What More Can I Say?

Ahhhhhhhhhhhhhhhhh!
Thank you for the Miracle!

Nine months gestation.................

Today is the day! I am moving out. Sitting here now in the wheelchair (only chair left in the apartment) waiting for Cort furniture rentals to come and take the rest away. This is the day I mark Mission Accomplished. I am moving home to Livermore full time now. And it has been exactly nine months in this apartment. A perfect amount of time to gestate and release a daughter into her second life. The time here covered the period during transplant evaluation, transplant listing, transplant waiting, transplant and transplant recovery. I have been here for three seasons Summer, Fall and Winter. We had Christmas here huddled together in the front room with Anna's recovery bed next to our tiny Target tinsel tree. Sara says it was the best Christmas she ever had. This place held me in my tiredness, in my sorrow, in my anxiety, in my hopefulness, and in my final immense gratitude. It is done.

I am so glad that I am not getting on a plane to some far off city but only driving 1 hour from here. We will find a new normal and ways to be together in good health and for fun. I am so happy to return home. Before I do I am writing my last blog entry for this chapter in my life. I am serious this is it. This blog was to be about my experience being a mother of a 29 year old with cystic fibrosis who needed a transplant. That is not what I want to write about any more. I want to claim other parts of my life. I want to focus on other aspects of who I am. I want to dive into my third chapter of life feeling fulfilled and ready to explore other ways to be. I am considering whether to start another blog so I have set one up in case I can not get the writing bug out of me. I will call it Chapter Three (click on the title to get there). If you are interested you can check in. I give no guarantees how much I will write or even if I will but I thought I should set it up to give me an option.

Before I sign off I want to mention the serious and the silly. The serious is the earthquake and tsunami that hit Japan today. The morning was spent with the TV on. I send love and prayers of protection to my friends in Japan. I am especially concerned about the Adachi's and hope that Akihiro who received his lung transplant in December is doing OK. They live in Sendai which was devastated with the rising water. Part of my journey to Anna's transplant was via Japan where I prayed in their temple. Japan is a very special place and my heart goes out to everyone there.

May Blessings Rain Upon Japan

And here is also the silly. When I moved here I posed the question...... how much yogurt would be eaten in the time I lived here? I reported from time to time on my goat yogurt consumption. I saved every container for this very moment. The answer, 39 containers of goat yogurt, plain and vanilla. Think what you may about this food of choice for breakfast.

So, here it is, my ending to the story. I received hope in Japan that a Miracle would come for my daughter dieing of cystic fibrosis. Many serendipitous things happened along the way. We even met and received blessings from the Dalai Lama. The Miracle arrived. It was tough and grueling for a good part of this journey. Many tears were wept and many wonderful loving and fun times were had too.

We must also always remember that someone we do not know lost their life in order for Anna to receive a new life. We are so grateful. And now, because of this kindness and generosity from another's grief we are beginning new lives, all of us, Anna, Casey, Sara, Lou, Doug and Me. It has been an amazing journey for sure..................

Our Last Supper (Lunch)

Want to continue to follow Anna? Go to Anna's blog.

Visited With Grammy

Today we redeemed a gift to have a pedicure........... fun and relaxing. Thank you Linda, it was great. After our feet were pampered, cleaned and beautified we went out for lunch. Food again, my increasing waistline is glad all of this fun is soon coming to an end. Our restaurant search lead us to Redwood City and a funky little restaurant that in her last years was a favorite of my mother's. As we walked into this late 50's era place we immediately felt Grammy. Mom was here. I took her here to lunch a few times. The lunch was good, not fabulous, but it felt that we were with Grammy. This was a surprise for me. I did not realize that today was a day to include Mom in our day. It was perfect though.

After lunch we decided that Mom would have wanted us to have desert so we traveled up the hill to the Woodside Bakery. Mom and Dad lived in Woodside for 30 years. It feels like their home still. They loved the bakery. We bought a small box of cookies "on Grammy" and coffees. She would have been so happy that we had these cookies. To spend a little more time with Mom, we went to the Woodside Library where a bench was placed by our family in her honor in the beautiful native plant garden. It was indeed time to talk with Mom. It was time to say, "Mom, look at Anna. Can you believe it? She has new lungs!" Mom would have been so thrilled. As Anna said, she would not have done well during the intensity of the hospital recovery and all but only if she could see her now!

We sat on Mom's bench eating cookies and sipping our coffee. We felt her and Dad all around us. They were wonderful people who loved gardens, nature and Woodside. Again, it was a full circle moment of completion. Where I had sat on that bench my self since transplant, Anna had not. It made us both feel good to show Grammy the results of the past difficult year. When we sat there Anna said, "I have a feeling I am going to have these lungs for a very long time. They feel like they are at home inside me. They are happy here." Love that thought!

Let The Show Begin!

Anna with Marc Smolowitz

Finishing up post transplant........

Sunday we all met in San Francisco for the showing of the movie, The Power of Two for the cast and the crew. It was again at the Viz theater in Japantown on Geary. The film is finished and tells the story of twins with CF who meet the challenge with courage and creativity breaking through boundaries, living beyond expectations, and becoming international advocates for organ donation and transplant. Their struggles are told honestly and their triumphs are an inspiration. Interwoven in the story is Anna, their friend for 20 years. While their story is being told, this person who was a child when they first met her has also grown into an articulate woman fighting the same foe. Anna bravely shows her end stage CF and talks about what it is like to be on the transplant list. I am the tearful mother by her side.

It is a movie and a portrayal of our family within it that we can all be proud of. I hope that the film offers all of us an opportunity to be vocal advocates for organ donation. We know that everyone wants to see it but there is an official process that must happen first. How to market the movie is first on the agenda. We were promised that this year there will be a gala event in the bay area for family and friends and all interested to come and see the film. That will be very exciting. If you are interested you can stay in touch through Anna's blog, facebook, the Power of Two web site or (not really announced yet) my new blog. When there is a local date for it to be shown we will let you know.




Notice, Casey, Doug and I (behind the camera) were wearing masks. Anna shared her little stuffy nose with us so we were very careful at the movie. It was eye opening to have to wear a mask like she does. It is warm with your hot breath filling it but it is also a feeling of safety. We were not sick but we wanted to be very careful to not share any germs. There were a number of transplant patients at the showing.

One more comment about the film. It was striking to see Anna pre-transplant. In the film we revisited the sounds of coughing and the tightening of the stomach as you watched her fight for clearance. CF is such a hard, hard disease. Those that have it and fight it are remarkable.

Among our other CF friends out there are Steve and Akihiro who both also received lungs recently. We understand that Akihiro is doing well in Japan. We are so pleased. His father is portrayed in the film with photos and childhood video of Akihiro stressing the differences in CF care in the US and in Japan. He is the first CF double lung transplant recipient ever in Japan.

Steve is still on some IVs and working with his meds. He has had a rough time in his recovery since rehab and we think of him all of the time. We look forward when he gets better and this summer he and Anna can meet in the pool for a swimming fiend duel.

And, there is another friend of Anna's from CF Camp and Retreat, Katrina. She is in San Diego and has been on the list for over a year. Katrina is severely ill at this time. There is a call out for a living lobe donor for her because she can not wait any longer. It is a small number of lung transplants that come from a living donor but it does happen. Those that are a match can offer a lobe of a lung to someone on the list. In this case you usually need two living donors so that both lungs can be replaced with lobes. For Katrina, they see this as a last chance for her.

I know that Anna is struggling with how unfair this seems for Katrina. She has been watching her since she was listed long before Anna was. Patients wait much longer for lungs in other parts of the country and even in this state. Northern California has a very good record for organ donation. There are patients on the Stanford list who have been there over a year and are still waiting but the statistics are so hopeful in this area for them to finally receive their lungs. This just underscores the great good fortune for Anna that she was able to receive her gift after little over 3 months. We are so grateful.

And again, it was poetic justice that as we are wrapping up this phase of the transplant experience we got to see the final film. The sense of full circle is real. We are moving on.

Refinishing, A Very Good Project

Week 15 post Anna's double lung transplant......

How to begin to write this week? I will write daily until I give up the keys to 1513. This is the last week of blogging about a Miracle On Order and being "the mother of a 29 year old daughter with cystic fibrosis" edited to: "the mother of a 29 year old daughter who received a double lung transplant". I took up this project to blog about this experience because, 1. I needed a creative project for me to do while I worked to support Anna; 2. I wanted to share about this miraculous and exceptional experience of resurrection and medical technology because it was so extraordinary; and 3. It was simply therapeutic for me to write it down especially knowing I had an audience that included my family, close friends and new friends who could witness this life event with me. So, to end this blog I will write as I began it, just telling the story.

Last week Anna and I went to lunch and chose PF Changs. After we sat in our seats Anna's eyes lit up and she reflected, "Mom, we have come full circle. This journey started here. Remember it was during my transplant evaluation that we went out to lunch at PF Changs and you got that fortune?" I remembered, "Wow, you are right, Anna. We then swore that we would not have another fortune cookie after that, but today we should."

That fortune in early July said, "You will soon witness a miracle." It was stunning. Finding a miracle was exactly what we were looking for. Anna was at the end of her life with CF lungs and the only miracle to save her was new lungs. We mused on what "soon" meant, such a relative term. Now we know, soon meant 119 days on the transplant list. We could not know this until the time had passed. All that we could do was to trust and have faith that our miracle would arrive "soon".

After we enjoyed a lunch of lettuce wraps, hot and sour soup and pot stickers the check arrived on the ceremonial little black tray with two cellophane wrapped fortune cookies for us. Anna chose hers and I opened the other first. My regret is that I did not photograph it right away. I slipped it into my wallet, it is not there now, but it did say, "Good things come to those that wait." Perfect. Yes, when you are patient and you wait for "soon" to arrive, good things indeed do come. Anna's said something about the exotic and traveling to the tropics. That was really perfect for her too. From crippling pulmonary disability to being able to realistically dream of a tropical vacation is where she is today. So, we came full circle, miracle received.

After that lunch I returned home to Livermore for the weekend. It still feels novel for me to be home. It has been suggested that Doug and I need to go away, that we need a vacation. It is just that I have not been "home" hardly at all in the last year and that going on vacation is what it feels like when I go home. I just want to be home for more than a weekend now. I want to get up in the morning from my tempurpedic mattress (ahhhh) with a greeting from my sweet Roxy dog. I want to go into my kitchen and make my coffee there not here in this Sunnyvale apartment. I want to do this day after day after day after day. Then I might think about a vacation to some far off land.

I have thought often about something that I say, "I can not wait until I can have my life back or start my life again." When I say this it makes me stop and reflect, "if this has not been my life, then what...... is". This constant statement goes back to one of my first blog posts on June 17, 2010 when I wrote, "I do not want to do this. There is something inside of me that rebels." I would never choose to have to fight against the most formidable foe of end stage cystic fibrosis. No one wakes up one morning and says, "oh, today, let's see, ah yes, I want to spend my time fighting for my daughter's life and wait for a lung transplant while I watch her suffer and nearly suffocate from thick crap in her lungs." I had to do what I had to do. It is now done. Now, I want to wake up from more creative dreams. Enough of this type of struggle.

So this weekend I started a project, refinishing some chairs. I found them on craigslist for $12. I think they are kind of cool. So, symbolically it is really therapeutic. I spent hours taking off the finish. I worked with steel wool rubbing off the old worn and ugly to reveal the beauty of the wood underneath. I am not sure if in the end I will want these chairs for my new, old round kitchen table. I am not sure how they will end up. But, there are possibilities that they will be great. It is fun to have this project to get me started again. It is just what I needed to begin to say, I have my life back. I am getting up each morning to do what I want to do. And my dear Anna, she has been "refinished". Her old veneer has been taken off and the beauty of the new is glowing.

At clinic yesterday Anna's PFT was 78%. It is continuing to climb. She is watching herself get better and better and better. All is good with just a few med adjustments. She graduated to going to clinic monthly now. Amazing. She is very, very happy and there is so much time in her life now, she does not know what to do with it all. Projects. Yes, she needs projects too..........

Tendrils

It happened yesterday. We were clear. The time has come. We are done with this phase. Sitting together with "nothing to do" Anna and I recognized the signs we were looking for. I wanted there to be enough cushion of time to find them. I wanted us to find them together so that it was mutual.

Anna currently has a small cold in her nose but she is handling it. She immediately had a swab to check for any bad viruses. There are none. This is just a little cold in her nose. I must note this is a very unusual event for her. No cold that I have ever remembered was "little". All colds went directly to her lungs for a protracted CF event. And, I mean all, since the beginning of time. Without CF lungs being vulnerable to the whims of viruses she is handling this one like a normie. It is a sign, a sign that this is working.

Other signs are the obvious such as, she is driving, she is cooking, she is getting on with it. What is left are the tendrils of holding on to each other. This is why we needed this cushion. We have held on to each other so tightly so lovingly, with such respect and care through this year that finding those tenacious binds and releasing them is difficult. Our desire for our own lives and discovering who we are now is our push. Excitement about how to live a "normal" life (albeit as a transplant patient now) is an inspiration. But, the love, the friendship, the companionship we have had with each other to have made it this far through so much pain, fear and just plain "Hell" is so sweet and sticky like glue. Time has come to dilute the glue and separate into our lives. We will find a new normal for our visits and time together as mother and daughter and as a family.

Many people have commented to me that they have enjoyed reading the story that I have told in this blog. I am so grateful for all of the positive comments and compliments to me. I am so grateful to have been able to write about this extraordinary experience and to have a way to so freely share it with others. Modern day technology is quite astounding. The phenomenon of blogging about ones life and sharing with others is an amazing opportunity. I believe that it must be most valuable to the people out there who are suffering from some difficult fate and need community and information. It is very lonely to live with life threatening diseases and situations without knowledge and community. It is an incredible world that is so open today.

I will complete this blog next week. I hope to gather my thoughts and reflections as I finish emptying the apartment and handing in the keys. That will be a monumental day of liberation for all of us. May our dear Anna be blessed with good luck in this journey. May she be blessed with good health, good medical care and opportunities to fulfill her life's dreams. May all who have been there with us also be blessed with goodness.........

Blowing In the Wind

Week 14 post double lung transplant......

Well, this past week we went with the direction of the wind, so to speak. From art to science, and with country friends visiting and luncheoning in the city, we did many different things. The week ended with Anna passing another milestone of independence and good health. Anna had a dinner party for friends! A simple thing to do but for her it was a very difficult task in the past. Her energy level, time constraints with busyness due to treatments and regimens and cross infections concerns made it so difficult to simply have friends over for dinner. Saturday she had 4 women, all great supporters of her and connected to her CF life for a birthday celebration for dear Linda. Wonderful, life is getting even more normal.

Thanks to Sue and Peggy for visiting. Here is Peggy's coffee reflecting an image of the sweet hearts of these two special friends...........

After visiting the art museum with Peggy and Sue we met Sara at the CF Lab for more research of Anna's CF sweat.

And thank you to Dr. Wine, a long time friend of ours on this CF path. We started this journey together when our babies (only days a part in age) were diagnosed. It has been such a life time of experiences, changes, trials and miracles.

Only two more weeks with the apartment............ and I think this goes for the blog as well......
I will say more soon.

Celebrating, Do You Know Happy?

Celebrating February 22 2011, three months post transplant, November 22, 2010

We had heard the magic of three months. Well, we also know that this magic is not for everyone. There are others who are continuing the struggle after three months to get their feet under them. Our friend, Steve landed back in the ICU about two weeks ago with a terrible infection and is home now on continuous meds. He is four months post. We think of him every day and send good vibes. Anna constantly reassures me, "Steve will get better, it will happen. He has to and when he does he will forget about these hard times." Steve we can not wait to see when your magic timing of turn around will be.

But, for Anna, the magic of three months is true. This week seems even more different. She is more in touch with getting on with it. The beginning of driving, spending some time alone, building confidence is strengthening her. This week I will only spend three nights in the apartment. We are weaning. It is hard as we are such fast friends enjoying time together, lunching, shopping, Oprahing, healing. But, we need our independent lives and new directions.


We had to celebrate this date so of course Anna chose lunch at Yakko's, our celebration restaurant this year. Temptation roll, a bento box, and a big smile for Anna. We then drove to pulmonary rehab at Sequoia Hospital. Anna's getting so strong. Steve is not there any more as he is home healing but today a new rehab buddy appeared. He is three weeks post transplant after his second double lung thransplant. He rejected his lungs that he received 5 years ago. Amazing to see how incredibly well he is doing. He is a CFer too. So now as I slip away even more, Anna has this new buddy to keep her entertained.

Update on my "other knee". Remember the HELP button in the elevator at the orthopedic surgeons office? It was still there staring at me. I did not have to push it this time as he declared, no surgery at this time! His conclusion, there are tears and degradation with arthritis as the main culprit for my knee swelling now. He told me to lie down while he drew his syringe of orange stained fluid from my sweet knee and shot in some cortisone. "Rest the knee for ten days, use ice and then get back into exercise slowly." OK, will do. A much better outcome than last August.