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 http://cfsteph.blogspot.com/.

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.
Cough.
Finish albuterol.
Cough and spit.



Do pulmozyme via nebulizer.
Cough.
Drink more coffee.
Cough.
Go to the bathroom and hope I don't have diarrhea or constipation. (TMI, I know)
Cough.
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).



Cough.
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.
Cough.
Wait for my nurse to call to let me know when she will be here for PT.
Cough.
Log in to computer and phone system to work.
Cough.
Take ultrase mt 18.
Eat again.
Cough.
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.
Cough.
Hopefully take oxygen off.
Take ultrase mt 18.
Eat some more.
Cook dinner.
Take ultrase mt 18.
Eat.
Take more pills.
Rest.
Do albuterol via neb.
Cough.
Do pulmozyme via neb.
Cough.
Put on Vest and shake for 30 minutes.



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

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 cf2chat.com, 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 http://cfsteph.blogspot.com 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!

Friday, November 27, 2009

The Day After

Today is the day after we all gave thanks, surrounded ourselves with loved ones and filled our bellies with delightful food. So what does that mean? It means the hustle and bustle of the holiday season has begun. During this busy, time let's not forget everything that we were so thankful for yesterday.

I had a great Thanksgiving Day. Brian and I headed to my sister, Tonya's house. The food was great but the company greater. During the meal, we had a lot of great laughs. Nothing was rushed. Everyone just went with the flow. I think it was the most relaxing Thanksgiving Day that I have had in a long time. Of course, I couldn't help but laugh when the meal done the woman were in the kitchen cleaning and all the men were on the couch watching football. How typical!

For me, today the festivities continue. Brian and I have been invited to another Thanksgiving day celebration and then I plan to take ride to visit Kim and Diana before Diana heads back to Ohio.

I am so amazed how fast a weeks vacation flies by. In a few more days, I'll be back to the grind. Trying to get everything done in a day that needs to be done. I was really hoping to be rested before going back to work but I have not slept well the past few nights. So I guess I'll go chill out.

Thursday, November 19, 2009

Thankful #10

Today, I am thankful for all my amazing friends. I don't want to name any names because I know I will forget someone very important to me. I am truly blessed with a great circle of friends. The out pouring of love that I have received since I found out that I needed a double lung transplant has been incredible.

I have friends from all over. Friends from childhood, grade school, high school, college, my home community, my current community and my work place. I have also blessed with a great community of Internet friends that I have met from cystic fibrosis and transplant networking sites that I have belong to since 2005.

Each one of my friends bring something unique in to my life and I am glad that I am friends with each and everyone of you!

Here are a few fun pictures!




Wednesday, November 18, 2009

Thankful #9

Today, I am thankful for my wonderful sisters. They are not just my sisters but they are my best friends. I know if I need anything either Tonya or Melissa would do what ever they could to help me out.

Tonya is such a beautiful person inside and out. I know I can tell her anything and she is not going to judge me. I hope she feels the same way. I love that she is willing to take a day off from work to sit at a boring transplant appointment with me to make sure that I am telling the doctors everything they need to know.

Melissa makes me proud. She has come so far in her life given the challenges that she has had in front of her. She is always willing to go out of her way to help me out. I love that she is willing to bring my bags of groceries in to my house while it is pouring out and she does it with a smile. I also love that she will come by the hospital (which is out of her way) on her way to work and bring me drinkable coffee.

I know whatever I am faced with my sisters will always be right by my side to help me get through it. I love you both more than I could ever express.

Tuesday, November 17, 2009

Thankful #8

Today, I woke up not really thinking about what I was thankful for today but while I was watching the Today Show it hit me. Today, I am thankful for my mom and dad.

You are probably wondering why this hit me while watching the Today Show. Well, it was the story about the 5 year old missing girl in NC that was found dead and her mom is in jail for selling her for child slavery. As I was watching this report, I could feel my blood starting to boiling and then they announce that the mom is in protective custody in jail, not just to protect her from the other inmates but because she is also pregnant. Wow! I started shaking from anger.

Okay now back to why I am thankful for my parents.

Reason #1: They have never given me or my sisters anything thing but unconditional love.

Reason #2: They would give any one of their daughters the shirt off their backs if that was what we needed.

Reason #3: When we found out that I had Cystic fibrosis at age 12, they never treated me any differently than my sisters. They never held me back because of my CF. I think it only make them push me harder.

Reason #4 They are not only my parents but they are also my friends.

I could go on and on about why I am thankful for my mom and dad but I don't want to get too sappy. I have been blessed to have such great parents. After seeing so many reports on the TV about ungrateful and unloving parents, it makes me see how lucky I am to have the parents I have. I love you mom and dad!

Monday, November 16, 2009

Thankful #5, 6 & 7

I am not on the computer much on the weekend so I didn't have a chance to blog my #5 and #6 so today I will do those along with #7. Drumroll please...Today I am thankful for Tucker, Tess and Ruby. These are my adorable german short haired pointers. I love them for putting a smile on my face everyday. The each have their own unique personality. Tucker is goofy and fun. Tess is the serious hunter that loves to give kissses directly on the lips. Ruby wants all people to herself. She is an attention hog. So here are a few pictures of my #5, 6 and 7.


Tess

Tucker

Ruby and her pups

Ruby

Tucker

All three and Brian

Tess

Friday, November 13, 2009

Thankful #4

After reading http://runsickboyrun.blogspot.com today, it was easy to write about what I am Thankful for today. I am thankful for Mr. Brian E. Briggs AKA my husband. We recently celebrated out 10th wedding anniversary but from our first official date, I knew we where meant to be together.

We have been through so many things together and we never lost faith in our love. Anyone that is married or has been married knows it is not always a walk in the park. No matter what we have faced we have tackled it together. My favorite thing to hear is "Brian loves you so much." He wears his love for me on his sleeve which can make him very vulnerable at times. I wish I showed the rest of the world how much I love him as easy as he shows his love for me.

I remember clearly the first conversation we had about my cystic fibrosis. I brought up that I had CF and his replied "That doesn't change the way I feel about you. I like you for you." He was the first boyfriend that didn't run away. Five years later, we where happily married.

Thursday, November 12, 2009

Thankful #3

Today was an easy day to come up with something that I am thankful for. Good Health Days! Anyone with CF or a chronic disease can tell you how important these days are. It gives you hope that there are more good days to come.

Today, I woke up and I knew it was going to be a good health day. I was up at 5:30am and felt rested. That is a great feeling. I drank a cup of coffee. Did my albuterol and put my oxygen (3L) on to get on the treadmill. I went down stairs and did 7 minutes on the treadmill at 2.5. I felt great. I was not winded or exhausted. I actually felt energized.

So today, I am extremely thankful for good health days.

Wednesday, November 11, 2009

Lot on my mind today

I felt I needed to blog to get stuff off my chest. I am going to just post random things that are on my mind so I can stop thinking about them.

*Insurance!!!! Our insurance at work is going through some big changes. Right now I have no idea what these changes are. I am stressing out. I cannot be worried about my health insurance.

*PT! I just had a physical therapist come do an assessment on me. I cannot believe how things have changed physically. I walked on the treadmill for 5 minutes at 1.8 speed. To me, that is just pathetic! Our goal for this week is to repeat this 2 time a day every day and try to increase to 3 times a day.

*Iron! I am still very tired. I just want my iron levels to go up! This sucks.

*Vacation! I decided today to take the entire week of Thanksgiving off. I didn't take any time off during my IVs to rest so I am taking time off for Thanksgiving. I feel it is well deserved.

*Winter! I am dreading winter already. I hate the late of sun light. I hate all the colds and flues and germs. I hate the cold and snow. Can we just skip winter and go right to spring?

*Cabin Fever! I just realized I have not left my house since Halloween. How depressing is that?

Here are some good things:
*I got my H1N1 shot
*Diana is coming home the week of Thanksgiving
*I am done my IV antibiotics and Bactrum as of today
*It is nice out today
*My lungs feel better than before I started the IVs

Though my post sounds bleak, I am still looking at things positively. At least I have insurance. I am on the right track to get back in to physical shape. I got all my flu vaccines so in 2 weeks I can feel more comfortable leaving the house. Winter is only 4 months long. And the best part...in a week and 1/2 I will be on vacation.

Thankful #2

Today, I am thankful for our armed forces. I am thankful for all the men and women that put their lives on the line everyday to keep us safe. Enough said. Happy Veterans Day!

Tuesday, November 10, 2009

Thankful #1

I am going to follow the trend of the month and try to post everyday until Thanksgiving. My daily post will contain one thing that I am thankful for. These are not going to be in any order, so don't get your panties in a twist if you are not first.

Today, I am thankful for my home health nurse, Ann. She is so dedicated to her profession. She truly care about each and everyone of her patients. She often goes above and beyond her job description. She comes in my house every day with a smile on her face. She patiently sits and waits for me while I finish up whatever I am doing. She will check and make sure my dogs have food and water. She spends a few minutes every day giving each one of my dogs attention, which they absolutely love. Last winter, I have to leave for an appointment. She would not let me clean my car off. She went and removed all the snow off my car. She also won't let me get away with anything, health wise that is. If I have been really sluggish or running fevers on consecutive days, she puts a call into my CF nurse as soon as she gets to her car. She tells me all the time, I am not allowed to get sick on her watch. She comes everyday and pounds on my chest for an hour. She never complains that this is not part of her job. Trust me other home health nurses have. She pounds away for an hour while entertaining me with stories. So for these and many other reasons, today I am thankful for Ann!

Saturday, November 7, 2009

That time again-long post

I just realized I haven't posted in a while. I am such a bad blogger. I have no excuse.

Lots have happened since the last time I blogged.

  • Brian and I celebrated our 10 year anniversary. We went out for a nice dinner together. He bought me a dozen of red roses which are my favorite and was also the flower of our wedding. It was a great day.
  • I started running unusually high fevers like 103.2 high. The fevers continued for days so I called the Doctor. With the help of my port, I started home IVs the same day. My home health nurse came and accessed my port at 2:00pm and my home medical company had my IV meds here by 5:00pm. Got to love home health care!
  • When ever I go on IVs they run a bunch of blood test to see what is going on. Of course my white blood count and inflammation proteins were high. That is no surprise. My hemoglobin level were low. Levels should be over 12 and mine were 7.7. So more blood work ordered to check my iron. Iron levels should be 65-125 and mine....12! Not good. So I am on iron supplements 3 times a day to try to bring up my levels. If that doesn't work, I'll need to get some IV iron. I have not heard good things about that so trying my best to be good about taking my iron pills and eating high iron foods.
  • Monday, after a week of IVs and bactrum, I started running a fever again. This time 101.7. I was threatened to be hospitalized but said give me a day to see if it goes away. It did! 5 days no fever.
  • I have had horrible headaches for the past 2 weeks. A lot of things could be contributing to theses: IVs, low, iron, dehydration, low blood pressure, stress from coughing. Take your pick.
  • Today, I am missing a bridal shower. I really wanted to go! Unfortunately, my health did not agree. I just can't physically drive for 4 hours. I am very weak. I am sure my iron levels are not helping the cause. Plus, I need my nursing visit which couldn't be scheduled around the shower.
  • I got a call at 8:00am this morning from my sister to tell me that my Nana had a heart attack last night and is in ICU. What great news to wake up to. Of course, she is also 2 hours away from me. I am hoping they move her to CMMC, which is only an hour away from me so I could go see her. She is not coherent. She didn't even know who her daughter was. I want to call her but I don't know if I could handle it if she didn't know who I was.
  • I am scheduled to get my H1N1 vaccine on Tuesday. I haven't been able to have it because of my fevers and IVs. My home health nurse has been saving it for me. She is great. She also saved a regular flu shot for my husband. The best piece is she comes right to my house to give them to us and no waiting in line!
  • A CF friend that I met online several years ago passed this week. This hit me hard. She was just starting to be evaluated for a transplant. She went down hill to fast and passed. It is scary how fast CF can take a life.

I guess I didn't realize how much I had on my mind. No wonder I have had headaches. My IVs are scheduled to end on Monday. So this weekend, my plan is to take it easy so my body can rest and catch up. Please keep my Nana in your thought and prayers.

Tuesday, October 20, 2009

I love this commercial

Do your eyes sit wide
Does your nose turn to the side
Do your elbows kind of crinkle
Do your knees sort of wrinkle
Does your chest tend to freckle
Do you have a crooked smile
Do your eyes sit wide
Do your ears sort of wiggle
Does your hair make you giggle
Does your neck grow long
Do your hips sing a song
Do your ears hang low

Here is the link: http://www.youtube.com/watch?v=FowHP01j-Oo

Monday, October 12, 2009

Will today be the day?

I am trying to figure out what to do on my day off. I have a million things that I could do but nothing is appealing. My nurse will be here around 11:00 and I haven't felt 100% for the past few days. So I keep asking myself how can I turn this around? So what do I plan to do? Get on my treadmill. Yesterday, I did 3 sessions of chest PT and didn't feel like it was enough so today I will do my vest for 1 hour, have manual Chest PT for an hour and do my treadmill for 20 minutes. As soon as I am done posting this, I am going to go down and get my ipod so I can charge it. Maybe I will down load a few new songs to it. I think I am tired of the current songs on it. Any ideas to what I should download to to get me through 20 minutes of hell? Suggestion needed!

That is it for today!

Friday, October 9, 2009

Things that make you go hmmmm.

This will be very short:
Obama=noble prize?
NASA = millions of dollars to send a probe rocketing into the moon?
Redsox lose to Angles in game one?
I am sitting here scratching my head...enough said.

Edit: one more...
Maine state shut down days. For those who are not from Maine, these are days that 90% of the state workers must take off without pay because the state of Maine cannot budget money. Why I think it is questionable...these days are always added to a holiday weekend. How convenient?

Thursday, October 8, 2009

CF Appointment

Well, I had my CF appointment on Tuesday. Everything is stable. Lung functions are just about the same as last week and 2 months ago. My weight is great for me. I have been bouncing around 112-115 pound for the past 3-4 months. I think the extra weight has helped me stay healthy. I have been pretty active lately and not getting worn out. It is a very nice feeling. I think I have found a balance of what I can do and when. I think I am just about ready to get my butt on the treadmill. I know I keep saying that. My husband has been working on our basement so I am just now able to get to the treadmill.

I had an awesome time at the patriots game. We had prime parking because of my handicap parking pass. I could have thrown a rock and hit the stadium. We tailgated while listening to a live band. My brother in-law came over to our spot and couldn't believe it. He goes to every game. I told him it was the "Stephanie Special". Of course, our company was great. We always have a great time when we hang out with Bill and Kasey. I am so glad they invited us to join them.


Saturday night, we went to dinner with Andrea and Shawn. We went to the Texas Roadhouse. I was not expecting much in the terms of food but I was pleasantly surprised. I will go back just for ribs and margaritas. This from the girl that hardly drinks. It was great to spend sometime with Andrea and Shawn. My husband is a great entertainer and made us laugh all the way through dinner.

It felt so great to go do things that healthy people do and the best part...I didn't get sick!!!!!

I have been enjoying this fall weather. My niece, Kassie, is playing soccer and I love getting out and going to her games. I am so proud of the job she is doing for her first year of playing. She is willing to play any position...even goalie. She has a great team attitude. I love to see this. She has a game on Saturday so I plan to go watch her. It is great that all the game are within a 10 minute drive from my house so it is really easy for me to go. I love having my nieces so close.

Friday, October 2, 2009

For all you gummie lovers

I just found the best gummies ever...Sluggles Gummies by Wonka. I saw an ad on TV for them earlier this week and had to run right out to get them. I actually forgot I bought them last night or I would have broken in to them sooner. The are so soft and flavorful. Any gummie expert knows what I mean. You have got to go out and try them. They are addicting so beware. I opened the 8.5 oz bag a few minutes ago and they are almost gone. I am going to be so sad when they are gone. Brian laughed at me when he took them out of the bag...he knew I would run right out and get some.


Wednesday, September 30, 2009

Weekly update

Not too much going on here. I just finished my monthly maintenance antibiotic. So as of now, I am antibiotic free accept for the azithromycin that I take 3 times a week. I am starting to get the low grade fevers in the morning and I have a flutter in my left lung that is making me cough. I am giving myself until Tuesday to make a decision about IVs. I go to see my CF doc that day.

This weekend I am suppose to go to the Patriots game with some friends. Unfortunately, they are calling for rain. They are reporting a 30% chance of rain and say "few showers". Do I want to risk sitting in the rain for 4 hours and get soaked? But then I think, this is probably a once in a life time opportunity for me. I really want to go. What do you think?

Tomorrow, I go to a recognition lunch at the College. I have worked there for 10 years. Since I work from home 98% of the time, I am excited to see all my co-workers. I am a little gun shy about going to campus with all the Flues going around but I will just use a lot of purel, keep a mask with me, and keep a 3 foot rule with anyone that is not feeling well. Good news is I already got my flu shot. I just need the H1N1 shot. Hopefully that will be available soon.

Saturday, I plan to go to dinner with my friends Andrea and Shawn. Sunday, I am hoping to go to the game. I think it is worth the risk. What's 30%? I will wear rain gear and bring a change of clothes for the ride home. It is suppose to be warm so at least I don't need to worry about the temperature.

Well, I better get back to work.

Wednesday, September 23, 2009

Don't let yesterday use up too much of today.

I had an interesting talk with one of my close friends last night. It was about the past. She brought up some events that happened in the past and wondered if she would of done things differently. I reminded her of this quote "Don't let yesterday use up too much of today" that I had posted on facebook a few days earlier. After I hung up, I realized how we both interpreted the same events in the past in 2 different ways. Dear friend from this conversation, if you read this call me and I'll tell you what I mean.

I have to remind myself of this quote often. My entire life, I made 110% effort in my health and now everyday I am reminded that my lungs are crap. I think we can always look back and regret some decisions that we made but we can't change it so why waste time being upset about them.

What I have done in the past when I have a regret is ask myself "how can I change my life now to make the situation better." For example, in high school this same friend and I grew apart. Though we were always in each others life the amount of time we spent talking and seeing each other diminished. We both went to different colleges, made new friends and I moved to a different town. I felt really bad about where this relationship went. We were not just best friends, I considered her my third sister. She had always loved me even when I spit on her pillow. So a few years ago, I realized I needed that relationship back. She was one of the first people I opened up to about my feelings of needing a transplant. Yes, we don't see each other nearly as often I would like but we talk several times a day either by phone or instant messaging. I realized that maybe I didn't put enough effort into our relationship back in high school and college so I am trying to make up for. Though, we both have our quirks, we have both accepted each other for who we are.

The interesting thing in a friendship is what one person thinks is a fault, the other may find it an asset.

So the moral of this blog is...I couldn't change the past but I hope I learned from it so I can make a better future.

So what regret are you going to learn from today?

Wednesday, September 16, 2009

Not much going on

Life has been pretty uneventful. I guess that can be a good thing. Health wise I feel good. I start my maintenance antibiotic tonight. Yes, the dreaded Bactrim. So I get 2 week of hellish side effects. Things have been very stable. No major fevers, coughing spells or episodes of being out of breath. I haven't really needed to use my oxygen. I have been using it only when I have been walking for exercise. The stuff I am coughing up looks pretty good for a CFer.

I have been keeping busy by going to my niece's soccer games. I love soccer. It is so much fun to watch Kassie. Every game she is getting a little bit better. She is 10 and this is her first year playing. Watching her makes me miss my healthy lungs. I want to be out there on the field with her. I have been doing different soccer drills with her with my oxygen on. I think I am going to do a 2 on 2 game tomorrow with her. That should be interesting.

Last weekend was filled with family. My mom came down and spent the night Friday. On Saturday, I went to Kassie's game, then of to my nephew Trey's birthday party and to end the night we met my Brother in law, Troy and his family for dinner. Sunday, I took the day to relax.

This weekend will be more of the same. Kassie's game and then I am meeting my cousin, Angela for lunch. I can't wait. I only saw her briefly back in January at one of my benefits. We have been trying to get together since.

Yesterday, I went to have a filling done that I needed fixed before my transplant. I was so nervous. Once it was done, I couldn't figure out why I had myself so worked up. It was nothing. So I made an appointment for a crown that I also need. I have been putting it off for years. The tooth is holding together but with my luck it will crumble during my transplant.

Like I said nothing too exciting here but figured I would just update everyone that all is well with me.

Tuesday, September 1, 2009

Thankful Tuesday

While I was taking a bath this morning, I started thinking about how thankful I was for the Internet. It has brought me so many CF friends, it has helped me keep in contact with friends and family and it has reconnected me to a lot of friends that I lost touch with.

I am thankful that the sun is shining today and there is no humidity. It is a good breathing day.

I am thankful for baths. I just love taking a bath.

I am thankful for my dogs as they always find a way everyday to make me laugh or smile.

I am thankful for a great husband. I didn't feel like cooking last night because I had a low-grade fever so he made me a chicken sandwich. Unfortunately, I woke up in the middle of the might because the sandwich did not agree with me. When I got back in bed, he asked me if I was okay. that made my night. I know it was the chicken sandwich because the same thing happened to me Saturday night after eating one.

I am thankful for the Lifetime channel. It always gives me that good cry when I need it or it helps me pass the time when I am home alone with nothing to do.

I am thankful for candy...Enough said.

I am thankful for coffee or any other caffeinated beverage.

I like to do these types of posts every now and then so we can all remind ourselves of the goods things in life.

Swine Flu

Here is some information I stole from Love to Breathe blog. (I hope you don't mind) I thought it was a very informative article. Many CFers and transplant recipients need to be cautious of the swine flu because it can effect them differently than the normally population. So please cover you mouth when you cough and wash your hands.

By MIKE STOBBE, AP Medical Writer

Since it first emerged in April, the global swine flu epidemic has sickened more than 1 million Americans and killed about 500. It's also spread around the world, infecting tens of thousands and killing nearly 2,000.


This summer, the virus has been surprisingly tenacious in the U.S., refusing to fade away as flu viruses usually do. And health officials predict a surge of cases this fall, perhaps very soon as schools reopen.


A White House report from an expert panel suggests that from 30 percent to half the population could catch swine flu during the course of this pandemic and that from 30,000 to 90,000 could die.


So how worried should you be and how do you prepare? The Associated Press has tried to boil down the mass of information into 10 things you should know to be flu-savvy.

  1. No cause for panic.
    So far, swine flu isn't much more threatening than regular seasonal flu.
    During the few months of this new flu's existence, hospitalizations and deaths from it seem to be lower than the average seen for seasonal flu, and the virus hasn't dramatically mutated. That's what health officials have observed in the Southern Hemisphere where flu season is now winding down.
    Still, more people are susceptible to swine flu and U.S. health officials are worried because it hung in so firmly here during the summer — a time of year the flu usually goes away.
  2. Virus tougher on some.
    Swine flu is more of a threat to certain groups — children under 2, pregnant women, people with health problems like asthma, diabetes and heart disease. Teens and young adults are also more vulnerable to swine flu.
    Ordinary, seasonal flu hits older people the hardest, but not swine flu. Scientists think older people may have some immunity from exposure years earlier to viruses similar to swine flu.
  3. Wash your hands often and long.
    Like seasonal flu, swine flu spreads through the coughs and sneezes of people who are sick. Emphasize to children that they should wash with soap and water long enough to finish singing the alphabet song, "Now I know my ABC's..." Also use alcohol-based hand sanitizers.
  4. Get the kids vaccinated.
    These groups should be first in line for swine flu shots, especially if vaccine supplies are limited — people 6 months to 24 years old, pregnant women, health care workers.
    Also a priority: Parents and caregivers of infants, people with those high-risk medical conditions previously noted.
  5. Get your shots early.
    Millions of swine flu shots should be available by October. If you are in one of the priority groups, try to get your shot as early as possible.
    Check with your doctor or local or state health department about where to do this. Many children should be able to get vaccinated at school. Permission forms will be sent home in advance.
  6. Immunity takes awhile.
    Even those first in line for shots won't have immunity until around Thanksgiving.
    That's because it's likely to take two shots, given three weeks apart, to provide protection. And it takes a week or two after the last shot for the vaccine to take full effect.
    The regular seasonal flu shot should be widely available in September. People over 50 are urged to be among the first to get that shot.
  7. Vaccines are being tested.
    Health officials presume the swine flu vaccine is safe and effective, but they're testing it to make sure.
    The federal government has begun studies in eight cities across the country to assess its effectiveness and figure out the best dose. Vaccine makers are doing their own tests as well.
  8. Help! Surrounded by swine flu.
    If an outbreak of swine flu hits your area before you're vaccinated, be extra cautious.
    Stay away from public gathering places like malls, sports events and churches. Try to keep your distance from people in general. Keep washing those hands and keep your hands away from your eyes, nose and mouth.
  9. What if you get sick?
    If you have other health problems or are pregnant and develop flu-like symptoms, call your doctor right away. You may be prescribed Tamiflu or Relenza. These drugs can reduce the severity of swine flu if taken right after symptoms start.
    If you develop breathing problems (rapid breathing for kids), pain in your chest, constant vomiting or a fever that keeps rising, go to an emergency room.
    Most people, though, should just stay home and rest. Cough into your elbow or shoulder. Stay home for at least 24 hours after your fever breaks. Fluids and pain relievers like Tylenol can help with achenes and fever. Always check with a doctor before giving children any medicines. Adult cold and flu remedies are not for them.
  10. No swine flu from barbecue.
    You can't catch swine flu from pork — or poultry either (even though it recently turned up in turkeys in Chile). Swine flu is not spread by handling meat, whether it's raw or cooked.
    Source: U.S. Centers for Disease Control and Prevention, New York City Department of Health and Mental Hygiene.
    ___
    On the Net:
    CDC swine flu basics: http://www.cdc.gov/H1N1flu/qa.htm

Friday, August 28, 2009

Bactrim

All I can say is I hate bactrim. It makes me feel like crap the entire time I am on it. First it starts with the itching. That last like 2-3 days. Then I get very fatigued. Next hot flashes and headaches. I am blessed with 2 weeks of this. One week down, one to go. It is going to get the best of me. I am very irritable right now so don't mess with me.

I have been watching my nieces this week and they probably think I am such a bitch. I have not let them get away with anything. On top of all the side effects from the Bactrim, I am also not sleeping well. I need 8-10 hours of sleep or I am a bear.

This weekend will be a weekend of rest. Brian is going to camp to do some cement work. Hopefully, it won't pour like they are saying it is going to.

Not too much going on here. I am still waiting for new lungs and trying to stay healthy. The air is much better then it has been. I can actually breathe and not need to run my A/C. I love fall weather in Maine.

Friday, August 21, 2009

What the???

Well, I went to my CF appointment. Shouldn't I be getting sicker if I need a transplant? My lung functions were good for me. Normally as I do PFTs they get worse. Not today. The more I did the better they got. My FVC =62% and FEV1=42%. I continue to boggle my CF docs mind.

So of course I asked, "Should I still be active on the transplant list." His reply "Yes." So then I asked "What if i got my FEV1s into the high 40s?" He said "At that point I might be comfortable letting you go inactive."

Dr. Z made a good comment to me. He said that he has a lot of patients that have worse lung functions then me (that he hasn't even considered for a transplant) but I have scarring in a unique area which worries him. He does not want me to get pneumonia in my lower left lobe because it could be very bad. Plus, I need oxygen with exertion which plays a role of keeping me active on the transplant list.

So where do I go from here? I guess I can work my butt of trying to raise my numbers more or I can do what I have been doing and just wait around for a call for lungs. Oh yeah, he also made another interesting comment. He said "I doubt the call will come anytime soon." I am so confused.

Anyone that knows me knows that I am not a quitter and will work my butt off to see if I can put off the transplant. I also have to put a lot of faith in God that the call for lungs will come when it is meant to be.

I better get back to work.

Thursday, August 20, 2009

Weekly update

Not much to update on. I had a great weekend with my family. Friday, I went to Funtown/Splashtown with my mom, my sister and her 2 girls. We had a blast. I went on all the rides. I didn't even need my oxygen until we were walking back to the car. It was 9pm and the humidity was increasing. All the walking and rides, really shook crap up in my lungs. I have been coughing so much I have laryngitis.

Saturday was the perfect beach day so I went to Old Orchard Beach with the same crew. I wish I could spend every day at the beach. It was another awesome day. In the afternoon, we took the girls school shopping. The stores all had A/C and there were no crowds.

Sunday another great day. Everyone but Brian went to my other sister's house. Tonya has a beautiful pool. So we all hung out by the poolside for the day. Brian was up at camp doing some more renovations. I think he plans on going up this weekend as well.

I spent most of this week resting and working. I started my 2 week course of Bactrum. I am on it for 2 weeks and then off it for 2 weeks. I hate it. It makes me itch for the first few days and I can't go in the sun. I don't get a rash or hives but some places itch so bad it burns.

I have a doctor's appointment tomorrow. I know I am at my baseline. I don't expect to learn anything I don't already know. I am going to see if Dr Z can think of anything new we can try to mix up my treatments. I need change. He might say what we are doing is working so let's keep it that way. I still think we are missing something big.

Well, that is it for now. I'll let you know if anything exciting happens at my doctor's appointment.

Wednesday, August 12, 2009

That time again

It is time to blog again. I am inspired by Ronnie at http://runsickboyrun.blogspot.com/. He does such a great job blogging everyday. My life just is not that exciting to blog every day.

I had a great day on Saturday. I went to a family reunion and saw a lot of family I haven't seen in a while. After that I went to my niece's, Kassie's, softball family get together. She tried to kill me. She asked me ever so nicely to play in the softball game. At first, I said no way but they needed another player so I went for it. Keep in mind I have never played softball in my life and I can run without my oxygen. First time up, I hit the ball and ran to 1st base. Next batter hit the ball, I ran to 2nd. Next batter hit the ball, I ran to 3rd. Next batter hit, I ran home. Huffing and puffing, I has my sister go get my oxygen. Where have my lungs gone?

I had a long post and it got deleted before I could post it. Thing like that really tick me off.

The week I am watching my nieces and working. Last night my niece, Rheana spent the night. We had a her favorite pasta salad for dinner. Then I let her have an ice cream sundae and a s'more. I love spoiling my nieces and nephews. We also had a fire in the chimenea. It was a nice evening.

Tomorrow, I am hoping to see my oldest friend, Andrea. We have been friends since we were 3 1/2. I haven't seen her in a while and miss her.

Friday it is Funtown with my nieces. Funtown is an amusement park that I try to bring my nieces to every year. Soon I'll be able to bring my nephews. Does any one have any experience with amusement parks and riding on the rides with oxygen? I need the oxygen to keep up with the kiddos but I still want to go on he rides. Advice please!!!!

Health wise, I am feeling pretty good. One week off IVs and no major fevers. Fingers crossed I can last the summer without needing IVs again.

Gotta go!

Thursday, August 6, 2009

My Evil Head

Here is a picture of my port not accessed. It is still bruised from being placed. You can also see the 2 incisions that were made when they put it in place. You can also see where the needle was inserted. And stop laughing at my tan line!





I promise that will be the last picture of my bare chest that I will post. The good news is you cannot see the port when I wearing clothing and some of my bathing suites even cover it.

Oh and one correction, the evil head is for Mike's Hard Ice Tea not Lemon Aid.

I hope you all had a good laugh today. Keep smiling.

Puppy Pictures

I was just looking at some old pictures and found these of Tucker when he was just a puppy. I think he was the cutest puppy ever. Of course, I am a little bias.
Now don't you think he was adorable?
I had planned on posting some pictures of my port when it is not accessed but my the memory on my camera phone is full and I can't find my digital camera any where. Once I find it then i will post some. Brian and I call it my "Mike's Hard Lemon aid evil second head". Does anyone remember that commercial? Here is the link to it: http://www.youtube.com/watch?v=wWdQnp56cK4. Hey if you can't laugh at yourself...who can you laugh at. I'll post some pictures later.

Wednesday, August 5, 2009

Time to blog again

I haven't had that much to write about so I haven't been very good about posting. Today was the last day of my IVs. I get my needle pulled when my nurse get here. Yeah.

It is very humid in Maine today. I went outside for about an hour but just sat at my patio set on my deck.

This past weekend I went to my sister's and floated around her pool. Since my port is accessed, I can't actually go swimming. Hopefully once the needle is pulled my fevers will stay a way for a while so I can actually get some summer time activities in.

I am hoping that we will have a few nice days next week. I would like to get to Old Orchard Beach and take my nieces to Funtown with my sister. I have my nieces next week from 7am to 1pm while my sister works. I normally watch them during the summer but my sister was out of work all summer because she broke her ankle and shredded ligaments. Next week is her first week back to work.

I think I am going to go inactive on the transplant list during Labor Day weekend so I can go to camp with Brian. I took Thursday through Friday off from work.

I am starting to get the feeling I wil be on the list for a while. It is just a hunch.

I need to get my ass back on the treadmill. First I need my husband to move stuff in the basement so I can get to it. I need to move stuff around in my lungs.

Well, my nurse just pulled in. Time for Chest PT and have my needle pulled. YEAH!

Friday, July 24, 2009

My port

I know a lot of people are unfamiliar with ports so I will share what I know. Here is a great link showing a picture of a port and placement: http://www.diamondblackfananemia.com/links/mediportinfo2.pdf.


My port was placed on my left chest a few inches below my collar bone. This is a picture with the port accessed.

I don't know what it will look like when it is not accessed. The port will stay accessed the entire time I am on IVs. The needle gets changed every 7 days. I will have my home health nurse do that because I don't think I can pick myself with a needle. The reason this is better than a PICC is I can have my home health nurse access it when I need it and I don't need to go in the hospital just to start IVs.
So far I have done everything that I normally do. I even did my vest and had no problems with it.
In other news, I am going home today. I have a IV due at 2pm and I am going to get chest PT. After that, I can spring this joint. I will be on home IVs for another week and a half.
I cannot wait to be at home with my puppies and sleep in my own bed.

Thursday, July 23, 2009

Another day

Well, for those who don't know I am in the hospital. I was running pretty high fevers for a few days and figured it was time for another PICC and IV antibiotics.

After on failed bedside PICC failure and a trying IR PICC placement I decided it was time for a port. So today I went to the OR and got a port. The surgery was pretty minor. This afternon, the PICC I had placed yesterday came out. I hope I will love this port.

I am not sure when I will be out. I hate to pester the doctor though know I can do everything I am doing in here at home. I can't wait to sleep in my own bed.

My CF doctor came in today and showed me my last 3 x-rays and explained what we were looking at. Wow, my left lung is crap! He is going to give me a cd of the x-rays. Once I get it I will try to post the pitures and explain what is going on.

Well, I am going to go relax. I hope you all have a great night.

Sunday, July 19, 2009

Normal...

Well not really. I tried to have a normally date with my husband last night. We went out for dinner and then stayed and listened to the band for a couple of hours. Sounds like a normal date night right?

Well, first he had to drop me off at the door because I didn't want to lug my oxygen around and I would get short of breath walking from the car to the restaurant. In the past going out to a band would lead to letting loose and dancing. Not last night. I did enjoy 2 woodchuck ciders. Woo who call me a lush. The band was so much fun and they played a ton of danceable music. Of course, I got to be a "wall dancer". You know those girls that don't dare to get up on the dance floor so they stay against the wall moving their heads and feet. To end the night I had to keep looking at the clock and do the math of how long it will take to get home, do my meds, my vest and get to bed. We decided to leave around 11:15pm...yeah I know night owls, not. That got us home about midnight and I was in bed about 1am. Of course, Brian had to go get the car and pick me up at the door of the bar. Lots of fun.

I am still blessed that I was able to get out of the house for a few hours and hangout with my husband and my friend. I am blessed that I had the choice to wear my oxygen and it wasn't a necessity. I am blessed to have a great husband that will drop me off and pick me up at the door. Though I don't get it why he just wouldn't part in the handicap spot next to the door that was empty. I have a handicap plate. He kept saying what is someone else needs it more than us. I can just drop you off and go park the car. What ever, I didn't need to walk so why do I really care.

Today, I am waiting to hear from my nurse so I can figure out if we might venture to the beach for a few hours. Of course that is pending that my husband is willing to go with me.

Well, that is my thoughts for the day.

Friday, July 10, 2009

One more thing!

I think everyone needs something that will make them smile at least once during the day.


So here is a picture of my dog, Tucker in one of our many boats.



Don't tell me that didn't make you smile.

One of those days

I hope the day gets better. I got up at 5am to bring Brian to catch a ride to work because his jeep has been in the shop all week. He was pissy from the minute I rolled out of bed. I could say anything without him taking it the wrong way. I think he needed to got back to bed.

He is going up to camp to work on it this weekend. He will leave right after work. Of course, he needs to pick up his jeep first so I hope it is ready. I can just imagine what this bill is going to be. So as he was getting in to his ride's car, I asked him do you have your cell phone. Nope! Luckily, I had mine in my purse. So I gave him my phone and sent him on his way. I need to make sure the Brigham & Women's know to call his cell phone to reach me this weekend. What a mess.

I came home and did some house cleaning which takes me three times longer than it use to because I have to stop every few minutes to cough and catch my breath. Who would of ever thought that I would need to take a break after sweeping the floor. Good news, I didn't need my oxygen.

It is suppose to be a beautiful day in Maine today so I figured I would take out the riding lawn mower so I can mower the lawn later. I moved everything out of the way. Got the mower out of the garage. Got of it to put gas in it. I went to restart it and nothing. What the ?!@$@! I was just running. I gave it a few more minutes and tried it again nothing. Can I get a break. Brian will get all ticked off because it will be in the middle of the driveway when he come home on Sunday because I can't start it to put it away and there is not way I can push it back into the garage. What ever!

My mom is going to come down and spend the night tonight. Tomorrow, she needs to watch my nephews so I am going to go with her and hand out by my sister's pool. Hopefully it will be nice and sunny and the rain will hold off until late evening. I am in desperate need of some vitamin D.

Health wise I am feeling pretty good. Only one day of fevers this week. I'll take that every week. I have been sleeping really good. I have a CF appointment at the end of this month. I would like to try to gain 2 or 3 pounds by then. I am at 109 which is where I have been since my last flare up and IVs. Good news, I am not loosing. I need to get my butt back on the treadmill or at least start walking outside. Maybe I'll go for a few walks with my mom this weekend.

Here is to a nice sunny weekend!

Monday, July 6, 2009

Today is the day

Yes, you read it right. Today is the day I am going to go active on the lung transplant list. That means the call can come anytime. Of course, today I feel pretty good but I know that this is not the norm these days.

I had a nice but rainy vacation. I felt pretty good most of the time except for some GI issues. I think I had caught a bug because Brian has it now. My lungs were pretty good most of the vacation.

I need ideas on how to live a normal live while waiting for that call for lungs. My center wants me no further than 4 hours away from the hospital. I currently live 2 1/2 hours from the there.

I guess that is all I have to say today. I think I am still in vacation mode.

Friday, June 26, 2009

Opps

I think I tried to kill what I have left of my lungs. Yesterday, I wanted to get rid of some mildew that was on my bathroom blind. I have this stuff that works awesome. It is called mold away by mold armor. It just melts way mold and mildew.

Well, I went and sprayed the blind down around 10:30 am. I shut the door and kept the vent on. Around 4:00pm, I figured I better shower before Brian got home. When I went in the fumes were still lingering so I opened the bathroom window and got in to the shower. I wasn't in the shower more than a minute when my lungs started closing up on me. I quickly washed my hair, wrapped myself in a towel and headed to my bedroom. By this time I was really struggling and started coughing and then throwing up and then the headache came. Finally, I stopped coughing and throwing up. Of course not until after I lost everything I ate for lunch. I made my way to the couch, where I laid until 7:30pm until I felt i could move without throwing up or my head exploding.

This morning my lungs are tight and I coughed up some streaks of blood. I am sure this is because of yesterday. I guess I'll never do that again.

On another note, we are off to camp this weekend. We have no big construction plans for this weekend. We need to do some serious cleaning. Yeah, you guessed it, I won't be using any mold away. The weather looks crappy again. Yuck! Where is our nice sunny weather?

Update on transplant: I go for my blood gas on Monday because I was sick with 102.4 fever on Wednesday and had to cancel my appointment. This is the last test I need before I can become active. Once I get this done, I will not need any other test for the next 6 months. Every six months, they check my blood gas, 6 minute walk, kidney functions and PFTs so they can update my score with UNOS. I am still taking it day by day on the activation but I can tell you I will be activated sooner rather than later.

Well, that's it for this Friday.

Monday, June 22, 2009

My weekend

As of Friday, I planned to be activated on the transplant list ASAP but as the weekend went on my activities where less affected by my health. The air in Maine has been very damp and heavy. This makes it hard for me to breath. I do okay resting but once I get up and start doing stuff I start coughing and my lungs tighten up. I was able to go for a short walk on Sunday morning without my oxygen. I was trying to catch some one's loose dog so it wasn't a planned walk without oxygen. I coughed up a ton but rebounded pretty quick. The good news is Brian and I got the dog and was able to return it to it's owners.

I know deep down I need to be activated. My plan is to take things day by day. I really want to get through this summer. This may sound selfish but once I am activated, I cannot be more than a 4 hour drive to Boston. This means no camp. I want to try to go up as much as possible this summer. Not only because I enjoy it up there but the more we go to camp the more that gets done there. I want the majority of the work that needs to be done be done so when I get my transplant we can just enjoy the camp by hiking, fishing, canoeing, boating, swimming, snow mobiling, etc. These are things that I just don't have the energy to do on most days but have always enjoyed.

My husband and I had a nice time at camp. If you don't already know ,we are remodeling the entire camp. We basically ripped everything out and now we are putting it back together. We are also going to be adding 2 bedrooms and a porch onto it. This weekend we framed up a wall and laid the bathroom floor. Saturday, my husband took me for a ride in the woods. He loves to ride around on old logging roads and find ponds that he can fish. While doing this, he finds some nice scenic views. We tried to get to one of the views but the road was washed out. So he took me in to one of the ponds that he likes to fish. The weather wasn't the best so we didn't get to go out in the boat.

For Fathers day, we stopped at Brian's parents and had a nice dinner with his mom and dad. It had been months since we had been to his parents so we were due. My dad had to work so I didn't get to see him on Father's day. I made sure to call him and will see him next weekend. We see my parents a lot more than than Brian's parents.

Well that is about all that is going on in my life. I will write more sometime this week.

Friday, June 19, 2009

Welcome and Nice talk

First I want to welcome any new readers that have found me through Ronnie's blog. Thank you Ronnie for our nice exchange of words yesterday.

As many know, I am struggling with the idea of becoming activated on the transplant list. I have already been evaluated and accepted at Brigham and Women's Hospital in Boston. At my last appointment they really expressed that I should be activated. They stated my CF doctor is really concerned about me and has called several times.

Yesterday, my phone rang. It was my CF Doctor, Dr. Z. He had heard that I having a tough time making the decision to become active. I told him I needed more information. Here is a list of why he would like to see me listed:
1.I have a lot of scarring. In layman terms, there is no way to improve your numbers.
2. There are not treatments to add except IVs when I get sick. I already do what they would do for me in the hospital.
3. It takes me a long time to recover from a flare up. This past time I was on IVs for 5 weeks. Which has been the norm lately.
4. My weight. I loose it so easy and have a hard time gaining it back.
5. He thinks I spend too much time on my CF. This one I just don't understand because I always have. The only thing I have added is daily Chest PT from a home health nurse.
6. I am physically healthy now to handle a transplant and he doesn't want me to loose that window.

I am very glad Dr. Z called. We talked for a good 45 minutes. He really gave me some things to go on.

I don't have the traditional case where I need Oxygen 24/7, I only need it with exercise or exertion. I don't think my body is retaining CO2 but i may be wrong...none has discussed this with me. My FEV1 is higher then a lot of people that have a transplant. My biggest issue is when I get sick, I get really sick and this scares everyone except me. I have always kept a positive attitude and that I will fight until the end. I just look at an infection as a bump in the road. I guess that is where my attitude needs to change. I guess I need to think about that one bad infection and be scared of it. I just never have lived like that.

I have made a promise to myself that I will not allow myself to waste away. I watch my weight and calorie intake. I have also been very committed to exercising. I need to keep my muscle ton up so I have every chance for a great recovery from the transplant.

So where am I in this decision? I am giving one last effort to see if I can keep any infections away by being very active on the treadmill. I am going to make a daily diary of how I feel/how my current condition is hindering my quality of life. For example, yesterday the treadmill was hard. After a minute, I felt I was huffing and puffing. I only did the treadmill for 20 minutes. So this tells me, I have a low tolerance to damp heavy air which is what the air quality was yesterday. That kind of sucks since I live in Maine and it is very humid during the summer months.

Another example, if I wake up in the middle of the night to go pee and I lay in bed contemplating getting up to go. Why you ask? Because as soon as I get up, I cough and cough and cough. Sometimes this lasts for 10 minutes other times an hour. It is very hard to go back to sleep after a coughing fit.

Wow, this is a long post. I have so much more on my mind. My next post will be shorter I promise. I hope you all have a great day.

Tuesday, June 16, 2009

Thoughts

Sorry, I haven't blogged since my transplant appointment. I am still trying to gather my thoughts and make a decision on what I want to do.

Everyone seems to be pushing for me to be activated. I just don't know if I am 100% mentally ready. Next week I go see my CF doctor and I will have a long conversation with him on why I should be activated. If he sells me on it, I will go active. Either way I am going to get a blood gas done so that way Brigham and Women's have everything they need to make me active when I am ready. I have decided no one but me is going to make this decision. I am listening to every one's input but it is still my decision.

Mean while, I still want to prove everyone wrong. I have been pretty dedicated to the treadmill. Everyday it get easier and easier. My goal is to get on it 5 out of 7 days a week. My speed is getting to the point that I could be jogging. Maybe in a few weeks I will attempt to jog. I have been adding incline to get my leg in shape. My heart rate has been great. My oxygen is good as long as I remember to breath through my nose. I get singing to the Ipod and realize my oxygen is dipping. Ooppps.

The past 2 years, I have spent way too much time at home. I need to stop doing this. So yesterday, I created a list of everything I want to do this summer. This will get me out of the house more.

I also created a list of goals for my health. If I can meet these goals, I should be able to hold off on the transplant. I am also going to have my CF doctor help me create a list of things to watch for so I know when I need to be active on the transplant list.

I had my PICC pulled yesterday. Freedom at last. I had it in for almost 8 weeks. I used it for 5 of those weeks. My goal is to go the entire summer with out needing IV antibiotics again. They only way I have a chance of doing this is to stay active and keep on the treadmill. I can't give the mucus a chance to settle.

I better get back to work.

Wednesday, June 10, 2009

Treadmill and other stuff

I have been pretty consistent with the treadmill. Out of 15 days, I have only missed 2 days. Starting yesterday, I am doing the treadmill twice a day. In the morning for 10-15 minutes and in the evening for 20-30 minutes. I figured this gives me two different times of the day to cough up some junk. I do around 1.5 miles a day sometime more but never less. It is almost time for my second walk on the treadmill today.

Tomorrow,I go to Boston to be re-evaluated to see if I should be activated on the transplant list. I think they will make the decision based on my PFT but who knows this is all new to me.

Today was a good day because the Redsox beat the Yankees last night. They are 6-0 against the Yankees this year. Yeah!!!

I have a busy weekend ahead of me. I hope I don't wear myself out.

Well, that is about it. I'll write more after my appointment tomorrow.

Tuesday, June 2, 2009

Beautiful day

It is a perfect spring day in Maine. The weather is partly cloudy with temps in the 70s. Can't complain about that.

I am home waiting for my nurse for my chest PT.

This afternoon, I will get on the treadmill for 20-30 minutes. I would walk outside but the mosquitoes would carry me away.

I am pretty bored because I am not working. It is hard not to log on and do work. I thought the break would be good for my health. My IVs should be done on Thursday or Friday so I plan on going back to work on Monday.

My nurse is taking some blood today to see if my inflammation levels are any lower. If they are, I can have my PICC pulled and be done with IVs. I should know tomorrow.

I can still feel spots in my lungs that have junk attached but at this point Chest PT and the treadmill is the only thing that will work to get the junk out.

Well, that is it for today. I hope everyone has a beautiful day.

Saturday, May 30, 2009

Home

I got home yesterday afternoon. On my way home I and got some fresh fruit so I could make a fruit salad when I got home. It hit the spot.

As hard as it was to motivate myself, I got on the treadmill for 27 minutes yesterday. Of course today was even harder because it is the weekend and I am home alone. But I did it! Today, I did 31 minutes. I can already feel my muscles returning. After the treadmill today, my lungs felt great. I think I got some junk out of the left lung. Breathing is smooth and easy right now. I wish this feeling would last.

The one thing I need to focus on when I exercise daily is calorie intake. I loose weight very easily. So as I type this I am eating almond. Nuts are a great source of healthy calories.

Brian is up working on the camp so I am here alone for the weekend. I had to stay home for my Chest PT visits. Plus he is ripping apart the walls and I don't need to be breathing that in. I am thinking of going to my sister's for pasta. This will get me out of the house and I will not need to cook.

Tomorrow, i am debating going to my nephew's 2nd birthday party. I can ride with my sister so I won't need to drive. I hate driving. I just need to see if I can work my Chest PT around going.

Well, things are looking up. Let's hope it keeps getting better.

Wednesday, May 27, 2009

Good Test

Some times it take a test to let you know you are really feeling better. I just did a breathing test where they test the FEV1 (amount you blow out in first second) and the FEV (full capacity of lungs). I did the best I have in several years. Wow! My highest FEV1 was 44% OR 1.26 LITERS. The FEV was about the same as always. Every test I did, my numbers got better. Normally, my numbers get worse as I go.

Last week, my FEV1s was 35% (1st try), 31%(2nd try) and 32%(3rd try).
Today, In order of tries, 41%, 40%, 41%, 44%, 44%. Yeah!

What does this mean? It means, I had a bunch of junk and inflammation in my lungs and what ever we have been doing in the past week...is working.

I bet I will be out of here tomorrow.

Tuesday, May 26, 2009

Life in lock down

A lot of people ask what they are doing for me while I am here. The first day or two, they take a bunch of tests to see what is causing the fevers and try to start me on the right IV antibiotics based on my last sputum culture. Then they wait to see if a new culture shows anything. While we wait, I have Chest PT twice a day until I do my 6 minute walk test. This is the test they use to get the perimeters for me to use the treadmill. It also measures how far I can walk in 6 minutes. I went 1754 feet. I have done better but this is still really good with someone with my crappy lungs.

Today, I am still waiting for cultures to come back. I also get to go on the treadmill. This should make me cough up a bunch more crap. I haven't tried to walk the halls today to see how I do. I use 3 liters of oxygen when I exercise. Which helps keep my heart rate at normal levels. I get really short of breath when I cough because it causes inflammation.

Everyone seems to think my lungs sound a little better. My Doctor will be in tonight and will let me know what he thinks. My plan is to escape before the weekend and then do the rest of my treatment at home.

Well, that is it for now.

Sunday, May 24, 2009

Bored to tears

As most know, I am stuck in the hospital. I tried the home IVs for 3 weeks and apparently they didn't work. I was very short of breath and kept having fevers. I have been here for 4 nights so far. Does anyone else hate the hospital as much as I do?

My life is very uneventful right now which is the reason I haven't been blogging. I need to find something to kick start things in my life. Health wise summer is always my worst time of year. Yeah, I know that makes no sense.

Our camp is one big construction site so I have a hard time getting excited about going there. I was suppose to go there this weekend.

I am starting to feel a little bit better. I am not short of breath sitting here. The real test will be my 6 minute walk test tomorrow. I need to get off my duff and walk around the hospital or something. This hospital bed is becoming a permanent fixture. That can't be good.

Well, hopefully I will keep feeling better everyday and be able to go home soon. It would be nice to stay healthy for a while and be able to enjoy some of the summer.

Monday, March 16, 2009

Spring?

It was such a beautiful weekend. I wish I would of taken pictures to post because most people would of laughed it they saw what Brian and I did yesterday. It was around 50 out and we figured we should soak up some vitamin D so we sat in the driveway (the only place in our yard without snow) for 4 hours. We had a couple friends stop by to join us for a few hours. The guys hung out and drank some beer while I pigged out on candy! The sun felt so great! I made the mistake of staying in the sun too long and got rosy red cheeks. Oh the joys of sun sensitive medication.

The weather looks nice for the entire week so maybe I will get off my butt and go for a walk. Hopefully, we have seen the last snow storm of the winter! Now we get to look forward to mud season. Can any one tell me why I still live in Maine?

Funny thought of the week:
As I write this I am listening to the news. What do I hear? A wild turkey knocks a man of his motorcycle. Can you imagine?

Wednesday, March 11, 2009

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.