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!

New Neighbors :)

Last night we met the new neighbors. It is official, our crazy idiot neighbor has finally left. He moved out slowly but finally moved all of his crap out, and took down the ugly raiders wind chime. When Casey and i heard the tinkle tinkle of him getting it down we KNEW we were in luck! YAY. Our new neighbor is kind and courteous. He came by to ask if there was any time when we would like the contractor to not be around so we could sleep or take a nap. Very considerate, but of course you don't actually take someone up on that. I just asked for them not to come before 8am, but i think that might be a Sunnyvale noise law anyway.

I believe this means we are on our way to a new life for sure.

I have one more week of rehab, which is just 2 days left. I have made huge strides. I started out only being able to walk for 10 minutes at a time at 1 mph. Now I am doing the vertical eliptical, for 15 minutes, walking on the treadmill at 2.8mph at 6% grade for 37 minutes, and riding the bike on level 3 for 22 minutes. AND i am up to lifting 5 and 4lbs weights - that is a big deal after having chest surgery. I think i am well on my way to being a functioning person and out of recovery land.
My only issue now is that i am still on coumadin for my blood clot. I think i will be on that for 2 more months. The levels have to be checked so often to make sure my blood isn't too thick or thin. The other thing i am dealing with is that my prograf level was SOOO high, out of the park. It went from being low to being too high with the same dose. From what i hear, this is a hard thing to control with a CF gut -- the absorbency is not very consistent. So those are my only concerning issues at this point, and i am not too concerned. It is so nice to have so much less stress in my life. I honestly feel so relaxed and at peace. i don't have nebulizers and treatments breathing down my back constantly. I am still busy with having to get the blood draws and medicines and stuff, but the stress level of being so chronically ill is gone. It is so nice to catch a break.

I am sure people are wondering how i am doing without the mom around all the time. Well, I am just fine. I thought i would be lonely, but i am still so busy that i haven't gotten to that space. My mom had to come help me on Wed. to drive me and my benadryled self to my last Cytogam appointment, so we have seen eachother. This next week she has a dentist appointment, so i will see her again... so i think we are fine. I know she is enjoying not living out of a suitcase, and spending time in her own home.

Things feel like they are wrapping up, after next week I think i will officially be out of recovery since rehab will be over. How strange. I realized today that I have been in recovery a few days longer than the amount of time i spent on the list waiting for lungs... what an accomplishment. I must say the recovery side went a whole lot faster...

Even though i am doing so well, i can't forget that i have friends who are still waiting for lungs. I send my thoughts to them and hope they too soon will experience their miracles.

The Next Chapter

This morning i woke up to an empty house. Casey went off snowboarding, and my mom is happily back in Livermore. I woke up with two kitties, one at my feet and the other trying to make an appeal for snuggling my face. I am now sitting on the couch, relaxing, drinking my coffee, and watching "million dollar listings" on Bravo, which is one of my guilty pleasures. I love real estate tv. There are no sounds of nebulizers, coughing, or pounding on my back... just the sound of sipping coffee and real-estate agents. It is the next chapter.

I don't have plans for the day. I am simply alone. I haven't spent much time alone in a long while. I was tempted to try to find someone to hang out with, but i think today i am going to spend with myself. I need to get to know me again. I need to learn who i am without CF lungs. I am a different person in many ways. I mean, geez I drink coffee for crying out loud ;)

My crazy neighbor moved out about 2 weeks ago, and left a mess in his wake (as usual). The new owners have not been here since, but today i hear noises upstairs, i think i saw a cleaning crew go up there. Now, this condo needs more than just a cleaning crew, they really need a wrecking crew. So i am expecting to hear construction in the near future...

It is funny that now that things are on the up and up I really don't have much to report. My last doctor's visit was great. They graduated me to coming once a month. My PFTs were up to 78% FEV1. That was even after having a small sinus cold. Things are just simply good. The only thing now is that i am still waiting for my scar to finish it's final healing. I have a divot in my chest that i am waiting to fill in. The prednisone makes it difficult to heal, so i am just waiting for that. I still have to deal with blood levels, and small changes in medication doses, but overall I am just fine. One day after I finish coumidin I will be getting a bronchoscopy, which I still have never had. However, they tell me that because I have no symptoms of rejection or infection they are not concerned about skipping the bronch.
The other thing I still have to do is have my last Cytogam infusion, which is the drug to help me avoid a CMV infection. I think total it will be 7 of these infusions. Once those are finished I will also be receiving an infusion for my bones every 3 months. I am a little nervous about this because previously when i tried fosamax or actonell, it made me really sick. They have told me that people don't experience the same symptoms with the infusion, so i am hopeful that i can just breeze through this.

I notice in myself that I am having a hard time deciding what i want to do with myself. I have lots of ideas. I want to help people, I want to make money, i want to live an exciting life. I have toyed with the ideas of working with girls with eating disorders, getting into real-estate, starting my program of making food for transplant families, or simply just being a homemaker. I am not sure what I should pursue. I figure I have time to figure this out, but i want to start moving in a direction. I don't like being stagnant. I need goals and a reason to go forward. I am a very motivated person, and I like to achieve... I want to find something worthwhile and fun to puruse in my life. I know things will come to fruition and it is hard to wait for my life to take off.

I have mentioned that this chapter in my life is about "playing hard". I realize because it has been so long since i have felt well that i don't even know how to initiate adventures. I dont know how to plan ahead, because i have always lived a life that was so unpredictable i couldn't plan. I have a mental block. I need to get out there and get adventurous. I can't wait for spring to begin, it will help me get inspiried. I am hoping to spend time out on the lake this year and would REALLY love to ride on a jet ski. I just need to live it up!

I hope you have enjoyed my ramblings of the next chapter. Basically i don't know where my life is going and how i will get there... but i do know that i am excited everyday to experience life with my new lungs. I hope that i can allow my donor to live on in me, and let her experience the world through me.

The Best part of having a transplant is getting to hug two of my bestest friends for the first time in 20 years!

Reflections on 3 months...

This is me... 3 months after my double lung transplant :)

Tonight i am sitting here in the exact same spot where I got the call for new lungs. It makes me pause and think back over the insanity of the last 9 months. I truly was resurrected from imminent death. I only realized once i was out of danger how very close i really was to loosing the battle to CF. Twenty years ago CF patients didn't have the opportunity that I had. CF was an absolute death sentence. At this point, the death that i will succumb to one day will not be due to end stage CF, but something else... maybe natural causes? I really did beat the disease. I didn't have that perspective when i was loosing my battle, but my mindset shifted once i realized that getting this transplant would get me out of CF lung disease forever. Even if i need another transplant one day, it won't be due to CF, that battle is over. My life has been centered around CF... a nagging clingon that would never leave. Now, I am not even referred to at the hospital as having CF, I am a lung transplant recipient. How strange that is?!

I think about the horrendous first month I had in recovery, and just like many describe for childbirth, the memories are fading. I am at the point now where no matter what i went through, I really feel it was worth it. I don't feel so delicate anymore, but i am becoming a sturdy and strong independent person again. Even more so than i have felt in a long time. I still have a ways to go to get to super-human status, but I will get there.



Today was the first day i spent alone from 8am to 5:30pm in about 9 months. Because i was doing 3 percussion treatments a day, I always had someone with me. I wasn't able to function independently. At my last clinic appointment I was cleared to drive, and my sternal precautions were lifted (meaning i can lift things over 5 lbs now). Today i drove MYSELF to the hospital for a blood draw. I came back, exercised for 35 minutes on my bike, did email, made lunch, took a nap, went to bed bath and beyond, petsmart, and took myself out for a coffee (my new addiction). I came home, watched Oprah, talked to Linda on the phone, prepared our left over dinner, and am now writing this blog post. All those things i did today would have been almost a weeks worth of activities before transplant, but today I did them all with energy to spare!!!! Hallelujah!
It brings tears to my eyes to think how far i have come in just 3 short months. Think of where i will be in 3 more months? This experience boggles my mind.

My short term goals right now are to join the "Y", and begin writing down a business plan for a program i would like to start to benefit transplant patients and their families. I want to be able to provide them with home cooked dinners, especially to the people who are out of town and don't have friends and family to help them, like ours helped us. It meant the world to us when someone brought us a meal. The kindness of healthy food, the thought, and the effort. It really meant a lot to me, to see that my mom didn't have to worry about cooking for the next couple days. (besides the fact all the food we received was delicious). I would love to provide that service to some of the families who need it... maybe i could call it "Delicious Recoveries." My goal is to develop a plan and find some funding so I can offer this as a free service. I got my work cut out for me, but i would love to give back in this way... if anyone wants to help I am open to ideas.


Can you believe it? I am making plans for the future!!! There are so many things i want to do. I can't wait to get back to Murphy's. I want to go out on the lake on the Ranger boat, with the wind blowing my hair into utter frizziness. I want to catch a big old bass (but have someone else touch it, as to avoid germs -- no sashimi remember?) I want to go to altitude and see what it is like to be able to breathe up there. I want to go back to my CF retreat and play and yell and laugh with all my friends who had to witness me at my sickest. I want to watch one of my closest friends get married in October. I want to see the final cut of "The Power of Two", I want to go on the road trip my mom and i have dreamed about for years... collecting treasures at flea markets on our way to Chicago, Illinois. Oh, and i want to see the biggest ball of yarn (don't ask). Not to mention going to a warm Caribbean island....


I am so grateful to my donor and their family. I am so grateful to my Surgeons. I am so grateful to my Doctors who have followed me after the transplant. I am so grateful for the social worker, dietitian, and my nurses. I am so grateful for my Family, who have always been there every step. Mom -- I can't say enough about how important you are. You know. Thank you. Dad -- You always make sure that we can do it. We had such special times in the hospital. Thank you. Sara -- My soul sister. You took such good care of me. You love me, no matter what. Thank you. Lou -- Thank you for being there for all of us, and loving my sister so much. Thank you. Casey -- There are no words to tell you how much i love you, and your loyalty and your never ending support of me and my whole family. Thank you, to the love of my life. Linda -- You have been more than a friend, you took care of me, slept over, and provided me with the meaning of true friendship. Thank you. Ana and Isa -- Your never ending support my entire life, thank you for showing me the way, and providing such love and support to me and my family. Thank you.
To all of those who came to the hospital -- It meant more to me than you will ever know. I needed to see your smiling faces and hear your encouraging words during those hard times. It kept me strong and fighting... we made it! Thank you. To all of those who brought food -- Thank you, it really helped. To all of those who sent cards, and prayers, and thoughts -- I felt it, all of it. My whole family did. Thank you.
To all of those who i have forgotten to mention, please know that i am thankful for everyone involved in this adventure. I was the one who underwent the surgery but this transplant happened to all of us. We all went through the journey together. I recognize it was difficult to watch the journey and everyone was so invested. Thank you for that. We as humans do so much better as a community, and i felt so supported. I could never have done it without all of you....Thank you to all of the Anna Banana's Bunch!



Here is to a new life, with new lungs and new breath! I think we can all breathe a little easier now. Amazing what a difference 3 months makes!

The Greatest Christmas Gift...

When you are a child getting the most desired gift from Santa is the greatest, most exciting thing that happens all year. You wake up in the morning to a shiny package wrapped in red and green with a huge ribbon on it. You tear into it because you simply can't wait, and there is no reason not to disregard the wrapping that makes it look so desirerable. You simply want in. Once opened you can play and play with this new toy for hours... But eventually you have to put it away to sleep. You can't take it with you on every excursion or to bed. Even though this toy brings you so much joy, over time you grow out of the gift and a new and bigger and better toy fills your mind... Making this fantastic Christmas gift dispensable. I have had this experience many times as a kid, however this year I truly received the greatest Christmas gift. My new lungs go with me everywhere... I never cease to have fun breathing with them. They have opened so many doors for new adventures, and they get to come along everywhere with me. I never have to put them away. Infact it is the opposite, I get to experienced their magic every moment of my life. The are comforting, exciting, playful, mysterious, and amazing. Every time I stop to think about this miracle that they are I am overcome with awe and gratitude. I don't think that there could ever be a greater Christmas gift. Every morning when I wake up I feel as if it is Christmas, the ability to breathe and not cough when I wake, is immeasurable. Each morning I feel that I get to unwrap that shiny red and green present and begin a new adventure. Thank you to my donor and their family......

A Normal Evening

As I went to bed last night, Casey came back from soccer and found me playing with my ipad in bed. "you are up late" he said, I told him that my wonderful friend Joanna stayed late, till 11pm! He replied "YOU had a normal evening!"

It is true, I did finally have a "normal evening". We had Joanna over for dinner, and she brought dessert. We hung out and chatted uninterrupted by treatments, only constricted by the fact that she had to drive back to SF. It was such a great experience. I am NOT used to this yet. I told her as the night was coming to a close that I had a nagging feeling that i had to do a treatment. It is so liberating not to have to do this. We talked of many things and it was so nice to experience a time that my body was not yelling to be the center of attention. It is an absolute miracle.

In other news, we received a notice in the mail announcing the SALE of our crazy upstairs neighbor's condo!!!! Yes, it is sold, but hummmmm.... he is still around. We are hoping that SOON he will FINALLY move out. There are definite signs that he is working on getting out of here. Pillows have been flying off the patio, obstructing the paths around the complex.



Also, furniture, previously in his driveway is now plopped outside on the sidewalk with a "free" sign.



So the signs of crazy moving out is starting to appear. I am nervous about the destruction that will occur when they do actually take the plunge. I guess I just will have to hold on and go for the ride...

Thank you crazy neighbor for helping to ring in the second chapter. New lungs, new breath, new life, NEW NEIGHBOR!!!!

Update

I am sorry I have not posted much lately. I have honestly been out having more fun and doing my life, and i honestly haven't been inspired to make the time to sit here and write. But i feel like i want to let people know what is going on these days, so here i sit attempting to update you.

My days at Rehab have been great. I am getting stronger each time, walking faster, doing more machines, and exercising for a whole hour!!! I can't explain how strange that is for me. Not JUST that i am doing the exercise, but that i feel GOOD doing it, and AFTER it. That is something i have never experienced in my life. Even when i was a little girl and a great swimmer, the exercise was always difficult, and i felt horrible after. I used to get headaches, and just total body fatigue. People always spoke of how exercise makes you FEEL BETTER... and i just never understood that until now. It does actually GIVE you energy instead of taking it all away.

On Wed. my mom and i took the day to go to the beach. It was beautiful. I haven't been to the beach in over a year so it was amazing to be back in the salty clean air. The weather was ridiculously nice. It was at least 70 degrees. We found sea glass, walked, and relaxed. It was a fantastic day. I am so thankful to be alive!



On the health front I have been graduated to going to clinic every two weeks, instead of every week. I also got my picc line out, which means i am totally tube free!!! My kidneys are still doing well, and all my levels are good. The only issue right now is my blood sugar. I can't seem to get it under control. When i exercise it tends to skyrocket, and sporadically shoots up to 300 now a days. I am trying my best, but it is not predictable at all. Very frustrating let me tell you...

I guess that is about it. I am just enjoying life.