almost automatically at 2:00 am on Sunday mornings - the hour we received the call that John was offered a heart! Needless to say we are grateful for that 2:00 am call and equally glad to be at this place in time.
The summer was very challenging. In early July John became ill and was hospitalized for 10 days. He had a CMV virus and was released with a PICC line and IV meds. The rest of the summer was a whirlwind but hopefully things will level off now. The last few weeks have been very encouraging.
On August 15, John's CMV virus levels reached the benchmark for two weeks in a row. Consequently the PICC line was removed and the IV meds were discontinued. We are overjoyed for his improvement and that he has been freed of the 2xs a day regiment of infusion.
The time between his U Penn appointments and his heart biopsies has been lengthened which is also freeing. John is trying to navigate a "new norm." He is beginning a new school year routine working in his church relations and development position part time at LMS. Debbie had a mishap and fractured her wrist requiring surgery in August but has tried to make up for lost time with the grandchildren in the last few weeks before school started visiting some of their favorite spots and adding some new adventures.
As we head into September we anticipate the birth of two grandchildren. We are delighted to move beyond the hard times of the summer and in to this new phase of healing and restoration! We are thankful for each of you who have walked with us supporting us with your prayers, visits, gifts and words of encouragement.
Love,
The Denlingers
July 20, 2017
July 20th Update
Happy Birthday, John!
On Saturday we came to the beach for our annual family vacation at Ocean City. As we approached the boardwalk and the ocean, tears rushed in like waves ... we know how blessed we are to be able to return to this place where we have vacationed for forty years. WIth all that has happened in the last three months not one of us could have been assured that this day would come. Even as late as last week John was hospitalized at U Penn Hospital. He had been in the hospital off and on over a two week period and was extremely ill and weak from the CMV virus. He came home on IV medications that we administer two times daily. A visiting nurse has come both to our home and to the beach house to change his PICC line dressing and to draw blood and the specialty infusion meds have been delivered at both locations as well. We marvel at the coordination and resourcefulness of the Penn team in helping to make this "get away" happen. Because of the PICC line, we are handling vacation a little differently - sitting on the edge of the water and under an umbrella instead of diving into the water and helping the grandchildren ride the waves. We are on the beach a lot less but still enjoying every minute of our beach, porch and boardwalk time with the family. We keep saying .... next year, next year! But for now we are grateful for the blessings of this year and for a chance to have some good times away from home and Philadelphia and the harder times! Another highlight for John's birthday was going from OC to the Linc stadium last evening in Phila to see the US vs El Salvador game with Jeremiah and the boys. Today more surprises are in store as several of his sisters will join us for a day at the beach. His brother Ken and his wife Bev surprised him with a visit at OC yesterday! So many blessings!!! Happy Birthday, John.
July 5, 2017
John is now nine weeks post transplant. We continue to experience many blessings but there are tough challenges as well. The biopsies and testing continue to yield good results and several medications have been decreased and/or discontinued. We continue to view each day as a gift and a miracle.
Amidst the good news, John has also faced some obstacles along the path. Several weeks ago John relayed to those of us closest to him, that he felt like he "hit a wall" and that he had "plateaued". Despite doing everything asked of him with regard to diet, exercise and meds he did not feel as though he was progressing. He began to experience intense back pain, felt very tired and experienced nausea which seemed to be related to the meds he takes daily. He started physical therapy to help his back pain. As the week progressed he did not show improvement and we began communicating with the hospital staff about next steps.
On Sunday John was readmitted to U Penn Hospital primarily for his nausea and and severe stomach pain. During his stay the post transplant team ordered many tests which are standard protocol for transplant patients with compromised immune systems. Eventually they pinpointed an inflammation in John's small intestine which accounted for the intense stomach pain. Tests of his back identified a fracture which explained the back pain. Monday evening John began feeling some relief from his symptoms and late Tuesday afternoon he was released from the hospital fitted with a back brace. He will continue physical therapy at home and return to U Penn on Monday for his regularly scheduled visit and biopsy.
It is our prayer that he will continue to experience healing and renewed strength. Thank you for following his progress and for your prayers, cards, and words of encouragement. At this point on the journey, visits are welcomed. Please contact Debbie or John if you would like to arrange a date and time.
Blessings,
The Denlinger Family
May 22, 2017
Dear friends and family,
I can hardly see through the tears as I write these words—my dad is home! After over a month of wild, scary, wonderful days, both before and after transplant, my dad is home. I can barely describe how amazingly wonderful it is to see him sitting in his chair, eating at his dinner table, and laughing with his family, at home! And to see my mom able to walk among her fields of flowers, rest in her own space, and to see her with her family, at home! We have had many tears and wonderful moments together this weekend.
Despite the incredible joy, it hasn’t been the easiest transition home, as there are many, many changes and many, many new things. From constant handwashing, to food designated as dad’s, to new medications and IV antibiotics, to a visiting nurse, to learning how to live with a new unknown. This time at home has been healing and offered hope and respite amidst the storm. Thank you for texting mom (Debbie) before visits, as the visits have been life giving, and we ask that you continue to reach out to her prior to visiting. He and mom will head to Philly today to stay at the Transplant House tonight, dad’s first stay at mom’s home away from home, as Dad will be checking in with his team at UPenn tomorrow. And so this new phase of the journey is being learned.
There is still much healing to be done, much processing to do, and soaking in this new reality! But there is so much hope. We have been living with grief and gratitude – I have learned that they are both part of the same coin. And I have been carrying them both in every moment. But today, I am experiencing gratitude upon gratitude upon gratitude. For our family, for our friends here and around the world, for the amazing medical teams and hospital staff, to the donor and the donor’s family.
There truly are no words to thank all of you—our community of friends and family—who have carried us. Who have been our life boat as we wade through this storm, reminding us that we are loved, cherished, and not alone. For giving to dad’s Help Hope Live fund https://helphopelive.org/campaign/12843. For the endless cards. For the prayers. For the “just texting to say I love you”. Our gratitude for you is indescribable.
And so, I will leave you with the words of Simon and Garfunkel, who could always say things better than me. And whose songs joined dad in the cath labs, the operating room, and in the waiting spaces because of course he requested to listen to oldies
When you're weary, feeling small
When tears are in your eyes, I'll dry them all
I'm on your side, when times get rough
And friends just can't be found
Like a bridge over troubled water
I will lay me down
When you're down and out
When you're on the street
When evening falls so hard
I will comfort you
I'll take your part when darkness comes
And pain is all around
Like a bridge over troubled water
Sail on silver girl
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
Oh, if you need a friend
I'm sailing right behind
Like a bridge over troubled water
With our deepest gratitude and love,
The Denlinger Kids
May 15, 2017
Dear family and friends,
Today marks the 32nd day. Several days ago I optimistically packed my suitcases and moved out of my room at the Transplant House. As the day progressed I came to realize that John would not be leaving the hospital as expected. So I checked back in but kept our bags packed in anticipation of discharge the next day. The next day I did not move out of my room but I had everything ready so that on 30 minutes notice I could get our things in the car and check out. Each day since the ritual of expectancy and reordering our thinking has occurred. A few things have transpired since our last update. John's echos last week showed a progression of fluid build up around his new heart. As a result they did a procedure to remove the fluid. When they were in the midst of the procedure they realized that there was not as much of a fluid build up as they thought (which is a good thing). However, as a part of that procedure, they are required to test the fluid extracted. The initial slide showed evidence that there might be bacteria or infection present. As a result (and to John's disappointment) the infectious disease team in concert with the heart transplant team embarked on a course of what they term "abundant precaution". John was placed on a broad based IV med until the cultures had time to develop and following that they could specify a targeted course of action. So over the weekend we were unable to go home as anticipated which was extremely disappointing because our grandson Lucas celebrated his 7th birthday. I suppose the staff was feeling so sad for John that they arranged for a mini-retreat of 15 minutes to go outside of the hospital into the sunshine. It was definitely good for both of our hearts and souls.
Today (Monday) John will have his second biopsy to test for rejection and then an echo to follow up tomorrow. Later today we will get an update from the infectious disease team as well. Please pray for positive outcomes all the way around. John is feeling great and staying in the hospital is getting more challenging daily. We are coming to recognize the truth in the doctor's early words, "This is a marathon and not a sprint." May God grant each of us endurance and patience as we run this race!
Love,
Debbie
May 11, 2017
Day 25 of the journey ... from home to Lancaster General to U Penn. who could have known? As I pull John's clothes out of the suitcase stashed away for 25 days - the clothes he wore to the Lancaster General hospital and soon will wear home from Philly what words are there to say? As I take the clothes from the closet that I hastily threw into a suitcase for a several day trip to U Penn how could I have known the many washing and rewashing of outfits that would occur in a stay of nearly a month? When I find a free moment to pause and reflect I can hardly do so as all the images of the past weeks flood my mind and soul and my emotions race to the top and wash away reflection with pools of gratitude and signs of hope in the faces of the people I have seen and interacted with during my stay here. In my sadness there was joy and with the newfound joy comes a deep sadness as I see the pain and suffering and bruising of John's body which is all a part of the healing process. I also grieve for the many losses experienced because of his sick heart and the restrictions that will now be a part of protecting his new heart.
Bless his heart ... Bless his heart ...Bless his heart.
So what comes next and what came before? Last Wednesday John was moved to a step down floor and out of intensive care. Little by little medications were adjusted and as healing continued one by one tubes and IVs were removed and replaced with oral meds and injections through pic lines. Each step of the way we rejoiced until John was finally set free from the final pole that bound him. As soon as he was cleared to walk he began to walk around the unit several times a day first with a nurse and then with me. He is now able to make the trips independently.
On Monday he had his first post transplant biopsy. We are grateful that the report on his rejection rate was good. Throughout the week they have been monitoring his heart rate before removing his external pacer. His heart rhythm is great and his new heart is functioning well. However the transplant team would like his heart rate to be higher. They are working around a medication John had taken for his sick heart that stays in your body for weeks up to months after one stops taking it. This med kept his heart rate low and is probably doing so with his new heart as well. It is not harmful to his new heart but makes it necessary to find other meds to counteract it.
Throughout the week we have had many teaching sessions that range from medications, precautions and restrictions, diet and lifestyle changes. When he returns home there will be visiting nurse services and weekly visits to Philadelphia for at least the first month and then biweekly. There will be sessions in Lancaster for cardiac rehab.
John's immune system is very compromised right now because of the anti-rejection meds he is taking. When he returns home he will need to avoid crowds and restrain from his friendly practices of handshaking and hugging (he also has precautions because of his newly wired chest).
We will post again when he transitions home. We know he will welcome some visitors at that time but will want to have visits scheduled rather then drop ins for his safety and well being. So we will ask you to please contact me in advance.
Finally thank you again for your cards, gifts, prayers and well wishes. We ask that you do not send flowers or foods to the house. John has strict precautions right now about how food needs to be prepared - things one could not even imagine. Flowers are also prohibited due to possible bacteria molds and fungus (we will have to enjoy the plants that are growing outside).
Thank you too for the gifts given to John’s Help Hope Live fund.
We are grateful for our many blessings. I have had a chance to interact with other individuals at the hospital and at the transplant house on this journey. I have heard many stories of suffering, strength and resilience. John's story is now one of them. God’s grace and holding power is evident daily.
Love,
Debbie
May 4, 2017
Easter Weekend April 2017 was the beginning of a life change and an unexpected journey for John and our family. On Good Friday evening, following a full day of preparation for the events of the weekend and a Good Friday church service, John became increasingly ill and short of breath. We ended up taking him to the emergency room at Lancaster General Hospital. As the weekend progressed John continued to decline. On Easter morning John was airlifted by helicopter to University of Pennsylvania Hospital in Philadelphia. The physicians, nurses and staff worked to stabilize him and to simultaneously complete a Heart Transplant evaluation. Two weeks later on April 30th John was gifted a heart.
There is much that could be shared about how blessed our family felt by the support received from family and friends in each of our home communities as well as the support found in the new environment in which we found ourselves.
John’s transplant story is a miracle and we will be forever grateful the life giving gift of the donor and the amazing care John has received in the last few weeks and over the past 20 years. The initial Philadelphia experience is just the beginning of a new life journey for us. We have been educated by the Transplant Team to understand the major changes ahead and we’ve been told that we should expect some bumps in the road. There will be frequent trips to the hospital for biopsies to test for rejection and to make sure that other organs continue to work well in tandem with this brand new heart.
Many people have asked what they can do to help. First and foremost we need prayers to meet the day to day challenges and to enjoy the day to day successes! Additionally, we can always use cards and notes of uplifting support as we walk through the months and years ahead.
Another way to support the ongoing changes and their costs is our Help Hope Live page. The social worker assigned to the team suggested we consider participating in the Help Hope Live organization to help with expenses that will not be covered by our insurance. We were reluctant to consider this at first but after some long conversations with our family we decided to move forward. We felt Help Hope Live was a great option because all gifts are tax deductible for the givers. Additionally Help Hope Live administers the funds and directly pays the expenses incurred. The funds will be used for medical and prescription costs not covered by insurance, as well as expenses related to travel to and from Philadelphia.
We have learned through this experience how important it is to tell our loved ones how much we love them and we encourage you to tell your loved ones how much you love them as well. Through this journey, we have been reminded time and time again how grateful we are for our family- both birth and chosen. It is impossible to explain the gratitude we feel for each other, and for you, our community. John and our family are looking forward to many amazing years ahead. Thank you for your support in this journey now and forever.
