Why???

As I wait for my transplant, I keep asking why did this happen now. Why couldn't my little lungs hold out longer for a new drug that might make a difference. With CF, we all hope for a cure. I did my best to stay health so I could hopefully take advantage of a cure but unfortunately a cure will not help the scaring in my lungs.

Why can't science be speed up. In the past ten years, I have heard so many promising things but none have come to fruition. Like using stem cell to grow new lung tissue to repair scarring. Or gene therapy that could have actually fixed the messed up gene in some one with CF. Now there is a drug in clinical studies that will help reduce sweat chloride levels — a key indicator of CF. This would mean the mucus in people with CF would not be so thick.

Why do I need a transplant when the future could mean something different to many with CF. Is this a pity party? No! Just keep wondering why me? Why now?

Any way that is my though of the day.

The 2nd Annual Dinner/ Dance was a success!

(Brian and I)

As the title, suggest the 2nd annual New Breath 4 Steph Dinner/Dance was a huge success. First, I need to thank Andrea York for pulling the event together. She is amazing. I knew there was a reason that when we were 4, I told her that she was going to be my best friend. She rocks. Without her, this event would have never taken place.


Me and Andrea

In addition to Andrea, there is a very large list of people to thank:

• Shawn York, Kelly Sastamoine, Tracy Glover and Wendy Martin (my aunt) for going out to get items donated for the Pick-a-Prize Auction.
• Stereo-Type for donating their time and talent and rocking the house during the dance. Everyone thought you guys were awesome.
• My mom, Candi Tutlis and my sister, Tonya Carlton for donating so many wonderful baskets and doing some baking for the desert table.

(Me and my Mom)

• The Sauce cooks: Kim Chaisson and Cindy Beedy.
• The kitchen crew: Diane Mitchel, Brian Mitchell, Dave Glover, Shawn York and Carol Voilette.
• The decorating crew:Tracy Glover, Diana Mulkern, Kim St. Germain and Nicole Glover.
• Michelle Curtis, Tonya Carlton, Melissa Tutlis (my sister), Dan Newell, Steve Tutlis (my dad), Connie Tutlis (my Nana), Candi Tutlis(my mom), Diana Mulkern, Kim St. Germain, Nicole Glover, Donnie St. Germain, and Tracy Glover for helping in any way you could during and after the event.

I hope I didn't miss anyone that helped out at the event.

I know a lot of people dropped off baked goods so thank you to all of you.

A big thanks goes out to all the business that donated items for the pick-a-prize auction. Because of your generosity we had over 90 items.

Thank you to the Eagles for donating the hall for the event.

We had a few large donations. So I want to say a special thanks to the Eagle Riders, Precision Manufacturing Solutions, Inc. (and Mike Gallant), Irish Logging and Lazaro's in memory of Mark Ross.

Last but not least, I need to thank everyone that came out to the event. Thank you for opening your wallets to help me out. Your generosity does not go unnoticed.

With everyone's help New Breath 4 Steph raised just about $6000 to help with my transplant related costs.

The night was so much fun. It was great to see friends that I hadn't see in years. Your support and friendship means a lot to me. Of course, I didn't get to see and talk to everyone that came out but there is always next year.

Love you all!

Are you serious?

So the past few days I have felt crappy. Not like needing IV crappy but just blah! Today, I woke up feeling worse. I am very wheezy, tired, my sinuses hurt, headache, very little voice and I am coughing up a little more junk. I am really hoping this is just a cold and that it will pass soon. The good news...I have no fevers. I just took some cold medicine which I never do but I want to see if I can shake some of these symptoms.

I really want to leave the house this weekend and this will put a damper on my plan to do so.

The tiredness may be from waking up too early again. This week I have been up before 6am every day. I need my sleep!

I really want this pot needle out of my chest so I can take a nice long bath and relax. Oh course my nurse is working evenings so it won't be until much later today. I could of had it removed yesterday but my home health agency sent out a LPN so she could not remove it. That is my luck.

I am in a cranky mood and should just go back to bed but I have too much to do for work. Unfortunately that requires a voice which mine is very limited today. Some days, I cannot win!

Living?

Since being told that I was in need of a double lung transplant, I feel like I just stalled my life. I need to keep living life while I wait for the call. How do you continue to live life when everything is so hard?

My life consists of eating, sleeping, watching TV, taking medications, chest PT and exercising. I hardly ever leave my house and when I do it is to get more food or medication or go to a doctors appointment.

Before I heard that I needed a lung transplant I did things. It has been so long ago, I don't even know what I did. I know I love to travel, attended sporting events, eat out, visit friends, spend time outside, and spend time with my family.

Today, I am going to put on my big girl panties and start enjoying the things I use to. I know it will be hard but just sitting in my house is hard. I doubt that I will be jumping on a plane to travel to some warm destination but I am going to plan a little get away for Brian and I.

I am going to go to an ice fishing derby with my husband on Saturday. The fresh air and exercise will do me good. Yes, the cold air will sting my lungs but I need to get out of my house. I will just put my oxygen on my face, which I hate to do, and then wrap up in a nice homemade scarf.

I have lost who I am. I need to fight this battle not only physically but mentally, which I think is 100 times harder. So from this day on, I am going to plan one or two activities a week that will help me be me and not someone just waiting for a lung transplant.

Uneventful

Well, I have have 2 more days of IVs left. My fevers are gone which was the reason I was started on the IVs in the first place. My lungs still feel very junky. Maybe today will be the day I get back on the treadmill. My energy level has been down since starting IVs so hopefully today I will see it increase.

Last week, I went to transplant clinic. Things are stable. I got to have an arterial blood test done. It wasn't as bad as all the other ones that I have had. The RT got it first try. I did PFTs and my 6 minute walk test. The day was pretty uneventful. The highlight of the day was being able to spend it with my dad.

I think my word that best describes the past year of my life is "uneventful." Though I try to live my life the best I can at this phase in my life, it is by far eventful. I cannot wait until I can "live" life the way I am use to living it. I need to decide where my first vacation is going to be after I get my new lungs. My husband and I love to travel and have been unable to for the past three years because of my health. So I pose this question to all my blog readers: Where would you go and why?

IV time

That's right, time for the lovely IV antibiotics. I have to say how much I love my port. The decision was made this morning to start IVs and I just finished my first dose. I should know by now I can't get much past 8 weeks before needing IVs.

At least I don't feel horrible. I just have my stupid fevers,I am a little more short of breath when moving around and I am starting to cough more junk up. Hopefully, this will be quick and painless. The IVs are scheduled for 14 days, every 8 hours.

I guess I get to drink lots of fluids and sleep a lot. The bright side is, I am not stuck in plastic hospital bed for 1-2 weeks.

Control Freak

Over the past few years, I have become aware that I am a control freak. When you are facing a double lung transplant, you have to learn to let that go. I am trying but not doing the best job at it.

Since my dry run on my birthday, I have realized there is so much to do before I get my call. These are not things that you would think of doing like packing a bag. These things are asking for help during and after the surgery. I have been told that having a strong social network will help in my recovery. Yesterday, I realized that I have not asked for support from my friends or family. So I wrote an email asking for help. Asking for help is something that does not come natural to me, that is part of being a control freak.

Last night, I was trying to talk to Brian about what he was going to do about work while I was in the hospital and when I came home since I am going to need care 24/7. He replied "Whatever I want to do." His employer is very understanding and will let him change his schedule or take time of without pay. Oh course I replied "What will that be? I need to know so I can make sure I can work out people to be here with me if you go to work" In a very Brian like way he said "Don't worry about it. I will make sure you have someone here to take care of you at all times."

Don't worry about it? Hello, you are talking to a control freak. Do you think I can just let go of this? I need to know. Did I tell you that I am a control freak?

I am trying to let go of this situation and tell myself Brian will take care of all this. This is very hard for me, probably harder than knowing that I am going to be getting a double lung transplant.

I am a planner. I always have all my ducks in a row. I do my finances every day. I know where every penny goes which drives Brian nuts. Knowing this, he wants me to not worry about my care after my transplant. If I had it my way, I would have a sign up sheet with dates and times when people would be here. It would be framed and hanging on the fridge.

Brian is a different breed then me. He goes with the flow. I don't know how to do that. I guess I just need to trust him and realize that is capable of taking care of this for me.