Thursday, October 25, 2012

Lindsay Shipp



Heroes of Hope Panel member and cystic fibrosis (CF) advocate Stacy VandenBranden sat down with our newest hero, Lindsay Shipp, 28, and her mother, Barbara. They discussed how much determination and compassion Lindsay has towards everything she is involved with. Lindsay has never complained about her disease and has never allowed CF to identify who she is.

A favorite quote from Lindsay is: "There are days that are harder than others. Especially when I was younger, I was always scared for the future. People with CF have to appreciate everything that they go through, enjoy their lives, and reach for their goals."

To read more about Lindsay click here
To nominate your Hero click here

Tuesday, September 18, 2012

Flu and Cold Season...

Bring it on....

I'm as ready as I can get!

Elbows!!!! Its elbow time not to be confused with Hammer time ;) So when you go to hug or shake someone's hands try giving them Bows!!! Especially if you are feeling under the weather!



I stocked up on Purell... I have it in my handbag, coat pocket, car, and throughout my house.


Got my Flu shot! (remember your flu shot takes 2 weeks to start working so think about getting it soon)


Some Things that I do to help keep me healthy that I swear by...

1. Frequent hand-washing, when you can't wash Purell!!

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face. If I have a itch I will use the inside of my shirt to itch it or a tissue.

3. Gargle with warm salt water.... I always gargle at the end of every night. Simple gargling prevents proliferation. In a way, gargling with warm salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.

4. A daily sinus rinse... Again I always do mine before I start my nightly treatments. I use a packet per nostril! Similar to 3 above, salt water is very effective In bringing down viral population.

5. Boost your natural immunity with foods that are rich in Vit C and D or take a vit C and D supplement. I take many vitamins I think its very important to keep up on all your vitamin levels so you can stay healthy.

6. Drink as much warm liquids as you can. This is a pretty easy step I love my Starbucks!!! Some yummy examples and some of my favs are coffee, hot choc, tea, or a hot chai. Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive.


I'd love to hear more tips if you guys have any. 

Stay healthy this winter and please if you're sick stay home!!! I can guarantee you no  one wants your boogs! Xo 

Monday, September 10, 2012

A Beautiful Angel....



My sweet T earned her wings August 28, 2012 It was a sad day here but I know Tiff had a welcome to heaven party for her. I can only imagine the shenanigans they are getting into up there. Tiff, Tanya and I.... The 3 Musketeers is what the hospital staff started calling us. From all our late night Starbucks visits, to mastering the Wii while still staying 3 ft apart, the late night talks, well the list goes on and on. I am grateful for so many great memories I share with them... my musketeers.

T and I at starbucks of course :)

So Sept 1 Amanda, Ron and I headed to Idaho for T's funeral. Amanda spoke and did such an amazing job. Her talk was perfect and I know T was smiling down at her...




Amanda's words for T

Tanya Lynn Taylor Downs was born on 7/11/83 (In case she hasn’t told you they give free slurpees away for her birthday.
  Tanya came into my life as a patient and left me as a best friend.  For those of us fortunate enough to know Tanya she had that effect on people.
  I met Tanya in 2006.  I had just moved to Utah from Nevada and had only been a nurse for one year.  I started working at the University of Utah Hospital on 2 East, which many of you know became T’s home away from home.  When I was given the job my manager was explaining to me the different types of patients on the unit and while explaining it to me she said CFers.  I had no idea what CF was.  Working with all the other nurses on the floor they would tell me our CF patients mean a lot to us and they know more about their disease then we ever will.  They explained to me how they have been in and out of the hospital most of their lives.  The nurses would tell me how they are very particular with their care and often request certain nurses.  They said don’t be offended if you notice some of us having more CF patients then others.  
  Then one morning I get to work and on my assignment was Tanya Taylor I will never forget she was in room 239.  I walked in so nervous just to see her happy smiling face watching a movie with Jackie.  Tanya was getting to go home that day so I had to de access her port.  (Port a caths were permanent catheter used for their IV access, they were also know as thipples “Third nipples” by Somer and Tanya).  I get her ready to go thought I did well and then realized I had forgotten to put heparin in her port. (Heparin is what keeps it from clotting).  I thought oh crap. I screwed up my first CF patient.  I am calling her frantically on her cell phone and she answers as she is pulling out of the parking garage and I told her what happened.  She said oh I will be right up, she came up to the floor and let me repoke her, and I will never forget what she said, you are a really good nurse and I liked having you even if it was only for a day.  That is the type of person Tanya was she found the good in everyone.  From then on out I was always T’s nurse.
  Tanya had to spend many holidays in what’s known as the joint.  Whether it is Thanksgiving, Halloween or her Birthday she was always ready to celebrate.
  Tanya had CF, CF did not have Tanya.  Right before her transplant she was in the hospital a lot, but she would always have fun.  With Tanya came great friends and family.  Tanya always had someone with her and I will never forget one night she said she was going for “a walk” little did we know that she had a get away car outside waiting to take her to the Moon. (No I don’t mean space I mean the bar).  Starbucks was a big hangout and thank God the one at the U was 24 hours you never knew when Tanya would need a starbucks run.  If everyone wanted to go down together and a doctor was around I would be directing and sneaking Somer, Tiff and Tanya to get away each taking a turn down the elevator (because there is a rule where CF patients have to be 3 feet away from each other).  You would walk by Somers or Tanya’s room and they would have the WII set up perfectly 3 feet apart.
  I know as soon as she saw Tiffany they gave each other a never-ending hug.  We will always have a sweet angel watching over us, but she is with one of her partners in crime so they will be watching us with their newly empowered angelic beings with a touch of teasing and joking too.
  I have to share two remember when’s.  No matter when I would talk To Tanya whether it be a day or a week she would always say remember when.  The first was when Tanya was staying at my house her and I were eating at Taco Bell and across the parking lot was a Hollywood Video, as we were eating I said hey do you want to hear something funny.  I have a 150-200 dollar late fees there (I know who has that much money in late fees at Hollywood Video) after she quit laughing she said lets go take care of this.  This was pre transplant and Tanya walks in with her oxygen and said I am Amanda Hankins I am not paying my fees cant you see I am sick, the lady at the counter said oh maam I am so sorry I will take care of that.  Thank you T.
  The second remember when was when my husband would bring my son Brenden up to see Tanya every Sunday.  Brenden did that about every Sunday she was in the hospital for his first 8 months of life.  He would just lay on her bed with her and as he was getting older he would mimic her cough.  Tanya would cough then Brenden would cough.  Then T got her lungs and once she was up and able to talk she said you know what I am going to miss Brenden's cough, since I won’t cough anymore neither will he.  That was Tanya always finding the humor in everything.
  Lets talk Ambiem the 2-east sleeping pill, which Tanya would often entertain us on.  If you have seen the commercial you know the side effects: People using this medication have engaged in activities such as driving, eating, and making phone calls and later have no memory of the activity.  Well I can say she didn’t drive but she did do all others.  Many of us out her probably got the infamous text of her combing Avril Lavanges hair; cats were coming out of the walls. Oh Tanya how you always made us laugh.
  I was blessed to get to be with her friends and family waiting for her while she got her lungs.  She was so brave and I have said this many times Tanya I aspire to be half as brave as you.  Tanya loved Reba McIntyre and I remember after she had gotten her lungs but was still sleeping a lot Reba had called her cell phone and left a message.  Oh my goodness she must have made me listen to it 100x. I took a quote Tanya had on her facebook. She was so grateful for her donor.  The quote says “There is no greater love then this.  There is no greater gift that can ever be given.  To be willing to give up your organs, so another might live.  There is no greater love then this.”
  Tanya you taught me so much.  You taught me to love when things are hard, you taught me to smile regardless of the fight we are fighting, you taught me to walk on.
  Tanya I will miss you everyday.  I will miss you and your dogs having a sleep over at my house, I will miss are dinner dates, I will miss your laugh and your “oh hells” the phone calls and the texts, but I know you are with us each day taking deep breaths and smiling.
  Tanya I would like to tell you to rest in peace, but don’t’ rest it is your time to run, dance, laugh, and breathe.


The photo above was when we were at her graveside T didn't have her Love to Breathe necklace on and Tiff and Astra both had theirs. On top of her casket were 65 beautiful roses and Amanda took her necklace off and placed on the roses so now T can have her Love to Breathe necklace with her forever too.

Breathe Easy T! You Lived, You Loved, and now you can Breathe!!! Xo infinity your musketeer

Sunday, September 9, 2012

Roomies 4 Life!

I can't believe it's been 15 years since we all shared a dorm/apartment together. So many fun, crazy, silly, awesome memories from that year. We are bonded for life!!

We all tried to get together this summer when everyone was in town but life is crazy. I'm glad some of us were able to still meet up. Love these girls!!

Saturday, September 8, 2012

The Perfect Day

August 10, 2012 I drove up to Logan with my friends Amanda and Ron to see Tanya get married. It was a beautiful day and she was a beautiful bride and she was so happy she glowed.

It was probably the happiest/saddest wedding I had been to. I am so glad that Tanya was able to have her special day with Jake it meant so much to her to be able to walk down that aisle.



Amanda, T and I 

Cysters... Stephany, T and I

The Happy couple and their first dance Jake picked her up for this one she was getting tired. 
video

Tanya teasing Jake with the cake
video

ALWays BE TRue


I finally came up with a saying that has a subliminal message as well for my girls...

ALWays BE TRue

ALW are Astra's initials and TR are Tiff's initials and the BE stands for Breathe Easy....

I had a bracelet made and I never take it off a constant reminder of my Angels and to
ALWays BE True!

Has it really been 3 moths?!?!

Holy cow! I cannot believe what a slacker I am.

Well I have some catching up to do. How is already Sept.? I am looking forward to cooler temps this summer was a scorcher. I am a little tired of being a human salt lick ;) The babies on the other hand love my salty legs.


This Lil Mr turned 8 in June I am not even sure how that happened. Just the other day I got something in the mail from my vet that said how to take care of your senior pet for Lilly, I got Oscars last year makes me sad both my babies are seniors :(

I went and saw Sheryl Crow in June. I saw her last year too she always puts on a great show.

July was even hotter and the air was SO smokey from all the fires everywhere... Thank goodness I had some amazing visitors that were in town. I was SO excited to be able to meet up with Sharlie when she was here for her family reunion. She looks Amazing and is running circles around everyone so exciting to watch all the new things she is able to do with her new lungs and heart. I love my BCF!!!!

I went over to my bros on July 4th for a bit but I headed home before fireworks. The 4th isn't one of my favorite holidays too smokey and I was SO over fireworks this year. I'm a very protective of my babies and they hate fireworks too, so I try and keep my music on a lil louder so they don't hear them.



All of the Lander fam was in town in July so we jumped on the opportunity to get a updated fam photo and of course its not a fam photo without Ricki and I in matching dresses....



Ricki and I plan matching outfits most of the time... So it was pretty funny when I went to pick her up to go to the farmers market without discussing our wardrobe prior, and we still managed to wear matching outfits. Great minds think a like...

I hope everyone had a great summer full of fun memories and lots of time spent with loved ones. Xo

Monday, June 4, 2012

The Triple Triple

Woop Woop!!!

I am 33 aka the Triple Triple, you know me ever year there has to be a theme!

I had a blast celebrating with friends and family. My friends surprised me with the cutest Madonna themed cake and it was so yummy too. We have some friends that are very talented when it comes to cake making skills click here and you can see some of their creations.

Here are a couple pics from my bday weekend...












Monday, May 7, 2012

We are getting SO close!!!



Phase 2 Study of Kalydeco and VX-809 in Combination Shows Promising Interim Results

May 7, 2012
Vertex Pharmaceuticals Inc. today announced promising interim results from a Phase 2 clinical trial of its cystic fibrosis drug Kalydeco™ and VX-809, a CF drug in development.

The results showed a significant improvement in lung function in people with two copies of the most common CF mutation who received the two drugs in combination. Both Kalydeco and VX-809 are designed to treat the underlying cause of CF. Complete results from the Phase 2 trial are expected this summer.

The ongoing Phase 2 study enrolled 108 people, ages 18 and older, who have one or two copies of the Delta F508 mutation. Today’s results are based on data from about half of the study participants after they had completed 56 days of treatment.

Vertex plans to begin a pivotal trial of Kalydeco and VX-809 in people with two copies of the Delta F508 mutation, pending final study results. Pivotal trials are typically designed to gather data that could be used by the U.S. Food and Drug Administration (FDA) to decide whether or not to approve a potential drug.
"We are eagerly awaiting the full results, and are pleased that Vertex is accelerating its plans for a pivotal study of the combination treatment in those with two copies of Delta F508," said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.

The CF Foundation played a key role in the development of Kalydeco and VX-809, providing significant scientific, clinical and financial support.

About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation. About 40 percent of people with CF in the United States have one copy.

Earlier this year, the FDA approved Kalydeco for people with the G551D mutation ages 6 and older. Kalydeco is the first drug that treats the underlying cause of CF — a defective gene and its protein product, known as CFTR.

Tuesday, May 1, 2012

Be Aware!

May is Cystic Fibrosis Awareness Month....

Here is a  cute video I thought I would share that does a good job explaining CF... Enjoy!



Monday, April 30, 2012

An Amazing story... Tune in or set your DVR's


65_RedRoses is a documentary that takes an unflinching look into the life of Eva Markvoort as she battles a fatal genetic disease called Cystic Fibrosis. At 23, Eva needs a double lung transplant to live. The film follows her journey to transplant while seeking support from her two online friends Kina and Meg who also have CF.

65_RedRoses premieres Thursday, May 3rd at 9/8c only on OWN.
http://www.oprah.com/own-doc-club/65RedRoses-Trailer
Read more: http://www.oprah.com/own-doc-club/65RedRoses-Trailer#ixzz1tZKpXv7M

Thursday, April 26, 2012

A Lil Spring Cleaning

Holy Cow I can't believe it's been over a month since I have posted on here. Can you say Slacker!!! Sorry Blog Land!

Well after a great run (17 months) I was admitted into the joint, the theme was "SPRING".

As you can remember I am thippless so it definitely made this stay a lil interesting. Let's just say at the end of the 2 weeks I was missing my Thipple (portacath). I thought maybe just maybe my arm veins would of had a chance to heal on their nice 7 year break of no piccs. I was banking on just getting a Picc, but no such luck.  My veins are horrible and I am not quite ready yet to get something permanent again. So I felt like I was 8 again as I went with peripheral IV's the whole time. Total stay 5 pokes and 4 IV's total, not to bad!


IV #1


The Fam came up Riv and Makena had a blast on my bed going up and down, They loved the large elevator and the revolving door too. It was better than Disneyland I think they said ;)

I was quite colorful after this stay 

My mom playing Draw Something

My IV bag that goes everywhere with me connected to it 24/7 my fancy arm bracelet and my lil reminder that Astra was watching out for me. Between her and Tiff I was taken care of I was in the last room Tiff was in Im sure she planned that. I am glad she didn't pull any funny Business... considering I was there for April Fool's ;)

My bam bam doo! I pretty much wore my hair like this every day... lookin good ;)

Had Madonna's new album on repeat the entire time.... Love it!

GNO joint style! SO MUCH FUN!!! Cards Sushi and GREAT company! 

SPRING theme!!! Loved this theme Good job Momma

blowing smoke rings! Its a true talent ;)

The day I got home left Fake spring to Real Spring! 

Its amazing how you can do nothing for 2 weeks but yet you get home you are so exhausted. This  makes the transition from joint life to real life a bit overwhelming. Hopefully I can go another 17 months or so before I have to do it again.

Thank you everyone that made this stay a great one.... my fabulous Docs, my amazing nurses, The best  family and friends EVER you guys are ALL AMAZING!!! Thank you! Xo

Wednesday, March 21, 2012

Can't believe she is 7

Happy Birthday Lilly!!!!

Seems like just yesterday she was a lil puppy... Both my babies are 7 now until Osc turns 8 June 3rd... My lil Irish twins ;) 

Lilly is still snug as a pug in bed she loves sleeping in, she is so funny and makes me laugh all the time. The quote "The pug is proof that God has a sense of humor" is so true! Happy Birthday Lilly! Xo

Thursday, March 1, 2012

CF Awareness

There seems to be a lot of CF awareness in the media these days which is SO exciting!

Last night there was an amazing documentary on TLC called Breathless Bride. For those of you that missed it you can watch it on you tube. It's titled "Love on the transplant lis"t on you tube. It is a documentary of the cutest girl Kirstie with the most amazing accent... I love accents! It follows her as she plans her wedding while she waits on the transplant list.

Monday, February 20, 2012

The road to recovery...

THANK YOU, THANK YOU, THANK YOU!!!!

For all your prayers and positive thoughts.... The heart and lungs were a perfect match! One of Sharlie's surgeons even called them "pristine".

I am so happy for her and the life she will soon have. Sharlie is healing and doing well but having lots of pain and nausea. She is a fighter and is so strong I know she will be healed in no time. Please continue to pray and send her positive thoughts for a speedy recovery.

Remember if you want updates you can click here

Xo

Thursday, February 16, 2012

Feb 16th

A GREAT DAY FOR MIRACLES!!!



Sharlie got the call last night and is currently in the OR at Stanford receiving a new heart and lungs as I type. The pic above is Shar last night waiting to hear if it was a go and reading all her amazing messages from what seems like the world.... She is SO loved!!!! You can also see she is wearing her Sharlies Angels tee... I put mine on last night too and am not taking it off until after her surgery. ;)

Please keep her in your prayers and send her positive thoughts as well as the surgeon team and the donor's family. Please also keep Sharlie's family in your thoughts and prayers. This waiting business is nerve racking and is filled with lots of emotion, but most of all HOPE and Excitement!!!! I cannot wait for Shar to begin her new incredible journey where she can BREATHE!!!

I love you Shar SO SO VERY MUCH!! BCF 4EVA!!!! XO8!!!!!!!!!!!!!!!!!!!!!!

There will be updates on Sharlies Angels Facebook page so follow that!!

Thursday, February 9, 2012

They Like me they really really like me ;)

Ha ha I have always wanted to say that!!!

I received a blog award from my cute friend Jenny. The Blog award is called the "Liebster Blog" Liebster is a German word that literally translates to "favorite", "dearest" or "beloved". By one blogger giving it to another, they are essentially saying, your blog is a favorite of mine.


The rules of the Liebster Blog Award are:

1) Acknowledge the blogger who gave the award by linking back to them
2) Give this award to 5 other bloggers (who have fewer than 200 readers), and let them know through a comment on their blog
3) Post the award on your blog
4) Best of all - bask in the glory, have fun and share the love!



This is SO very exciting to me!! Thank you Jenny!!! It always makes me happy to know someone is reading my blog, and if I can make an impact on them well then it is ALL worth it!!! This is tough, I love all my Blogging friends but here are 5 great ones in no particular order....








So go check out these awesome blogs and show them some love. Xo

Wednesday, February 8, 2012

Brad Johns




This month's Hero of Hope Living with CF, Brad Johns, age 39, is an extraordinary man who was diagnosed with CF when he was a young boy. Living with CF all his life, Brad has a positive attitude that helps him overcome any obstacle. Brad is a hardworking teacher who is currently working on his doctorate in education. Working to further his education, Brad stays on top of his treatments with the support from his loving family. Never allowing CF to get in his way, Brad has accomplished so much throughout his life and has no plans on slowing down.

"Now that I am 39-years-old, I make sure I stay on top of my treatments so that I can lead the healthiest life possible. I would tell someone my age that it is important to have a positive attitude and keep focusing on the right things that keep you staying well. I always tell people to be more productive in life so that they can keep their body healthy. You have to find the time to do your treatments and get into that routine and stick with it each and every day. I don't necessarily like sitting with my vest on and doing my breathing treatments while my kids are playing in the house, but I have to remind myself that if I don't do my  treatments than I'm not only cheating myself, but I'm cheating my family."

To read more about Brad Click Here

To nominate your Hero Click Here

Sunday, February 5, 2012

Madonna ROCKED it!!!



Seriously?!??!?! SO amazing!!!! I was screaming, squealing, singing, dancing, peeing in my pants, and coughing with excitement!!!! She was amazing!!! She rocked it!!! NO one and I repeat NO ONE will ever top that performance!

I have watched it over and over again thank goodness for Tivo!! I am still on a serious Madonna high! I can't wait for her tour!!! I hope you all enjoyed it too! L-U-V Madonna Y-O-U  you wanna!!!! Xo

Friday, February 3, 2012

L-U-V Madonna!!!!

Yahoo!!!! The Big "Madge"ical news I was talking about yesterday....


I just pre ordered MDNA! Is it March 26th yet?!?!??!

Most of you know I LOVE Madonna. It's an exciting weekend for ALL Madonna fans.

*Today you can pre order her MDNA album the deluxe edition... Check

*You can buy her Single Give you all my Luvin featuring Nicki Minaj an M.I.A.... Check
 I have been listening it to it ALL morning on repeat!!! I love it! Can't wait to get the whole album.

*And you can go see her film W.E about Wallace Simpson that she directed. Well that is if you live where it is playing. I am so bummed I can't find it anywhere in Utah :(


Then Sun finally a halftime worth watching Madonna will be performing. I cannot wait!!!! Woop Woop!

So what are you waiting for go get on Itunes and buy "Give me all your Luvin" and preorder MDNA :)

Thursday, February 2, 2012

The groundhog doesn't know!

So today is groundhog day.... Um can a groundhog even really see? 

I think this year global warming trumps the groundhog.... just sayin, Sorry Phil

So apparently he, I think his name is Phil saw his shadow and we have 6 more weeks of winter. Well coming from snow country and considering we haven't had any snow, well I'll take it. But come the triple triple in May if there is snow on the ground I will not be to happy. For all those wondering what Triple Triple it's the theme of my next Birthday. I had my Double Double when I turned 22 and well double numbers only happens every 11 years so it's definitely worth celebrating. Who am I kidding every day is worth celebrating... even today, Groundhog day!!

So Happy day to ALL of you!! Get out there and celebrate BIG!!!

Just in case you didn't notice 3 days in a row on here!! Yep, I am patting myself on the back. I'll be back tomorrow too, BIG weekend in store HUGE!!!!!! Lets just say it'll be Madgical ;)

Wednesday, February 1, 2012

So Smooth

I joined the smoothie movement!!! With some help from my friend Jess I am up and running. I didn't own a blender so after a ton of research I decided on the Ninja Master. I am pretty excited about it and it was only $34 so you can't go wrong with that.

Today I made my first one...

Above is a pic of me prepping my pitcher. The Ninja master has a motor on top that you pulse yourself and has a dual blade system one on the bottom and one in the middle to get the job done.

Im not one for recipes so I kind of just threw in some stuff, here is what I used...

~2 cups of spinach
~1 frozen banana
~5 strawberries
~1 cup of blueberries
~3 baby carrots
~1 cup of coconut milk
~1tsp of flax seed
~1tsp of Chia seeds

It was very yummy, it looks very gross but I promise so yummy and so healthy!  I am going to start doing a smoothie a day.  I had mine for breakfast today but I'm thinking it'll be more of a afternoon snack.
Does anyone have any recipes that you like to whip up? I am excited to throw more things in and try new flavors. Ill keep you posted.