Monday, November 2, 2009

Thoughts I Wanna Get Down Before I Forget Em:

Being in this stage of illness is so strange. There are a lot of adjectives that go along with it. This stage of illness is sad, and maddening, and overwhelming- but most of the time for me, it is just slow, and strange. I know that I have moved very quickly from "severe lung disease" to "end-stage lung disease."Every article I read about my symptoms is about "end-stage" lung diseases. I wait for a transplant because without one I will not live. On the one hand, I logically understand that. But it wasn't until this month in the hospital that I got any experience with this word, "dieing" as it pertained to me and the body I live in now.

What I know now about my point of view the weekend prior to going into the hospital is that I was already extremely hypoxic. So in addition to the lapses of logic that come along with feeling extremely ill, and not being able to breathe, my thoughts were actually altered. I remember sitting around my house in my pajams the entire time, and sleeping a lot, which must have worsened my hypoxia. Looking back, my mother says that I was already being sort of out of character over the phone. By Sunday, I was practicing active cycle breathing to keep my oxygen saturation around 92 on 5L of oxygen, and I knew Dr. U-bird was going to put me in the hospital.

This is where my memories start to get all messed up. Much of the rest of the week doesn't matter in relation to the point I want to make tonight - but I will say this -a lot of bad things happened that first week in the hospital and mostly because I was not my usual diligent self, overlooking my own care because I was all crazy hypoxic. Also, my own doctor was out of town, which bred a series of medical personnel self-righteous indulgences that I will write about at greater length some future day. So, yadda yadda yadda, a bunch of shit went down and I was just getting sicker.

[Sidenote to CFer readers: only on CF blog can you "yadda yadda yadda some scary medical stuff went down" in order to get to your point. I am reminded of that episode of Seinfeld, "You yadda yadda'd the sex?" "I yadda yadda'd the sex." I have, above, yadda yadda'd what is usually the most interesting part of the typical hospital story.]

A lot of bad things happened and by the end of the week, I was laying fetal in my hospital bed, which was propped up almost to sitting, and trying desperately to breathe: in . . . 1 . . . out . . . 1 . . . in . . . 2 . . . out . . . 2, until I reached 100. Then I would start again. I stayed up all night this way, counting my breath and occasionally stopping to see if my oxygen would stay stable. It didn't. I don't know, with the chain of events, if I had already seen a doctor, or I was afraid to call for the doctor, if I had tried the BiPap, or not. I only remember laying in the bed, counting my breaths, forcing them in and out.

This was when I realized, this is part of dieing. This is what it feels like. Before, I was ill. And now, I am dieing.

Around four in the morning, I started sending texts that said, "I really need someone here now. Someone should come here now," and some others that I don't really remember. I texted them to my parents who were planning to arrive only 4 days later as it was. I didn't want to be alone for four more days. All of a sudden.

At some point in the night, I was laying, counting my breaths on my fingers and trying to read with the book laying next to me. I was re-reading a book I have referenced here before called, "Sick Girl Speaks!" by Tiffany Christensen. On her list, "Top Ten Opportunities of Illness," she writes, "9. Going to an internal place that is so deep pain cannot find you there." In my state, I found this phrase very meaningful, and I decided to meditate on it instead of counting my breaths. I started to breathe to, "(Inhale) Take me to a place inside (Exhale) Where pain can never find me."

I wanted to find a place so deep and quiet inside myself that my tired lungs and breathing muscles could continue to do my breathing, while my mind and the rest of my exhausted body could get some rest. I started to also think about everything that lies ahead of me, not even knowing of the immediate threat of respiratory failure.

I wanted to find a place inside where pain would never find me. By the morning, I found it.



  1. Kelsey Hubbard11/2/09, 11:44 PM

    I started following you in Twitter randomly and as a nurse on a Pulmonary unit at a large university hospital, I found your story fascinating. I take care of patients with CF every day and have for nearly four years. From the medical perspective, it's easy to understand the disease and the prognosis and the progression...but it's such a unique gift you give to allow me to see into a person behind it, your thoughts and fears and realizations and the strange, random, silly, scary, interesting things that happen to you. I have to keep a certain degree of professional distance at work but have really, truly enjoyed your blog for the "behind the scenes" shots I get that I would never experience as the nurse. Please know your words carry a lot of weight and are appreciated, respected and sought after by many. Thank you for writing :)

  2. Nothing to say except hugs and I'm glad you were able to find that place that night...

  3. I know Tiffany follows you, and I'm sure it means a lot to her that her words helped you through that night and continue to help you as you go through this time.
    I'm so thankful that you can articulate all of these millions of emotions on top of just getting each damn breath in!

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  5. As I recall this period there is another lesson learned. As you know we had visits scheduled from CysticLady to other freinds and then leading to CysticDad and then CysticMom to keep CG covered with help. But there were small gaps in the visits before my visit. Then the day CG entered hospital each day we talked and asked "Should we change plans and come today?" At first the answer was "no." Then the answer started to become "I don't think so" to "I don't know," and finally "get here asap."
    Folks, when this kind of question is asked there are only two answers, "no" and some form of "yes." All of those vagaries were all "yes's we just didn't pick up on them. The difference between clear thinking and drunken hypoxia cannot be heard over the phone.
    You all know adult CFers are hospitalized all the time being there every day is not possible. But keep this experience in mind when these decisions are in front of you.

  6. CG I am glad you had the wisdom to look for that place and deeply sorry that it hurt/s that bad. But I also cannot help but have a reaction like where were the nurses? Where was the doctor? I am kind of a stereotypical Jewish mother that way, even though I am not your Jewish mother! Maybe that is my non-CF ignorance and they were right there for you.

    The thing that is truly amazing is that you trust your people to trust you, and they do you the same courtesy. That is an excellent way to live, truly: to have people around you who love you unconditionally. It is a testament to the rockin person that you are. Your family has something quite unusual happening, and it is not the type of stuff that happens quickly.


  7. Re: Lucy- Thanks for your reply. It prompts me to explain something further. I think this is one point that non-CFers don't get. When a CFer is in the hospital, her symptoms are all long-term. Nurses and doctors surrounding them don't always know what is a new symptom and what is an old symptom. My doctor was out of town, at this time, and it was the middle of the night. Most of what I was experiencing, shortness of breath, aching in my ribs and chest, "pingy" feelings in my lungs, and generally labored breathing, occur as part of a CF exaccerbation. They are the very reason someone is in the hospital in the first place. All of the treatments having begun to treat these symptoms, the doctors and nurses were doing their jobs- with the exception of the fact that I was not articulating the degree of these symptoms (or perhaps I had, and failed). Short of the BiPap and Salumedrol treatment that I eventually received, there is nothing else that could have been done for me, medically . . . I think. Difficult, I know, but true. I think that if my own Dr. U-Bird had been around, it might have been different- but not so sure since I was so out of my mind.

    Thanks for writing what you did about my family and trust. We have a lot of practice. :)

  8. Hey CG,
    I wanted to let you know that I am thinking of you. I am glad you got listed! Do you know if they plan to keep you in the hospital until your transplant or just until they gt you over this hurdle (if that is possible).

    I refuse to go in the hospital because I never know how long they will keep me. So I do home IVs until I see no improvement but try not to be too stubburn about going in.

    My thought are with you!

    CFsteph (MAINE)

  9. Steph-I get to go home Thurs., but yes, must continue IVs for two more weeks at home. My oxygen requirement is finally low enough that I can go home :) YAY! Are you on supp o2?

  10. Just wanted to say thanks for such a brave post, and I hope you know how much I admire you. The transparency and honesty with which you write, while still maintaining an overall "tone" of hope and anticipation, (and never seeming to venture into "whoa...TMI" territory for the average CF-less bear) is really, seriously inspiring. You really, really rock.

    Nothing but love as usual,

  11. Hey CG,
    I am on sipp O2 but not 24/7, mostly with my flare ups and when I am out and about moving around. So far I am fine a t rest and sleep.
    I am glad to hear you get to go home!


Thanks for commenting! Your comment will be posted ! -CG