My Miracle Seems Real Now

When Anna was little after being diagnosed with cystic fibrosis we did not know how long she would live. The idea that her life could be saved through a lung transplant was unthinkable. And here we are now, miracle on order, miracle received. Our hopes and dreams for a future for our child, now a smart and capable young woman can come true. Remarkable!

5 weeks, three days post transplant......

It is Thursday and what a difference each day is making. The healing is in full force. Anna has no more leakage (except for a little via the picc line hole, getting less everyday).......... a big milestone to cross. She felt wet for so long. Creatinine is at 1.2, normal, and the kidneys are functioning fine now. The puffiness that turned Anna into a human marshmallow is lessening a lot. Yesterday in the morning Anna said, "I am just going to enjoy my morning coffee." That sounds like something unremarkable to most people but it is probably the first time she has ever said such a thing. For so many years now her mornings have been a struggle with treatments, meds and cooking a high calorie breakfast everyday, non stop. There has been no time for "enjoying a morning coffee." Life is changing.

After morning blood draw today I suggested we do something at 9AM. Anna said, "we can do that? We can just go and do something? That sounds so normal." We went to Barrone's for breakfast in Menlo Park. We placed our order and the waitress handed us our number, the fabulous number 22! Remember Anna received her lungs on 11/22. It felt as though our mojo and magic was visiting us once again. A relief and a treat creating smiles on our tired faces. After a little rest and nap at home it was time for lunch. Anna was craving Pizza My Heart.......... Ok, lets go out again. Two meals out, breakfast and lunch. Casey was with us. We took him home and as we drove away Anna said, "Hey, let's walk around the park!" We did. Her energy level is fabulous today. I am sure she is going to be running circle around me as she should one day soon.

We are healing, I am still exhausted (call it, tired to the bone, that will require an extensive vacation in say, an exotic location?) but encouraged that things are going to get better, quickly. Let us hope there are not too many turns in the road. There still can be surprises as Anna's meds are adjusted, her blood clot resolves, her blood pressure returns to normal and her body makes itself new. I would like to think that all of the troubles that Anna had in the beginning burned up the bad stuff that she might experience and the only things we will see now are forward progress.

Doug and Sara are taking care of our Murphys home this week and tomorrow Anna and I are going to Livermore! I get to go home! We will stay until Sunday and then we will return to begin a busy week with clinic appointments, infusions, and pulmonary rehab.

Tomorrow is New Years Eve and we are ending this year with hope and optimism and beginning the new year with new lungs for Anna, the hardest parts behind us and a deeper sense of our capabilities and the joy of being so well supported by people who have cared about this journey. The world looks bright. We are grateful to the donor and their family and all of the wonderful medical professionals who cared for Anna during these critical 6 weeks.

May you have a fabulous New Year filled with Love......
I do believe that is the key ingredient.
We all need love and connection.

Watch Out, More Gross Photos

I realized that I never shared the photos of Anna's lungs given to us right after they were removed from her. If you saw the lungs after 5 weeks in Pathology and are still interested and not too grossed out these are fresh and whole. They are injured and well worn lungs that kept my daughter in this world fighting daily against the clogging mucus that lived in them...........

Turned the Corner

5 weeks post transplant..............

First, let us not forget our friend Akihiro in Japan and send he and his family prayers of recovery and the fulfillment of the miracle. We hope that he is healing well.............

Today we left the apartment at 7:30AM to get to Stanford for blood draw, chest xray and transplant clinic. Also waiting for a clinic visit were Steve and Stephanie and Michelle. So good to see them. It was great for Anna to compare notes. Steve had his transplant one month before Anna and Michelle had hers 12 years ago. We have such a wonderful community of CFers who have been able to beat that cystic disease and take a chance on new life through transplant with new mucus free lungs.

Anna's clinic visit was so positive. They believe that she is now doing great. Creatnine is at 1.4 and her INR is below 2 now so that she can have the dialysis catheter removed tomorrow. She has been released from coming every day. Tomorrow we have the procedure at 9AM but then we do not come again until Thurs AM for blood draw and not again until Monday for clinic. Wow, such a difference a few days make. In celebration Doug and I took Anna out for lunch. It was the first "normal" thing we have done since before the "call". The food was delicious and it was such a wonderful relief. It is time now to say, "We are on our way! Anna is in recovery and will be having a new life with experiences of good health she can not even imagine." (Transplant will continue to offer its challenges to health and well being but it will be different than the past years of chronic lung disease that is for sure.)

While in the restaurant it was so striking that just a day or two ago Anna was feeling poorly, too weak and leaky to do lunch out. How did it change so fast? Things really are getting better. After lunch we met Casey at Pathology to say good bye to her old lungs. It was time. With the good news of the morning it felt like the timing was perfect to see the destroyed, end stage lungs and say adios amigo we are moving on........... It was clear to see the lack of health and vibrancy in the old wind bags. They did their thing giving Anna life as long as they could. It was clear that Anna, did need a transplant. The lungs were sliced up for research and investigation like, did this person really need this surgery? I think the answer was, yes. We could see the mucus and Anna enjoyed squeezing those puss pockets to see the slime emerge. I know that is gross but it was so satisfying. What was also special was that she saw her new Xray and compared it to her old one to see how wonderful her new ones really are.

Christmas Miracles

Akihiro
A True Christmas Miracle

We got home on Wednesday afternoon, exhausted. The next day was spent trying to begin our recovery from one month in the hospital and adjusting to all of our new routines that we have. We also had Xmas to prepare for. Well, we did not do much but we did wrap a few presents that others bought so that was fun for Anna. Our little tree adorned the room with the gaiety of the holiday and the gifts began to gather around.

The next day we had a visit from Uncle Greg and Aunt Terri. It was so good to be with them and they brought us the best chicken catcitore (sp) and cherry pie we have ever had. MMMMMMmmmmmm. Seeing family and receiving these kind gifts helps us so much.

At first we thought that our Christmas would be missing Casey and Doug due to viruses but as it turned out Casey had been banished from us for a whole week and was better and the cold that Doug thought he had never turned into anything so, our little Christmas Miracle was that we could all be together. After driving to Stanford for our daily blood draw in the early morning Anna and I returned to the apartment with Sara and Lou cooking up some Xmas bread pudding and other wonderful goodies. We had a lovely morning of food and gifts and laughter and reminiscing about the last month and all we had gone through. We were all glad to be done with that chapter but appreciated the love that sustained us all.


Sara, the Christmas Elf

The most amazing thing is that in Japan our friends, the Adachis were having their Christmas Miracle. Akihiro, 20 years old with CF (so very, very rare in the Japanese) was called for his lungs! So, so amazing. He was listed around the time that Anna was but in Japan the waiting time can be so much longer. Perhaps because of the new changes in the law and an increased social awareness and acceptance of organ donation in Japan Akihiro's wait was not too long. We are so excited for him and his parents. Akihiro's surgery was 12 hours long. A very long surgery but he is now in recovery. May he be surrounded with love and support and make it through with few if any complications. We are so astounded at this special, incredible Christmas Miracle!

Anna, So Happy To Be Home

We will continue to go for blood draws everyday until Wed. Tomorrow is a clinic visit and an appointment to see Anna's old lungs in Pathology. Tuesday Anna will finally get the dialysis catheter removed. Anna's kidney values continue to improve. She is getting a little better everyday. Thank you again for all of your caring. We hope that everyone had a wonderful Xmas with their loved ones............ that is truly all that matters. It is there that the miracles are truly found and on a daily basis.

Did You Have A Christmas Miracle Too?????

Final Highlights As We Hope To Leave Today......

An Xmas Gift From Isa!

Day 30 or 1 month post transplant to the day......

We are awaiting the final word but confident today Anna will be released. Coumadin levels still too high to pull the catheter but it can wait until next week as an out patient. Going home is far more important. Creatinine is still going down. Things are working, sort of. The Tummy needs more healing and etc..... There still is a lot of healing to be done. Being home will help with all of that along with the added ingredient of time.

Here are a few of the lighter side of highlights this week.

A Special Visit From Pet Therapy

Anna's Wonderful Dr. Steve, the surgeon fellow

Finding Cheer In Making Cards And a Few Decorations

The Big Highlight next week will be seeing Anna's old lungs in Pathology on Monday at 1PM. So keep a lookout for pics that may gross you out or may fascinate you..................

Tuesday Update.....

Another update about getting out of here. Anna's coumidin levels were too high to pull the catheter today so, we are hoping tomorrow morning. I am cleaning up the room, putting things in the car and getting ready for an exit. So, as Anna said, she is going to use a little of her magic to get us out tomorrow. It may be as late as 5 or 6 but getting out is the goal.

Now with no chest tube and being unhooked from IVs Anna can walk the halls without tethers. She is doing better and better and there were no major dramas today and even a little bit of a siesta. So, the blogging is starting to slow down as we wind down on this hospital chapter and seek to go home and REST. We are looking forward to Xmas and a little fun. Then after the holidays our new adventures will continue to be fodder for stories and blogging as we finish the recoop period and Anna learns what it is like to have new lungs............

Yesterday and Today

Yesterday had its ups and its downs. Down was the blood sugar in the morning that had a hard time going up because everything else was coming up so nothing could be going down until an IV push of sugar brought it up in the right way......... In other words, the morning was a bit difficult. The afternoon was better.

Today, the last chest tube is coming out, the dialysis catheter is coming out and we are scheduled to go out tomorrow! We are ready.......................