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Monday, February 28, 2011

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.

Wednesday, February 23, 2011

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.


Tuesday, February 22, 2011

It Is Done............

THREE MONTHS POST TRANSPLANT.......


Anna says it all! Please click here to read her own words......

Anna at Three Months...

Sunday, February 20, 2011

Changes, Moments


Changes, changes
Last weeks 70's has shifted to cold and snow....

Sunday, tomorrow marks 13 weeks post transplant........

The gift and curse of time. Time heals and passes during those times you say to your self, "this too will pass." That is sure, that is something we can count on. But as time passes what is, is no more. There are constant new moments. The moments of promise you have already touched have slipped by. They will not return. So now as this is a moment I do not wish to let just slip by, I notice. I notice the waining moon that lit up the morning sky as I woke up. I notice the snow melting on the deck outside the window. I notice that now I am in a "better" place. I cherish this moment and this noticing.

I think this is why we love the country. It slows us down. It makes us notice. Less zooming cars, less slow cars backed up at each stop light waiting for the train, less concrete covering the soil that accepts the fall leaves, the winter snow, the spring shoots and the summer dry grass. Back to Murphys again to ponder on our new possibilities. Nothing needs to be cast in stone. No decision has to be made that can not be changed but when you are at our age,we seem to weigh things far more carefully. But at this age there is also an advantage of that time that has passed. As it has passed, our experiences have gathered. We can draw on what we have felt, seen, been through and dreamt to find a direction of sorts. Where has our hearts led us? Where do we resonate? What is most important now? How do we create our lives? What flavor is most delicious?

Coming out of the intensity of the last year can be greeted as a rebirth of sorts. I think this can apply to many such experiences of intense human living. Whether it is a death of a loved one, a divorce, a transplant and saving a daughter's life, an accident, a job loss or other extraordinary times, one can feel the pain, the transition, and open to new possibilities. They are always there. They exist in those moments that you begin to notice. I know that Anna is also listening, noticing, realizing that this is an opportunity, a new turn in her life. She must also draw on her past, what she knows and now what other things she wishes to learn about. The world is open. Where does she resonate? What nurtures her? What nurtures anyone of us in our lives? Are we living the life that we want? Can we make even small changes that can lead us to our preferred life direction? Is there something now that speaks to what you want? Can you notice it? Can you acknowledge it?

We passed a milestone last week. Anna drove with me in the passenger seat. Things are getting better. Each week there is a level of strength that is growing. Independence is not far away. She continues to do well. I feel more "normal" too. I am less tired. As Vincent, the acupuncturist told me, "as you rest more and more, you will feel better." Rest helps us to restore. I am restoring. This is all good and my mind is on the positive today but Tuesday I go back to the orthopedic surgeon. An MRI on Wed showed a significant meniscus tear in my "other" knee. The right knee has the tell tale signs of intense swelling, stiffness and the general inability to get me around properly. Oh boy. Well, what a way to end this journey, the way I started it, but this time Anna has agreed to be my caregiver as I recover from the next knee surgery. I guess it will be poetic justice and a karmic payback. My turn again to be vulnerable and now I will let my newly made daughter with gorgeous lungs shop for me and bring me tea. May this time pass too but not without noticing as many moments as I can.

Tuesday, February 15, 2011

Updates and Dreams


Ahhhh, healthy lungs, suflowers and the country life....

12 weeks post transplant.............

I have been bogging down on the blogging. The energy seems to be waining as we relax more. Time is proving to be the healer as Anna gets stronger and "weller". She still is some moon faced due to the prednesone, a true tell tale sign of a transplant recipient and there is a sense of the delicate. It is like if you see the strong limb of a tree you may reach out to grab it and hold on like its the arm of an athlete but if you see the pink plumb blossoms opening on its stock your inclination is to approach it gently. Anna is a plumb blossom aspiring to be the strong limb and athlete one day.

At clinic yesterday Anna's PFT (pulmonary function test) proved to continue to go up to an FEV1 of 71% and the marker for her small airways at 133% of what would be expected of a healthy person. Wow, to see growth in the PFT instead of decline is a real gift and an oddity still. All is doing well, still some adjustments in meds but all signs are of recovery. Anna was given the go ahead to drive and her sternal precautions were lifted. She was also given the go to be able to travel a bit and go to Murphys! Things are starting to get normal. So I need to back off a bit and start handing over the reins to my plumb blossom.

I have misplaced my camera. I think that word is kind of like "misspoke". Did I misplace it or did I loose it? I can not find it so perhaps the truthful thing to say is that I lost it. I have thought of one more place to look but I can not get to it. I have missed having my camera. I have enjoyed taking photos through this experience and sharing images with the words. Hope I find it soon or I must buy another camera.

I wanted to share photos of yesterday when we went to Jeff Wine's Cystic Fibrosis Research Lab at Stanford where Sara is the research assistant. Anna volunteered her CF sweat for an experiment. It was great to see Sara in action. They are studying various ways to collect data about the sweat response in CF. The sweat test was the original test for CF. Now with genetic testing one can have their blood tested for the gene. I believe any positive sweat test is also followed by genetic testing as well. Because my camera is "misplaced" I used Anna's but it quickly left my hands to meet the floor with a crash. I broke it. I may be having to buy two cameras now. Oh hum.

There will continue to be more updates on Anna as there are still more procedures and tests for her in the next month but I am finding my mind wandering to other things like, do I want to be a farmer? Or more accurately, do I and Doug want to finally end up in a few years "retiring" from Livermore to live full time in more of the country (expanding Murphys) with some acreage, a barn and a few animals, a pond, a country garden, a few grapes and the sounds of the creek and frogs? Is this Livermore home an interim to be followed by a more rural life? On this we are pondering. Could it truly be that what was chronic illness as the center of our decisions is now gone and we can think about ourselves as the center of our own universe now? It is very hard to make this shift. Our minds are so ready for illness and care giving. Can our minds now accept Anna's improving health and growing independence? We do need to make some attitude adjustments so that we can expand our horizons.

........The thought of a cute red barn with a split rail fence holding a miniature horse or two, designing a new home that compliments the surroundings and opens to the western sunset, walking into the country garden to harvest the sunflowers and fresh English peas, sweet and crisp, is very appealing. Just dreaming......... It is a very different place (mental space) than where I have been. I think my mind just needs a vacation........... Could I really do this as I enter this older stage of my life? I must think, why not? All dreams are possible, don't you think?

Sunday, February 13, 2011

Happy Valentines Day


My Valentine!


12 weeks post transplant.....


I am home or am I? Today I was in Murphys, Livermore and Sunnyvale. I have a bed for my head in all three places. Which is home? I crawled in this Sunnyvale bed tonight with my partners here, my MacBook and my IPad. They sleep next to me after I enjoy a little program presented by one of them with my head propped upon my cushy pillow. They are my companions while living a solitary life in the apartment. But, wait, I did give notice! March 12 is not far away so long as Anna's body cooperates and she continues to do well. Then it will be Livermore and Murphys. Hooray! And then my partner will be Doug, my valentine! That will be great, indeed.

Tommorrow morning is clinic, bright and early, got to get some shut eye and hopefully Anna continues to pass with flying colors............ An update will be coming soon........... Happy Valentines Day.

Monday, February 7, 2011

An Update........

11 weeks post transplant.........



Monday morning I wrote a blog post that some how was erased. So annoying. I did not have time to redo so now, I am. I can not remember what I wrote, if it was clever or whatever. It is funny how things change all of the time. What you feel like writing about one minute will change after a period of minutes, hours or days. When you sit to compose it depends on what is on your mind at the time your fingers hit the key board. The words I wrote on Monday are now long gone but because of the photos left in this space I know I did talk a bit about nests.


Last Friday my brother, Greg, my niece Erin and her handsome Ben came to visit us for lunch. Following lunch we went to see the new sculpture at the Palo Alto Art Center created by Patrick Dougherty. Patrick is actually a cousin of ours. His father and our father grew up together on farms in the Hinton area of Oklahoma during the "dust bowl". They were part of a large Irish family with many close cousins. I never met Dr. Ray Dougherty, Patrick's father but when we learned that Patrick was creating these wonderful sculptures in the bay area a few years ago we introduced ourselves to him. Patrick has become quite well known for these marvelous "nests". He uses sticks, twigs and tree cuttings to build fantastic whimsical structures. We are so lucky to have one near by. It is at the corner of Newell and Embarcadero for anyone to visit and walk into. It would be an absolute dream for a child to have one of these in their backyard to play in.




Today we are doing something completely different. Anna and I are spending the day at Stanford hospital waiting for hours while Anna is having a gastric emptying study. They are looking at how long it takes for food to leave her stomach. Slow emptying is a common side effect of this type of surgery as so many of the nerves necessary for normal function are cut and it takes a while for them to repair. Sitting in the second floor B and C waiting area has been the perfect place to see "the team". This is the passage way for the lung transplant doctors, nurses, and others. You do not have to make a clinic appointment. Just sitting where we are you can visit with your health care providers as they make way down the hall......

All is continuing to go well. Anna is improving everyday.......... Life is so good. She wrote such a sweet blog entry about how it feels like the greatest Christmas gift, Click Here.

Visit Patrick Dougherty's web site to see more of his incredible work by clicking here: Stickwork

Friday, February 4, 2011

A Poem and More Reflections


ten weeks + post transplant.....

It is amazing
How it all changes
Each moment
Aware of the textures
Aware of the tastes
Arising
Falling
Opening
Closing
Here I am

I am feeling better now. Working through with my emotions. It has been a week of easy tears. That tends to be more unusual for me but when I have those times it is a relief. Letting some of it out helps so much. It makes me feel more vulnerable with very tender spots that I want to care for. Since I can be a tough one on the exterior most of the time I kind of covet these times of vulnerability. It is nice to feel a bit softer.

But, as I said, I am feeling better now. A letter of notice has been sitting on my table for a day or two waiting for me to act. I think today I feel ready to hand in the notice to vacate this apartment on March 12. That gives a bit of a window past our three month mark of February 22. That gives a little wiggle room for our transition to launch. I have the willies about this because when you go through this intense of an experience you can not believe it is truly lifting. I wonder if there will be another crisis just around the corner hiding from us. Could be, but I am going to vote for this is a go and Anna is just going to continue to improve. No more obstacles, just healing and restoring for us into a new Spring.

Tuesday, February 1, 2011

More Reflections and A Poem


Ten weeks post transplant......

If I am being redundant then I apologize. Anna continues to get better. There are still a few issues like regulating her blood pressure to a lower, more consistent level; getting her blood sugars in better control; the very slow healing at the top of her incision; continued sternal precautions; a resolving blood clot and the need for coumadin but, she breathes. The lungs are perfect. Time will give her what she needs to open and expand her new lungs but they work well and she loves them. Because she is doing so well, at the next clinic visit in two weeks we will talk about her being able to start driving. She is on track to the magic three months when she will not need the constant companion. I am deciding on a move out date from this "crash pad". We are talking about that a lot.

I think the recognition that she is truly a survivor is allowing the past year to come into clearer focus for me. You know how when you are so engrossed in a task you can only see what needs to be done and not the bigger context? Once again, to risk being redundant and boring you, I am recognizing the obvious, we escaped the bullet. Anna survived. Anna is surviving. Anna is beginning to thrive. I gave it my all. I have written about my weariness, my tiredness, my loneliness for home, my husband, and my creative life. Each day I am feeling this. I see this as healthy. This is the way it should be. Heaven forbid if I wanted to just continue this path as the ever involved doting mother. How gross, really. It is much better that I feel I want this to be done so that we can both have our separate lives and our own adult paths.

But last night the grief bubbled up. The pool of grief now is barely under the surface. The new healthy ground is allowing me the luxury of realizing what really did happen this past year. We fought to save her life. It was a pointed determination and conviction that knew not what was to come but was willing to overturn all obstacles including the haunting notion that she was dieing. To fight this fight it was better to set our sites on the outcome we wanted, new lungs, a successful transplant and a new life. What was happening in our midst and under our pounding hands was, Anna was dieing. That's the grief, that is the recognition that is finally here in a deep way. I was a mother in battle. We were a family in the most profound challenge of our lives. Last night's cries and sobs began an emptying of that grief and a deeper recognition of my own personal story. Each of us has one. That is what we are creating and writing as we move one step at a time.

One At A Time

Oh the sands of an hour glass
we watch them falling
one at a time but in a stream
marking time

The gravity of life forces the falling
One pile of passing opportunity with each grain
One pile of mounting experience with each touch down

There it is, the before and after
in front of you
Yet, never the same even in each second
of the passing,
tumbling,
falling sands

Turn it over
don't let it end
the new knowing will usher more grains
building another pile.