The story you are about to read is one of such improbable adversity and incredible coincidences that if it were being made into a movie, some of the facts would have to be edited out just to make it believable. It is a tale of indescribable generosity, and an example of what can happen when you have the courage to keep hoping in the face of an endless stream of devastating news. This holiday season is the perfect time to recount this tale because this is a story of hope and enduring light, of giving and sacrifice, of salvation and new beginnings, and most importantly, it is one of thanksgiving.
This is the story of how one family’s generosity combined with several miracles to become the most unlikely homecoming of Doris Lowenthal.
Its was only a little cough…
Back in the latter part of 2002, Doris developed a dry, irritated cough which she just couldn’t shake. At first she thought it was a cold, but it persisted long enough for her to be concerned. She went to see her doctor, who couldn’t point to any specific cause. He treated her for the symptom, and told her to come back if the illness didn’t run its course in a few weeks. Sure enough, the cough would not go away. In fact it kept getting worse. Doris returned to her doctor repeatedly who in turn referred her to a number of different specialists. Each month the coughing would worsen, and as it worsened, so did her ability to breathe. All the specialists she saw could only offer misdiagnoses, and plenty of shoulder shrugging. Doris never smoked, and at age 36, she was very young to be experiencing the symptoms she was having. Nobody could be certain about what she had. What was certain, however, was that she was not getting any better. By the end of 2003, Doris would get winded from simply climbing the steps in her home. A former high school track runner, Doris described the feeling of climbing a flight of stairs like running track.
“You know when you run so hard that you want to throw up? That’s how it feels when I get to the top of the steps” she told me one night. In fact, she would work so hard at getting up them, that often times she would stop in the second floor bathroom to clear her stomach before proceeding up the next set of steps to her office. She didn’t know what she had, but she wasn’t going to let it stop her. She continued run her Mary Kay business, and answer phones for Heaven’s Best. She carried oxygen tanks with her everyehere she went. In fact, in true Mary Kay style, Doris would dress up her oxygen bottles with bows and flowers that coordinated with her outfit each day. Slow her down? Maybe. Stop her? Heck no.
The Diagnosis. “I have some good news, and some bad news…”
The Doctor’s visits continued, and finally, in July of 2004, we got the news that Doris had a relatively rare disease called Pulmonary Fibrosis (PF). It is a disease that causes scar tissue to develop in the lungs and gradually robs them of their ability to oxygenate and clean the blood supply. Typically, mild scarring of the lung tissue occurs first, but over months to years, the normal lung tissue is replaced by more heavily scarred lung tissue, which makes it difficult to breathe and deliver needed oxygen to the body. The effect is to suffocate a person to death over the period of months or years. It is a fatal disease, and a very uncomfortable one at that. Doctor’s don’t know what causes the disease. In some patients the disease is genetic. Environmental factors (particularly exposure to certain types of dusts) may also play a role. What is known is that PF changes the lung's ability to function normally.
So little is known about the disease, that it can’t actually be specifically diagnosed. You only reach the diagnosis by demonstrating that the cause of the symptoms is not any of the other diseases that cause pulmonary fibrosis. This in part explains why it took so long to get a diagnosis.
There is no cure for PF and average life expectancy for PF patients is approximately two years after diagnosis. Only in the past few years have Doctors had some success in treating patients with PF by performing lung transplants. All hope was not lost, but the grim statistics are that at the close of 2005, there were approximately 3,500 patients who were awaiting lung or combined heart-lung transplantation, but in that same year Doctors were only able to provide organs to 1000 patients or 28% of those that needed them. For those patients that receive transplants, survival rates were approximately 82% at 1 year and 45% at 5 years post transplantation.
When God hands you a shovel, start digging!
What the Doctors were telling Doris was that she had a 75% chance of dying in the next 2 years, and 94% chance of dying in the next five. What she heard was that she was just going to have to get herself a lung transplant. And so began the long process of getting her name onto the transplant list. With such a short supply of organs, Doctors want to make sure that the candidates with the highest likelihood of survival get their organs first. The qualification process involved an endless battery of medical tests, psychiatric evaluations, and financial screening. After 7 months of hard work, we finally succeeded in having Doris’s name added to the transplant candidate list at Inova Fairfax Hospital, in Falls Church, VA.
It was January 2005, and 7 months had passed since her diagnosis. Given her age and condition, Doris received some priority on the listing and was told to be ready at any moment to receive a lung. Average waiting time was between 5-8 months for patients with her priority. Assuming things progressed as normal, she would be getting a lung within 12 – 15 months of diagnosis. Her survival was far from guaranteed, but everyone had more than a little hope that she would make it to the next step in her battle.
We approached the battle for her life as a team. Doris took care of the hope, courage, and groundfighting. I managed the overall process and technical side of things. He could speak to the Doctors in their language, and keep track of all the medications and procedures. When there was a medical issue they didn’t understand, he would call his high school best friend, Dr. Pradeep Singh. Pradeep is a research pulmonologist in Iowa and by coincidence works for a doctor who is considered the leading authority on Doris’s disease.
A Lucky Discovery?
By April 2005, Doris’s disease was continuing to gradually suffocate her, but she had reason to celebrate. Time and good fortune had pushed her name to the top of the transplant list, and April was the month that both of us were born. In her condition, another birthday was the biggest reason of all to celebrate. And then the unthinkable happened.
It was Saturday morning, my family had flown flew in from Indiana for the birthday celebration and Doris was getting ready for the day. While giving herself a routine breast examination, she discovered a lump in her breast. At first there was shock and disbelief. How could this happen, on this day of all days? She thought “After so many tests and examinations over the past year, if there was anything wrong, the Doctors would have caught it. Wouldn’t they?” She let me know what she found and they talked about it. They both agreed that it was probably nothing, but that they would call the Doctor on Monday to follow up on it. In the meantime, they would go forward with the celebration as planned.
On Monday, they contacted the Doctors and made an appointment to see them. The doctors agreed that based on all of the testing and examination she had received in the past year, chances were very slim that the lump was cancerous. She had a mammogram which indicated that the tumor was benign, however, a full biopsy would be necessary before they could proceed with the transplant. Doris’s name was placed on hold until results were made available. When patients receive organ transplants, they are given a variety of medications to prevent the body from rejecting the new organ. Unfortunately, these medications tend to create an environment in which cancer thrives. If the lump was a cancerous tumor, she would survive the transplant but be killed at an accelerated rate by the cancer.
We went to Sibley Hospital for the biopsy. The doctors performed the lumpectomy and sent Doris home to wait for the results. For the next few days, we kept their sanity by reminding themselves that everyone was pretty certain that the lump was non-cancerous. They waited for the phone call that would re-activate her name on the transplant list and get her back into the battle for her life. The call came on Thursday, and the Doctor reached me. The news was not good. Doris’s tumor turned out to be cancerous, her name had been removed from the transplant list, and she would have to remain cancer free for two years before her name could be added back to the list. It was 12 months from her diagnosis with IPF, and odds were against her making it another 12 months. Now she had to wait another 24 months before she could even get on the list. Ironically, however, Doris was really lucky. If she hadn’t found the cancer before the transplant, she would not have survived.
I'll never forget that day. I didn’t know what to say. For the past year I had been telling Doris that everything was going to be OK, and here was the Doctor telling me that it wasn’t. I sat there in my office sobbing like I had never done before. I had to go home and tell Doris that she was probably not going to make it. I cried for her, I cried for myself, I cried about the whole situation. I didn’t know what to do. Finally, I calmed myself down enough to drive home. I picked up some flowers and some items to make her favorite dinner. I went in the house and fixed a candlelight dinner so that we could enjoy each others company a bit. Then I sat her on the couch, gave her the flowers, told her how much I loved her, and told her the news. It was the hardest thing I have ever had to do.
It didn’t sink in all at once. It was the first time that Doris really considered that she might not make it. She had been so hopeful all this time, and things seemed to be going her way up to this point. But now she was scared. We spent the next couple of days together, just trying to make sense of everything. What should they do. I tried to be supportive while Doris struggled with all the emotion.
Given the weakness of her lungs, chemotherapy was not an option for Doris. General anesthesia for surgery was even a significant risk to her survival. Doris chose to risk the surgery and have the doctors perform a complete mastectomy to insure the complete removal of any cancerous cells. She had the surgery and was declared cancer free in May of 2005. She and Barry then went to a nutritionist and began eating a completely vegetarian diet. No meat, no cheese, no dairy products, no processed sugars, and no artificial sweeteners. It was a strict diet, but they needed to give Doris’s body every single chance they could to heal itself. Barry participated in the diet to make it easier on Doris. They were going to do everything they could to get her through the next 2 years.
Next they sold their houses in Washington, DC and bought a house in the country that had a first floor master bedroom. Doris grew up on the eastern shore and always wanted to move back to the country, and a first floor master bedroom would eliminate her need to climb steps. So in the spirit of making the most of the time she had left, she got the house of her dreams, and a more comfortable living arrangement. Barry and Doris kept a realistic view that the chances were against her, but they also knew that there was hope, and they weren’t going to squander it.
Every once in a while, they would break their diet and enjoy a nice meal together. Doris continued running her business, and they tried to do whatever they could to enjoy life. Each month that passed, however, the number of empty oxygen bottles that Doris was consuming would increase. It was a steady reminder that the clock was ticking and her IPF was worsening. It was a race against time.
One week in early 2006, after a visit with her mother and aunt, Doris began requiring an alarming amount of oxygen to make it through the day. The oxygen levels in her blood were incredibly low and she knew something was wrong. Barry took her to the hospital and she was placed in intensive care. Doctors speculated that she had pneumonia, but they couldn’t verify it because the scarring in her lungs was so severe that her chest X-Rays revealed no detail in her lungs. In her condition, pneumonia could be fatal. The doctors treated her with very aggressive anti-biotics. With her IPF symptoms it was very difficult to tell whether or not the pneumonia had been eliminated or not. The only way to be sure would be to insert a camera into her lung to examine it, and Doctor’s felt that it wasn’t worth the risk. They opted to take their best guess and when they thought the pneumonia was under control, they sent her home. A week later she was back in the hospital. The pneumonia had returned. With hope, prayer, and a positive attitude, Doris pulled through again but things were not looking good. Doris needed to make it another 17 months, but she would not be able to survive many bouts of pneumonia. Barry’s friend, Dr. Singh, told him he should prepare himself emotionally for the fact that Doris probably would not make it.
All Hope Is Lost
By February 2006, Doris was holding on. She used an electric scooter to get around, and while the bouts with pneumonia had taken their toll, she was not dead yet. As a matter of course, they scheduled a checkup with the transplant center to keep the medical team updated with her condition. It was in this meeting that they received the worst news yet. In the course of their conversation, the doctor referred to the five year wait between being declared cancer free and having one’s name added back on the transplant list. They were shocked. Barry and Doris both thought that the wait was two years not five. They double checked with the Doctor, and told them they thought he had said a two year wait. The doctor was certain he had told them five years. Both Barry and Doris knew that 5 years was almost completely out of reach. Their last real hope was gone. It would take a miracle to save Doris.
A Curbside Miracle…
The Lowenthals returned home, and stayed the course. Doris fought the disease one day at a time as she had been for the past year, but it must have been incredibly disheartening to know that the finish line had been moved so far out. What happened next can only be described as a miracle. Doris’s transplant physician was getting out of his car one day when by chance he bumped into an old colleague he hadn’t seen in some time. The colleague was actually the physician who founded the transplant center at Fairfax INOVA hospital, and also happened to be an oncologist (cancer specialist). The two doctors struck up a conversation, and as they did, Doris’s physician mentioned her case and how troubled he was by it. When hearing the specifics of the case, the oncologist told Doris’s doctor that he would like to see her file. He thought that given the nature of the type of cancer Doris had removed, there might be a chance to proceed with the lung transplant. By April of 2006, the Oncologist had convinced the transplant team to return Doris’s name to the transplant list. By this time she was receiving 100% of her oxygen through a mask and her expected time of survival was being measured in weeks not months.
The Gift of a Tragedy
On May 8,2006 at 6:00 AM, Doris received the call from the transplant team that a person had been mortally wounded in Charlston, South Carolina, The person had registered their organs for donation and the lungs appeared to be a match for Doris. The victim’s family had agreed to give the organs to save Doris’s life so that they could provide some meaning to the tragedy that they were suffering at the time. Doris and Barry rushed to Fairfax and met with the Doctor in final preparation for the transplant. Doris was prepped for surgery while the transplant surgeon left for South Carolina to harvest the organs for transplant. By that evening at 8:00 pm, Doris had her new lung.
The first few days post transplant went very well. Doris was breathing with the new lung, eating, talking, and even walking short distances. By May 16, however, complications set in and Doris was placed on a breathing ventilator and placed under heavy sedation. Her condition continued to worsen and her kidneys began to fail. By May 19 she was placed on continuous dialysis. The doctors gave her medication to paryalyze her. She remained in a medically induced coma in the intensive care unit for nearly 9 weeks. In Mid June Doris developed sepsis (a blood infection) and the transplant doctor informed Barry that there was nothing more they could do and that there was little hope for her survival.
And then, just when everyone thought that Doris had used up all her miracles, her body began to heal. “It was a Saturday morning and the doctor came in from viewing her X-Rays and told me that the transplanted lung looked better than ever. He told me “I think she’s turned the corner”. Thankfully she turned the right corner!” jokes Barry as he recalls the day he refers to as Miracle Saturday. By late July they woke Doris up from her coma. She couldn’t believe that so much time had passed, and was blissfully unaware of how close she came to dieing. She was relieved to see Barry again, but not half as relieved as he was to see her.
Rehabilitation
The induced coma left Doris severely weakened. She could not lift her hands or even twist her leg. She would have to work hard in rehabilitation to get back to normal. This meant learning to walk again, feed herself, and bathe. It had been a long road so far and the really hard work was ahead of her. And as always, with a great big smile, Doris began the hard work of recovery. For three hours each day she would do her rehab. By August 28th she took her first steps, and never looked back. For the next several months she worked at least 3 hours a day building up her strength and endurance. By October 6, she was able to return home to continue her recovery. On the day before thanksgiving, she received the word that her kidney function had returned and she would no longer need dialysis. By December 1, 2006 she was able to drive her car by herself. Doris continues pulmonary rehabilitation, and is getting stronger everyday.
