Time for an even updatier update!
As of October 2010 . . . Here is My Story
Thanks for joining the CG Readership! Here are the basics that you should know before reading. This is the very short version of my life before the blog:
I was born in 1980 with Cystic Fibrosis and spent most of my life easily managing my disease in dedicated 2-3 hour increments per day. I maintained a healthy, active lifestyle, and mostly did not notice that my lung capacity was slowly falling away from me. I was following what some clinicians call "the expected rate of decline" in cystic fibrosis, and meanwhile I was fostering a great fear of medical professionals - which helped me ignore my disease when I chose to.
When I moved to New England in 2005, I had about 40% lung capacity. I attended graduate school here and continued to embark on my career as a theatre educator. My CF was very manageable, most of the time. Until about 3 years ago, when I started having massive
hemoptysis, or coughing up blood, that coincided with my period. After enduring this for about a year, and unable to get a diagnosis from my former CF team, I was diagnosed
presumptively with
pulmonary endometriosis by an amazing Ob/
Gyn who has a lot of experience with this disorder. I was treated and my bleeds stopped. After that year, however, my life was a little more difficult.
Even so, I stayed out of the hospital for about 3 years, until my health took a deep dive in the spring of 2008 when I had a difficult exacerbation. I went into the hospital and did a long course of home IVs, and slowly recovered over the summer.
Unfortunately, I got sick again that fall, and completed a five week course of IVs. My lung capacity took nearly a 10% dip from this one exacerbation, and the year that followed was very difficult. This spring (2009), I had yet another
exacerbation and my lung capacity dipped well below 30%. Once again recovering over the summer, I planned to start the lung transplant evaluation process slowly over 2009-2010.
Unfortunately, on August 11, 2009, my birthday, I had a massive bought of
hemoptysis that landed me in the ER. This bleed badly damaged my lung tissue, and I never truly recovered. I have been in and out of the hospital ever since, and began, with the aid of my CF team, to fast-track my lung transplant evaluation.
My mother moved here for about 7 months to help take care of me, and my family has been visiting me this year as my conditioned worsened and now improves. This year, I also spent a week in the ICU with severe
hypercapnia, or respiratory failure, from the high carbon dioxide levels and
CO2 retention in my body. This was a very scary, life-threatening experience. During this time, as my condition was very dire, the team at my hospital was able to complete my transplant evaluation and I was officially placed on the UNOS list. During my ICU stay, I began to use an assisted ventilation machine called a BiPap, which helps me to breathe in more deeply, and exhale fully.
But- I became active on the
UNOS list for double-lung transplant in late fall of 2009!
YAY! I went home and resumed a pretty active unemployed schedule (if those two things really go together). Taking my meds, taking my bipap nap, doing IVs every 8 weeks or so. doing daily PT and autogenic drainage, exercising, etc. - waiting for my lungs.
I was also happy to be double listed (listed with UNOS in two diffferent regions), so that I could wait for lungs in the northeast and midwest. I hoped to get my transplant that spring/summer, I waited, I prayed, I prepared.
On July 27th, 2009, I received the gift of life from a generous young donor.
As I recover from my transplant and some post-surgical lymphatic complications, I am doing quite well! My lung capacity is higher now than it has been in . . . I don't have a chart for it- so I'd say 15 years!
I have been using this blog since June to start exploring my story. I had no idea it would be the year I got my transplant. So much can change so quickly with this disease, I am learning (more slowly than perhaps I should) to live in the moment.
I love my readership! I use a service called
statcounter.com. Through it, I can see the
internet service providers and
IP addresses of my readers. I have readers all over the world, and many people I call "medical readers" at hospitals all over the country. These
IPs could also be other CF patients in the hospital. I love it! To date, I have about
60,000 unique readers and about
300 daily readers! Thanks for joining!
Below, you will find the guidelines for the blog, so you don't have any surprises.
-CG
NUMBER ONE: "HONESTLY!"
I must be honest with you, the reader, and tell you something about the blog. I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.
[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.[1] ]
NUMBER TWO: "CAN I GET A LITTLE PRIVACY, PULLEASE?!"
I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I might periodically go anonymous on the blog and just take my name off it. Similarly, I will not ever use real names on my blog even if people tell me they are "okay with it."
POINT THREE: "YOU TAKE THE GOOD, YOU TAKE THE BAD, YOU TAKE 'EM BOTH . . ."
There is something to be explored here about the balance between having a good attitude and just being honest with your own negativity. There is something to be said, but I don't know quite what it is yet. This may mean that my blog is not the blog for you. That's okay with me.
POINT FOUR: "WHO DO YOU THINK YOU ARE?!"
Please click HERE if you want to read about the current demographics and lifestyle information that I am sharing. Click HERE if you want to see a pretty picture of me, and to learn my real name :)
CLICK HERE FOR POINT FIVE: Crazy-Ass Disclaimer Section
