Ana and Isa’s blog

Dear Ana fans,

I am back from Seattle and had a fantastic time at my friend Nancy’s wedding. She found her “Trent” last year and now they are flying to Tahiti today. I am so grateful, yet again, to witness another milestone in a dear friend’s life, and be alive for it. Believe it or not, I often think about how my friend’s life would have gone on, without Ana or me, if we had not received this gift of life. I would surely have missed seeing much happiness around them.

I had a much-needed restful weekend. Andrew and I just napped, ate well, exercised, napped, ate well again and enjoyed the wedding festivities. My body finally feels rested. I loved spending time with Sally, my other dear friend. The last time Sally and I were together we shared some tears, not knowing how much time Ana had. And this weekend, we could celebrate more time and more chances together. I also enjoyed a quick visit with my uncle who saw Ana in really bad shape just 3 weeks ago.

Ana had a great weekend with Trent. Her big feat was walking to the Dollar Store down the street, with her mask and oxygen. She also walked a bit on flat ground at Pulgas Open Space Park in San Carlos. When she grew tired, she sat in the wheelchair and Trent got his workout by pushing her up the steep fire road to the top, where you can overlook the entire Peninsula. She still has to wear her huge HEPA mask but she said it sure felt good to be outside.

Ana continues to be deeply grateful for all the cards and phone messages. She’s still not up to talking too much on the phone or emailing. Her concentration is pretty off. She still just “eats, sleeps, eats, sleeps.” Sounds like my bassett hound! She says she still has less energy than my 92 year old grandmother. I barely disagree. Today after her infusion and doctor’s appointment, Ana walked from the infusion center to my car, across the parking lot and street, alittle less than a quarter mile. She said her legs were shaking and she got to the car completely depleted. But she did it! At her clinic appointment, the docs said her pleural effusion is improving, according to her x-ray. She is not doing pulmonary function tests yet and they wait a month for the anastamosis to heal (where they attach the lungs to the trachea). This is new protocol. Her sats are still not great so she definitely is still 02 dependent. Patience, patience, patience! No other news at the doctor is good news!

We met Heidi and Christine at the infusion center. It is amazing, just amazing, to see all of us CFers cured this way. Wow. We are all high on life.

Ana got teared up while opening a beautiful creative card from Heather and Craig and their son Alan today. She’s still very emotional from the prednisone. It hit her how lucky we are in every respect- family, surrounded by love, second transplant, etc. When she was reading this very touching elaborate card she just kept saying “why? why? why do I deserve all this?” because we are so blessed. Reminds me of one of Ana’s favorite songs that says, “You’re the lucky one, loved by many, hated by none.” I told her I woke up thinking of my grandparents and great-grandparents and how much they suffered and died young in the wars. I really thought of karma, and how they must’ve done some serious suffering for their ancestors to reap such rewards. I never believed in karma, really, but now there is something going on to make our lives unfold so wonderfully. Yes, much can happen ahead, but today all is good and that’s all that matters.

Ana looks beautiful and has color in her face. Her swelling is down considerably and now her wasted muscles and bones are showing. She must be patient before trying to rebuild!

Anyway, thank you for your continued interest in the blog. Ana or I will update it every few days from now on. I am off to New Mexico on Wednesday and hope you all are enjoying your summers and having a blessed time. Love always, Isa

Dear Wonderful Friends,

Just wanted to share the news that I am home from the hospital. With heartfelt gratitude, I want to thank you all for so many well wishes, cards, emails, prayers, love, support, encouragement and support for myself and my family during these very challenging two weeks. I reviewed a few of the postings done by Isa. I agree she did a great job on the blog (even though everyone now knows my GI issues ; ) ) and is the best sister one could ever wish for. I can’t believe she did the 50 mile bike for breath the day after my surgery!!

The posts were emotionally challenging to read, reliving the pain for me. Fortunately, I have absolutely no recollection of the first 36 hours post-surgery including whatever I was trying to communicate via sign language. I recalled the words of our dearest late Dr. Theodure who said, “Transplantation isn’t for wimps” and believe him so. However it is in pain and delirium that we get closer to our existence, to our God, to our being, and the Why of it all. Despite the pain, it was my only option, for it is only now that it is hitting me how very sick I was and how quickly my life was coming to an end if re-transplant wasn’t an option. Praise God for this second gift of life.

Words can’t describe the love I have felt and the will to live that knowing all of you has instilled in me during those most painful moments. Although i’m not a super religious person, I also gained strength from imagining Jesus on the Cross, and being humbled by His pain, and wondering how He got through His pain without a morphine drip (I hope that doesn’t offend anyone). I was surrounded by the angels of Charlie, Hayley, my first donor James, Tony, Dr. Theodure, Chrissie and so many more who watched over me and helped things go smoothly.

I am forever grateful for the unconditional gift from my second donor family. In my delirium, I had a dream/hallucination of seeing the family checking out from a doctor’s office, with his belongings (i guess “his” since I don’t know the gender). There was his wife and parents , holding a grey and white sweatshirt among other belongings, weeping and telling the receptionist at the checkout desk what a great man he was and i was behind them, calling their name, thanking them , telling them i was the lung recipient. Outside there was a golf course and it was raining. Someone was behind me pushing my oxygen telling me to wear it since i wasn’t because i was dressed to go to work. Strange; spiritual image or morphine weirdness?

Please keep them in your prayers, whomever and wherever they may be. Many blessings and thanks to the California Transplant Donor Network and the Stanford Blood Bank for making my transplant a success. May God Bless you for the work you do. (I had 30 units / pints of blood).
Many people have asked “what can I do to help?” Well, I am surrounded by love and practical support so I can’t think of any specific help so please just consider spreading the word about organ donation AND consider Blood donation as well because that saves the lives of transplant recipients too. As my doc said, I “emptied the bank on July 14.”

I’d like to also publicly acknowledge my mother, who has been my primary transplant caregiver for her third transplant journey. Thank you Mom for all your dedication, love, cleaning/cooking, assistance in the hospital and for putting up w/ watching me in misery for the last few weeks. You have proven once again that the primary reason I chose never to be a parent is that I could never live up to the example that you set about what it means to be an unconditionally dedicated and giving mother. Doumou arigato… I love you.

It’s great to be home; I especially enjoyed being in my own bed; I slept more last night than I have in two weeks although i still struggle with pain and shortness of breath while laying flat and walking around the house. Other great pleasures included mom’s home cooking and a real shower for the first time in two weeks!!! Last night I walked down my driveway under the stars and full moon and thanked God for being alive. I weep when I listen to Celine Dion’s song, ” I’m Alive.” I can’t believe how much life can change in two weeks and the spiritual/emotional aspects of this journey are finally starting to hit me (either that or prednisone is kicking in). My goals for the next week are to not catch infections and to wean myself off oxygen. My capacity is still around 1200 ml (1 liter) so weaning off oxygen and expanding my lungs will be the biggest challenge, especially since I learned they were out of the body the max time due to complications of surgery.

My goal for Sept is to walk the Stanford DISH will the possy I know who loves this challenge with me. New comers are welcome.

While in the hospital, I received a special gift delivered from the Stanford Hosp. Gift Shop- a balloon, Burt’s Bee’s toiletries kit and gorgeous gourmet chocolates (which I really enjoyed when i had an appetite). However, there was no indication on the gift who it was from. For those reading the blog, if you are the generous person who shared this gift, I thank you- please reveal yourself so i can give a proper thank you.

I have about 300 emails so it will be unlikely that i will respond to each one; forgive me if i’m slow to do so or unable. BUt please know that i received them and will read them in time. My stamina is still challenged; I have the energy, balance and muscle mass of my 92 year old grandma and feel like I’ve been hit by a truck. SO , although I welcome phone calls, and short visits at home, I’d like to minimize for the first weeks as i still nap a lot. Please call before and check in if you’d like to visit ; I may turn you down if i’m not up to it and hope you understand. Please know that I will be at Stanford clinic and infusion center several times a week. I will be closely monitored for rejection and infection since I am a re-transplant and the risks are higher.

Enough about me- this has become longer than expected; I hope this greeting finds you all well and enjoying this glorious July weather and summer time joys. Breathe deeply, enjoy the outdoors, the sun, camping trips, BBQ’s and all things good. My love , respect and admiration for you all. It is a privilege to call you friends and be among such quality human beings as yourselves. I will strive to be more like you when my friends face their medical crises.

I love you all. May God Bless you all.

Ana Stenzel

Dear Friends of Ana,

I just returned from Andrew’s annual Campaign 101 for his Peninsula Young Democrat group. It has been my one ‘extra’ event in two weeks. I have great news to report, and that is:

ANA IS GOING HOME TOMORROW!

We are so excited. She is still very weak but says she absolutely can’t stand to spend one more night in that terrible bed. She still has a sluggish gut but will ‘deal with it myself at home’. Her spirits and energy are good and she walked a little tonight with Ed without 02. She said it was very hard but she’s trying to wean off the 02.

Ana looks great and only her feet are super-swollen now. She was happy to wear new pajamas generously given by Beth- Thanks Beth! She washed her hair with the help of my fantastic Mama:

Ana thought she might have a hernia (use your imagination and figure out why) and after today’s ultrasound it turns out there is only a hematoma, or bleeding, from her groin area. They will watch and wait. They believe the bleeding is from the scar where the bypass machine was attached to her femoral artery. Her GI distress caused too much pressure.

My second great joy of the day, after finding out that Ana could go home tomorrow, was that when I walked into the main entrance to the hospital, after passing the gorgeous garden, where I was greeted by a familiar set of prints! The six prints were created by my dear friend Judy in 2003. She finished her Master’s in Fine Arts and the prints are part of her thesis, expressing her grief after the death of her only daughter, my Stanford friend Hayley, to two failed lung transplants due to CF. Hayley died July 28, 1998. The prints were shown at CFRI’s Call for Art gallery in 2004 and have been in my office since. After many attempts, Stanford and the Bing art program accepted to display them. When I saw the prints, my heart leapt for joy, because Hayley still lives! Nine years after we said goodbye to her physical presence, she has returned. She is home now, at Stanford, where she was a student, patient, researcher, and had her transplant and funeral there.

A huge congratulations to Judy and deep gratitude for sharing your artistic and personal journey with us and all patients at Stanford Hospital to enjoy forever! YOU DID IT!

Yesterday I received a beautiful email from Laura, the mom of a boy with CF and she said, “I  must thank you, Ana, and all with CF whose suffering is paving the  way to continue to improve transplant medicine.  Perhaps when my son needs a transplant, the road will not be quite so hard. I owe you a debt of gratitude.” No, Laura, Ana and I are just steps in the road. There is a long line before us. Hayley paved the way for us, as did Kim, Terry, Tony, Keegan, and so many of our friends who came before and are no longer here with us; whose deaths lead the doctors to learn just a little bit more to save future patients. Ana and I are deeply indebted to those other people with CF who have allowed lung transplantation to progress to be what it is today.

I will be away for a wedding in Seattle (my next big ‘extra’ event and Trent will be Ana’s primary caregiver- thanks, Trent! I hope the next posts will be by Ana herself! We are forever grateful for all your love, and humbly ask for your prayers for continued healing. Two weeks ago, Ana was wheeled into surgery, and so much has happened since then, but so much more must happen. Ana must learn to breathe without 02, to walk, to live again. It will be a hard and slow process, and the biggest virtue here is patience. I also recognize the hard work and big risks start when she goes home, and complications can arise anytime. Please pray that she doesn’t hit a major road bump.

Love to you all, and have a great weekend, Hugs, Isa

Dear Ana fans,

I am so blown away by the unbelievable amount of support I’ve received. I thank you all for all the offers to help out with caregiving, especially by my fellow transplant friends! You are so kind! At this point, however, we are covered, but your name is added to a back-up list! Thank you! Ana is surrounded by living angels. Thank you for putting compassion, benevolence and altruism in front of your busy daily schedules. We owe you one, big time.

Ana had a good day. Though she’s still on 2-3 liters of 02, the lungs are fine but she continues to have “plumbing” problems. Stay tuned to chapter 23 of “The Power of Two” for true graphic details of what she is going through now.  Her doctor says she is ready to go home except for the GI problems.

The good news is her left arm swelling has decreased considerably.  Her thighs and rear are not as swollen either. Her feet look like I can take a needle to them and pop them, however. She looks great overall. She started 40 mg of prednisone two days ago and now she’s flushed red and ‘wired’. She also seems more outspoken and vulgar compared to before. She’s also more emotional than usual, due to the prednisone. She was telling the nurse about our wonderful trip to the Great Smoky Mountains with Dad last June, hiking the Appalachian Trail, and she teared up about how fantastic it was- like Heaven on earth. She also got emotional talking about our CF friend Charlie, who died waiting for lungs. She was so moved by his mom’s quote,”It was like getting hit by a car on the way to the hospital after getting the call for lungs.” She said, “Man, talk about survivor’s guilt….. F@$#.” 

I’m attaching a photo of Ana eating the best darn jello she’s ever eaten.

She was NPO since last night because they were going to do an endoscopy to rule out an ulcer, but they cancelled that today. She’s drinking a gallon of the good Drano juice today and not eating much. Therefore, she is pretty weak. She went on the bike for 6 minutes but was distracted by visits and nature’s call. Last night she went by herself to the stairwell down the hall and walked up and down 4 steps several times. Here’s a photo of Ana training for next year’s Bike for Breath!

I enjoyed seeing her after my doctor’s appointment. Ana still naps frequently. As I watched her sleep this time, she has an unleashed energy from within. Her breaths are hard in and out, and her whole body jerks and moves in spurts. Perhaps it is really deep REM sleep. I hope it is just her life force spazzing out inside a broken body, ready to jump forth into the world. The good thing is after even a short 20 minute nap, she says she feel so refreshed.

I was feeling really tired today so I went home to nap. I am sorry I missed my friend Tom’s 1 year celebration… I have learned from Ana to listen to the body, even if the mind wants to do many things.

My other friend Anne had a transplant yesterday for CF. This is the third CF lung transplant since Ana’s two weeks ago! Isn’t it amazing, that so many people with CF aren’t dying anymore from CF???? We are soooooo lucky to have this disease, where we can take out the bad part and put in the new. It never ceases to amaze me with wonder and miraculousness. Please keep Anne, as well as Heidi and Christina in your prayers as well as Ana.

Thanks for your ongoing interest in Ana’s progress. She knows you are thinking of her, and your prayers are what is sustaining her through this all. Thank you and God bless you!

Now let me end this post with our favorite lyrics:

“So we’re okay, we’re fine

Baby I’m here to stop your crying

Chase all the ghosts from your head

I’m stronger than the monster beneath your bed

Smarter than the tricks played on your heart

Look at them together then we’ll take them apart

Adding up the total of a love that’s true

Multiply life by the power of two”

-Isa

Dear friends,

Excuse this late blog entry. I just got back from bagpipe practice, as I’m trying to resume some of my normal life. I went to see Ana this afternoon with Rob, and she was in good spirits, had just awoken from a 45 minute nap and was having the physical therapist deliver a stationary bicycle into her room. She proceeded to ride for 15 minutes with good 02 saturations. This is easier than leaving the room and wearing the suffocating HEPA filter mask.

Ana’s major complaint today is her GI plumbing issues which is being addressed aggressively.  She has absolutely no appetite. She also did not sleep well even with the new bed. She also did indeed have a deep vein thrombosis (DVT) blood clot in her left shoulder which is causing the puffiness on her left arm. The docs are not treating it but just watching and waiting if it resolves on its own. Ana’s mood is good and she has lots of humor and vulgarities to deal with her GI problems. Fortunately, her lungs are cooperating although she’s still using 2-3 02, but if she wasn’t so distended I think her 02 needs would be less.

I forgot to mention that the day of the lung viewing is Aug. 27. This is a special outing the social worker organizes with the pathologist to view the removed lungs. It will be a beautiful blessing of gratitude to James’ lungs, to give closure to that part of her life, and also to see the damage caused by rejection. I saw my old CF lungs, which Ana never got to do before, so this will be interesting. We will take pictures!

I will write more tomorrow. I’m exhausted. Good night and I hope you are all well. I continued to be awed by your love and support. Thank you for the beautiful cards and emails. Hugs, Isa

Dear Camp Ana,

Thank you all for your kind emails and encouraging words about the utility of this blog. I am sorry I cannot answer all of your emails, but Ana and I are touched by your support and love!

So, today was another good day and I am glad. The big events of the day included an ultrasound of her left arm which has been much more puffy than her right; so they are ruling out a blood clot. So far no news.  Also Ana received a blood transfusion today because her hematocrit was 22 (normal 35-45). God bless blood donors! I can’t imagine a person taking time out of their lives just to give blood to help others! They are the angels that often get overlooked by organ donors. But they are the ones who make transplant surgery possible. After all, Ana received 28 units in surgery and I received 40! Some liver recipients received up to 200 units!

 Ana was a bit more energetic, although she took several naps; when she was awake, she was quite alert. She is still quite uncomfortable but says she is not in ‘pain’ anymore. She has a lot of gastrointestinal distress that is typical CF stuff plus a concern that her stomach isn’t emptying due to nerve damage during the surgery (gastroperesis (sp?)). Her swelling is still a challenge but she’s getting 40mg of lasix now. Thank God for compression socks!See her sexy feet:

We even took a ride down to the Atrium garden and took a walk outside! She still uses 4 liters of 02 behind her suffocating mask. Mama was with her for several hours and enjoyed the gardens as well. I am so happy about these milestones.

Ana still feels short of breath with movement. Some of that may be her stomach problems and her low blood count, since her pleural effusion seemed minimal, per the nurse today. Just for kicks, Andrew lowered her 02 while Ana lie in bed; she didn’t notice it was off and her saturation was around 100 for 15 minutes. Praise God! When she moves, it does go down, though.  She is still inhaling around 1000cc on her incentive spirometer. She can take deep breaths with less pain now.  Today for fun I took out my dusty incentive spirometer just to see where I am. I inhaled a 3500 cc volume! (Okay, I cheated and swam today). I hope and pray Ana can reach that level again some day.

 The greatest joy today was having a kind nurse named Deb who allowed us to exchange Ana’s horrific bed with an available older model that was sitting in the hallway. It has a firmer mattress and those beds remind me of chest percussion in my CF days. One can harden the mattress and keep it that way, unlike the newer hammock-style bed. I also created a roll for Ana to put under her back to sleep with more comfort. So, I hope tonight she has a better night’s rest.

I am going out of town several days in the next few weeks and Ana may need some ‘transplant sitting’. If you are local and free, please email me personally and let me know if you are interested in helping out. My parents are going to Australia, believe it or not. Trent and Ryuta are helping on weekends and nights. I already have the caring daytime support of a few dear friends but still need some coverage on certain days.

Thank you and we truly appreciate your prayers and support. I sure hope Ana can go home soon. Love to you all, Isa

Dear friends,

Ana sends her greetings with a big smile!

Thank you for your prayers- God listened! Ana slept better last night and was feeling better today. Friday night she hardly slept at all and attributed her miserable day to that. Also so she is extremely sick and tired of the horribly uncomfortable mattress that sags and is designed to prevent skin breakdown, but instead it feels like you are sleeping in a hammock. She can’t spend more than 1 hour in bed without terrible back pain. She would try to sleep, then get up and walk around the room, then sit in a chair, then finally return to the bed and start the process all over. She desperately wants to go home just to sleep in her own bed. It helps to massage her back which was caught on film thanks to Andrew.

Ana received lasix twice a day and also is wearing the fashionable compression socks, so her swelling is a bit more controlled. We used her mechanical percussor on her swollen feet and arm to see if it would help circulate blood and reduce swelling. The CT scan showed she has pleural effusion and atelectasis, but rather than trying another chest tube, they are waiting to see if it resolves on its own. This is preventing her from expanding her lungs and breathing easily without oxygen. She started albuterol aerosols which gives her some relief. Fortunately, the medical team didn’t think she needed a broncoscopy today. Her goals are to get off oxygen and regain her mobility. “I’ve been humbled… that’s all I want.” she said. There is no talk of climbing Lassen, swimming or competing in the Transplant Games. She can’t even talk on the phone without getting pretty breathless, and apologizes she can’t call people back. “I just can’t deal,” is her response, but she truly appreciates all your love and support and welcomes answering machine messages.

Ana looks so great, especially since her neck catheter was removed as was the last chest tube. Her skin has suffered a lot of thinning due to the meds and she has some awesome bruising and skin wounds. They have accessed her mediport so she looks like a regular CFer again. Hooray! She also went on THREE walks today, one pictured below with Trent.

It occured to me that many people with CF and their parents are reading this blog and all this medical information may be incredibly anxiety-provoking. I imagine some of you are staying awake at night wondering, when is my/my child’s turn? Will I/ my child be strong enough to deal with this? I know even I feel anxious and tell Andrew, “I really, really, really don’t want a second transplant…” (of course if it’s the only thing to survive I’ll go for it, but I’m more determined than ever to do everything to avoid needing one!) Well, I am tempted to tell you this won’t happen to you, there’ll be a cure before you or your kids needs a transplant, blah, blah, blah, but you know there is no way for me to make such promises. I have to almost laugh at myself because, just two days before Ana was called for transplant, I was talking with another CF woman who was thinking about transplant, and I told her that the pain was really no big deal and it was very controlled. Now in this blog, pain is extremely prevalent for Ana and has been for 7 days (today wasn’t so bad). Did I lie? No, I believe the first time around pain is tolerable. So the solace is that it is worse the second time around. As Ana said today, “I absolutely cannot believe, and cannot imagine doing this within a year of having the first transplant,” as was the case for Stuart, Pat, Heather and so many of Ana’s heros and role models. You guys have supernatural strength. But I do want to reassure some of you that my philosophy is everyone has a story, and this is Ana’s story. Mine is different and will be different. Yours or your child’s will be different. Much time and growth may happen between you reading Ana’s story and when or if you find yourself in these shoes, and I am confident you will cultivate whatever resources you need to deal with what comes. That is my only promise to you, that you and your child will find a way to deal.

Anyway, I thank you all for your ongoing interest in this drawn out blog. I love you all and hope God blesses you all with the kindness you are sending our way. Love, Isa

Dear Ana’s Angels:

Just spoke to Ana and she had a very hard day. She said it was her worst yet. She is much more short of breath and had a CT tonight. They think it might be a collapsed lung but are not sure yet. Luckily she says her kidneys are fine. She is back on morphine and barely up to a short phone call. I am very worried but know there are ups and downs in this process. I pray this is a manageable ‘road bump’. She will have a broncoscopy again tomorrow to check things out. I ask you all to pray extra hard tonight, and we are truly grateful for all your support.

Love, Isa

Dear friends,

I’m taking a break from the hospital today as I have a million things to do for CFRI retreat, conference and travels to Seattle and New Mexico in the next 2 weeks. I heard Ana had a rough morning but went on a walk with Mama. Her phone’s been busy, meaning she’s up to talking.

Okay, Andrew just called after visiting Ana for 10 minutes. It’s another hard day. Although she walked, she feels like hell and is having a hard time breathing, on 3 liters of 02. She’s very uncomfortable. Her swelling is severe and they’ve ordered a CT scan to make sure she doesn’t have fluid in the chest. That was 5 hours ago and Andrew was frustrated nothing has happened yet, esp. since Ana can’t eat anything until after the CT. She is sitting up and the good news is her last chest tube was removed. I hope her kidneys are okay. She feels miserable and even asked Trent to take a break from visiting. Mama is with her now.

I want to thank Naomi for taking video photos of Ana as she was getting ready to enter surgery. I’ve posted them on the 7-12-07 ”Ana’s Transplant Status” update. Please check them out. They are very touching.

I just wanted to thank Heidi, Ana’s coworker, for the following poem:

Breath

In the stillness of thy mind

Let a righteous wind blow

To give unto thee

The second breath of life

For the trials of the womb

Ushered forth the first breath

And so too…

Shall the trials of life

Escort the coming of a second birth.

Thy past transgressions then shall be forgiven thee

Like a mother

Who forgives the child

For the pangs of labor,

For it was the first breath of life

That gave unto thee mortality

And, caused thee to see beyond the womb,

Yet, shall the second breath

Cause thee to see

Beyond temporal existence

And notice thy place in eternity.

‘Tis then that ye shall truly breath again

And lay thine eyes upon my face,

To remember oh so well-

Why ye chose to breathe at all.

-Leaven

Breathe, Ana, breathe. - Isa 

Dear Ana supporters:

Today I bring more good news. God is good!  Ana was in less pain, and got one chest tube removed- one more to go (and that’s barely draining)! She is more awake and alert, and only used percoset twice today, and tylenol other times. Good riddance morphine! The big news is she’s walking!! With the physical therapist and aide, she walked out her room, down the hall and back, and down another hall and back- about 150 feet! She was working at a 5-6 out of 10 in exertion, not bad. Ana was using 4 liters of 02 walking with a pink HEPA mask which is very suffocating. She wasn’t even worn out after that long walk and didn’t end it with an expletive like she did her walk across the room yesterday. At rest she is around 1-2 liters, but with movement and a CPT treatment she goes to 2-3. She still desats somewhat with movement, as low as 86. The doc said she is still expanding her lungs. I’m trying not to worry about that but it isn’t quite what I would want. She still doesn’t have much of an appetite and has a lot of acid. Her swelling is still bad but slightly better than yesterday. She is now only getting antibiotics several times a day and is otherwise unhooked from her IV! Makes walking a lot easier.

Here is Ana on her first walk:

I am grateful for Naomi’s visit, and the visits from Mama, Susan, Collette, Ryuta and Trent again.

All day I was planning on writing about Sekou Sundiata, an African American kidney recipient and poet/artist. Sekou performed a one man show called “Blessing the Boats” about his kidney transplant. One of my most inspirational moments after my transplant was hearing him speak at a CTDN event.  He spoke so candidly about how truly amazing it was that you could take an organ out of one person and put it into another… and it WORKS.  Such a simple reminder of this miracle really hit me when I heard him. Sekou also talked about transplant as being a form of redemption. I never really understood the meaning of redemption. I know you redeem a coupon. Christ redeemed our sins- but what does that really mean, anyway? But when Sekou spoke, it really made sense.  It’s all about compensation- for the suffering from illness.  Sekou’s redemption means being paid back with relief from pain and weakness, with health, strength and another chance at life- but only after you have truly paid your dues with ample suffering.  Ana’s first 6 1/2 years were so perfect; so carefree; and only the last 9 months were harder. We’ve often talked about what did she do to deserve a second transplant- when some didn’t even get their first? Was she being too greedy? Now, after the intense challenges of the last week, and the struggle she had in the three months prior to her transplant, I believe she has fulfilled Sekou’s message. I hope and pray the upcoming recovery from her second transplant is her redemption.

A strange afternote: One the way home from the hospital on NPR I heard Sekou died this past Wednesday. May he rest in peace. I am grateful I got to see him, and that he made his way to Heaven years later than expected because of organ donation.  This is the second time I’ve had thoughts in my head about a particular person, only to learn they had died that day. I had a powerful dream 8 months after my transplant that I sat at a table with Christopher Reeve. I woke up and went outside to fetch the newspaper, only to read he had died the night before.  Is this what happens when you carry the spirit of the dead inside of you? Or does this happen only to those who have nearly crossed over? Is this now my 6th sense, or does this happen to others?

Anyway, I digress. I am grateful to the mystery person who send a gift up from the gift shop for Ana without signing their name. Whoever you are, THANK YOU! I remember the truffles I ate after my transplant were the best tasting chocolates I’d ever tasted. I hope Ana experiences the same. Also I thank Stacey and Ann for their cute stuffed animal that sings, “Don’t worry, be happy.” Will do!

Ana still has limited energy so she’d like to hold off on visitors, if you don’t mind. She is relieved to have the weekend to relax and practice her walking! She’s got to walk off that fluid!

I wish you all a wonderful weekend.  I hope you are all healthy and living intentionally. Thank you for all your positive feedback about the blog. I am glad it is keeping you informed. Thank you for your prayers and please keep them coming as Ana is far from out of the woods. Love to you all, Isa