Exhaling: Me and My Little Friend, CF

Until recently, I didn't know what cuticles were.  The word sounds an awful lot like cubicle.  Are they cute cubicles?  It turns out that they're not cute cubicles.  I can always blame my parents for any lack of common knowledge I seem to posses.  Why Mom and Dad?  Why did you not teach me to push back my cuticles?

So today I thought it would be appropriate to talk about CF, since I just had my last clinic visit on Thursday.  Mostly I just have family reading this blog, but some others reading this may not know that I have cystic fibrosis.  I was diagnosed last year.  If you don't know what CF is, don't google it.  Instead, visit cff.org.  I would post the link to my CysticLife profile, but I don't think you can view it unless you're part of the website community.

So every three months I go to the CF center that Kaiser has in Oakland.  They have clinics where they check up on all the CF patients they have.  Most people my age were diagnosed as small children.  Nowadays there is infant screening for it.  I wasn't diagnosed until about May or June of last year.  Having such a late diagnosis is really great because a late diagnosis is indicative of a healthy life.  Some older men don't know that they have CF until they're trying to have kids.  The only reason I found out that I had CF was because I went in for a carrier screen after I found out that I had four possible CF mutations floating around in my family.

So Thursday was like my 4th or so visit to the clinic.  Each visit is either good or bad.  My first was awesome.  I went in and had really great numbers for my PFT (Pulmonary Function Test).  I didn't really know what to expect going in, but it was more like a little chat with the doctor rather than some intense discussion of treatment options.  I mean, apart from the genetics report and my sweat chloride test, I was perfectly healthy and there wasn't anything really to treat.  I walked out of my first clinic feeling like I didn't even have CF.

Last Thanksgiving I ran a 5k as part of Outrun CF

Since then, things have been up and down.  It's a complicated relationship.  If my CF doctor is slow to react to something like a weird test result or a weird symptom, part of me feels like I need to be heard and I need to be taken care of properly.  Another part of me is relieved when that happens.  I mean, if they don't think something is a big deal, then I shouldn't worry about it either, right?  Now I feel like I'm always trying to balance how I feel about my condition.  On one side, I'm a mostly healthy young adult.  I don't have to take half the medications that most CF patients do, I don't have a vest, and my PFT scores are great.  On the other side, I have CF, I feel different than other people, my disease is progressive, I might not be able to have children without doing something crazy like in vitro fertilization, CFTR related diabetes is possible, I'm always coughing and clearing my throat after coming back from a run, I'm 22 and may have osteoporosis.  Blah Blah Blah, it goes on.  It doesn't bite at me everyday like it used to, but many times it's a deliberate choice to be calm about it.  Other times I just feel like I need to stop pitying myself, suck it up, and move on.

My visit on Thursday was not one of the good visits.  It started out well.  I was worried about my PFT score going in because I haven't had time to run since mid January with how busy the semester has been.  When the computer said that I was 7% up from my last test, which was great because my numbers had been steadily declining since my first PFT in June, my worry was alleviated.  My victory was short lived, however, when my doctor came in and told me that the machine was likely wrong.  It makes sense.  Could I really believe that not running, which was my form of "respiratory therapy," would be helping me? 

During the visit, they were talking to me more about future treatments, about medications that I would eventually take and how they would get me a vest once I got better insurance.  The dietitian, who I met for the first time, wanted me to test my blood sugar two hours after every big meal and a few times after waking up to see if my abnormally high 2 hour glucose test they did months ago could be verified or if it was a lab error.  She said that, because I was pancreatic sufficient, high blood sugar would be from insulin resistance (type 2 diabetes, not CFTR related).  I have a family history of diabetes, and although I'm not overweight, it could happen.  I really don't want to end up diabetic like my dad.  Every time I stick myself I remember how my dad always used to do it.  It's a reminder of how fragile health can be and of how he died.

After the visit I wasn't done.  I met with another nurse who was helping out with some research that Kaiser is doing.  They basically just wanted some of my blood for research and as part of a project that the CDC is doing to make sure that CF centers' infant screenings are working accurately.  I was picked because I have at least one mutation that's relatively rare (lucky me?).  As with all research, there was a lot of paperwork I had to do, consents and all of that.  I'm sure 10% of it was necessary.  Why wouldn't someone participate?  I felt that it was the least that I could do.  The medical professionals and those at the CDC are the ones who are doing all the work.  If I can sacrifice 5 minutes of my time to help other CF centers diagnose and treat others, I'd definitely do it.  Plus, some of my cells are being immortalized, which sounds pretty awesome.

After that, I still wasn't done.  I had another appointment to look into my fertility.  I knew that more than 95% of men with CF were infertile.  That's not to be confused with sterile.  With cystic fibrosis,  the vas deferens is either not correctly developed or is absent.  This means that it's still possible to have children, but it would involve going to a fertility clinic of some sort to do in vitro fertilization.  The idea of having to do that didn't bother me much.  Yeah, it's not as easy as the traditional way, but one positive is that children are a lot easier to plan.  No "accidents," and yes I can call them that because I was one, or so my mom says.

Well it turns out that there's nothing wrong with my vas deferens.  In fact, I don't appear to have any vas deferens at all.  I'm so glad that this information about my man parts is on the Internet.  Anyways, though I knew the odds going in, I'm still surprised at how much the confirmation affected me.  I know that I can still have kids, and they will be mine, perhaps with my eyes, face, hairy chest, or other physical features (not just my mutations).  Still, the news really hit me.  I think I didn't realize before how much I want to be a father.

Thursday was just a reminder how much CF sucks.  I feel horrible when I complain about it because there's so many that have it worse than me, but I hate it.  I don't want to have to take medications or enzymes.  I don't want to have to use a vest or do weird treatments.  I don't want to have to take my inhaler before going out for a run.  I don't want diabetes.  I don't want to have to prick myself everyday and inject myself with insulin as if I was a lab in chemistry.  I don't want to have to take my wife to a fertility clinic before we can start a family.  I don't want any of it.  I still try to see the positive, and remember that God didn't promise anyone an easy life.  I did learn a lot last year after going through the diagnosis.  I guess I just have more to learn from it.

For now, all I can do is exhale.  Knowing that Heavenly Father loves me, knows me, and is guiding me helps.  Prayer is great.  Having the love and support of awesome friends, great family, and the best girlfriend make me happy and tip the balance; the good in my life far outweighs the bad.