Pages

Thursday, December 30, 2010

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.

Monday, December 27, 2010

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.






Sunday, December 26, 2010

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?????

Wednesday, December 22, 2010

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, December 21, 2010

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.......................

Sunday, December 19, 2010

A Good Day


Anna and Jill

Day 27 post transplant......

It was such a medically uneventful day. We are waiting for the chest tubes to finish their draining and the coumadin levels to get to the right place for us to leave. Maybe Tuesday, we hope. Kidneys are doing better with creatinine levels starting to go down. Yes, finally we may be on the road.

We had a special, special visit from Karen, Mel and Jill. Anna and Jill were very good friends at Ohlone Elementary. Two cute girls, now, two wonderful women. So good to see them. Karen brought us hot cider, deeeeelish chicken barley soup, salad and bread, and cookies. It is feeling a lot like Christmas around here. Good freinds bearing gifts, sweets to taste, cider to warm the tongue and belly. Thank you so much....... And then a package arrived from an Elf. Thanks to Melissa and her mom, Lori. So, so nice and appreciated. It contained a Christmas Glee CD (Anna smiled!), fudge, cookies, more cider mix, and more. We feel loved. Thank you so much.


And to top off the day we even were able to watch the Disney movie from start to finish tonight. It was Santa Clause with Tim Allen, a favorite. What a relaxing day at the funny farm. Won't be long until we get out of here.



Hey Santa, Get Us Out Of Here, Please, Before Christmas!

Saturday, December 18, 2010

For Me, A Day Off

A quickie about Anna. Her dear Emily came by today. She arrived as I was heading out. I got in the car with my sweet Roxy dog. We drove home to Livermore stopping at our favorite Mexican Grill for shrimp tacos for lunch, then, a nap and deep hot soaking bath......... Ahhhhhhhh!

Today Anna chose to have some of her "puff" taken off with the dialysis machine. She did not need a regular dialysis but has some retention problems still because of the kidneys, the pred and the blood clots found in her right shoulder and arm. They are not worried about these clots. They were found unexpectedly with ultra sound. Anna has a pic line in her right arm, a dialysis catheter in her right chest and had central lines in her right neck. All of this is an environment that can create blood clots. She is on a heparin drip to help get it resolved. She will take coumadin for a short time after leaving the hospital. Besides that she is on IV antibiotics now for two weeks (we will continue them at home when she leaves). She is still draining from her chest tubes so can not take them out just yet. Anna also is still enjoying the relief she gets from vicodan for the pain from the second surgery but over all she is getting better and stronger every day.

Each day we assess what is happening and things are looking up for a release early next week. So, so hope so. We started planning Xmas and what we want to eat..............

My rest at home today was so needed. I will be back to the hospital in the morning to relieve Doug who is being the wonderful dad and husband today and tonight.

Friday, December 17, 2010

Olympic Training Resumed........


The Holiday Spirit At Stanford Hospital

Day 25 post transplant.........

What is the greatest gift? Friends who get it and come to see you and encourage you. Lisa and Patrick, Anna's CF transplant buddies from CF Retreat came to see her today. What a boost this type of visit is. They exchanged war stories and then Anna could see them in flesh and blood and realize that she too is on the other side. Things are just going to get better even though there will be more challenges. So amazing.

And Thanks to Nahara, Isa, Ana and Stephanie for coming by the day before!


Today was "peaceful". Anna had to be desensitized to an antibiotic and had to move to the floor above temporarily. We pleaded to keep our room as it has been the best room we have ever had. It is considered a VIP room when big wigs stay. We can see why. It has wood blinds, pergo wood floor, soft lighting, comfortable seating and it is so quiet. It has made this stay "two" so tolerable.
As the day went on Anna's energy returned and she felt better and better with far less pain.

After we got all settled back at our favorite room and all meds we on board we went for a walk to resume Anna's Olympic Training. Anna walked a brisk 5 laps. He nurse followed closely and measured her oxygen saturation while on the walk. Anna satted at 97, 98, 99 % while exercising! Tears in my eyes. Unbelievable. Before transplant during her "6 minute walk test" Anna walked with 6 liters of O2 and a saturation of 94%. This time, no O2, the giant transplant mask and lugging IVs and drains.............99%!!!!!!!!!!! She is on her way.............

Thursday, December 16, 2010

Every Athlete Needs A Day Off


Day 24 post transplant.......

Today, Olympic Training took a day off. Last night Anna was back in her room after surgery by 9PM. It took a while for her pain to be managed in the recovery room. This procedure was difficult and painful. It was a success though. They cleaned out the space behind her left lung and with some peal and sloughing off of the plural wall the lung is attaching itself to the chest wall. The remaining chest tube will be watched and hopefully removed tomorrow.

Anna's creatinine level today is the same as yesterday. This means that her kidneys are taking care of things much better. It is still some what high and so is her BUN but they do see improvement so there will be no dialysis today as well. This is a very, very good sign. It feels as though we may be at a victory. But let's not celebrate yet. It is possible that she will be able to leave the hospital tomorrow afternoon. What a treat it would be if we were done with dialysis and we never had to visit our local dialysis center like we thought we would have to. One step at a time.

The amount of courage, fortitude, good attitude, and general soldiering through is so much more than Anna imagined it would take to get these beautiful new lungs. If she was told before hand I do not think this would have mattered, as this is truly a miracle that is saving her life and going to give her a life filled with new......... so much, but our expectations would have been more realistic. Today Anna has to re-coop from the surgery and pain overload. So, today Anna said it was a day off from Olympic Training and I said, "Every athlete takes a day off. It is an important part of the training."

Wednesday, December 15, 2010

Surgery and Olympic Training All In One Day....


Buff Anna Modlin

Day 23 post transplant............

Today Anna decided that this was the first day of Olympic Training. We walked more briskly than ever around the unit for a total of 7 laps. That is over a mile...... Because Anna was feeling so strong she declared these her first land exercises in preparation for her swimming competition at the next Transplant Olympics. And we were off and ...............

Then we saw the team. Anna is also becoming an olympic peeeeeer. Yes that would be an appropriate category for a transplant recipient with kidney failure who overcame the injury. She is getting better, so much better that they decided to not do dialysis today and to watch her kidney numbers one more day to see how much improvement she has made. Yaaahooooo. That was good news.

And then they decided that she needed another surgery. There is still some fluid behind her left lung so, they are going in laproscopicly to take out the fluid, work with the chest wall to cause more adherence between the lung and chest wall and inflate her lungs to 100%. It is now at 95%. They believe this will solve this issue for Anna to ensure the full use of all of her new lung capacity. They will leave the left chest tube in for another two days to be sure there is no more drainage and in surgery will take out her right chest tube as the right side is fine and needs no other fixing.




Anna Is Amazing, Attitude All The Way To The OR

I had made a chair massage appointment at 1:50 and had just settled in for about 10 minutes when my phone vibrated in my pocket. It was Anna and they were to get her for surgery in 15 minutes. Well that ended that but after they wheeled her away I was able to go back and get a relaxing rub. It helped a lot.


Yes, it feels sometimes or like everyday, one step forward, one step back. But really overall we are moving forward. We just hope that she will not slide backwards from this other surgery. There will be tiredness and soreness but let us hope that is all.



Sara and I are in the surgical waiting area. Sara is crocheting. She is a crafty one and enjoys the relaxation that comes from yarn arts. I am blogging and updating. We are also visualizing Anna in a successful uneventful surgery and the resumption of our Olympic Training.........

Tuesday, December 14, 2010

Let It Snow, Let It Snow........


Time for another update. Yesterday was dialysis, Xray and etc.... the usual circus and then Anna slept after massage and I got out for a walk to the shopping center..........

Today, no dialysis, watching the drainage and still healing. Xmas music is on pandora radio with the nifty stereo system Doug set up for Anna....... oh night divine.... oh night, oh night, divine.....
lovely tunes we listen to once per year are filling our private room with sounds of good cheer. Nurses walk in with smiles on their faces and Anna and I are loving the break.

Anna thinks things are definitely getting better. She is eating a bacon, lettuce, mayo, hummus sandwich, good for CF and to help gain some weight. Maybe things are starting to turn around. We need to watch how much drainage there is on her left side. The right side is now clear. It was always the left side where Anna had most of her lung pain or where crackles were heard the most. Guess it was that lung that was the most infected and created the most adhesions to her chest wall. So, may the left chest wall heal and heal and heal to allow for these beautiful new lungs to settle into their new home.

What is hard for Anna is to know what is normal or what is to be expected in this stage at three weeks post. Isa has helped a lot with having been there. She has been so wonderful thinking of us all of the time and asking if we need food, and visiting and cheering Anna on. The nurses help too especially our new nurse with curly hair. She gets the curly hair thing and we use the same Deva Curl products.......... now we are onto a much lighter subject. Ah yes, things are better today and far more sane. Hope it continues and "let it snow, let it snow, let it snow"......... say it again Bing!

Sunday, December 12, 2010

Three Weeks


Day 20 post transplant but not yet post craziness.........

Tonight we were all together celebrating Doug's birthday on Tuesday and we realized it was three weeks ago tonight that Anna got her call. We never expected the intensity of this past three weeks. We are seeking some normalcy and stability so Doug and Casey are going to go to work tomorrow. It is important that we can have a little of what was to get us through all of this now.

Yesterday Anna got her new chest tubes that seem to be working. This means that through this whole surgery experience she will have had 7 chest tubes........ that is a lot. Right after their placement an Xray was taken and it appears that her new lungs took back the plural space that had been filled with secretions. This is good and will be confirmed with the result of a CT done this late afternoon. We are truly hoping for no more surgery but if she continues to drain then she may need some help with that through another procedure.

Anna is peeing a little more each day. She is not at a normal amount yet but at least we see progress. The dialysis will continue. Last night she had to have a session at midnight that made sleeping a bit difficult for me but Anna slept through with the help of some vicodin easing the pain of the chest tubes. Hopefully tonight will be calm and peaceful as sister Sara is spending the night. I will be back bright and early.



Earlier today we had fun, actual fun, cutting out magazines for holiday stuff to make cards. What a good hour or so it was with a few interruptions but not much. As usual we try when ever we can to slip in a little something for us. the night before Anna and Casey tried streaming Survivor and saw it but not without many interruptions. The hospital is not, I repeat, not at place to hang out to be able to do what ever you want to do. You are very lucky to find little windows of calm. Today provided a bit of that calm so that Linda could come a be a chum for Anna.


We also planned a birthday party for Doug with Casey, Anna, Lou, Sara and myself surprising him with chinese take out and cake brought over by our dearest Peggy and Bill. We have really needed some help these past three weeks and there have been a number of friends who have stepped up to the plate. We are grateful.


Hopefully we will be back home again on Wed and there will be no more hospital stays.......





Saturday, December 11, 2010

New Chest Tubes........ Let it Flow!


Trying To Keep Our Spirits Up
As Banana Bunchers

Day 19 post transplant..........

Sitting in the waiting room outside of the floor of Anna's room. I finally got some chocolate. Unfortunately the gift shop was closed so had to resort to the candy machine for Hershey's, but hey, that and some tea with milk are just what I need.

Anna is in the room with Dr. Steve having two new chest tubes put in. Think flow............ We are hoping that the fluid build up from the irritated chest wall will all come out easily. We will know by the end of the day tomorrow how it is going. If this does not work then she has to have another surgery to clean it out. Oh please, can it all be a little easier on my sweet Anna? She is such a trouper. It is time for things to go in her favor.

Dr. Steve tells us this happens and the good thing is that they know how to fix it. It is one situation after another that they fix. So long as the fixing continues we will get there. Anna continues to pee a little more each day it seems. Kidneys are not there yet but hopefully soon. There is that soon word again. It seems to pop up all of the time especially when you want soon to be now. Can not wait until we are looking back at it all and just see the rosy side with energy, good health, lots of time on our hands and breathing deep.

While sitting here one of the docs dropped by to say things are going well for her. Things are beginning to drain. This doc says, "Anna is going to be fine. I see this sometimes where in the beginning the patient has complications then they get through them and sail ahead. That is what I anticipate for Anna." I like that sentiment.

Friday, December 10, 2010

Day One, Volume Two


Hey Bunchers!
We Still Need You and Your Healing Thoughts!

Day 18 post transplant......

Well, the day began at 7:30AM for blood draws, pic dressing change and chest xray. While in the ATIC we saw Steve and Stephanie. That was so great for Anna. Steve is looking good and has surmounted a lot of hurdles. He was great encouragement. Anna heard him yell to her that week 6 post transplant was good. That helped so much. They are transplant buddies.

We made it to dialysis by 8:30. Anna's treatment began OK but as has happened each time she clotted the line and we had to have TPA injected and wait for an hour before the line was clear and we could start again. The frustration of these things happening got to me today. I see her trying so hard and so stunned that she has this kidney problem that she never expected and then there are these great annoyances. It is hard to keep on keeping on sometimes, but we do.

Because of this there was no time to get to clinic so clinic came to her. The support was wonderful for Anna. She truly feels that they care about her and that means so much. Dr. Dave showed up and reported on her xray. They saw an increase in fluid in her chest cavity and because Anna has had some reports of discomfort with breathing from time to time they decided it best to try to draw off the fluid. So after dialysis we went on to another procedure, a thoracentesis where they try to get the fluid to drain through a needle catheter. There was some success but concern it was not enough so we went back to xray. The conclusion was there is probably new and old blood between the new lungs and the chest wall that is thick and forming a membrane like sheet that needs to be drawn off with a larger port. So............

On the first day of Volume Two Anna is back again, admitted to Stanford Hospital. Darn! Last night she slept 8 hours at home and was doing so much better. At least we had two nights at home to rest some. But her strength was also improving a lot today as well. Anna told me that she was not scared about this, that this was just one of those things that happens and you have to take care of it. Apparently this happens to CFers with transplant. The old CF lungs adhere to the chest wall and cause a lot of abrasion. It takes a while for this to heal. So, extra bleeding can happen. Again, this amazing team of docs is not worried and they feel that they can deal with this and we will move on. So that is what we will do.

Doug volunteered night duty again. He has been so fantastic and has enjoyed those late night times with Anna in the hospital. Since I am the early bird it helps me to sleep and arrive around 7 to relieve him. Anna is so much more herself now. It will not be long until she will be able to spend night times with out us but for now it helps her with moving around, remembering things and to just have support with one of us there in the night and around the clock.

Hopefully the procedure will happen tonight or early tomorrow so that the healing can happen and we can return home again. There are other CFers that are in the hospital now too that Anna knows........... she sends her best to them all.

Thursday, December 9, 2010

End Of Volume One!


A Treat For The Last Day

Day 17 post transplant...........

We are home, at least at our temporary home. Anna's bed is set up in the living room area so that she can be the center of the universe which of course she already was. This is working well for taking care of her.

Last night as Anna and I drove away from Stanford Hospital in the dark and in the rain we both broke out in tears, a release from all the too much that has been going on. Then we turned onto Welch Road with so much of our life represented there including my OB's office where I learned I was pregnant to Packard Children's Hospital where Anna's health was in the hands of the CF center. What a ......... journey. And then it felt as though we were driving home with a new member of the family, our new lungs. It is like there is a new baby, a new being to learn about and discover.

Anna is doing better each day. She is still weeping on her arms from the excess fluid due to her kidney failure and pred. We have to change gauze dressings regularly to soak up the seep-age. This is annoying as Anna always feels wet. She is peeing more which causes occasional jubulations but it is still a hard recovery. The mood swings from the pred are very difficult as Anna looks for her happiness button that she could access so easily before. Getting used to her new lungs or rather getting used to her old lungs not being there is a process. Sometimes she misses her old lungs and the comfort from the expected and usual. She thinks it so strange to not hear the constant crackle that came with every breath with her worn out CF lungs. The strangely quiet and gentle breath that she has is very odd for her. Many times she says that she does not know how to use them. She feels that she has to learn to breathe again, or for the first time.

After having to be at the hospital this morning at 7:30AM for a blood draw and pic line dressing change we got home by 9AM and have had the entire rest of the day to recalibrate. I jumped back into my pjs and we snuggled in bed to try to watch a movie. Well our attention span was not long. We realized we needed to learn the meds and our schedule better. Being on the transplant meds is no joke. This is what is going to be the vital thing that will help Anna keep her lungs well. She can not miss doses and must learn the regimen by heart. This will not be too hard because she has been doing this type of thing all of her life. It is just all new and our energy has been spent and we are exhausted.


So, we are on our way. We are determined that this kidney situation will turn around and soon she will have happy kidneys again. We are all very grateful and stunned with how difficult the past weeks were. The intensity of this surgery, being in ICU with everyone else in critical care, the need for dialysis, the ups and downs, the confusion from the meds, the enormity of it all overwhelms each of us in our own ways. At least one of our family holiday traditions was upheld last night after we got home. It was the last night of hanukkah and we never had a chance to participate in the lighting of candles in the hospital because we were so constantly involved and busy. So, we lit a candle together last night and with our ritual each of us spoke about our gratitude for our family and how we stuck together without a hitch supporting each other and making our way through. We are all stronger for it I suppose. Never want to do these things, they are so tough, but we saw how well we worked together and it was all for love, love for our wonderful Anna who WILL surmount the issues with healing in front of her.

It is here that I feel "volume one" of my blog comes to a close. We waited, we received and now we go on to heal and enter a new life, "volume 2". It is a turning point. I want to continue to share about the process as it still helps me to stop and open the computer and write with the key board. I can think about the day and choose elements that I wish to share or emphasize. I am grateful to all of my friends, family and others who have been interested in our story. I mostly hope that you are moved to support the need for more organ donor awareness and have a greater appreciation for those that make up this miracle including the health professionals. I must say and the family agrees, the nurses, docs, rts, everyone at Stanford were fabulous and we trusted them so much. We are very grateful as Doug says, to be alive in this time when we have the knowledge and science to make this possible and for where we live to have this care so available to us.

So, the next volume will be about, "Go Anna Go, Go Anna Go........."

Wednesday, December 8, 2010

We Are Home

We are home. It has been a very long day............ I will write tomorrow. Just wanted to let you know. We are all breathing easier and Anna can not believe how quiet her breath is..........

Tuesday, December 7, 2010

Almost Out Of The Looney Bin


Day 15 post transplant.......

Every day in the hospital is busy. No time to rest but at least Anna will be coming home to the apartment, our family crash pad tomorrow! Today was all about preparing for the event. In the afternoon we spent about an hour in training about what this situation is. It is quite stunning to think that we are here, we are on the other side. Makes you go, hmmmmmmmm, wow.

After the hospital preparations Doug and I headed to the apartment to rearrange furniture and get it ready for Anna. It is now ready, a quite place to heal without alarms, and beeps and prods and people constantly coming into the room with their particular discipline giving Anna and very best of care.........only thing missing was, rest.

But, this will be a better place to live even though Anna and I will be very busy. She will keep her pic line in her arm as she will need blood draws everyday. We will also go for dialysis three times per week until they tell us her kidneys are fully recovered. And, we will go to clinic twice a week. There will be a lot of time spent in the car. I also have the wheelchair I used for my mom and a few times for Anna when she had her old lungs and could not breathe very well. Each week we hope that she will get stronger.

One of Anna's obstacles now is that she hates the mask that she needs to wear to protect her from the bugs and stuff in the air. She is just going to have to make friends with that mask. Maybe we will do a little art therapy on a mask and decorate it pretty.

When we do leave the hospital it will feel like we are on the way to a new life, not one with difficulty but one, with lightness and new time.................... it is what we have been dreaming about and wishing about, it is that miracle I ordered.

Monday, December 6, 2010

Monday Night

Still day 14 post transplant...........

Trying to describe what it is like. While you know and say things are getting better there are all the intricacies that continue to pop up. There is a pic line clotting off so that the necessary blood for testing can not be retrieved until the TPA is used to dissolve the clot. Meanwhile is the annoyance that this intrusion will go on for another hour or two and the worry that if it is clotted off for good then you have to have another procedure to get another line put in. All while you are so vulnerable from it all and then needing a dialysis session taking 3 1/2 hours that becomes 5 hours because that line clotted off too. You wait for the docs to consult and make decisions while you ask questions after your mind has gone crazy with how this is going to be a major interference to you getting better. And before all of that your breathing exercises cause you to do the necessary coughing which brings up your breakfast and leads you to worry about your digestion and the leaks that now appear in your sutures. During this you are trying to process what has happened the past two weeks and all of the craziness when the massage therapist calls and you agree to a short massage that could be better if only you could get up out of the bed into a chair for shoulder massage but the dialysis restricts your movement so you can't. The social worker knocks at the door but you are asleep so can not visit with her about your concerns. Then while everyone is there and a dear friend has come to offer soup and support the pharmacist decides it is time to teach you about your meds you will go home with but you really can't listen to it all because it is just too much and you need to nod off. And the next on service surgeon you have never met comes to see your leaky sutures and introduces himself in the middle of the pharmacist's explanations whose phone then goes off so he excuses himself. As this is going on another friend important to see comes to the door way but there is so much chaos you can not even say hello. Meanwhile Mom and Dad are trying to process it all for you because your mind is not that clear yet and you are overwhelmed and so is everyone else............ and there was more, so much more and it is a blurr and how did two weeks of this crazy shit go by and we are still sane or partially sane and it is not over yet and who knows when it will be and it is all so crazy you can not believe it and you just want to.............................................!!!!!!!!! so, I came home and ate three pieces of toast with butter and raspberry jam, a frozen dinner and wine and chocolate and I am full and this world is nuts...........................

Short Update.........

Day 14 post transplant......

So, still appears that we can leave on Wednesday. Anna's kidneys continue to improve. Dialysis today, Wed and probably as an out patient on Fri. Then we will see. We want no back sliding. She had a rough morning. The mood swings, pain and indigestion just was getting to her. It is all a lot to take, believe me, but we are headed in the right direction.

Sunday, December 5, 2010

Reporting From Home!

Day 13 post transplant.....

Two weeks ago tonight the call came shortly after 9PM. Doug and I were snuggled in watching a movie, sipping some sherry. Our lives changed. Anna talked about this last night with Dr. Dave. She commented on how she was about to do a treatment and Casey about to shower getting ready for the week when the fateful call rang. It happened so fast. Within 9 hours she was in surgery to receive her beautiful and perfect new lungs. Life will never be the same. The grief process to release the old lungs is now underway as Anna is starting to move from survival mode to integration.

Doug and I are happy to be home for a day. The skies are gray and pregnant with rain. This is one of my favorite times looking out a window with tea and xmas catalogues. We will have a fun time at Christmas this year. Now is my chance to do a little internet shopping. That is about all I will be able to do but I do think we will be in my home baking cookies and fixing a grand feast of celebration.

Linda was caring for Anna this morning so I could leave. Sara and Casey are in charge now. And what is so amazingly important,
Anna has Peeeeed twice in about 12 hours so far.......... monumental!!!!!!!!!!

On Friday eve I had a feeling our mojo had shifted and we were back on track. That serendipity of coincidence began to play with me. I went for a walk and in a most unusual way ran into a Dr. whom I worked for when Anna was born and diagnosed with CF. There was David. He heard how Anna was doing through a friend. I told him it was a gift to see him as I was so connected to him and his department at Stanford where I worked while pregnant with Anna. The life that resulted from Anna's birth was now ending and Anna is now beginning a new life. We embraced. It was a marker to me. We are now moving forward, the magic is starting to connect the dots again............ let's hope so. This very difficult stuff is so hard to take with out some of that magic of serendipity that was so much a part of Anna's transplant journey from the beginning.

We are now on track to leave the hospital on Wednesday............

Early Sunday Morning

I spent the night with Anna. Sleep? Well, about 2 or maybe 3. She got some, a little more than me. Doing better and PEEEEEEEEEEEEEEEE, ed! We will hope for more today. She is moving so much better and showered and is in street clothes. It is all sinking in...........and I am pooped.....

Saturday, December 4, 2010

Saturday, and I Love All Of Your Messages


This is a dialysis machine that does the job of our little kidneys.

Day 12 post transplant...........

It is much better being here than in the ICU but Anna thinks that home will even be better. You think? Dr. Weill thinks she will go home around Wednesday. This has encouraged Anna. She so wants to be in a better environment. I do too but I still like the professional care and am not quite ready to take this all on. By the time she is home she should have no more IVs, the pic line will be out and hopefully her skin will not longer be weeping her extra fluids.

Anna had a difficult night last night and Casey stayed with her. He has been so wonderful and protective. She said the nurse was great it just is that the pred causes so much restlessness and agitation. It is a wonder drug that has saved Anna's life before but it does indeed have its drawbacks and that is mostly what she is feeling with these emotional mood swings and bad dreams. Dr. Weill has lowered her dose in the evening so we hope tonight will be more peaceful for her.

The drugs for transplant are hard. Not only that, it is all that you can imagine or not even imagine. To be graphic, your chest is opened, your life giving organs of breath cut out and then the DNA of another is place back in, sewed up and........... the mind must go crazy with all that unbelievable stimuli. Why did the body loose its lungs that have been working so hard to breathe and where in the ........... did these new ones come from? What the......????? Anna is feeling all of this as the body seeks to readjust to everything so different including her dear kidneys shutting down because of the shock to the system. The human body and its ability to heal is so remarkable. We are trusting the miracle of life to find its equilibrium. We also trust these wonderful doctors and nurses who do this everyday and Anna's great friends who have been here already and are thriving.........

Anna keeps me hopping from one need to the other so I have very little time to answer emails but I am reading them. I am grateful that you are so positive about being part of the journey even though it is a roller coaster and hard. Maybe from following some of Anna's story you can appreciate the magnitude of transplant.

It is important to understand that the recipients and the donors are all heroes and have given up the ultimate together to create miracles........... So hard, so full of danger and grief and so incredible. Thank you.........

Another part of our story............. As you know, Sara is working in the CF research lab here at Stanford and goes to the lung transplants to pick up the old lungs for research in the lab. She has been in the OR to do this task a number of times now but now after Anna's transplant she has gotten to know Dr. Steve, the fellow surgeon who has watched over Anna. A few nights ago there were two more lung transplants. Sara needed to retrieve the lungs from the first surgery and ended up hanging out in the OR with Dr. Steve and was invited to view the lung removal. This is a remarkable set of circumstances for Sara and the rest of our family. Imagine this....... others in the OR noticed her name on her badge and said, "We transplanted your sister? And you work with transplant? Amazing." It is another one of those interesting intricacies of all of this. As the mom, it blows my mind that Sara can witness all of this with such composure. She will make an incredible doctor one day.........

Friday, December 3, 2010

A Much Better Place Now


Hi Everyone, Finally Out Of There!

Still Day 11 post transplant............

A sigh of relief. We are now out of ICU in a quiet private room with a wonderful bright window. Doing much better today.


Going to my new room.............


Something normal for once.......


"I look like a fat kid who wants cake!"

Enjoying the escape.......


Time with Dad........