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!