A fellow blogger, John, asked about my increase in lung function and what I did to get it there.While I certainly don't have a neat and tidy answer, it did make me reflect on the journey to this point. So here goes, my "So much more than you actually wanted to know" story:
I can still remember the day I went into my new clinic feeling like crap, even though just a few weeks prior I had had a tune-up. I blew a 47. Forty-seven! I was devastated I was completely heartbroken. All I could picture was my sister strapped to her o2 machine, knitting to pass the time while she waited for a new pair of lungs, and here I was blowing a 47. As much as I loved my sister there was no way I wanted to follow in her footsteps.
I struggled in 2009 with a mis-diagnoses of bi-polar disorder and was put on SO many toxic doses of medications I didn't need. Let me tell you one thing, anti-convulsants as a mood stabilizers are pretty nasty on their own, never mind if you don't actually need them. I was physically and emotionally ill. Terrifying doesn't even begin to cut it.
My new clinic, they were my savior. Those two pediatric pulmonologists saved my life. I packed my bags and headed in. They managed to bring me up to the 60's again and my lungs felt amazing. They tried to help me sort out my 'craziness,' as I used to call it by having a couple of psychiatric fellows come give me an evaluation. Unfortunately, at such a stressful time, not to mention being slowly poisoned by lithium, all the symptoms I described make it appear that I was indeed, still bi-polar and still needing medical help. They tweaked my dosage and sent me back to the regular psychiatrist who almost killed me. Literally. [That's a whole other story. for sure.]
With healthy lungs I tried to carry on. I had just moved down to Virginia (hence new clinic) to be with my now husband Kyle. I had no friends, no job, was stuck in an apartment all day because the anxiety of leaving was crippling Unfortunately I still have some lingering anxiety problems due to all the complexities that arose because of that silly mis-diagnoses. I got sick, I got even more depressed and a lot of tears were shed.
It was going home for christmas and sitting in a ball crying while everyone was out sledding that did me in. I had had enough. I weaned myself off with a tapering dose of my anti-convulsants , anti-psychotics and threw away my anxiety pills. (probably not the best call on that one!) but miraculously I started feeling better. Not, "I HAVE MANIA I FEEL AWESOME" better, but better.
When we got home, I packed my bags and went in again. I blew a 53 that time. I let them know what I was doing with my 'crazy meds' and they set someone up to follow me/ monitor the taper: which I rocked at apparently. Go me! Although I did get quite the scolding for starting tapering on my own! DONT DO THIS! GET YOUR DOCTORS PERMISSION! Then they introduced me to Shannon. She also was a vital part in saving my life. She was a grad student working with the CF clinic to get her psychology masters, or PhD. She was interested in becoming a counselor to those with chronic illness, more specifically CF.
I saw Shannon twice a week, and then once a week. Turns out I didn't need mood stabilizers, I just needed someone to listen to me. She helped me figure out my frustrations and anxiety, all the while, giving me tools to help cope and deal with them in a positive way. I think everyone needs a Shannon.
I left the hospital at 74%, that's 20% higher folks. Twenty! Although, we thought that was a false high coming off a 3 week course of prednisone. But man, I loved life. I made some friends, started exercising, got a job, became compliant. That year rocked. 2010 man; it was a great year.
I managed to find a base line of 68% and keep my lungs there! We managed to figure out that a general/meal/sleep schedule was key, and I couldn't sleep too much or that made me feel sick too! We were on a roll. 2011 carried on the same way and it was great. I continued to improve seeing 70's here and there. --Side note, I also went from a sickly skinny just barely 90 lbs, back to the low hundred range!--
When I moved to Baltimore I knew what had to be done: get a job, establish a routine, find some friends, and get some exercise. I was feeling so optimistic about everything. And then, the worst hospital stay of my life occurred and if I needed any more motivation to stay healthy that'll do it. After that disaster I was determined to stay out of that hospital for as long as sanely possibly. And I did. 18 months or so.
I really kept up my schedule of vesting & doing inhaled meds right in the morning, I picked up my activity level with a dog, gymnastics and lots of DIY projects around the house. And I've been flying ever since. But the biggest contributor to SUCH high numbers, would be Kalydeco. While I managed to get up to 72-74% by myself, Kalydeco really helped push me over the edge and I was that 82% after my first tune-up on Kalydeco. --side not again, I also think gaining some weight has helped out too! The heavier I weigh, the higher my fev1 creeps--
After reflecting on all of this, while I still hold some bitter feelings towards some medicines *cough- yea I'm looking at you, you anti-psychotics -cough* I feel so grateful that we have modern medicine and that I am blessed enough financially (and I guess genetically too!) to be a part of some exciting new drugs. I couldn't even begin to imagine where I'd be if I didn't have such caring, passionate and dedicated doctors down in Virginia. I am so sad that they can't continue to treat me, but they'll always hold such a special place in my heart.
Phew! This entry was wicked long. (Fun fact, using wicked as an adjective is a RI/MA thing I think, just like coffee milk and Dels. )