Thursday, December 31, 2009

My Birthday full of surprises

I was sitting home all alone on my 34th birthday so I figured I would go get my hair cut. My appointment was for noon but the hair dresser was running about a half hour behind. So I showed up at 12:30. They told me it was going to be at least another half hour. I figured I had nothing else to do so I waited. At 1:15, I was still waiting and my cell phone rang. It was Andrea. I asked her what she was doing and she said she was just sitting in her car. Of course, I asked where she was and she was in my drive way. Yeah. I gave her directions to the Salon. She got there in about 5 minutes. When she walked in, I gave her a big hug and then my cell phone beep and said I had a new message. I looked at Andrea and asked if she just left me a message. Nope. So I figured I would check my messages. It was Brigham and Women's Hospital waiting me to call ASAP. My face turned white. Andrea helped me get the number down and we paged the doctor back. In a minute, the Doctor called me back and said they thought they had a donor for me but within the 5 minutes of phone tag the donor was not a match. Well, I guess I know where I am on the list. Happy Birthday to me and Happy New Year to all of you!

Sunday, December 27, 2009

transplant journey

So today, I logged on to Facebook to see that Piper, one of my online CF friends got a call for lungs but it was just a dry run (as we CFers call it). Piper and I have been going through this journey at the same time. We have been at the same place with our CF for a year or so. Constant flare ups and nothing seems to help us get better. Reading about her call, made my journey towards a transplant so much more real tonight. We are going to different centers but got listed about the same time. We seem to always be sick together and on IVs at the same time.

One of the thing that has become very clear to me this holiday season is I am ready for my call. I am tired of not living. I feel like the past 2 years, I have just been being. I am tired of having to rest after a shower so I can continue getting dressed and then resting so I can brush my hair and then resting so I can blow dry my hair and I can go on and on. If you asked me 6 months ago, I would truthfully tell you that I was not ready for the call. Now, I can honestly say I can't wait for the call.

I am trying to continue to live my life as normal as I can but it is difficult at times. I have to brag for a minute because today I sang "We are the Champions" on wii rock band with my nephews. I even stretched out a few of the notes. When it was over, I was physically tired. This coming from someone that loves to sing even if I don't always sing in tune. I put the microphone down and coughed my lungs out. Even though it wore me out, singing on the wii made me feel normal for just a few minutes of my day.

Wednesday, December 23, 2009

Weekly update

I am so glad that today is my last day of work this week. Then I work Monday, Tuesday and Wednesday and then I am of until after the New Year. Yeah! I need a little down time if that is what you want to call it. I have 3 more Christmas gatherings, my birthday and New years eve within that time.

Last Saturday, Brian and I had my Mom, Dad, Tonya(sister) , Geoff(BIL), Trey(nephew), Chase(nephew), Melissa(sister), Dan(sister's boyfriend), Kassie(niece) and Rheana(niece) all over for a Christmas celebration. I think it was a great time. We filled our bellies, opened gifts, drank a little holiday spirits and enjoyed each others company. I was successful at the beef roast with wild mushroom sauce. The appetizers and deserts were awesome. At the beginning of the day, I was in a bad mood but I think I was just feeling overwhelmed. Once I got the roast cooked, my mood because festive. My family all knows that entertaining can be difficult for me so they all pitched in and did a great job to make the event a success. Oh yeah, I got the earrings that I picked out the week before from Lia Sophia and I had to put them right on. They are very lovely.

Sunday, Brian's Mom and Dad came over for a visit. It was nice and relaxing. We ordered pizza so I didn't have to cook or clean up.

Today, I am working and watching Kassie and Rheana. I can hear them in the other room right now bossing my dogs around. Tomorrow, I need to finish up my Christmas shopping. I have 4 people left to buy for. Yuck.

Christmas day, Brian and I plan to spend the day together. This weekend (weather permitting) we have to travel to 2 different family gatherings.

So far, my health has kept up with the season. Two more weekends to see if it will prevail. Of course, I get tired easy but no new flare ups so far.

Well, that is it around here. In case I get too busy to blog, I hope you all have a very Merry Christmas and a Happy New Year.

Facebook readers: This note is from my blog

Wednesday, December 16, 2009

A day in the life of me

This blog is also meant to be educational to people about cystic fibrosis and organ transplants. I think it is a good time to write a little bit about my typical day.

Wake up tired.
Drink coffee.
Do albuterol via nebulizer.

Cough and spit.
Stop 1/2 way through treatment because I cough so hard that I puke up my coffee.
Cough and spit.
Take a break until stomach settles.
Finish albuterol.
Cough and spit.

Do pulmozyme via nebulizer.
Drink more coffee.
Go to the bathroom and hope I don't have diarrhea or constipation. (TMI, I know)
Take handle full of pills including prednisone, nexium, azithromycin, cetirizine hydrochloride, ADEK vitamins, vitamin A, Vitamin D, calcium, iron and stool softener(to offset the iron).

Take ultrase mt 18 to help digest fat that I am about to eat.
Eat something so I don't get an upset stomach from the pills.
Wait for my nurse to call to let me know when she will be here for PT.
Log in to computer and phone system to work.
Take ultrase mt 18.
Eat again.
Nurse arrives, checks vitals and does chest PT for 1 hour.
Cough and spit. Cough and spit.Cough and spit some more.
Take ultrase mt 18.
Eat again.
Put on oxygen.
Walk down basement stairs to treadmill.
Cough and rest.
Get on treadmill, walk, cough and spit(all for 15 minutes).
Sit and rest before walking back up stairs.
Hopefully take oxygen off.
Take ultrase mt 18.
Eat some more.
Cook dinner.
Take ultrase mt 18.
Take more pills.
Do albuterol via neb.
Do pulmozyme via neb.
Put on Vest and shake for 30 minutes.

Turn up TV because I can't hear it over the vest.
Take ultrase mt 18.
Go to bed.

So there you have it...a look at my typical day.

Monday, December 14, 2009

Thank you consultants

Yesterday, Tonya, my older sister put together a lovely fundraising show. She worked very hard to pull it all together in the short time she had. She opened her house for a holiday shopping extravaganza.

She asked several consultants to come and show their products. In return, they all donated a portion of their sales to my double lung transplant fund. It is not just the financial support that I appreciate. I am blessed that they would give their time to help out. I know how busy it is during this time of year. I also am thankful for all the kind words, thoughts and prayers that they offered me. None of the consultants knew me personally but many of their lives had been touch by someone living with cystic fibrosis.

We had representatives from Arbornne, Pampered Chef, Discovery Toys, Longaberger, Lia Sophia and Creative Memories at the actual show. Consultants from Tastefully Simple and Usborne Books sent over products to display and sell. In addition to these vendors, consultants from Mary Kay, Silpada and Scentsy offered a portion of their sales to my lung transplant fund.

I am so touched by the generosity of complete strangers. Thank you all for everything you have done to help me out.

A BIG Thank You to my family!

I don't always say thank you enough. So today is the day that I will blog to make sure I have said thanks.

Thank you to my husband, Brian who deals with the daily complications of my life with cystic fibrosis. During our time togther, he has seen major changes in my quality of life. I know that some days are harder than others but he never waivers when I need him.

Thank you to my family. My mom, dad and two sisters are always there for me. I appreciate all you do. Thank you for all the work you have done on fundraisers for my double lung transplant. Thank you for driving me to my appointments, carrying my bags, cooking me meals, cleaning my house, visiting me in the hospital, calling to check on me and just being there.

I know that now matter what happens in my life, my family will be there for me.

Tuesday, December 8, 2009

It's amazing what the internet can do!

The passing of a CF friend this weekend has made me think about how many people I have met over the internet that also have CF or loves someone with CF. It is amazing how strong the bond is with these people who I have never met face to face.

In 2005, I heard about a website that would help me connect with other people with cystic fibrosis. I figured this would be a good place to ask others questions and educate myself with the newest information in cystic fibrosis. I never thought that through this site I would make friends that I would never meet but cry when I hear of them passing. During the years, the location of where I met up with these friend have change. Now it might be, facebook, myspace and personal blogs.

Over the past years, I have heard of too many of my CF friends passing. This past year there has been way too many. Though it is hard to hear when one of my friends pass, I am still glad that I got to connect with them via the internet. Every day I log in to read the blogs of all my CF friends or their loved one. These blogs make me laugh, cry, smile and scream with anger. I am so glad that I have other Cfers and their loved ones that I can share the CF experience with. Though you don't know it, you all bring something unique into my own struggle with cystic fibrosis.

If you are reading this on facebook, please visit my blog at to read amazing stories of others living with cystic fibrosis in their lives.

Friday, December 4, 2009

First December Post

Oh December, how I hate thee. Yes, you heard it right, I hate December! Why you ask? It is simple, December completely wears me out. There is always so much to do. By January, I am ready to crawl into bed for a month and not be disturb maybe that is why bears hibernate.

Lets start out the month with how I am feeling and see if feel the same way at the end of the month. Well, I was able to spring out of bed at 4:50am to bring Brian to catch a ride to work. My lungs have a little flutter in the lower left lobe but that tells me that I have air flow which is something that is not always a guarantee. My weight is 111. I am not on any antibiotics though I should be on my maintenance of Bactrum. I am waiting to start that after I see Dr. Z, in case we may decide on a different health routine during my CF visit. I want to try to limit the amount of time I am on Bactrum because it really dehydrates me and makes me feel like crap. Hopefully, we will check my iron levels again next week. I am curious to see if all the iron supplements I have been taking is helping. My only health concern right now is my bowels. I can't find a happy medium. I either can't go or can't stop going. Plus I am very crampy and my bowel movement was an odd color today. I know TMI! So I guess you can say things look good health wise.

This month is very busy. It all starts today. This is what December looks like...
4th wedding
5th Christmas gathering (probably won't go)
7th work meeting
8th Dr. Appointment
10th niece's Christmas play
11th husband's work Christmas party
12th niece's dance recital and another Christmas gathering (if I can make it)
13th fundraiser
18th niece's play and my work Christmas gathering
19th having my family over for a Christmas celebration
24th Christmas eve, may travel (2 hours) to hometown to visit our grandmothers
25th Christmas
26th mom's house for a Christmas gathering (travel 2 hours)
27th brother in law's house for Brian's family gathering (travel 2 1/1 hours)
31st My birthday and New years eve.

Plus I need to decorate, get my shopping done, wrap gifts, work, get chest PT and get my butt on the treadmill. There is also another work and family gathering but I don't know the dates of those yet. So much to do and so little time to rest. I am sure I am forgetting other events but I am overwhelmed just thinking about all this. Calgon take me away!