Ana and Isa’s blog

Dear Friends,

Thank you for your continued love and support. I appreciate everyone’s continued interest and faithful reading of our blog.  

Today was a moving day.  I had the opportunity to say goodbye to the lungs that sustained me for seven years. I visited Stanford’s Pathology Lab, arranged by our clinic social worker, to pay tribute to the lungs of James Dorn, my first donor. Please join me in honoring him. The lungs were ill- shrunken and full of fungal infections (don’t worry I was wearing a mask and they have been soaking in formalin for six weeks so it was safe), although the chronic rejection damage done to them by my own immune system was more on a microscopic level and not visible on the outside surface of the lungs. It’s hard to believe what happened in only nine months- from running seven miles in October ’06 to being wheelchair bound by May ‘07. Now that I’m no longer in acute “survival mode” my psyche is finally processing this devastation that my own body inflicted on these beloved lungs. I still apologize to James daily and am behooved by immune system warfare.  The why and how of biology is often beyond comprehension…

Seeing the lungs of James Dorn was bittersweet. I am so grateful for the life they gave me for seven years and truly saddened to let them go. They travelled with me to five foreign countries and seventeen states, ran approximately 700 miles and swam approximately 125 miles with me for seven years.  They climbed hundreds of feet and inhaled the clear air of many mountain tops with me. It was not seeing them physically that was important to me. After all, in the end the physical of all of us ends and the spirit is what remains.  It was important to me to put my hands on James’ lungs and say a prayer of thanks to him who breathed for an additional seven years and two weeks because his family said “yes” to organ donation. I will not dwell on the physical absence of him inside me, for his spirit remains a part of me and I will forever be grateful for what he has allowed me to do. For that I said thanks  and paid tribute today.

I was encouraged to post photos, but I am sensitive to my dear donor family who may be checking this blog, so for those of you who would like to also view my former lungs (strong stomachs recommended) please email me and I’d be open to share photos. anana1872@yahoo.com

On other notes, my doctor’s visit today went well. My recovery is on track, although my lung capacity is still at 51%. I’m walking 2 miles almost everyday which has normalized my blood sugars finally. Today, I received another infusion of Cytogam, an anti-Cytomegalovirus (CMV) chemotherapy agent , which is standard for transplant recipients since we have a decreased immune system and CMV which is ubiquitous and can cause devastating infections.  I am so grateful for the excellent care I’m receiving and for the lack of complications so far (knock on wood). Soon I will start a physical therapy rehab program at Sequoia hospital in hopes of getting stronger. 

My German family just had a family reunion in Poland , formerly German, to retrace my father’s family’s flight from Breslau to Berlin during World War II. For seven months they walked through Czechoslovakia to flee invading Russians. Also, I’ve watched documentaries like “Born into Brothels” and “Tibet: Cry of the Snow Leopard” and realize that if  I was not born into this time or place of transplantation, I would be soooooooo dead by now. So I am humbled…

 Thank you for your continued prayers and support.   Wishing you all wellness, strength and enjoyment of these final days of summer.

Love you all,

Ana Stenzel

Just wanted to share- Ana walked TWO miles today! She says it’s so hard, that her legs were shaking, but she did it! I am so proud of her and hope she doesn’t over do it. I ran 5 miles and know her walk was the equivalent to my run. Thanks to Rob for motivating both of us… and being my fellow masochist for signing up for the San Jose Rock n Roll Half Marathon on October 14…

I hope you are all well and thank you so much for caring to read this blog. Your prayers and positive energy is sustaining Ana! Love and hugs, Isa

Dear Friends and Ana supporters:
It has been nearly 3 weeks since I’ve written a post. I appreciate your continued interest in Ana’s recovery, even 5 1/2 weeks after her transplant. I want to thank our closest friends, Robin, Ann, Josh, Kerry, Ryuta and Kathleen, for watching Ana in my and my mother’s absence! We truly are grateful for your sacrificing your time and supporting Ana on your assigned day as her chauffeur, cook, and counselor. It has taken a huge load off my life and my mother’s. First and foremost I think we are all grateful for Trent’s support day and night when Ana was home right after her transplant. He continues to stand by her and makes her so happy!

I feel really grateful that I’ve been allowed to pursue my own life plans with the peace of mind that Ana was well-cared for. I have experienced a life-altering reunion in New Mexico, attended the fabulous CF retreat and conference and just returned from an exhilirating hike of Mt Lassen with my two transplanted friends Lara and Tom. Some might argue I’ve been very selfish to leave Ana in her fragile state. For her first transplant, I was with her constantly and we had little non-family support during her recovery. I feel so grateful that we are now surrounded by a huge network of friends that are so giving. It hit me today that for the first time in my life I have a healthy detachment from Ana’s experience, and by going off and doing my own thing it is actually pretty healthy for me. Ana has given her blessing for me to leave, and enjoy life on her behalf. After 35 years, we can actually finally lead separate lives, without guilt, enmeshment or separation anxiety. It’s about time we’ve grown up!

I enjoyed my favorite activity- hiking- in Santa Fe as well as Lassen. For both hikes, I was around 10,300-10,500 feet and was just fine. I hope and pray that Ana can hike with me again someday. It is just mind-boggling that the lungs I breathe with at these altitudes are not my own, and that they work so well. I want this to last forever! Lara and Tom, both one year-post lung transplant, kicked some ass by hiking to Lassen peak as well. I am so proud of them! We bonded as we did our nebulizers in the car at night, while Lara did her IV out the car window. I’m posting a photo of us three on the peak.

I am happy to report that Ana is doing quite well. She went to the doctor and all is well; her lung function is around 60%, the same as last week. She was a bit discouraged that the numbers were the same; she was anxious that she wasn’t exercising enough to expand her lungs. Today she came over to my house and we worked on our final copyedits of our book, which is due tomorrow. After we finished, we went on a one hour walk/hike through my neighborhood park, Stulsaft Park. Ana met with her second lover, my bassett dog Rupie, for the first time in 6 weeks and there was a lot of yapping, crying and squeaking with this reunion. On our hike Ana was able to walk uphill slowly but consistently, and breathed heavily but could do it! Here she is:

 I was so amazed at her determination. It reminded my of the note Sylvie gave Ana after her first bout of rejection to inspire hope: Lassen or Bust! I think Ana’s training to join us for Lassen already! She is still easily fatigued but can manage these long walks without collapsing afterwards. I am a bit worried that she is taking more risks this time around, by visiting CF retreat, shopping without her HEPA mask or being near my dog just 5 weeks post-transplant. I am nagging often, but we must have faith that her body is more immune to germs than what we fear.

I continue to be grateful to God for Ana’s miraculous 2nd transplant. I hope each day unfolds as the last 5 1/2 weeks have as well.
Thank you all for your love and care. I hope you are enjoying your August and are surrounded with joy and love. Love always, Isa

Dear Friends,

I hope this finds you well and enjoying the last bit of summer.  It has been a while since I’ve posted and people are curious. I apologize about my long silence. This has been two weeks filled with love and support from caregivers coming to supervise me as my mother is in Australia. Thank you , thank you to Trent, Robin, Ann, Kathleen, Josh and Kerry for your time, love, supervision and help while I rehab at home. It’s been quiet. I can tell you that no news is good news, and my doctors say I am recovering exactly as  I should be. Of course, I want things to speed up and to feel better immediately, but I must be patient. My biggest challenges are chest pain, stomach pain and muscle weakness. My lung capacity (FEV1) is still at 50%, as I have fluid in my chest walll which is preventing the immediate expansion. Time will tell. But my small airways (FEF25-75%) which are a measure of gas exchange are at 95% capacity. Prior to transplant they were at 6% so  you can imagine how much better I’m breathing! : ) I’ve attached some photos, including the monumental occasion of saying good bye to my oxygen and wheelchair as the home healthcare company picked it up. I’ve also tried to regain strength by walking at the track and doing some stairs. I struggle with exercise, partly because I am required to wear a mask and it is harder to breathe with one on, and because my muscles are very weak from deconditioning and the side effects of prednisone. I’m at 35 mgs of prednisone a day now, so the tapering is promising.

Next week mom will return as my primary caregiver. I feel very fortunate that my recovery is as smooth as it is (knock on wood) and that I’ve been fairly functional as far as tasks of daily living. I’ve started to use a stationary bike in the living room and may consider joining Sequioa Hospital’s pulmonary rehab program. I’m working on balancing the fear of germs with the need to just get out and enjoy life. The first three months are the most risky as far as immunosuppression so I will be more cautious than usual. Thank God for anti-bacterial products!

Again, I continue to be showered by love and support, cards and gifts, calls and emails. I apologize I haven’t been good about getting back to people. You are in my thoughts and I appreciate all your messages. Thank you for your friendship and for fueling my will to live.

I love you all. May health and strength be with you too.

ANA STENZEL

Dear Friends,

Thank you again for your continued support and love . I apologize I haven’t been able to return calls or emails very well. This has been a week of clinic visits, eating, sleeping and occasional walks, plus time with Trent, who has been a fantastic caregiver for my first week. It is wonderful to have our firsts- first walk without oxygen, first big meal without oxygen, first errands ect. Life is only getting better. I am still struggling with stamina and muscle weakness but am getting stronger each day. Embarrassingly, there is much effort even to rise from the toilet due to muscle wasting of my thighs from the high dose steroids (prednisone) and from being bedridden for so long. Each day will improve I hope, although I am on a near- maximum dose of prednisone. My face is starting to puff out and my cheeks look like mochi, or Japanese rice cakes. But it’s a small price to pay to be able to breathe. Although my capacity still hovers low (1250 ml), I am absorbing more oxygen and I took my first nap today without oxygen.

Ana’s 12 step Oxygen Addiction Withdrawal Program is as follows:

1. I shall turn down the oxygen a 1/2 liter each 2-3 days

2. I shall use no more than 1.5 liters at any time

3. I shall not use oxygen unless walking with the big Hepa filter (aka Darth vader) mask or in the shower or while asleep

4. I shall place the nose prongs on my lips so that I only use oxygen when I mouth breathe

5. I shall have family secretly turn down the oxygen when I am not looking

6. I shall not use oxygen when doing email or other highly distracting activity

7. I shall admit when I have faltered

8. I shall return the oxygen to the rental company by August 20

9. I shall do my breathing exercises several times a day to expand my lungs so my oxygen requirements will be less

10. I shall check my oxygen saturation frequently and not freak out just because it is not 100%. Dr. Dhillon said any saturation above 90% is “normal.” (I am currently saturating at 92-95% without oxygen)

11. I shall bring oxygen on errands and leave in car only as a security blanket

12. I shall be off oxygen by August 10 totally

 So there it is. Any other suggestions are welcome.

I have posted some photos for your amusement. One is me at the beach during my first short trail walk from the parking lot to the edge of a cliff where Trent and I picnicked on garlic-artichoke bread from Pescadero. Due to being on high dose prednisone, I have a huge appetite and major cravings. We drove 63 miles to get that bread (sorry, global warming) and picnic at the beach. The fresh sea air felt great. The other photos are me in clinic with fellow transplant friends- Patty who had a heart-lung transplant 7 years ago and Lara who had a double lung transplant a year ago. The last photo is me getting some stitches out. This is the first time I’ve come public with my meconium ileus scar from infancy so please excuse that mess on my belly.
Progress is going well and I’ve had no major complications, per the doctor’s visit. So today was a good day and I am pleased. Praise God. Thank you again for all your love and prayers. I believe in the power of prayer, the strength of friendship and the will to live fueled by your presence in my life.
I hope this finds you well and enjoying this August sunshine.
Love to you all, ANA Stenzel

Dear Ana friends,

I am happy to report that Ana walked around her block today! She walked very slowly and with a yellow mask with some oxygen. She then felt so exhausted, she felt the same way she did after backpacking for 10 miles back when she was healthy. She had to nap right away. Then, after a nap, good lunch, and another nap, she then went to the Menlo Atherton High School and walked a lap, or a quarter mile! Now that’s a recipe for recovery, huh? Ana’s appetite is really good now, and she enjoyed Applewood pizza today. Apparently, the GI issues have been resolved! She is enjoyed the scrumptious chocolates that the mystery gift-giver gave when she was in the step down unit. The prednisone is kicking in.

I told Ana not to overdo it, and she says she is walking comfortably without sweating or working too hard. But she sure is determined! I reminded her that I set the goal of walking a mile in two months, and didn’t start running for 2 years. As much as we try to avoid competition, inevitably we compare each other’s recovery and physical achievements.

Anyway, that’s it for my report today. I’m off to New Mexico tomorrow. I hope Ana writes some reports occasionally. Thanks to Trent and Ryuta for caring for her, and next week Ana looks forward to the aid of Kathleen, Robin, Ann and Josh! I continued to be extremely grateful for God’s grace to provide so much hope through the support of friends and family.

I hope you are well and enjoying the week. Thank you for being in our lives. Love to you all, Isa