December 20th....a.k.a. "The talk"

So after all that I had been through since August & all of the talk about lung transplants & trying to decide if it was time to look into it or not, we finally had our "official" mtg w/the CF team about what we should do.  We scheduled this mtg to be after I had a regular CF clinic visit.  Not everyone from the team was at the mtg, but I know that the group as a whole had talked about it extensively before they met w/us & those who were there shared insight from the rest of the team w/us.

I feel the need to preface something here before I start.  I love my CF team in Boise.  Because of them CF clinic & CF care in Idaho has come a long way.  They are all amazing!!! They also each have their own personalities & areas of interest.  While this is good & it helps them to make sure that they are treating the patients as a whole in the best possible way, sometimes it's really annoying.  You know....the GI dr says to do x & the Family Practice dr says to do y & then the Pulmonologist will say to do xyz & you begin to wonder who is right...ahh!  But really it is good.  I also have a good relationship with all of my drs.  We are all open & honest w/each other, even when we have different opinions.  That being said, we are all human & we each perceive things differently.  Not everyone has the same kind of relationship w/their drs like I have w/mine.  That's ok too.  So when I do talk about my drs, I'm only giving my opinion of them & my version of what is going on in my story.  Your experience or opinion might be different than mine.

Ok back to the post...Technically we had "the talk" w/Perry about if I was a good candidate for a transplant a few weeks before this appt.  That first appt/mtg was a hard one for me.  I knew that Curtis, Perry & I were going to talk about transplants that day.  I don't really know what I was expecting "the talk" to be like, but it wasn't the way that it happened.  Perry spent the whole time rattling off statistics about transplant survival rates, the lung allocation score & where I would fall right at that moment & a few other things.  There were lots of statistics & number stuff rattled off.  It was great for Curtis, who had already done his own research about lung transplants, but not so great for me.  All I heard was us talking about me dying.  Seriously.  Perry talked about how CF is progressive & lots of statistics about if I would survive a transplant now compared to my current health & where I would be in 5 yrs for each of them.  Do we go w/what the statistics say, would my quality of life be better or not, or am I sick enough to need the transplant & survive or are we jumping the gun & we do it too early & then I don't do well?  Now I'm thankful for all the research & knowledge Perry has.  The statistic stuff is what helped Curtis the most.  But honestly people....I have CF.  I've lived with it since I was born! I've always known that my disease would gradually progress & eventually take my life.  I've always know that there would come a time when I would need a lung transplant.  I'm not afraid to die!  So why are we dwelling on that part....I know that when it's my time to go then I will go.  I want to have a better quality of life & getting a transplant is the only way to get that.  Aside from all of that, it was good.  We came away from that mtg w/an agreement that Perry would consult w/a few more drs & that we needed to meet at least w/Karen (CF Adult Pulmonlogist) & himself to "get the ball rolling". In the mean-time Curtis & I needed to think about which transplant center we wanted to go to & think about family support, travel, & cost of living.

"The Talk" was actually pretty good.  The "attendees" were: Perry (Pediatric & CF care.....yes, I still see my Pediatrician bcuz until recently CF was considered a childhood disease & a Peds doc was the best one to do managed care for CF), Karen (Adult Pulmonologist), Mary (CF nurse & friend), Curtis & I.  The 5 of us had a great talk.  They each brought up good points.  We talked about what the transplant evaluation process would be like, where we should go, & if it was in fact the right time for us to start down that path.  So here are the answers to some of the things we talked about:

Should we try for a transplant?  Yes! When they look at the formula that is used to come up with the Lung Allocation Score, I still score pretty low.  But when you look at how much lung function I have lost over the last 6 months to a year it is significant & the fact that I've had 2 lung collapses w/in 3 months of each other doesn't help either.  This really points to the fact that I probably just don't have TIME for us to be waiting around trying to decide if I'm sick enough yet.  So we are going for it.

Where should we go? At first we were thinking about going back to the Midwest area because Curtis' sister & her family recently moved to Iowa.  When trying to decide on a center, one of the things to consider is family support.  Most of our family lives in the Boise area, so this didn't help us much.  We talked a lot about different lung transplant centers in the USA.  Every doctor has their own opinion about which hospital is the best.  The top five that they all decided on were Duke University (Durham, NC), Stanford University (Stanford, CA), University of Colorado (Aurora, CO), University of Washington (Seattle, WA) & another one that I can't remember at the moment. In choosing a center we also need to consider the experience of the center w/transplanting people w/CF & if they have a good CF center nearby.  How many transplants do they do in a year? How many people are on the waiting list? What is the survival rate of the transplanted patients for that center?  Then of course there is the travel time to get there (I will have to go back several times a year for check-ups), the cost of living for the area, & previous experience from other patients.  Another point for me to consider was how well the transplant center communicates w/other centers.  We left our mtg not knowing exactly where we were going to go, but knew that my drs would support me 100% where ever I decided to go.  We were going to research more & pray about it & then let them know what we decided.

What is the transplant process like?  Here is what we learned & knew up to this point.  Each transplant center is different.  Some centers will only take results of ALL of the testing for the evaluation from their own center & others will take the latest info of test results that you have had done at your home center & do a few others at their center.  Some have "stronger" rules about who they will accept or not.  The only way for us to know which hospital does what is to contact the hospital & ask questions.  We also found out that a lot of the testing that needs to be done are things that we have already been doing on a regular basis or we have already started to monitor because the CF team knew that my health at some point would progress to needed a transplant. (yes, I have smart drs!)  As soon as we decide where to go my drs would send off my medical history & a referral to the center to get evaluated for a transplant.  After they look at all of that then the center decides if I would be a good candidate for their program, then they schedule a consultation appt to meet w/me & decide if we really understand what is entailed w/getting a transplant, after that if they decide that they want to work w/me then I start the testing & evaluation process.  Yes, it's a complicated mess.....but all worth it in the end!  

So this post is long & packed with information.  If you want to learn more about CF & lung transplants please go to CF Foundation.  This site doesn't have all the answers to questions, but it's a beginning.  As I write more of my story I'll have links on the side of my blog to other websites that also have helpful information.

(side note: I'm now officially done writing about 2011....it only took me till June 2012 to do it...) =)