"Where you wanna go
I'd love to take you there
Wish that I could make the road easy
I wish that life was fair
Don't wanna see you cry
Even when it rains
And I hope you don't forget this
You were born for better things

But if you ever fall down straight to the bottom
And you can't get back where you started
With no strength to stand
I'm gonna reach for your hand
When the going gets rough right when it's hurting
I will be there to help bear the burden
Any place any time
You gotta know for you I'll fight
(Ooh ooh, ooh ooh)
Any place any time
You gotta know for you I'll fight" - Daughtry

The past 8 months have been filled with many ups, some downs and everything in between.  I can't believe I haven't written a blog in so long.  Maybe it's because I feel a little defeated, some disappointment but also optimistic about where we go from here.  Since my last blog post nearly 8 months ago, I've met with two lung transplant teams here in Houston.  I have been followed closely for the past 8 months by a team at St. Luke's and recently met with the team at Methodist.   My lung function has dropped and held steady at about 25%, and about 3-4 months ago during my 6 minute walk test, I de-saturated below 90%, which indicates the need for supplemental oxygen. So I've had to start on oxygen at night and if I dip below 90%.  This has been a BIG adjustment for me.  Emotionally, I was not ready for this.  Thankfully I was surrounded by my husband and my parents when the doctor told me the news, and they were able to carry out the rest of the appointment, while I sat shell shocked, not really hearing anything else, besides defeat. 

After meeting with the team at Methodist, we have decided to proceed with the lung transplant evaluation.  This will consist of 4 days of pretty intense testing in April.  I will have numerous scans, lots of blood-work, a heart catheterization and a few other tests to determine how healthy the rest of my body is. In going through these tests now, it will allow for me to be (hopefully) listed when the time comes, if needed, within a year of these tests.  The point is to do these tests while I am healthy enough and feeling strong enough, so that I don't have to do them in an emergency situation.  The idea is that I will not be listed as "active" (therefore not on the transplant list) just yet.  I was told the typical lung function to "list" at is 20%.  This would require a 5% loss for me.  I reflected upon this the other night, as it wasn't too long ago when I was at 30%.  That 5% drop has been significant ... I can certainly tell in my daily life, I've lost that 5%.  It's much harder to do simple things without getting winded. It plain just sucks, to be honest.  Don't get me wrong, I am so incredibly happy that I am STILL able to be out and about, I am still working, I can still workout (however I am supposed to be using oxygen...I have yet to mentally overcome that obstacle.  I am also working on trying to get a portable concentrator so I don't have to lug an oxygen tank behind me to the gym, uhg). This has been a big adjustment for me, one that hasn't exactly come easy. I keep thinking ... maybe I don't need it, but then, I know the numbers show I do. 

Along with Methodist and St. Luke's here in Houston, we think we might make a trip to Chicago to visit the transplant team at University of Chicago.  Ironically, my lung doctor in Chicago that I saw while we lived there, has joined their team as the transplant pulmonologist. This means, if we were to have a transplant there, she would be the doctor (or one of them) caring for me ... which obviously means a lot to me.  The reality though of having to relocate to Chicago for transplant is something we're trying to mull through. All the doctors we've talked to (including Dr. McShane in Chicago) have encouraged us to try and stay local.  Obviously for a few reasons, this would be our best bet ... but we (I) feel the need to at least explore this option in Chicago.  There is also a possibility that I could be listed at both a center here in Houston and the Chicago center.  This potentially would increase my odds of getting a transplant sooner, as the way it works, the two centers get organs from different areas of the country. Ideally though, we'd like to feel comfortable with a team here in Houston so we don't have to relocate.  The balance between being sick enough for transplant and not being too sick to get a transplant is very delicate. 

Soooo, while I have so many friends who are getting married, vacationing to exotic places, getting pregnant and having children, Bob and I are making life altering decisions about a life changing and life saving surgery, I hope to be fortunate enough to go through someday.  I never thought I would say that, but I can honestly say, I would love to have one day of breathing, where it is unobstructed, clear, deep breaths.  One day where I am not constantly reminded of how hard it is to breathe.  At the same time, I am extremely frightened of what is to come.  I know, I will have to get sicker, to get a chance to get better, and this scares me.  I don't want to be tied down by an oxygen tank.  I've heard how sick you have to be to be transplanted.  I can't imagine losing another 5% lung function, but at the same time I am not ready for a transplant right now.  Dr. McShane expressed to me the importance of going into the transplant surgery in as good of shape as possible, while realizing it's such a hard thing to do.  The hardest thing for me to do, is push myself physically.  This is exactly what you have to do, to stay strong.  But, you can't push your body too hard because then it actually works against you.   I have to be very careful about stressing my heart too much.  Dr. McShane said the recovery your body has to make after a lung transplant is likened to training everyday, for two weeks straight for an Iron Man.  If you know what that training consists of, that's extremely difficult and taxing on the body. So, all of this is such a balancing act, one that is often tricky to manage. 

As with everything though, we take things as they come and roll with it.  Sure, these changes aren't favorable ... but they are expected.  I am so incredibly lucky to have such a supportive group standing beside me all the way.  I can't imagine having to go through this without this support system.  We will move on and we will get through these tougher times, and embrace all those happy moments. I've been fortunate to be connected with some amazing people, great doctors and wonderful friends.  While I know it will have to get tougher before it gets better, I am extremely positive in that I believe it will all work out.  There are good things that will come from all of this.

I hope to update the blog in a much more attentive fashion going forward, especially as we make decisions on where to be listed for transplant. As always, thanks for the support .... and all I ask going forward is positive thinking for my family.  This is extremely difficult on the people I love most and I ask you think of them and send them positive thoughts/energy.  Love to you all who read this blog, thanks for all of your thoughts!!

-Rebecca