Tuesday, March 30, 2010

Good News

Brian and I had our family meeting with the doctor and social worker today. I get to go home tomorrow. I can't wait to be in my own house and get some sleep. I will be taking the next few days to catch up on my sleep and get into my new routine. Which will include a lot of new drugs and at least 30 minutes of exercise everyday.

This weekend it is suppose to be beautiful weather in Maine. Brian and I are so excited to be able to get outside this weekend. I am so ready to start living again. I need to hold myself back until I am 100%.

Monday, March 29, 2010


Today has been the day I have been waiting for...the first day that I felt like I had CF free lungs! Enough said.

Friday, March 26, 2010

My view...

...My Boobs

This is the view of me looking down at my scar! Don't mind the staples, the wires, the nakedness or the drains. That is all par for the course.

Here is what I know

At 9:00am Wednesday March 17th, 2010, my work phone rang. There was a doctor on the other line. A few minutes later I was discovering he was one of the Pulmonary doctors at my transplant center, Brigham and Women's Hospital in Boston. He wanted to let me know that the surgeon, Dr. Camp wanted him to call me and stay by the phone because they had a pair of lungs they were looking at for me. He said he would call me back in an hour to an hour and a half. So over 3 hours passed...no call. I was told I could eat something light so ate an Ensure. At Noon, I got in touch with the clinic, she called Dr. Camp's cell phone and told me he still wanted me on standby.

At 1:15, the pulmonary doctor called back to say Dr. camp wanted me to head to the hospital. Though, they still did not know if it was a go. We got to the hospital around 4:00pm. After running here there and everywhere I was admitted and sent to the ER. Admitting said I was a go for 6:30pm and ER did not have that information so sat in the ER room. About 20 minutes passed and the ER nurse believed it was a go for 7ish. At this point no lines had been started. A calm just came over me. They went to town. At 7:30pm, I was rolled back to the OR waiting area. At 8:10pm, I remember hearing the surgeon say let's roll!

The next time I remember anything is Saturday March 20th around 2pm. I do know though that I have had a double lung transplant, another surgery for a bleed, I have been in ICU and now in a nice little corner room with a nice view. It has been quite a ride. I will need a lot of help the next few months recovering from this ordeal.

Thank you all that sent positive thoughts and prayers my way. They were definitely heard.

Wednesday, March 24, 2010

Irish Luk

I don't know who doesn't know yet but on St. Patty's day I got the call for lungs. It all happened so fast. I didn't know until 8:00pm that it was a go. It was just like an episode of ER. The lungs had arrived and off I went to the operating room. The next thing I know, it is 2pm on Saturday March 20th and I am waking up with tubes and a new clam shaped scare.

One week later, I am sitting in my room waiting for my daily healing routine to begin. I have progressed nicely but cannot wait for the chest tubes to be taken out. They are painful and uncomfortable but I know the doctors will take them out when the time is right. Well, I am getting tired of focusing on the computer and will write more later.

Tuesday, March 16, 2010

Yesterday's procedures

So yesterday, I had a colonoscopy and an upper endoscopy done to see if my low iron was cause by some type of bleeding in my digestive system. Good news is things looked great. Bad news still no answer to what is causing the low iron.

The two procedures went very smoothly. Everyone kept telling me how bad the prep was for the colonoscopy. It was nothing. I was in and out of the OR in 45 minutes. When I came to I had Brian laughing. When I start to come to after the anesthesia, I say what ever come to my mind. My filter is shut off. Plus they fill you with air during the colonoscopy so you have to pass it afterwards and there is no way to do it quietly. We just laughed and laughed.

I also realized how much I love my port. When the nurse started my IV, she numbed my vein so I didn't feel the mess she mad of my hand until they pulled the IV. I have a bruise almost that covers my entire hand. WTF!

I was really tired when I got home so I didn't get on the treadmill. So, I must get on it today. I can feel the difference that the exercise is making to my lungs. Plus I feel stronger. I need to keep at it! Last week, I got on it 5 times. My that is my goal this week.

Lung wise, I feel like I am finally at my base line. Let's hope I stay this way for a little while.

Thursday, March 11, 2010

I can't seem to put together a nicely written post. I have tried 5 times this week to create a post that reflects my thoughts. So I am just going to jot them down and a random fashion.

Treadmill! I am back! Today will make day 4!

Yesterday, I had a lovely 2 hour dentist appointment to get a crown. I have put this off for years and figured I have pushed my luck long enough.

Went to the Gastroenterologist last week and get to have colonoscopy and upper endoscopy on Monday. Doesn't that sound like a fun day?

The weather in Maine has been beautiful this week. I am so looking forward to spring.

The IVs must have worked because I actually feel normal, if there is such thing.

Saturday night, i went to a CF fundraiser in portland. It was a lot of fun. I went with Brian and my parents. The event raised about $1500 for the CF foundation. I even got out on the dance floor with my oxygen on.

This weekend it a benefit for my double lung transplant. Maximun Velocity will be doing a stunt show again at the high school that I graduated from. I hope the word has gotten out about the event because the BMX, inline skating and skateboarding trick are crazy. Last year, everyone was super impressed.

Well, that is it for now. I do want to respond to this blog post http://amatteroflifeandbreath.blogspot.com/2010/03/positive-charge-blogger-challenge.html but my brain is not functioning today!

Tuesday, March 2, 2010

nothing new

As the days go by, the more I cannot wait for my transplant. I have been trying to live my life the best I can but it seems like when ever I do what I want I feel wiped out and sick the next day. I am just tired of not being able to live the life that I want to live.

I had a busy weekend this past weekend and I am now paying for it. It is so hard to do the things I want to do knowing it is going to wear me down.

I just finished 3 weeks of IV antibiotics and would expect to feel great. But I have been down and out for the past 2 days: Headaches, stomach problems, tired and fevers. I just want to feel like my old self for more than a day.

I am so tired of this. Let's hope I wake up tomorrow feeling like a new person.