Jordan Ulrich's Lung Transplant Fund

 
Raised: $9,405.00
Goal: $50,000.00
 
 
 

Created by

Lesa Ulrich

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Jordan’s Journey   The ancient Chinese philosopher Lao Tzu wrote that a journey of 1000 miles begins with one step.  If a step in life’s journey equals a single day, Jordan’s Journey b... more

 
 
 
 
 
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Updated posted by Lesa Ulrich 12 months ago

MI am so exhausted that I may ramble or to make complete sense. Please forgive me!
Today, Jordan went to the lung transplant clinic to see her doctor, Dr C. Her PFT's had dropped significantly, she blew:

47% on FVC or 1.99
31% on her FEV or 1.11
13% on her FEF25/75 or 0.56

The 31% is concerning. It's a big drop. The part I'm worried about is the 13% number. That sometimes is a good indicator of BO, or deadly chronic rejection. So...tomorrow Jordan is having a bronc. If her stent on the left side is plugged up we will rejoice because that will mean that's the problem. If it is NOT plugged up then Dr C will take biopsies to see if she has BO. Tonight I guess we will have to pray it IS clogged up, strange since usually we are praying for the stent to not be blocked up. I asked Dr C how worried he is. He says if the stent is blocked then he's not worried, if it is not blocked then he will be worried. Dr C is NEVER worried! He said we may have a problem. :(
If it is the stent we can probably leave to go home on Tuesday! If not....who knows!

Someone asked today for the following information to Jordan's medical transplant donation account. Checks can be mailed to

JORDAN ULRICH MEDICAL FUND
Comunication Credit Union
(Formerly ECCU)
801 Main
Ada, OK 74820

Credit card donations can be made thru
http://www.gofundme.com/rbdfo

All donations are greatly appreciated by Jordan and are tax deductible. Please help by posting this information about Jordan. We may be having another matching fund drive if we stay out here last Tuesday. More details later.

We are off to bed. It's been a long, tiring day. More later after the bronc tomorrow.

 
 
 

Updated posted by Lesa Ulrich 12 months ago

Tonight at 2 am Jordan's oxygen sats dropped. They are 84%. I have out her back on 2-3 liters of oxygen and she is doing well. She is able to keep her sats up to normal with the O2. This unfortunately is not the first time this has happened, last Saturday night, the night before Easter I went to check on Jordan. Her sats were in the 60's. I think we all panicked, we were reminded of what happened one year before we she crashed and had to spend three months in ICU. Last week I gave her until 8 am to get her system back up or we would have to be seen at the local ER. (That didn't seem like a good plan, John and I have been trying to have a meeting with them to get a plan in place in case if something happens. They don't seem interested in doing that. We will have to keep trying as long as we are here! )By 8 am she was able to turn the O2 off and she has not been on it again until tonight. I think I finally might have some idea of what could be going on. Last night Jordan had some blisters, red, painful, that she noticed. They look like shingles. She has tested positive before for EBV which can cause shingles but she has never had an active infection. Tomorrow we are going to test her for EBV, CMV and a Cylex test to see how compromised her immune system is. The lower her immune system the higher it is that she has one or both of the above viruses. On her X-ray she took on Thursday they noticed a "nodule" in her lung, right, middle, 2.2"x 1.2. I haven't physically seen the X-ray. I've had them sent to LA for Dr C to see. It could be PTLD, a cancer caused by lowered immune systems due to transplant anti rejection drugs. Usually the outcomes of PTLD are very good. We hope and pray this is not something else we have to deal with! Jordan's PFT's at home have been up and down, now FEV1 is 1.1 to 0.9. She is coughing a lot and spends a lot of time in bed. Also, "Darth Vader" is back. Jordan sounds so loud and so bad she sounds like Darth Vader. She clearly has something going on...if it is CMV or EBV that gives us an explanation and empowers us to move forward. If those test are positive tomorrow we will have to return to LA. Usually an IV antiviral is what is given to treat it and we should be able to return home soon after. We will have to return home, even if Jordan needs to stay unless something changes. We can not afford to completely relocate for the FOURTH time! (Twice to St Louis, twice to Los Angeles.) God knows our needs and He knows what we need. Please pray for this sweet girl who never has a harsh word. She has the most tender spirit. I asked her last night if she was okay seeing that she might have something else going on. In her sweet voice she said she/we must trust in God, that He provides for his animals to be fed, how much more does He take care of us! More later when results are back!
We will need to fundraise to go travel back to Los Angeles. Gas, food, lodging and other miscellaneous expenses pile up. Donations are tax deductible. Thank you for your gift to further Jordan's Journey.

 
 
 

Updated posted by Lesa Ulrich 17 months ago

Jordan's Anamazing story was told at the Cedars-Sinai Gala on Tuesday night. The hospital had hoped to raise money for the lung program, they raised five times more than their goal! Jordan GLOWED! Thanks to all the people who helped make it possible!

 
 
 
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Created by Lesa Ulrich on June 18, 2012

Jordan’s Journey   The ancient Chinese philosopher Lao Tzu wrote that a journey of 1000 miles begins with one step.  If a step in life’s journey equals a single day, Jordan’s Journey began 8030 steps ago. The Census Bureau tells us the average woman in the United States today will journey roughly 29,000 steps.  Jordan has a long way to go. At 15 breaths per minute, the average woman will breathe over 630 million breaths in her lifetime.  But it’s said, “Life is not measured by the number of breaths you take but by the moments that take your breath away.”  For Cystic Fibrosis kids and their families, that beautiful greeting card sentiment reflects a supreme irony—it’s what the disease does every day. CF takes your breath away. Literally. Permanently.  CF cuts your journey short.  Living with CF, fighting to KEEP your breath when the disease is ripping it away from you—that is what Jordan’s journey is all about. It is what she has been doing for every one of her 8030 steps.  She has not given up. You can follow the entirety of Jordan’s Journey here, on Caring Bridge ( http://www.caringbridge.org/visit/jordanulrich) and on Face Book. Jordan’s Journey has taken her through countless hospitalizations and at least half a dozen surgeries—including open-heart surgery when she was 2 and two double-lung transplants, one when she was 17, the last when she was 20. She has surprised many, many people—including many doctors—along the way. When she was in intensive care in a hospital in St. Louis suffering from severe respiratory failure, unconscious, the doctors—and one in particular—were convinced that Jordan would not survive. She was only days from death. He said so, to us, in Jordan’s room. She woke up and croaked, “You watch me!”  That was 762 steps and a second lung-transplant ago. The story of Jordan’s Journey, and the strength of her faith in God who has carried her, and guided her on what often seems to be a roller coaster ride, is a testimony that has touched thousands of people world wide.  It is a journey she is fighting to continue.  Earlier this year, the roller coaster of her Journey took a screaming downhill plunge. Quite frankly, we’re not sure it has stopped its downhill rush.  We are prayerful that it has and so are her doctors.  That plunge required us to relocate (again) from Oklahoma to Cedars-Sinai Hospital in Los Angeles.  The journey back to health, even if it does not pass through a third double-lung transplant (and it may) will be long and cannot be done in Oklahoma. Throughout this journey, we have been blessed with family and friends who have been able to support us—emotionally, spiritually, and financially. But now, after over 8000 steps of her journey and two double-lung transplants our financial resources are exhausted.  Jordan needs your help to be able to continue her fight. Maintaining residences in two different states, plus utilities, living expenses, travel, communication, on top of out of pocket medical expenses, co-pays is frighteningly expensive. Please help Jordan continue her journey. Thank you and Bless you!
 
 
 
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Recent Donations (94)

$9,405 raised by 94 people in 22 months.

Pink Member
 

$30.00

Levonda Arthur

11 months ago

 
 

Its not much - but I hope it helps. As a mom of 2 with cf, my heart is breaking for your situation. Sending prayers your way

 
Pink Member
 

$30.00

Wendy Peraza

11 months ago

 
 

Just want to try and help a bit....wish it could be much more...please know that Jordan and all of you are in my prayers and thoughts. May God continue to throw"stones" your way and give you all peace and joy--no matter what. HUGS!

 

$325.00

Anonymous

13 months ago

 

$50.00

Anonymous

15 months ago

 
Pink Member
 

$75.00

Erin Taylor

15 months ago

 
 

I have CF as well and just received a transplant 7/31/12. I'll be keeping you all in my prayers for healing for Jordan and peace and relief for the rest of your family. Much love to you all! ErinTaylor Orlando FL

 
Pink Member
 

$100.00

Bekah Wilson Nice

16 months ago

 
 

We are praying for Jordan. We love her very much and cannot wait to have a chance to see you all. Have a very Merry Christmas! Love, Bekah Wilson Nice family

 

$20.00

Anonymous

16 months ago

 
Pink Member
 

$20.00

Heather & Bret Irish

17 months ago

 
 

I'm a fellow cyster. My husband and I are praying for Jordan!

 
Pink Member
 

$50.00

Charlotte Hill

17 months ago

 
 

I know you are struggling right now, God has put it in my heart to help. It may not be much, but it is more than you had before. Fight Jordan Fight! Be strong Lesa, we share a birthday together, I know you have it in you. Let God handle the rest! <3 and hugs from NC...

 
Pink Member
 

$50.00

Deborah Johnson

18 months ago

 
 

May this money help yu to find the right dress for you to shine. I am one of little means and have shopped greatly at thrift stores and Goodwill. I actually found the dress I will be wearing to my daughters wedding at Good will $13.00. Look great and be blessed.

 

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