Tuesday, April 13, 2010
I had called the title of my book "Is this Destiny" and it's quite fitting actually, with the amount of shit that has gone on in my life. I read about everyone else everyday, but I have no idea if anyone reads about me. I have 25 followers, and that isn't nearly enough to start a campaign to raise awareness here. How can I ge tout into the world that i am writing a book about myself, and my experiences with Cystic Fibrosis, what I have learned, who I have met, and what i can share with you, or anyone else.
This is my life, CF is my life, and I don't intend on letting it pass me by. Eva sent out on a mission to start and leave behind a legacy. Who can compare to a documentary about their life, when the opportunity isn't' there for all of us to share. We don't have aspiring film producers and directors sitting in our homes, waiting for a call. What can I do to get my name out there, at the same level if not a big lower, cause no one can compare to Eva. Who do I talk to to get my sotry out there?
Well. I spoke with someone at IUniverse, it's a personal publishing company that i am thinking of working with. It's not cheap, and it's seems to be a pretty interesting feat on my hands. I plan to take this blog, and make it something amazing. Something I can be proud to have my name attached to it. i want to be big, I want to stand out, and I want to make a difference in someones life.
Making the decision to have a transplant, is not the easiest thing to do, and it most certainly is not an easy thing for family members to understand. But i hope that my workd will make that transition a little easier, and a little more flexible and understanding. When it was my choice to do this, I didn't talk to my parents until it was time for an assessment, and then it was all unrolling from there.
Assessment is the first step, waiting to be put on the list is the next step, and often times the longest one to wait for, then there is the agaony of being listed for the first time, but in my case the situation was different, I was so excited that i soulnt' imagine not being listed, then there is the wait time for the actual transplant. When that call comes in, it's ike heaven opens up tis' doors and says, no more worries. But there are worries, there is that chance that the lungs that are coming to you, aren't a match... then what... more waiting.
Some peoiple dont' make that list, and don't make it to the thrisd step of waiting. I want to put a positive persepective on life, it's something we all need to know. Transplant often work, they are not a cure for Cystic Fibrois, but it's another chance at life.
The way I see it, if you are going to lose everything, then why not take the chance on waiting... waiting never hurt anyone. I had waited 29 years for my transplant, another month or two wasn't going to hurt. I might not have survived, but it wasn't going to hurt, meds made sure of that.
Now that I have babbles on, I am seeking the help of my fellow readers. I am attaching my personal email address to this post, as I want you to tell me what you think of me, before my transplant, how you knew me, and what it was about me, that inspired you or made you befriend me. And if I only met you after my tranplant, what is it about me, that made you want to read about me, and be a part of my life.
All stories are welcomed, and might use some tid bits in my book. You never know. All the help is greatly appreciate.
With loving hope, and prayers for those who need them.
Here's the latest on Emily and her journey:
A Day of Healing
Sorry for taking so long to send out an update. I hope you weren't worried. It has been a busy day. Everyone on Team Emily has returned to work at least part time, so it is sometimes hard to post when we are splitting time between work and hospital. All is well with Emily. We can all breathe a collective sigh of relief.
Emily had a lot of pain today from her large abdominal incision, but she is really doing well. You may recall that they did not close the wound in order to let the swelling go down. If they had closed the incision, the swelling would have pushed against the lungs and reduced her capacity to breathe. Leaving it open allows the lungs to expand. She has had a wound-vac bandage covering the incision. This is a special bandage with drains coming from it. It keeps the site sterile and pulled together, while draining fluid from inside.
Surgery is scheduled for tomorrow morning (Tuesday). In the OR, they will determine whether the swelling has diminished enough to close the wound. If so, they will clean it out and then close the incision. If not, they will clean it out and put another wound-vac on it. We are hoping and praying that they are able to close it. That would mean that Emily can return to the business of healing and getting up and around.
While Emily is in the OR, the trach surgery team will replace her makeshift trach, a tube used in surgery, with a custom-fitted new trach. This will give her more ability to return to sitting up and getting stronger because the surgical tube requires her to be very still.
The good news of today is that her lungs are doing much better. The doctors reported that a current x-ray shows much less infection and the white blood count is much lower than a week ago. We are delighted with this news.
Today has also been a day of talking with Emily. The sedation from last week has finally worn off and she is much more cognizant of what is happening. She asked us to tell her everything that she could not remember, so we have filled in the blanks for her. She learned of the Code Blues, the stomach surgery and the plans for transplant. We unfolded the story for her slowly and tried to help her digest it. It is still a bit frustrating for her to mouth words and depend on our lip-reading.
Once she can sit up, she will be able to write or keyboard. She is overwhelmed with this knowledge. As I read the Care Pages to her, she became fully aware of how many of you are checking in on her, encouraging her and praying. This also caused her to tear up.
She is blessed beyond measure by the love and support she has received.
Thanks to you all for your continued encouragement.
Em, we are all here for you.
for more information on Cystic Fibrosis, please visit the following web sites...
www.cysticfibrosis.comTo read more about Emily's story, or follow her blog you can see it at the addresses listed below: