Wednesday, July 14, 2010

Perspective and Patty

Growing up I only ever had one friend that had CF, her name was Katelyn and she died when we were kids.  I still think about her a lot actually.  They kind of don't want one CF kid hanging out with another CF kid because you're commingling germs.  Well, after I got my first transplant my old middle school teacher, Gerry Teja, contacted me that her son was dating someone with CF and she was on the transplant list and she thought it would be really neat to pair us up.  She felt we were really similar and would really hit it off and maybe I could help Patty (her name) with the transplant process.  Soon after I met Patty and we hit it off right away.  I've really never met someone who I could just instantly relate to so easily and we became fast friends.  Well I've known Patty now for maybe 5 years and I haven't seen her in a good year which is tragic - so yesterday we spent the day together.  She has not had a transplant and is still puttering along with her CF lungs quite well, but it's rather interesting to me because we have the same exactly lung function right now.  And to her, she is doing really well, and to me I feel like such crap.  I thought about it a lot on the way home last night.  How she herself will tell you that she is doing so well and she feels so great! And as she says this to me yesterday I think in my head how awesome that is, but then I also think, you only feel that way because it's all you know.  Having 35% of your lung function working is as horrible as it sounds, it sucks! And I can't explain to her what it is like to go through an entire day and never once think about your breathing.  I mean I just can't explain to anyone that hasn't been there, what it's like to go from not being able to breathe, to being normal and I just really cannot wait for that day to come for her.  I hope she stays at her 35% for a long time and won't need a transplant, but I really cannot wait for that day when I can sit with her and she has healthy lungs and I can see her not struggle, even though she doesn't think she is struggling, I can say she is because I've been to both sides.  She just so deserves to know what its like to be normal and really live.  Don't get me wrong she is living, and she is living well, but it's only as well as she can with sick lungs, it's NOTHING like being able to breathe, nothing.  In a way I wish everyone could just feel a few minutes of what it's like to have really shitty lungs, it would just give you this perspective that I can't find the words to explain.  I mean it must be like how someone who can't see feels when they can see again, or something like that.  I read this story about this lady that went blind after taking a medication that she had a bad reaction to and she was blind for 33 years and then doctors were able to restore her site, she must go through her days knowing this little secret no one else knows, having this little perspective no one else really has (expect for those that have experienced the same thing)  That is how I feel, I just have this little perspective in my head I really wish I could explain to everyone.  But in any event, what I really wish is that one day Patty knows what it is like to walk out the door and spend an entire day thinking about everything else besides her lungs.  There is truly nothing like it. 


  1. Wow, she still isn't on the list?? I totally can understand how you feel about that. Because like you said, you know what it's like to be on the other side. Hopefully she will realize this one day, too. And you will be on the other side again, and not have to worry about your breathing!!

  2. Well she has been on the list, but they took her off and put her inactive because her lung function has held steady at like 30% to 35% for the past few years, so she needs to start to basically decline again for them to make her active. Not that I want her to get sick, but I just can't wait for her to breathe!