Sending Love To Sandra

This morning I received a message in broken English on facebook from Sandra in Barcellona, Spain.....

dear robin.
"How are you?.
Anna I know, I would like to know as this, if you need the courage to not be afraid ...
I can be her friend if she wants. I think I am better but I have bad days, my spirometry is 27% PV1 ... horrible ... but my lungs are still good and strong, I start taking more exercise goes wrong .... the loop, but I get tired less ...
transplantation is a different world to the cystic fibrosis ... I can hardly understand.
but you'll notice that it is a miracle of unconditional love.
I love you friend and pray for your daughter and your family.
I have really wanted to do meditation with you:)

I think it was the summer of 1993 that we met Sandra. She wrote to our local organization, CFRI wondering if there was a CF family that was willing to welcome her into their home for a short time so that she could fulfill her dream of coming to the U.S. Sandra was 20 years old and had cystic fibrosis. We had invited another international CFer to live with us a couple of years before so we agreed to do it again. The original letter Sandra sent was eloquent describing herself and her dream. I wrote back and received other equally inspiring letters and a date was set. Sandra was to live with us for one month in August.

As the date drew closer for Sandra's arrival I received a phone call, "Hello, this is Jose in Madrid. I am calling for Sandra." "Yes" I said, "Is everything OK?" Jose gave me unexpected news, "I am calling because I am the one who wrote the letters to you from Sandra. Before she arrives she wanted me to call and confirm everything and to let you know that she only speaks and writes in Spanish. She speaks no English." I stopped, the excitement about Sandra's upcoming arrival seemed to start slipping away into terror. I did not speak Spanish. Because I was born and grew up in California I had some Spanish in school and knew a few words and phrases like, commo esta, and adios, and hola..... but, I could not communicate with a newbie to the U.S.

Whoa, slow things down. My mind was racing, should we cancel this? Wait, no, it will be OK because after all we do live in California and there are plenty of people here who can help us. We decided to do this so, no stopping now. "Jose, let's go for it. We will find each other at baggage claim and we will figure it out." I can't believe that I did that, but I did. That was a wonderful and crazy month of August with the Spaniard from Barcellona.

The entire month both Sandra and I held our Spanish/English and English/Spanish translation books close but the major form of communication was sign language and love. Sandra was a firery, emotional, energetic, loving, and spiritual person. She was so grateful to come to the U.S. We did the usual tourist jaunts to the Golden Gate Bridge and the beach and Santa Cruz. It was fun and it worked. Where ever you go in California you can find someone who speaks Spanish so there was always an interpreter.

That was a very special summer as our Norwegian CF friend who had lived with us for a year, Mette came back for a quick visit too. August was also time for Camp. That year Anna, about 12 years old, and our international family members, Mette and Sandra went to CF Summer Camp together. By that time we had also recruited Ana and Isa Stenzel as part of our family. They spoke Spanish and promised that they would help Sandra at camp. They all had a ball.......

At one point in the visit Sandra's diabetes flaired and caused her trouble.Unlike when Mette lived with us with the wonderful health insurance from Norway that paid for everything, for her cystic fibrosis, IVs, enzymes, port flushes, everything, for some reason Sandra had no coverage from Spain in the U.S. She traveled here with a chronic illness and no medical insurance. She needed to see a CF specialist. As it turned out, a wonderful Fellow in the Stanford CF clinic spoke fluent Spanish and invited us to make an appointment. He took exquisite care of Sandra and gave her free samples of drugs and helped to stabilize her. There was no charge. That was a true healer and physician with a commitment to patient care and compassion. I will never forget that.

Sandra was also a spiritual seeker. It turned out that she had fallen in love with a spiritual teacher in India that I felt very close to as well. That was a special connection that seemed to bring meaning to how we found each other and felt so close to each other. Sandra visited again a few years later with her husband, Oscar. While she was with us that first summer all she could do was talk about Oscar. Sandra would sigh with his name and place her hands on her heart, she was so in love. When she visited the second time she also came with new lungs. Sandra was pretty ill with her lung disease when she so boldly first stepped foot on U.S. soil and entered our family. The second visit she was full of breath and life with her new lungs.

As you can read in her facebook post, Sandra is not doing as well any more. She has been in chronic rejection for a while now. This is truly sad for her. Transplant is not a cure. It does not mean that once they artfully place these lungs in you that that is forever. Most transplant recipients enter chronic rejection after a few years but not without a blast of breath and life and fulfillment like they never had before. Each transplant recipient has their own story of chronic illness and transplant life. No one knows how well they are going to do with their new lungs and how long they and their immune system will last. Time and survival is lengthening every year as the physicians and scientists learn more and more. Our Anna has a great shot at a long run with her new lungs when they finally arrive.

I am telling the story of Sandra to let you know that this disease is experienced around the world and the miracle of transplant is found around the world too. It is also not for the faint of heart. It takes courage and tenacity and gumption. Sandra has gumption. She seized her dream to come here and nothing was stopping her, no language barrier, or no lack of medical insurance. Sounds crazy, and it was, but her spirit and her willingness to live and squeeze every drop out of life is so inspiring. We send our love to Sandra.

Sandra, you are a jewel.