WWTD

What Would Tiffany Do?

Buy everyone coffee!! Her favorite, Starbucks of course! So if you find yourself at a Starbucks today buy a stranger their coffee in her honor!

Can't believe it's been two years! I miss her!

Headed to Starbucks....

Emily to Ellen 2013

May is Cystic Fibrosis Awareness month!! Get ready, great things are happening!

My friend Emily Schaller is campaigning to get on the Ellen show to help raise CF awareness... Lets help make that happen! #emilytoellen2013

Muck Busters!

Check out Genentech’s new Muck Busters iPhone game at ow.ly/jG5ss its a great tool for CFers to learn more about the disease and encourage adherence in a fun, interactive way!

Users navigate a colorful world battling stubborn enemies including bacteria, white blood cells, and mucus, and overcome obstacles, like blocked airways, with help from fun characters representing Pulmozyme, bronchodilators, hydrators, and antibiotics. Best of all, there is a component that allows users to create a profile which offers tools to help users keep track of their CF treatments.

Go check it out. I just downloaded it to my phone. Ill prob check it out during my afternoon treatment.

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

Happiness is....

I love this!! Great steps to follow...

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 

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