Happy Birthday to Me!

Today I turn 33! Most people dread turning another year older but for me it is a sense of accomplishment. It means I am continuing to beat the odds. I remember being 12 and being told that most people with CF do not make it to 18. So for me turning another year older is a blessing. I try to cherish everyday I am given.

How am I celebrating, you ask. At home with Brian, my dogs and movies. Hopefully, Brian will pick me up a cake on his way home from work. I had wanted to go do something special to ring in the New Year but I have been pushing my luck with my health. I figured the healthier decision was to stay home and rent movies. I am sure Brian would like to do more than watch movies like we do every weekend but he is a good sport and would not celebrate New Years without me. I love that man.

I have so much to look forward to in 2009. I will continue to feel blessed by everyday that is given to me. I will cherish everyday that I am not in the hospital or on IV antibiotics. I will be grateful for everyday that Brian and I both have jobs. I will never take any day for granted and I hope no one else does either.

I hope everyone finds a way to ring in the New Year with friends or family. It doesn't matter if you are at a big celebration or at home as long as you are sharing the night with people you love.

I hope everyone has a safe, happy and most importantly healthy 2009!

Christmas Eve

It does not feel like Christmas Eve. I have no plans for Christmas. I haven't done any shopping for my husband and I don't even have a Christmas tree.

I celebrated Christmas with my family this past weekend. I had two gatherings and they were both really nice. The only thing that would of made last weekend better is if we didn't have a blizzard that we had to travel in.

This weekend, I will go spend time with my Dad's family. We do a big family gathering with his mom, his brothers, his sisters and their families. So I will see many of my cousins, their spouses and children. I think my Nana will have 5 great grandchildren at this gathering. It will be nice to see everyone.

Next weekend, My husband and I will spend time with his mom, dad, his brother and his brother's family. We will go to his brother's house and do Christmas.

This year Christmas has been spread out over many weekends so tomorrow will feel like just another day. I think Brian and I might take a trip to LL Bean and do some shopping. Next year, I'll plan something on Christmas day so it will feel like Christmas.

I hope you all have a very Merry Christmas!

CF Appointment

Yesterday was my CF appointment. I go to the see my CF Doctor ever 6-12 weeks depending on how my previous Doctor's appointment went. Dr. Z was very happy with my health.

My FEV1, which is the amount of air you blow out in a second, was 1.22 liters. That is 40% of what the predicated amount that I should blow for someone my age, weight and height. For most people they would freak out because 40% is quite low but I am happy with that number. My last visit my FEV1 was 1.1 liters which was 36% of the predicted amount. So I actually increased. Yeah!

They also measure the capacity of my lungs. I don't remember what it was in liters but it was 61% of the predicated amount. That is also up.

My weight was the same. I was afraid I had lost weight but on their scale I weight 110. They would like me to be 120-128 but I doubt that will ever happen. My goal is 115 so I bought some whole milk and and going to drink 3 glasses a day.

Dr. Z was glad to see I was doing well. He wasn't sure he agreed with not activating me on the transplant list until yesterday. He knew I would prove him wrong. I am good at that. He feels if I can keep my numbers where they are I can stay inactive. He is also glad that everything is done for the transplant just in case I don't stay where I am at. CF is so unpredictable that you never know when that rapid decline is going to come.

I don't need to go back to Dr. Z for 3 months unless I get sick. I got to Brigham's in January and they will check to see if I need to be activated.

I will continue to do what I have been doing for the past 3 weeks to see if I can maintain my health. Wish me luck. The longer I can live with these lungs, the more of a chance that there will be a scientific breakthrough with either CF or chronic rejection after a lung transplant. In the mean time, I will keep fundraising so that I will be 100% ready when the time comes. The time may be 5 months or 5 years. Like I keep hearing, there is no crystal ball!

Tis' the Season

It is this time of year that reminds us how important it is to make sure people you love and care about know it.

I was shown this today. My mom, my aunt Esther and my friend, Andrea spent 5 hours selling homemade scarfs and jewelery to raise money for my double lung transplant. I really wanted to be there to show them how much I appreciate all they do but with the fundraiser tomorrow I need to make sure I don't over do.

I hope that all in my life know how important they are to me. I don't often say those words but I hope I show it through my actions. I try to be the best wife, daughter, sister, cousin, friend and co-worker possible.

A lot of people have shown their love and support for me during these trying times and I want everyone to know it does not go unnoticed by either myself or Brian.

I have been blessed by so many people in my life. The list is way too long to list. I am reminded everyday of someone that has made a difference in my life, whether is a telephone call from a best friend, an email message from a grade school teacher or a facebook message from a long lost friend.

I have a special place in my heart for all that I have crossed paths with in my life.

I love you!

For my Dad!

My dad was on my case because I haven't updated my blog. I have been busy trying to stay strong and healthy.

I have started to exercise again. When I heard that I needed to have a transplant, I gave up on my current set of lungs and got very lazy. I need to be in tip top shape to have an easy recovery from a transplant. So, I got off my butt and got on the treadmill. Since my last post, I have been really good about walking on the treadmill or outside. I also started doing some strength training with free weights.

I got through Thanksgiving without getting sick. This weekend, I have my husband's work Christmas party and then the Rock-n-Ink fundraiser. I need to be very careful that I don't wear my self down or pick up anything. It will be nice to get out of the house for a bit.

I have a Doctor's appointment next week. This will give me an idea if the exercise has cleaned out my lungs at all or if it is just getting me back into shape for the transplant.

FYI, I am on the waiting list but not active. At this point, B&W just needs to hit a few keys to make me active. I am taking things day by day. My insurance has been approved.

B& W just did a double lung transplant on a CF patient that was evaluated at the same time I was. He was listed the day before Thanksgiving and got the call for his lungs on Thanksgiving. It is amazing how fast it can happen. I am so happy for him. He needed the lungs and I am so glad he didn't have a long wait.

Well, for those of you wondering. I am no longer stuck in a rut. I am taking things day by day and trying to live as normal of a life as possible.

Happy Holidays!

Help! I am stuck in a rut!

I am so bored. I haven't blogged because I have nothing to write about. No transplant news. No new fundraising news. No life news.

I am so tired of being home all the time. I feel like I am a prisoner of my home and my dogs are my prison guards.

I need some excitement. I keep asking myself is my life the way it is because I am just afraid to live life because I am afraid to get more sick. I read about so many other people with cystic fibrosis doing things. Every time I do something I get sick. What is that all about? Or is my life just boring? I feel like I do nothing. I go nowhere. Has my life always been boring?

Would I be pressing my luck if I start doing the things that I love to do? Wait, I can't even tell you what I like to do. Can someone remind me what I like to do for fun? Help me!

Decision Made

First, I want to thank everyone that has contacted me in the past few days to give me support as I have tried to make a decision about being listed and activated. I got emails, blog comments, facebook messages, myspace messages and phone calls. The input I received was very valuable to me.

I also had a great heart to heart with Brian. I plan on being listed and activated as soon as I get my dental exam. I need to call about scheduling that on Monday. As one person put it I need to have faith in the system and they are not going to give me lungs if there is someone else that needs them worse them me! That make me feel less selfish which makes is easier for me to accept my decision. I don't want to get lungs if mine are sill working okay and someone else really needs them. There is a scoring system for that reason. I have full faith that my lungs will come at the right time.

I will let everyone know when I am finally listed and activated. I am very at ease with this decision which must be a good sign. Thanks again to everyone that made this decision a little easier.

XOXOXOX,
Stephanie

Toughest decision ever

Well, I have spoken with my CF Doctor. He really didn't say what I wanted to hear but then I should know he always tells me like it is. The decision to be listed at this point is mine to make. He is concerned that if I don't get listed and be active on the list that my next infection might be the one that puts me on a ventilator. The IV antibiotics are just not benefiting me at all. He feels I am healthy enough now to pull through the transplant but we don't know what will happen if I wait.

I think the decision is so hard because I always hope that my next hospitalization is going to make a difference. Plus, the good days that I have gives me hope that I'll have more goods than bad.

The decision is about quality of life. With new lungs, I would not be typing this with oxygen on and nebbing albuterol. I would not get out of breath while walking to the bathroom or doing laundry. My days would not be ruled by when the home health nurse can get here to pound the junk out of my lungs so I can breath for a little while.

What would happen if I waited to get listed?
I could get really sick and end up on a vent and have a much harder time recovering from a transplant.

Or

I stay the way I am for years. I guess instead of living I would just be being. I don't feel like I living life to its fullest right now. I feel like I am just waiting for the next day to come.

Life is worth living right? So why is this decision so hard? I guess it is because of the unknown. But isn't there a lot of unknown right now?

I really wish someone could make this decision for me. This is just a little look on what is going on in my head right now!

B&W update

I had a transplant appointment yesterday. All of my tests came out good. I am healthy enough to go forward with a double lung transplant. My case goes in front of the transplant team today to see if there is anything else they would like me to do before I can get listed. Then they are going to get pre-approval from the insurance company. They are also going to talk to my doctor today to get his opinion about me being listed. I think we will probably go ahead and list me but not activate me. That way I can try to make the most of my lungs and as soon as we feel that my lungs have ran their course then they will hit a few key strokes and activate me. Once they activate me, I need to be ready. The call can come as soon as the day they activate me. That was a big shock to Brian. Yesterday was the first time Brian had gone to Boston with me. I am so glad he did.

I am sure people are asking why wait. Brian actually asked that question. The average a person lives after a lung transplant is 5 years but they are good quality years. B&W actually have a patient that is 21 years post transplant. Of course that is what we are all hoping for. The longer we wait to get new lungs the bigger chance that there is a break through in medicine that will help people survive longer after a lung transplant. So I think we will try to get these lungs as healthy as we can so that there is hope for a medical break through before I really need lungs. My tests show that I am borderline needing lungs so the decision to be active or inactive is very tricky. We don’t want me to get to a point that I am too sick for a transplant. I am stressed about this decision. I wish we had a crystal ball to see what the future holds.

What a Day!

I am so amazed by the people I have in my life. My friends and family did an amazing job today with our first fundraiser. I think it was better than we all could have imagined. Who know you could make over $700 on a bake sale while standing in 37 degree Maine weather. Oh yeah, that doesn't count the wind chill. It was freezing. I love you all and thank you for the amazing day. Oh yeah, Can anyone tell me how this coffee works?

My next blog will be about my transplant appointment that I have on Wednesday. It sounds like we are going to make a plan of action. Wow!

Rock-n-Ink

That's right we have a name for the event that is taking place on December 7th.

Getting Sprung

That's right, I should be out of the hospital tomorrow. I will still need to be on IV antibiotics from home but there really is no place like home. I aced my 6 minute walk test that I needed to do for my lung transplant evaluation. I had to walk at least 1100 feet and I walked 1970 feet in 6 minutes. Oh course, I was using 3 liters of oxygen.

I think I am actually feeling better. I am able to cough stuff up.

Event update:

On Sunday December 7th, Memory Lane in Standish, ME is holding a 3 band benefit for me: Bill Lake, Strange Brew and ICGYRO. Plus Infinity tattoo will be doing tatoos starting at $30. 100% of the proceeds from the tattoos will be donated to me. The bar will open at 2pm and stay open until 1am. $3 cover 100% of the cover is being donated to my lung transplant fund. Let's kick this fundraising off right with load music and tattoos!

If you are asking what Roses have to do with Cystic Fibrosis

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.


65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

My thoughts

I am on emotional over load right now. When I go to bed I am going to crash.

I had a doctors appointment today. My lung functions were better then when I went to B&W but I am not at my base line. Though that being said we are going to pull the Picc and let my body have some time to heal.

I talked about my lung evaluation at B&W and my Doctor was actually happy that I didn't feel good when I was there.

I talked to the Social worker about how I am dealing with the whole transplant thing and I think I shocked him. It took me a while to realize that I am at the point I am at with my health. Every day that passes that I need Oxygen or get short of breath just walking convinces me more that I need to get new lungs. Some days I feel like I am giving up but most days I feel like I am definitely doing the right thing.

Today, I got a call from my sister that I have been waiting for. She is in the middle of a custody battle with her ex-husband. The guardian finally wrote his report and suggested that primary residence should be with my sister. Yeah! The girls are going to be so happy! All I want is the best for those 2 girls. They mean the world to me. I love them like they were my own.

I had a great weekend. I got to surround myself with all my loved ones. Saturday, Andrea gave me 4 tickets to the Portland Pirates, which is the local NHL AA team. I was able to bring my 2 nieces, my sister and her boyfriend. Earlier in the day I went to the local farm with my nieces and my sister. We picked out pumpkins, went on a hay ride, drank spiced cider and the girls did a hay maze. Sunday I picked the girls up from my sister to bring them back to their dad's because I was going that way to go celebrate my mom's birthday with her. I got the idea to see if the girls could come with me. Their dad said yes so they spent the next 24 hours with me. I think my mom was happy to see them. Sunday night I went to my friend, Andrea's house and did fundraising stuff. My mom, my nieces, my friend tracy, her daughter and Andrea's 2 kids were all there. It was so great to spend time with all of them. Monday, I went to breakfast with my mom and Dad and them went and visited my Grandmother and Nana.

I am very tired but very happy!

Girls weekend

Last weekend was our annual Girls weekend. This year we went to Mt. Pocono, PA. We Stayed at Mount Airy Casino and Resort. I swear our room was haunted. Every time we spent time in the room, I got sick. I had fevers, need my oxygen, had night sweats and lost my appetite. I would always feel better once we left the room.

We spent a lot of time just relaxing. When we did leave the room we either went shopping or went to get something to eat. We literally shopped until we drooped. The best part of the trip was definitely the 3 hours we spent in the spa. I found my new love...eucalyptus steam sauna! Wow, I could breath!
By the end of the trip I ran out of oxygen which terrified Diana and Kim. So we got a wheelchair from the Hotel. That was loads of laughs. We also had a huge issue with the heat in our room. It was hot and stuffy we complained many times. After 3 maintenance visits, I finally lost my cool and ended up getting us a free night!
I had a blast. It is always nice to be surrounded by loved ones. I have learned that laughter is the best medicine. I love you Diana and Kim. I can't wait until next year.

Sharing this lovely letter of Support

Dear Friend,

I am writing to you today to let you about an a friend in need. Our friend Stephanie (Tutlis) Briggs is currently going through the evaluation process for a lung transplant. Stephanie has cystic fibrosis. This is not only an extensive surgery but it is also going to be extremely expensive. Stephanie has been advised to raise between $100,000 and $300,000. Stephanie will have the procedure at Brigham and Women's Hospital in Boston, Mass.

Stephanie is an extremely positive person and she is always willing to help others. You can always count on Steph to look for a smile, laugh and encouragement. Even when she is in the hospital for yet another infection, Steph can still make me laugh. Stephanie is very supportive of others. I know everyone who has come in contact with Steph can tell about a time that Stephanie has made them laugh, held their hand, made them smile or helped them out of a jam. She is a true friend to so many people and now she needs our support. My life has been blessed by having Stephanie in my world, I know many others can say the same thing.

If you can find it in your heart to donate to Stephanie's transplant fund I know Stephanie and her family would really appreciate it. Any amount that you donate will help reach her goal.

Stephanie's fundraising campaign is being supported by the National Transplant Assistance Fund. Her page is http://www.transplantfund.org/Restricted/patient-detail.cfm?pat_id=2630&CFID=7662373&CFTOKEN=74167330.

Our new website http://www.newbreath4steph.com/ has a lot of wonderful information and ways to donate. We update this often, adding pictures and more. I know Stephanie loves to read the messages many people have left in the guestbook. The pictures and notes people have uploaded onto the fundraising wall are wonderful. We really appreciate everyone who has supported her.

We will be holding a dinner/dance for Stephanie. This will be help on January 17th at the Rumford Eagles. The spaghetti supper will be from 6pm-7pm with the dance from 8 pm- midnight. The band Monsta will be playing and we will have a Chinese auction. Please contact me at 357-5606 or ayork@msad21.org to get your tickets. This promises to be a night of fun and I know Stephanie would love to see all of you there.We have begun selling 50/50 tickets to be drawn on the January 17th at the dance also. We are also having a pie and cake sale, you can find those details on our website also.

Please feel free to contact myself or Stephanie for more information.

Thank you for your time and your support.

Sincerely,Andrea (Mitchell) York

Please forward to all of your friends.

January 17th

Andrea is organizing a dinner/auction/dance to benefit my lung transplant. It will be on January 17, 2009 at the Eagles in Rumford. We are having a band and lots of good items to win. I hope to see you all there!

Brigham and Woman's

I am currently at Brigham and Woman's for all of the testing I need done for my lung transplant. I feel like I have had every type of test know to man. I am hoping things are going well. I have to stay until tomorrow to get one more test completed. I am not sure when I will know my status for a lung transplant. Everyone at Brigham and Woman's has been very nice especially the nurses. I can't wait to be back in Maine and in my own bed.

I hope all is well!

XOXOX
Stephanie

Welcome

I just want to welcome anyone who has just found my blog. I have been busy lately working on the start of events to raise money for my lung transplant. The Fund that was created for my Lung transplant is New Breath 4 Steph. Please feel free to check out the website. I am blessed that I have a lot of family and friends that have offered to organize different event to raise money. I love you all!

Redsox Game with my long time friend

For those who don't know me well, I am huge Redsox fan. I like to the Celtics and all football games but I don't miss a Redsox Game on TV.

This weekend I had tickets for Maine Day at Fenway Park. The Redsox played and beat the Blue Jays 4-3. It was a great game.


The coolest part was Brian and I went with one of my dearest friends and her husband. Neither had ever been to Fenway park. It was a day to remember.

I have not had a chance to do much with my friend Andrea for a few years. It was great to spend some time with her.


She is also doing a lot of the organizing of the fund raising for my lung transplant. I am so glad to have her in my life. She is a true friend. I love you Andrea.

How to add a comment

I know a lot of people are not familar with this site. I am hoping to get more comments posted so here is how you do it.

To add a comment on my blog:
Click on Comments
Type your comment
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I hope to hear from you all!

Any help is appreciated

I have been working with my dear friend, Andrea who is doing most of the organizing, on our first fundraising event. The event should be taking place on either November 28th or 29th at the Eagles in Rumford. We are waiting to hear from them with confirmation. We are hoping for Saturday the 29th. Our plan is to have a Supper, Chinese Auction and a Dance. We have not decided what type of Supper we are doing yet so any ideas would be helpful. I want something different. We are starting to collect items for the auctions so if any one has something they would like to donate or knows someone/place that would donate, great! Our hopes is to have a band for the dance. So ideas of local bands that will donate their time or give us a good deal are welcomed.

You can post ideas on this blog or send me a message. I do not feel comfortable posting my email address on my blog so send me a message and I will share it with you to share with other that may want to help.

Thanks in advance for any help you can provide.

September 29th

I finally have a date (Sept. 29th) for my 2-3 day hospital stay at Brigham & Woman's for the testing for my lung transplant evaluation. I am so excited.

I also want to say how grateful to all the people that are here for me during all of this. I am humble by all of you and couldn't do this with out you! I love you all!

Now the fundraising can officially begin!

Life is Good

I had a relaxing day yesterday. I went up to my camp this weekend and tried to chill. Saturday was a pretty stressful day so I need a day of rest. I have to keep reminding my husband that camp is a place for both of us to relax. I cannot wait to go back up to camp this weekend.

Going to camp seems to be good for my health. Even though I relax, I am always moving. I walk to the restaurant that is about 1/4 mile down the road, I go swimming, I ride my bike and am constantly throwing the ball for my dog. I cough a ton of junk up. Health wise, I feel the best I have felt in over a year and half. Like the title says "Life is good!"

CF Appointment

Yesterday was a really good day. My MRI showed no nerve damage in my back or neck. We are thinking that I either pulled a muscle in my chest or I have a plug in my lung. My FEV1 are stable and my weight is great. I actually feel really good. Now I just need to start exercising. I plan on going for a walk with my sister tonight. I also bought an inversion table to use while I am doing my vest. This way I can tip upside down to help the mucus move. I hope it helps. My Doctor gave me a great compliment. He said that I have worked hard in the last year to become healthy again and that all my hard work is paying off. In November I weighed 96 pounds and yesterday I was 112. What a difference 16 pounds make.

Sun!

The weather here in Maine is finally feeling like summer. The sun is shining. Isn't that enough to make anyone happy? For those who don't know me I love the sun. I even have a sun tattoo on my back. Life is great right now. I am working from home in the sun!

Missing my friends

This past weekend was great! I got to see my girls: Diana, Andrea and Kim. It was so nice to be surround by close friends. I also got to spend some time with just my dad which doesn't happen very often. I miss them all already and can't wait to see everyone again!

Spending time with those close to my heart has made me miss a lot of my friends from the past. I am trying to reconnect with them but life is so hectic for everyone that its a challenge. I really miss Kellie, Aimee, Tracy(from class of 1994), Amy and Angela(from class of 1998). I hope I get to see them soon.

I love you all and miss you a bunch!

2 weeks

It has been 2 weeks since my first visit to B&W. I still haven't heard anything. I know that a lot of the Doctors were on vacation this past week. I would just like to know if they plan on taking me.

I have to keep reminding myself that good things happen to those who wait!

A Place to Go

The one thing that I learned to accept is that we all need to get away from reality once and a while. So in December of 2006, Brian and I bought this little red camp on Pumpkin Pond in Eustis, ME. It does not look like much but it is a place we can go and relax. We spend a lot of time on the water while we are there. We have a small boat that we use right on the pond and a larger boat that we put on Flagstaff Lake which is 3 miles up the road. We are in the process of winterizing the camp so we can use it during the cold winter months. Last year, Brian and his buddies went up several time to ride the snow mobiles. I didn't go because it was too cold and no running water in the winter. Hopefully, that will all be changed by this winter.

It is Creeping up

I can tell that my evaluation appointment is fast approaching because I cannot shut my brain off. I lie in bed an my mind goes and goes which is the reason I am blogging at 3:30 am. I have been wide awake since 1am. I am tired but just can't sleep. It will hit me tonight when I hit the sack like a brick.

I had an eye opener today. Even though I felt good, I quickly became aware that my lungs suck! I had to go into the office to meet with some students. The weather was very damp and humid. As I walked in the building with my oxygen on, I started to cough. Of course, it took me some time to stop coughing and to catch my breath. When I arrived in my office one of my co-workers told me she was very nervous because she could tell I was struggling. I replied "that is why I need new lungs."

Most people forget that I am sick because on a good day I can hide it well and on bad days I normally stay at home so no one can see it.

Thanks for visiting.

Almost here

I cannot believe in one week I will be in Boston meeting with the transplant team at Brigham and Woman's. I am really excited for some answers.

I am tired this week. My last blood test showed that my iron was low. This is nothing new but some days it really affects me. I cannot wait for the weekend to get some good sleep. My husband and I plan on going up to our camp to do more work on it (well he does the work and I swing in the hammock).

The air here is very heavy and moist so it is hard to do any outdoor activities. I feel like a slug.
I have had my nieces here all week. The pretty much take care of themselves. I just make sure they are safe. The keep my dogs busy. By the end of the day my dogs are trying to find a quite place to get away from them. It is pretty funny.

I need to go in to work on Thursday to meet with some students. I haven't meet with live students in a long time. I do most of my work over the phone. The best part of going in on Thursday is I get lobster!

Well that is all. I hope this finds you all well.

Life Update

Well, I have been feeling really well. I am a little scared about how good I have felt. I am just waiting for things to go down hill. The only thing concerning is I have been coughing up a little bit of blood. The good thing is it is not pure bright red blood. It has been mixed with mucus. I think it is from plugs moving. I haven't had any fevers and I am not tired. Oh and last but not least, I am finally gaining weight. I am almost up to 113 pounds. That is good since in November I weighed 96 pounds.

I have been babysitting my nieces. I think it has really kept me in a positive mood. The actually energize me. I love having the here and spending time with them. For those who don't know they lived with me every weekend for almost 2 years. I miss having them here.

Well, 2 1/2 weeks before my first transplant meeting. I can't wait to have some answers.

I hope to hear from you all soon.

XOXOXOX
Stephanie

Transplant Evaluation

I got a call from my Doctor's office a few weeks ago that Brigham and Woman's was waiting for me to call them to set up an appointment for the initial evaluation visit. I cannot believe how fast this is all happening. I called them and my first appointment is July 30th. WOW!!!!

My sister, Tonya, is going to bring me to this appointment. She is a pharmacist so she has a little more medical background than I do. I am nervous but excited all at the same time.
I think the hardest thing to grasp is how fast my health declined. A year and 1/2 ago I would never of expected to be where I an today.

More to come...

Say What?

At my last doctors appointment, I figured we would just talk about how the IVs were going and then set a date to have my PICC pulled. Well, that is not how the appointment went.

Long story short my Doctor is referring me to be evaluated for a lung transplant. I knew this was coming but I thought 6 months to a year down the road. Nope! Now! My Doctor is just waiting for me to tell him what center I want to go to.

After a lot of thought, I think I will go to Brigham and Woman's in Boston. It is close and they have a lot of experience with CF lung transplants. Now, I just need to call my Doctor so he knows where to send the letter.

I guess I better get fundraising! Even though I have insurance there is still a lot of additional expenses that I will be encountering. I have no idea how much I should even shoot to raise. I guess there is no harm at raising too much money because any I don't use I will donate to either the make a wish foundation or the cystic fibrosis foundation or another worthy cause.