Training has begun...

I am back, as i figure the best way to begin training for the Transplant Games of America is to be held accountable for what i am doing.  Also, chronicling this experience, is the icing on the cake, since it was so apart of my fight when i was in recovery. 

I have been extremely busy with living life since the last time i posted on my blog.  It is amazing how once you get healthy, sitting in front of the computer to explain what is going on isn't a priority, it is more a priority to go out and LIVE it. Since i last posted i have traveled to New Mexico, San Diego, LA, and Oregon. We have had great success with The Power of Two film, which is now available to rent on itunes and other digital sources, like comcast and amazon, so please rent the film!

My next adventure is to go to the Transplant Games of America in Grand Rapids, Michigan.  Followed by a trip to Jacksonville Florida, Atlanta, Georgia, and possibly Dallas, Texas.  So i got some things up my sleeve.
Not to mention we just bought a house, and I am still working on all the boxes... i got two more emptied today... I will work on more later.

The other thing that has been a bit of a set back was I was struck with 2 bowel obstructions in two weeks.  I went to the ER for one, came back home 3.5 days later, then ended up back in the hospital for another week.  It was miserable.  I lost 12lbs from the beginning of the first one... now i fit in all my old swim suits :)

Now i am doing better... a little scared to eat food, but i am working on it.  It is hard to know what is a good thing and what is a bad thing to eat... i just don't know anymore... But beyond that i am getting in calories so i can begin training for the games!

I swam 3 times last week, and plan to swim on Wed. with BOTH of the Stenzel girls.  It is gonna be a good workout.  It is so interesting to be swimming again. I have very good technique, but getting the muscles to really pull it off in my arms is gonna be the trick :)  I guess as i keep practicing it will get better, but man i was wiped after this week.  Swimming takes a lot out of you, plus it makes you super hungry, and i need to be careful not to eat all the gross things one craves after swimming... but i will find balance.  I have found that peanut butter and jelly open face after swimming works pretty well.

Oh, i should probably tell you what it is that i am training for in the first place... I signed up to swim
50yards, Backstroke
50yards, Free
50yards, Butterfly
100yards, Free
and Medley Relay (with Ana and Isa)

I think i might drop out of the 100 Free, but we will see how fit i get before i get there... So, hopefully i will be able to keep you up to date on the goings on before the games.  Also, if you haven't seen it already I am trying to raise money to go to the Games... here is our blurb for fundraising.  If you wouldn't mind, it would be super helpful if you could donate any bit you have to help me get there.  Thanks in advance!

Please join Team NorCal of the upcoming Transplant Games of America for our Summer "20 for $12" Online fundraising campaign! We are asking at least 20 of you to consider donating a minimum of $12 so that transplant recipients and donor families from Northern California can attend the 2012 Transplant Games of America in Grand Rapids, Michigan from July 27-31, 2012. By donating, you are helping the team raise awareness about the life-saving gift of organ donation, honoring donor families, and encouraging all who attend to cherish their health by aspiring to new fitness goals. Every dollar helps and your contribution, however large or small, is greatly appreciated! Contributions can be made (via PayPal) online at: www.teamnorcal.org/online-donations or by sending a check with Team NorCal clearly written in the memo section to our fiscal sponsor, SF Bay Area TRIO , P.O. Box 2804, Cupertino, CA 95015. If you are supporting a specific athlete's fundraising minimum, please state your affiliate. All contributions are tax deductible! Please Donate to Team NorCal Today! For more information, see: www.transplantgamesofamerica.org or www.teamnorcal.org. Thank you so m uch for your consideration!

A Reflection upon turning 30

On Wednesday i hit a milestone that I dreamed of. I turned 30. I was never directly told that i was to only live to a specific age, but having CF and having friends with CF, I have always known that I would not become an old lady. To be honest, i always dreamed of 30, but i never was sure i would get here. If I had not received my beautiful set of lungs, this birthday may have been very different. I am trying to find the words i need to express my feelings, but instead i am sitting here with tears welling up in my eyes and goosebumps on my arms thinking about what was and what will be in my life.

This year will truly be a new beginning. I feel like my entire life is before me. I have so many directions I can choose to go in. I want to seize every moment and take advantage of every opportunity. My life is so very much the same as it always was, and so very different all at the same time.

When i look back on this past year the only way to describe much of my experiences was a year from hell. However, there were so many perfect moments within the struggles. For one, meeting the Dalai Lama, enough said. Everyone's support and caring meant the world to me. Casey's loyalty and dedication was unwavering. The time i got to spend with my family, their care and support, especially the times in the hospital with my Dad were worth every pain that i endured. The caring visits from my doctors, the whole transplant team, and their excitement for me when i got my Christmas miracle to go home. The caring calls and check ins from the doctors and medical staff who had seen me since i was a child, through my adolescence, and into the end of my life with CF. My most wonderful surgeon, whose kindness and smile lifted me each day he visited. The special nurses who helped me through. My fabulous dietician who is such a sweet friend and support. I can't ever forget the most amazing Respiratory therapist, who cheered me on like no one else :) I will never forget the most wonderful doctor who called me a peach. There was so much love given to me during my greatest struggle. What is so bizzarre, is that these things are what i remember most about the entire experience. I remember the love and compassion and strength that everyone gave to me. I remember my banana bunch poster with all the kind faces, and everyone who came to visit with their shirts. My CF friends who have helped me through my entire journey with CF, and all my transplant friends, who just by walking in the door gave me hope that my life would turn out alright. My healthy friends who had to endure seeing me in such a state, but did so anyways because they love me. It truly is love that lifts us up.

All of this has inspired me to want to give and give to others. I want to help them, and give them hope that they too can get through rough times. This core belief in me is why i studied psychology. It is why i pursued my graduate degree... But it really isn't education that allows us to provide hope, give love, and help others to be strong. That simply comes from the heart. Through my education I learned a lot about the human existence, and the way the mind works, and how messed up we as humans can get... but there is something innate in me that my education didn't teach me. The biggest life lesson is that to give love is to receive love. I want to share all that was given to me.

In the next decade of my life, my purpose is to love. To love myself, to love my partner, to love my family,to love my pets, to love my donor, to love my friends, to love my caretakers, to love my community, to love strangers, to love life. I hope that by doing this i will enable others to reach their potential. The most powerful medicine is love.

I couldn't be happier at 30, i feel like i have the world at my fingertips. I just hope the world is ready for me!

The BEST day!

My sister called me up one morning, about 2 months ago... "There is a groupon to go indoor skydiving... wanna go for your 30th bday?" "SURE!" I said... kinda hesitant but excited to try something new. I have been much more gunghoe about everything since the transplant. I never used to want to try so many things, but nowadays, Why not? I was kinda nervous that this indoor skydiving thing would be scary, but it turned out to be the most amazing thing i have ever done!!! I didn't have one ounce of fear. I felt totally safe and under control. We took a short class to learn the hand signals, got dressed up in our fancy flying suits, and dove right in! It was so exciting. The first round of flights we just learned what it felt like, and the instructor let us just fly around on our own. The second time he spun us around, and helped to take us up in the air, way up the 40 foot tunnel. It was so Awesome!!!! I have never had such an adrenaline rush before!!! It was kind of a bummer the next day because the weather was so crappy, and i was coming off the adrenaline high... it made for a big crash :( But i survived it.

I have been asking everyone if they want to go with me again! I plan to become a regular! I hope that you enjoy the pics! It was quite a way to start bringing in my 30th! I hope there are many more adventures as i become a "real" adult :)

Sisters getting ready to Fly!

Trent, Casey, Anna, Lou, Sara and Ana Stenzel getting ready to fly!

I'm FLYING!

Casey flying away!

Sisters having a birthday meal :)

It's been a while

I don't know if anyone is even out there anymore... but i figured it was time after a few inquiries about my whereabouts and my lack of posts on this blog, i figured it was about time.

There have been so many exciting things going on that i just haven't had much time to sit at the computer to write. I guess no news is good news when it comes to my health :)

I do have some pretty good news on the health front. I had my 7 month clinic visit (tomorrow is my 7 month anniversary) and i was able to blow a 94% FEV1 in my pulmonary function test!!! I don't know when i ever blew a number that high... probably when i was swimming as a little girl. Holy crap, right? I know it is awesome!!! Other than that things are really stable. My prograf level has been consistently where they want it for about a month now, which is such a relief. It was all over the place for a while. I am finally going to be having a bronchoscopy after all this time. They are going to do one to make sure everything is nice and happy in there. I figure it is time for me to get one in and join the ranks of the transplanters on this one...

Other than that I have been working out a bit, and trying new adventures and making good use of these new lungs. I am swimming still. Today i swam 44 laps in 40 minutes which is 4 laps more and faster than last week. I have been attending transplant bootcamp, at the stanford track every week as well. I also started yoga. so i have been staying active. The transplant bootcamp has been publicized a bunch lately in local media. Here is a great article from the SF chronicle http://articles.sfgate.com/2011-06-13/entertainment/29651934_1_double-lung-transplant-games-transplant-survivors

Other random activities i have done are iceskating, fishing, boating, hiking, biking, couponing, and cooking. I have spent many visits with friends. It is so nice to have the energy to do all of these things that i want to do. I feel like i am making up for lost time and running around like crazy.

I am also working on planning the CFRI teen and adult retreat this year, as i have for the past 10 years!!!! So crazy how time flies. I have been more active this year as i obviously have more energy and time to help out.

I also recently became a board member for Richie's Spirit Foundation. It is a great organization focusing on organ donor awareness. You can check it out http://www.richiesspirit.org/

Well, I need to go make dinner. Portobello mushroom burgers with provolone melted on top. Served on a whole wheat bun with lettuce, tomato, pickles and onion. With a side of corn on the cob, baked beans, and sweet potato fries. Delish? OH YA!

The Day I Have Been Waiting For...

Today was the day I have been talking about since before my transplant. The day i couldn't wait to come. The day that would show me the miracle that is transplant. I went for a real swim. I was joined by my wonderful friend Isa. I was so thankful that she could join me as i got to describe how each stroke felt, and how amazing it was to be in the water again. I think also having a friend helps you push yourself more as well.

I got in the water for the first time and it was WARM! thank goodness. I am a bit chicken when it comes to temperature. My first underwater breath was surreal. It was so easy. I was amazed how my body just remembered how to be in the water. I have not tried swimming laps for years, and i had not even been in a pool for about 2 years, since i was on Oxygen. So needless to say this was a long awaited moment. I had been talking about it with Steve, my transplant buddy all through rehab. We fantasized about swimming on the same relay team in the transplant Olympics, so there was a lot of buildup to this moment.

I tried all the strokes. Freestyle, was as easy as i remember. Breaststroke, i still suck at. Backstroke was relaxing, and FLY i remembered how. The most amazing thing was that i used to count breaths between strokes, and i could only go for 3 strokes in freestyle, and i noticed i was continuing past 3, 4, 5, 6, 7... I gotta remember i need more air! I just had so much in my lungs, and it all came out! Then when i did butterfly i wasn't try to desperately take a breath every stroke. My entire strategy is going to change, as i develop my stroke with my new breath. I felt invigorated by the swim. It was so great to be out of breath and take big deep breaths in my new lungs. I knew when i was up around 30 laps that i needed to stop swimming as i didn't want to hurt myself by doing too much too fast. It was so great to feel that i needed to stop myself, instead of being so exhausted that i had to drag myself out of the pool.

I just had to share with all of you out there about this day. It was momentous. I am so glad that i got to share it with such a close friend. I am up for any others who want to come swim with me!!!

I must say that now i have the confidence i need to be able to jump in the ocean to learn how to surf on Saturday at the CF surf day, courtesy of Mauli Ola foundation.

The Power of Two

The Official Trailer for the feature film documentary, "The Power of Two" has been released. You can visit their newly designed website at www.thepoweroftwomovie.com



They also have designed an ipad App, about organ donation. You can download it off of itunes. It is called, "The Daily Gift"

Officially Rehabilitated

I have completed my course of pulmonary rehabilitation (even doing an extra 2 days worth) and am now launched into the world. I feel that this ending is a ceremonial completion of my "recovery" from the transplant. I know that technically i am probably still recovering, and i will tell you that when you talk to me, because i like to take naps, because i am recovering :) Well, I like to take naps no matter what. I am a sleepy kind of person, even on all this prednisone. I thought maybe that would change, and i would be a different person with this transplant, but nope, some things are still the same.

Anyways... It is bitter sweet to end rehab. I no longer feel like i get to go to a place with like-lunged people. Throughout this experience i feel like i have joined a new community. I love to be part of a community. I have gotten to make friendships with a whole new crew of people, both patients, caregivers, and healthcare providers. Now that I am not coming to clinic but once a month, and now no more rehab, i am not having my daily or weekly visits with my new buddies. I know that sounds kinda strange, but the support of seeing others who have been through, are going through, or are going to go through the same experience really helps the process of getting through such a tough experience. Therefore, it is really bitter sweet in that I am so thrilled that I am at this place of recovery, but sad that I won't have my weekly meetings of the lungs.

On another note, when i do go in for blood work in the hospital, I end up running into people i know, so i guess that will suffice. I sure go in for blood work enough... twice this week, checking prograf levels. blah.

I got word from my nurse and my prograf is back to normal, from being super high, which raised my createnin, which also has come most of the way back down. Still dealing with coumadin, which is back to where it should be as well... So going into this week like a rock star ;)

Now that i am "launched" I have to maintain this fitness, even getting stronger and stronger all by myself. This will be the biggest challenge for myself. As many of you know, i have never been a big exerciser. So i must gather the strength, confidence, and will to get my ass to the gym. First I must join the gym, which I will be working on this coming week. If anyone wants to be a workout buddy, i would LOVE it. Most people work when i would want to exercise. There is a group of awesome transplantees who work out at the Stanford track once a week, and I hope to be joining them at some point soon... That will be an awesome new experience to keep me motivated and give me some support. My other goal is to do the " bike for breath" ride this year in July... I think it is a 10 mile ride ( for us not so experienced riders) and like up to 50 miles for those who want to be more pro. If anyone wants to join and ride as the banana bunch, please let me know. It would be a great way to celebrate!