Scout and LoganOur dear friend Scout (Vicki) Valentine can breathe thanks to a miracle. The miracle that skilled surgeons, with God’s help, can take the working, useful lungs from a person who has left this life and place them in a person whose work on this earth is not done. The further miracle that the timing of the donor’s passing coincided with the hour of Scout’s greatest need.
Scout received her new lungs in the very early hours of June 8, 2013. The journey to that day began nearly two years earlier when Scout developed a nasty cough. It was diagnosed as pneumonia and treated as such. It seemingly was on its way to resolution until several months later when it became apparent there were some lingering symptoms.
Over the next several months diagnostic tests were run and Scout fluctuated between feeling normal and feeling just a bit off. The “off” didn’t stop her from being active. She continued to run several days a week and take riding lessons which she had begun in 2010. She had made her debut in the hunt field in early 2011 at a Red Rock Hounds joint meet in Santa Ynez and had become quite hooked on riding.
Logan
In the summer of 2011 I acquired an unattractive but loveable three- year-old off-the-track Thoroughbred gelding. He had rather poor conformation, was underweight, and his feet were in miserable condition, but he had an eye that you could get lost in.
He came home with me, and everyone but Scout and I laughed at him. I named him Logan.
It was several months before I could even ride him because his feet were in such bad shape. Finally around November I started riding him, but in late November I broke my back (different horse), so I could only do ground work with him.
Scout had decided she wanted to go with us to another Red Rock joint meet in Ridgecrest, California in January of 2012. We were trying to decide who would be the best mount for her when I had the brainstorm of having her ride Logan. Everyone but Scout and I thought it a crazy idea: a beginner fifty-five-year-old on a barely broke three-year-old in the hunt field? But this was Logan, and I knew he would be careful with her.
And he was. Scout had a wonderful time on that three-day meet. We debuted the “Leisure Field” for those that just wanted to stroll along to watch the hunt and had a large number of people in our field. She and the now-beautiful Logan went on to participate in the closing weekend hunter pace and hunt at Red Rock in April. And then, Scout’s world got rocked.
The Diagnosis
During the early months of 2012 Scout became increasingly short of breath, especially when she was in the altitude at Red Rock. More tests were done, including surgical biopsies. After several tentative diagnoses a proclamation was made after a consult with Mayo Clinic that “we’re pretty sure it’s Idiopathic Pulmonary Fibrosis”: scarring or thickening of the lungs without a known cause.
This thickening may make it increasingly difficult to breathe. In some people the disease gets worse quickly (over months to a few years), but other people have little worsening of the disease over time. We hoped it would progress slowly, but in Scout’s case it worsened quickly.
In late April 2012 my sister Jann (an RN) and Scout went to a consulting pulmonologist. The consensus rather shocked us all. If the disease progressed to a point where she lost most of her lung capacity a transplant would be the only treatment.
At that point Scout said it was not something she would consider. Besides, this disease could progress slowly so that decision hopefully wouldn’t have to be made for perhaps years down the road. With little that could be offered in way of treatment to slow the progress of the disease, it really was up to the individual person’s body to dictate how fast it would progress.
We couldn’t just sit around and wait to see how fast or slow this nasty disease would take to destroy Scout’s breathing. We would let medical science help us in all the ways it could but we also needed to treat Scout as a whole body. While her body was deciding how fast or slow it wanted to develop scar tissue on her lungs, we could focus on every other part of Scout.
With clearance to fly by her medical team, five of us embarked on a journey in early May to the Healing Spirits Herbal Farm in Avoca, NY. Matt and Andrea Reisen are masters at whole body healing. Andrea is Red Rock Hounds MFH Lynn Lloyd’s sister and absolutely embodies the spirit of optimism, adventure, love, and spirit that we all love in Lynn. Andrea and Matt have made healing their life’s work, and they give their all to it.
Scout, my sister Jann, friends Jen and Leslie, and I spent a glorious week in the mountains of New York at a delightful inn by night and at Healing Spirits by day. We indulged ourselves in Matt and Andrea’s loving, skilled hands, hearts, and knowledge. By the end of the week Scout could walk up the hill nearby without losing her breath where earlier in the week she couldn’t even get halfway up. We left with hope and an inner sense of purpose.
Immediately upon her return Scout departed on a continuance of her healing journey. She went with her family for a sailing trip to the Caribbean. There she wrapped herself in the healing powers of the ocean and the sea air.
Upon returning in early June she felt wonderful. For at least that month between New York and the Caribbean, the disease gave her the gift of letting her forget for a while the hard journey ahead. It gave her the strength and purpose to move forward in what would be the hardest year of her life.
However, during the summer it became apparent the disease was progressing. There were good days and bad days. On the good days Scout worked at my FieldHaven Feline Center as much as she could. The purpose of helping animals live and introducing them to new lives in loving homes buoyed her spirits to help her get through the bad days.
She started using oxygen to supplement her breathing. But even that didn’t slow her down terribly. Her little backpack of oxygen just accompanied her as she went about her life, just a little encumbrance to tag along.
In November Scout asked me if I would go with her to her pulmonology appointment on December 3rd. She wanted to discuss the possibility of transplant with her pulmonologist.
Some of the questions stuck in our throat as we asked them. “What will happen if I choose not to do a transplant?” “What is the success/survival rate?” “What are the chances of getting a match?” How many people die waiting for a transplant?”
At 5:30 pm on Monday, December 3, 2012, Scout made the declaration that would send her on a journey that she’d be on for the rest of her life: “I want to move forward with a transplant.”
This photo of Scout and Logan at Ridgecrest, posted through all the dark days on her hospital wall, her apartment wall, and as the screensaver on her laptop, provided Scout’s inspiration to endure and overcome.The Transplant
The first of a huge battery of tests were scheduled for the following morning. No time to waste. Over the next two months Scout had each and every body part and system evaluated and screened. Right down to the teeth and toes! And not any too soon because Scout was now pretty much on full-time oxygen.
Scout found out on Valentine’s Day that she was listed with University of California San Francisco (UCSF) for a lung transplant. “Listing” means that she was registered with UNOS (United Network for Organ Sharing). She received an initial LAS (lung allocation score) that determined her place on the list. A match would mean they found lungs that matched her in approximate height and blood type.
Dr. Krukeja, the transplant surgeon at UCSF had met with Scout during the evaluation and talked to her about the different types of lungs that may be offered. They could include smokers, drug users, and felons. Scout told her she wouldn’t be picky; any lung’ll do!
It was closer to becoming a reality, and, yes, it was a bizarre feeling that we were essentially waiting for someone to die. Sometimes you just have to use humor to get past these “heavy” feelings. “So you’re about Scout’s height; what blood type are you?” “Yes, I’ll drive carefully; I love ya but I’m not keen on being your lung donor.”
Laughter made the wait a bit more tolerable. For weeks it seemed as if they had forgotten about us at UCSF. We waited for the call, but radio silence prevailed. The transplant coordinator at UCSF was wonderful in reassuring us that Scout was definitely on their radar, but the fact was there were patients sicker and higher up the list than Scout.
In March Scout moved into FieldHaven where we could all help her and be there for her. Several times during the wait Scout’s lungs worsened considerably. We became frequent visitors at the Kaiser Emergency Department, and she was admitted several times. Her oxygen needs increased and she became dependent on the large oxygen concentrator that hummed along all day and all night. She was tethered to the fifty-foot green hose that was connected to the concentrator. The cats were delighted. They thought that we’d installed a play toy just for them and you’d often see Scout dragging a cat attached to the hose as she walked about the house. That damn green hose was a hazard. How many times did we trip over it or become wrapped up in it.
Then there was that time when I was standing in the kitchen and the concentrator started beeping. I looked down and realized I was standing on the hose and was cutting off Scout’s oxygen! Oh dear!
Scout kept busy. She worked in the shelter as much as she could. We watched all three seasons of Downton Abbey. We ate a lot of sushi because post-transplant sushi is on the forbidden list (possibilities of bacteria). Four of us went on a weekend retreat to Calistoga. And we waited for the phone call to come.
Scout’s condition deteriorated to the point where walking just a few feet caused extreme shortness of breath. One day it led to a 911 call for yet another ER visit. This time after five days in the hospital we had to increase our oxygen setup before she could come home. Six large stainless steel liquid oxygen containers that turned our house into what looked like a brewery, pushed air into Scout’s lungs each and every second.
Memorial Day brought a steady stream of family and friends to keep the cheer going, but it broke our hearts to watch our sister’s lungs fail her otherwise strong body. By the end of the day it was apparent Scout needed to be with a medical team that had the expertise to keep her life going until donor lungs became available.
If it wasn’t under such scary circumstances, the 120-mile ambulance ride from Lincoln to UC San Francisco Hospital would’ve been thrilling. Blasting sirens and twirling lights parted the bumper-to-bumper Memorial Day traffic of vacationers returning from the traditional summer kick-off weekend festivities. Watching the traffic part as we sped down Highway 80 was truly exciting….and reassuring.
We arrived at the UCSF, and Scout was put immediately into the skilled hands of the ER staff and members of the lung transplant team. At around 2:00 am we were moved to ICU where Scout would spend the rest of her time waiting for donor lungs.
After several days at UCSF I had gone back home and was preparing to go back to UCSF on June 8 for the weekend but at 3:00 am on the morning of June 7 a call came that Scout was in respiratory failure, and they would be performing a last effort to prolong her lungs—and life—until donor lungs became available. The procedure they would perform is called ECMO and is basically a heart-lung bypass; a machine would be providing those functions for her.
We rushed to the hospital in time to see her off to surgery. They delayed the surgery a bit as Dr. Krukeja thought there might be some lungs but it did not happen. She informed us that Scout was now “at the top of the list” but she feared she wouldn’t live much longer unless the extreme effort of ECMO was done, so at noon she was taken off to surgery. At 3:00 pm she came back from surgery with the news that there was a good possibility of a matched set of donor lungs.
Then came the twelve-hour wait where time moved along one painful second at a time. Scout’s life was leaving us, but our prayers, her will, and the talent of the staff kept her on this earth until 3:00 am on Saturday, June 8 when she left for the transplant.
The transplant went well. The recovery period was not without challenges, disappointments, fear, anger, and, yes, some guilt that another person had to lose their life to give us the opportunity to continue living. After just under two months of post-op care while living in an apartment near San Francisco, Scout came home to FieldHaven on August 6.
Living with a lung transplant is not for sissies. There’s the litany of blood tests each week; the regular bronchoscopies and other invasive tests to ensure the lungs are working properly; the forty-plus drugs taken each day on a very strict schedule; the absolute obsession one needs to develop about keeping germs away from a very compromised immune system; the fear that each little symptom might mean the lungs are being rejected; the side affects of some of the drugs.
Less than four months after surgery, Scout took Logan for a ride.The Goal
Through it all Scout kept one image in her mind. The photograph of her and Logan at the annual Ridgecrest Joint Meet in January, 2012 before this journey began. The picture was on her wall at the hospital, in her apartment, and as her screensaver on her laptop.
On September 29, not even four months after surgery, Scout swung her leg over Logan and settled into the saddle. Then she took a deep breath—what a miracle it was just to watch that—and nudged him into a walk. Like a fearful mother I watched them walk further and further away from me, ready to leap into action should Logan do some silly five-year-old thing. But he didn’t. Scout didn’t fall off. She didn’t stop breathing or even get short of breath. Not so much for me though. I believe I held my breath the whole time she was riding.
While in the hospital and all the months after, Scout’s pronounced goal was to ride at Red Rock Hounds Opening Meet in October. Of course, she met that goal. Who could have doubted it!
John Schafer, ex-MFH provided the Blessing at Red Rock’s Opening Day.
Epilogue
February 24, 2014…We returned from a joint meet with Red Rock Hounds at Tejon Hounds and Santa Ynez Valley Hounds where Scout rode Logan four of the six days we hunted. During the trip she marked the one-year anniversary of being put on the lung transplant list (February 14th). Upon our return she went to UCSF for her regular check-up with the lung transplant team. When she told them what she had been doing for the past week they were in awe and called her the “Poster Child for Lung Transplants”!
Each day we send thoughts and prayers out to the family of the person who gave the most generous gift of all. Grateful doesn’t begin to describe.
Posted August 7, 2014
Joy Smith is president and co-founder of FieldHaven Feline Center in Lincoln, California; wife of Preston; relentless advocate for spaying and neutering; healthcare consultant (Coding, Health Information Management and Compliance); fox(and coyote) hunting enthusiast; classic boating wife (1957 Chris Craft); cat and horse crazy and all around “ranch girl.”
Scout on Logan, Preston on Devon, and Joy on Kindred at Chamberlain Ranch in Santa Ynez