Last night I wrote a post, and after reading it this morning I had to erase it. It made no sense at all!! I promise to do more frequent updates as things go along, since longer ones I never have energy for, and that means they never get done.
I have been here for about 6 days. Tomorrow is a week. I know time flies like crazy. Especially for me, since there has never been a dull moment. Mostly however I am on percasette's feeling dopey and sleepy, and on my bi-pap sleeping. It's the only relief I get and that's okay with me. It's better than the alternative....wait, is there an alternative....that's right no there is not.
I have had a few scary episodes where breathing did not come. Instead a heart rate of 165 did, and the panic of chocking. It's the worst thing, and it happened last night leaving me tired and scared and defeated. Today I have seemed to returned to some sort of comfort. My slight panic over coughing and chocking I am working on. Last night did not help. The doctors keep reminding me about the anxiety component of not being able to breathe, but for some reason when they say it, it's like they are not giving me my share of credit for how the situation felt and how awful it was. Meaning that if I didn't panic, I would have been able to calm down sooner and not have the extent of an incident that I did. I guess I don't know how to stay relaxed when I am unable to breathe. I'm just a person here people, just a person that is weak and tired a yes panicked when was unable to inhale. The Bi-pap saved me. I grabbed it and slipped it on my face and it started to work for me. Seriously thank god for that machine.
So needless to say it has been a battle. One after the other.My mom is sending me movies of Scarlett every day. They are so cute. She is incredible. I don't have a lot to say about her. This is very hard for me. I am just fighting my own battles and know that she is being raised beautifully by her family.
2 months, 1 week, 1 day on the waiting list. Every day my doctor hopes it's the day. By placing me on the rapidly deteriorating status, she believes it will be any day. I hope so.
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10 comments:
I can't imagine how frightening this has been for you Natalia. I remember having severe asthma attacks as a child and how scared I was not to be able to catch my breath. I know what you're going through is so much more difficult but hang in there, those lungs are coming soon with your name on them.
I love the videos of little Scarlett, they are adorable.
Hey Natalia,
Your thoughts you expressed on how do you relax when you can't breathe reminded me of the conversation I had with a Good Vibe Coach a while back when I had rejection and was feeling desperate and worried. I would love to share what she sent me after I spoke to her. I know it's considered a 'new age' way of thinking, I suppose, but it's helped me tremendously 'letting go of that need.'
I am thinking of you and picturing you home with Scarlett!
You are so brave. I can't even imagine how you are dealing with everything you have to, I'm sure it's just something you have to do -- but it's amazing. I'm praying for you everyday and hoping your new lungs come any day. Lots of love and rest.
I'm not sure if I've ever commented before but I've been reading your blog for some time.
I've been a bit out of touch and wasn't aware that you'd go into the hospital. Please know you're in my thoughts and prayers daily. I hope that your new lungs come quickly, that you recover quickly and are back home with Miss Scarlett in your arms.
Oh Natalia...
our thoughts are SO with you. Wish we were there to support you any way we can!!
xox
Mark and gang
Hi Nat. Gosh, you are fighting such a battle. I was hoping that they would bump you up to the top of the list given your condition. Have faith in that and I will be praying for you and send you all of the positive vibes that I can. Hang in lady and if there is ever anything I can do, please just let me know.
Many hugs and much love.
Praying for you too. Can they give you ativan for your anxiety? Wishing you godspeed and sending you strength woman! Here's a cheer for your spirits: "YOU CAN DO IT, YES IT'S TRUE! STAY STRONG UNTIL THERE'S LUNGS FOR YOU!!!!!" I understand it's hard. But you sound incredibly strong willed in the face of this.
yes ativan I got. helped me out
I think about you so often and I hope and pray that your new lungs get to you very very soon so that you do not have to struggle like this. This sounds so incredibly scary and I can't imagine how you must be feeling or how you are managing to cope - you have such incredible strength!! I am absolutely amazed with how you are handling all of this. I am sure this blog is such an inspiration to so many other CF patients.
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