Appointment

I had a great appointment at my transplant clinic. First, I stepped on the scale this morning and I weighed 116! When I stepped on the scale at the clinic same result. My oxygen was 93 at fist and then quickly went to 98 at room air. Of course my heart rate was so high it would scare most people but not me 135...that's what I get walking 50 feet without oxygen on. Off to do lung my lung function test. My FEV1s was 1.24...41% of my predicted. Yeah!!!

Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!

After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.

Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!

Yeah...I know

It has been a while since I blogged. Life just got really hectic. I figured I would do a quick update while I did my vest.

-Today, I go to Boston for a transplant appointment
-Last week, I spent in a court house supporting my sister, Melissa as she was fighting to change primary residency of her 2 daughters which was with their father. It was two very long days but well worth it since she won!!! She will have primary residency at the beginning on next school year.
-A few weeks ago, Brian and I spent the night in Portland for a romantic get away. Anyone who knows my husband knows that this is basically impossible since he is such a comedian. We spent the entire night laughing but had a fantastic time.
-I have made it through the winter with out having a major flare up...knocking on wood! I was down and out on Monday but woke up refreshed on Tuesday. I'll take that any day than 2 plus weeks on IVs.
-We have had a snow storm every Monday for the past 3 weeks. I cannot wait for spring.
-Life is treating me pretty good right now.
- New Breath 4 Steph did a fundraiser with Pampered Chef. It raised $162 plus more to come from the consultant.

I have definitely not been bored in the past month. I was actually MIA for a while. I will write more when I have time.

Here is a saying I just came across that I fell in love with : Life should not be measured by the amount of breaths you take but by the amount of moments that leaves you breathless.

Friday

My goal is to blog every Friday. Most likely it will be a post of random thought or ideas.

So today I am going to blog about things I am looking forward to.

1. My husband coming home from his training. Brian has been gone for 2 days. We had and argument before he left and I have emotional felt like crap since he left. We have such high expectations for one another that we always disappoint the other and don't even know we are doing so. I love Brian more than I can ever express and can't wait for him to be home.

2. Baseball season. I love baseball. I an obsessed with the Red Sox. Pitchers and Catchers reported to Spring train this week which means baseball will be back very soon. Yeah!

3. Spring! It has been warm the past few days and a lot of snow is melting. I know we will probably get more snow but at least I know that spring and warmer weather is right around the corner.

4. The weekend. Enough said there.

5. February 21st. I have a surprise for my husband. It is his Valentines Day gift. My parents are coming down this weekend so I made plans for next weekend. I hope he loves his gift.

6. For the Fedex guy to deliver my espresso/latte maker. I love Caramel Lattes so I spoiled and bought a maker. Why should I keep giving my money to Dunkin Donuts.

7. March 11th. That is my next transplant appointment.

8. For custody to be settled with my Nieces. My sister goes to court in March to see if she will be awarded primary custody. Please pray that she gets her daughters. They want to be with her and her ex is being an ass about it!

Well that is all for today folks. I hope everyone has a great weekend.

Why?

It has been a while since I blogged but really need to write today. So a this post will be random and about things that are controlling my thoughts.

As many know, a fellow CFer is fighting for her life. She was in the process of being evaluated for double lung and liver transplant. I hope you all can take a minute of your day to say a prayer for Jenn and her family.

I have been very lucky that the current economy has not effected mine or my husband's jobs. I am definitely not taking this for granted. My parent live in a mill town and I fear for my dad's job everyday. The paper industry is taking a big hit and the mill my dad works for has been laying off a lot of people.

My sister, Melissa has been in a custody dispute with her ex-husband for over a year now. She has been trying to settle outside of court for the sake of the girls but her ex won't even talk with her about changes. So he is going to drag those poor girls into court and make them testify. That is just wrong and they don't deserve that.

I wish I was not adding extra stress on my friends and family with my health. During the past year, I have been preparing for a transplant. This is such an emotional roller coaster for everyone. Anytime I run a fever, my family gets concerned. I am not on the active call list yet because I am not 100% convinced that the time is now. I am going but my gut feeling which has never steered me wrong in the past.

I have this stupid eye twitch that I have had for almost 3 weeks. I am dragging myself to my PCP Monday to see if it is stress or eye strain.

Have I said how awesome my husband is lately. He knows that this time of year is rough for me. I get the winter blues and take it out on him. Earlier this week he brought me home roses. They are so beautiful. Then he wanted to surprise me so he bought me a birthday cake and a birthday gift. This sounds funny to most because my birthday was in December but we have always waited until his birthday, Feb 11th, to exchange gifts. Well, he already knows what I am giving him so he figured he would surprise me and give me my gift early. This is a very welcome surprise because he is always late on my gift. He knows I love gold and diamonds. He bought me a past, present and future diamond necklace. How fitting with everything we are going though. I truly love him.

I hope you enjoyed this look into my thoughts. Please tell everyone that you love how much they mean to you today!

Super Star!

I have been crazy with interviews for local TV channels and newspapers. My employer sent PR piece to different places about the Luau they are having on campus for me. Ever since my phone has been rings for interviews. Wow!

Yesterday, I did a piece for the local access channel that is viewed by 6 different towns. Today, was a local weekly news paper. Tomorrow is a radio station. I am going to be a pro when this is all done.

What I love most about this is I am educating people about cystic fibrosis and organ donation. I hope I can make people think twice when they are asked if the want to be an organ donor on their license.

Here is a link to a few articles:
http://www.keepmecurrent.com/Community/story.cfm?storyID=62251
http://www.sunjournal.com/story/298970-3/RiverValley/Jumping_to_help/
http://www.sunjournal.com/story/297068-3/RiverValley/Benefits_set_to_help_pay_for_new_lungs/

Jumping to help

By Barry Matulaitis,Special to the Sun Journal

RUMFORD - Spectacular aerial stunts, precise tricks and crowd-pleasing antics are but a few of the many attractions of any Maximum Velocity stunt show.

Three daring BMX riders, one intrepid inline skater and one nifty skateboarder combined to put on a memorable show for about 200 people at Mountain Valley High School on Saturday.

The event had a significant local flavor, as proceeds went toward a double lung transplant for Stephanie Tutlis Briggs, a 1994 Mountain Valley graduate who now lives in Limerick and has been battling cystic fibrosis since she was diagnosed at age 12.

Briggs will need about $300,000, in addition to medical insurance, to pay costs associated with the transplant.

Her brother-in-law, Geoff Carlton, coordinated the show and spoke of the passion the bikers, inline skaters and skateboarders have for their sport despite the risks involved.

"They all do this, anyways," Carlton said. "They ride at skate parks. They ride on the street. They do this because they love it."

Maximum Velocity performers take their show all over the United States and beyond, traveling to venues in Canada, Boston and New York, among other places. They recently completed their 10th year of performances at Boston's First Night celebration on New Year's Eve.

Ramps were brought in by Maximum Velocity and set up at both ends of the gym, with one platform in the center and another apparatus resembling a low metal balance beam off to one side. The ramps were constructed of durable aluminum topped with wood, with the ones at the end of the gym allowing riders to climb the walls, and the center ramp giving them the momentum to soar nearly to the ceiling.

Bret Labelle, an inline skater from Biddeford, was eager to perform in front of the crowd."I enjoy inline skating," he said. "I've been doing it close to 15 years now."

Labelle trains at Rye Air Field in southern New Hampshire "at least a couple of times a week just to keep sharp," he said.

"It's a great feeling to be able to help someone out that really needs it," he said of the opportunity to help Briggs.

When asked about the event, Briggs said, "The stunts they make are amazing. I'm hoping everyone who comes enjoys it as much as I do.

"When the show got under way, the bikers did a series of progressively higher leaps over the ramps and mixed in some acrobatics as they let go of the handlebars in mid-air or came off the seat.

Labelle did a series of 360-degree spins and "fakies" (riding backward) on his skates and proved to be equally adept at going forward or backward off the ramps. Skateboarding enthusiasts also got to see some interesting footwork and agile handstands on the skateboard.

Occasionally, a trick wouldn't quite come off as planned, allowing for some good-natured kidding among the showmen.

A highlight of the show involved the performers interacting with the audience. Carlton, who was emcee for the evening, brought four people onto the center platform and arranged them in order of height. Behind them, the bikers and Labelle did jumps parallel to the group to see who could jump the highest.

Carlton asked the crowd to cheer based on who caught the most air, and the audience obliged with gusto. According to Carlton, the show has been met with an eagerly attentive audience wherever it goes.

"They love it," he said of the crowds. "Everyone can ride a bike. You get to see the kinds of stunts these guys can do.

"Briggs said she was touched by the show of support for her."To me, it's overwhelming to have so many people come together for such a cause," she said. "It means the world to me."

Random Thoughts

I don't have a lot to write about but thought I would just write down some thoughts that are in my head.

Family can either keep you together or make you fall apart.

Goods friends are hard to find so do all you can to keep those that you have.

Men and woman deal with things so differently.

Why do people take their health for granted?

What is worse physical or emotional abuse?

Why do we stress out about things that we have no control over?

Why can't I have a crystal ball?

Do you have a goal for your life?

What can I do to feel more fulfilled?

Why do I feel so bored 85% of the time?

I want to read Scott Hamilton's book "The Great Eight: How to Be Happy (Even When You Have Every Reason to be Miserable)". Maybe everyone needs to read this.

We all have the inner strength to deal with what life throws at us.