Truly a Miracle

I see that I have neglected my blog here for the past couple of months.  It's been such a whirlwind since the surgery that I haven't really taken the time to update.  I am now back at home with my girls living a "normal" life.  I was released from the hospital on October 13th, eight days after my transplant.  We expected to be there for a couple of weeks, but I was released pretty quickly.  I was then scheduled to stay in the near vincinity of UCSF for an additional six weeks.  Fortunately, I've progressed so well that I was able to return to my home on November 5th, only ONE MONTH from my transplant date.  It has truly been a miracle thus far. 
My recovery has been excellent and I feel great.  I still have to return to UCSF from time to time for various appointments.  Shell and I just spent last night in SF as I had two days worth of appointments.  I had a spirometry, which is a breathing test to assess my lung capacity.  I also had a routine check-up with the transplant team which consists of an RN, a pharmacist, and a pulmonologist.  To end the day, I had to get a CT scan of my chest.  The following day, I had a bronchoscopy.  A "bronch" is one of the least popular parts of the recovery process.  Basically, I tube with a camera is shoved down your throat and navigated throughout your chest, so that the doctors can see how the lungs are doing from the inside.  While inside they also perform a biopsy by cutting little pieces of tissue from the lungs.  You don't feel the biopsy, but you are awake while the tube is worked around your throat.  Not a pleasurable experience at all!  To round out the second day, I went through a cytogam infusion.  The infusion involves medicine being fed through an IV for a period of about 3 hours.  Not at all painful, but very boring.  Shell and I bring a portable DVD player and watch a movie to kill the time.
It may seem like a lot to have to go through, but the further out I am from the transplant, the less frequently they occur.  My appointments now begin to be a month apart and I won't have another bronch until I'm six months out.  In any case, it is all completely worth it.  I am a completely new person...actually, I'm back to being the me I used to be.  The me I'm SUPPOSED to be.  I'm doing things that I thought I would never do again.  However, I'm not completely back yet.  I'm still working on my strength and I have a broken sternum that is going to take some time to heal completely.  Nonetheless, I'm 100 percent better than I was before the surgery.  On Thanksgiving Day, Shell, Alex, and I walked in the 5k Run to Feed the Hungry.  Again, something that I thought I would never do again...TRULY a miracle.

Amazing

I just did something that I was unable to do just one week ago. I took
three laps around the hospital floor without the use of oxygen. It was
all on my own, with my new set of lungs. There was no strain and I had
no shortness of breath. It is amazing...truly a miracle. I haven't
been able to do that in so long. I can't even remember the last time.
To add icing to the cake, I can see the Blue Angels performing outside
of my hospital room window.
An awesome day, to say the least.

Sent from Marco Bautista's iPhone

I Got the Call

The call came Monday morning, October 5th. I went into surgery that
evening. Today is Thursday, October 8th and it is my second day out
of ICU. I'm feeling pretty well. Of course there is pain in my chest
and I'm still getting my strength back, but I'm progressing quite
well. My nurse said she has never seen anyone leave the ICU so
quickly. I hope it keeps up!
Sent from Marco Bautista's iPhone

Still Waiting...

Here we are now, three weeks on the waiting list.  Another weekend...when the calls come.  Shell has been hired back as an "on-call" deputy on graveyards.  It sucks not having her here at night, but times are tough and we need the work.  I am now officially retired and my final paycheck has yet to arrive.  I'm afraid the call is going to come while she is gone.  Not that there is a whole lot to be done, but having her here would just be more of a comfort.
I started a respiratory therapy class this week.  The class is geared toward COPD patients, but it is helping me as well.  The goal of the class is to teach you techniques to keep you active despite your breathing difficulties.  It includes exercise and alternate breathing methods.  The exercise definitely helps as I have become less and less active as my disease has progressed.  I am the youngest person in the class by no less than 25 years.  I am also the only one in the class that is using oxygen. 
I have two types of compressed oxygen tanks that I use when I leave the house.  There are larger tanks that I use with a constant flow of oxygen.  These tanks keep me the most active, but they are more bulky and conspicuous.  The small tanks fit in a backpack and are much less conspicuous, but they use a regulated flow of oxygen and the air runs out much faster.  Either way, the tanks don't last a whole lot of time, so if I am going to be anywhere for more than an hour, I have to bring along extra tanks.  It makes leaving the house much more than difficult than I would like, and often keeps me at home.
There are so many things that I am missing out on these days.  I hate it.  I am tired of the limitations.  Hopefully, the therapy will help.  Of course ultimately, the surgery will.  I can't wait. 

Something Different

I have decided to go a different direction with this blog. What was once going to be a showcase of my amatuer photography will now be a little insight into my life as a transplant patient. It has now been just over two weeks since I was officially placed on the transplant list. I have known that the time was coming for a few months now, but there were a series of tests and approvals that I had to wait through before officially being placed. Right now, I am on oxygen, pretty much 24/7. Without the oxygen, I am severely limited in what I am able to do. After seeing the doctors at UCSF, I have been put on a higher oxygen level, making life much easier. Before I was using a lower oxygen level, and I was still very limited in what I could do.

I've been given a score of 44.2, which I'm told is very high for someone not living in the hospital. That score puts me near the top of the list. When I was given the official notice over the phone, the nurse told me that it was possible that I could be called that first weekend. The surgeon we spoke with, told us that he'd like me to be home for the holidays. The average wait for someone on the list is about three months. That would put me in the hospital around Christmas time. It's going to be Alex's first Christmas, so I would really like to be home by then.

Like I said, it's been two weeks, so I'm not quite as anxious as I was that first weekend, but I still get a little nervous everytime the phone rings. Especially early in the morning, or later at night. It feels a little like when Shelly (my wife) was pregnant. We're just sitting here everyday waiting for the time to come, so we can haul ass to the hospital. She's recently laid off from the sheriff's department, so she is home with me in my retirement. It is a crazy time for us right now. There has been so much going on, we haven't had time to breathe (no pun intended).

Prior to her being laid-off, we moved into our new house. We've been here a few months now. I've been home from work for about six months, but I will be officially retired at the end of this month. We baptized Alex last month and we are having our religious marriage ceremony this week, one day before our one-year anniversary. Again, crazy times.

Despite the craziness, things are going well. I am feeling much better (physically and spiritually) these days. The increase in oxygen allows me to do so much more than before without feeling completely drained--while at home anyway. (At home, I use an oxygen concentrator. Away from home, I rely on oxygen tanks, but I will get more into that at another time.) I am also feeling much more optimistic about the surgery. I am looking forward to becoming me again and living life as life should be lived.

There's the phone again...still makes me jump.

A New Beginning

I've learned that creative expression can be therapeutic. For that reason, I am starting this photo blog. It will be a collection of my amateur photography and random thoughts. Just a little something to give total strangers, as well as my friends and family, a heads up on what is going on in my life.

Enjoy...

There she is...

That's "my lovely." We've made a new life together and I could not be happier. I cannot wait for what the future holds. From here on out, every day is an adventure.

Recent events have made me really think about my father. It's going on 14 years now that he's been gone. I wish he were here to share in my life experiences.

Ok, I will have to cut this edition short, as the "baby" needs to go potty and have to get ready for tomorrow morning. I have a long drive in the morning and have to be up extra early.

Hopefully, future postings will have a little more content. It all depends on my ability to get out and take some shots. I want the meat of this blog to be photos and my commentary to be limited.

Until next time...