All Blog Posts (443)

Prednisone- Coming off of

Hi. My name is Gena and I am new to this website. What a wonferful resource to have and wish I had found it earlier. I am 16  months post and my doctors have completely weaned me off of the predisone.I just am wondering if anyone has had issues with coming off of it ,as I am experiencing some bad side effects. Every joint in my body is hurting and I am swollen in my ankles and hands. Any feedback would be greatly appreciated! Thanks.

Added by Gena on May 19, 2013 at 1:13pm — 6 Comments

My Blog (Post Heart/Double Lung Transplant & Mother )

My Blog is written at www.mommysjourneytoyou.com 

Added by Donna Ledford on May 18, 2013 at 11:21am — No Comments

Love

I am in Love with your Smile.

I am in Love with your…

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Added by Sami Hill on May 16, 2013 at 1:38pm — No Comments

Hero of Hope Megan Mobley

Megan Mobley

Megan Mobley

Stacy VandenBranden, a Heroes of Hope Panel member and CF Center nurse practitioner in Chicago, sat down with one of our newest Heroes, Megan Mobley, 25, to discuss Megan’s efforts to help fund CF research and how having the will to stay healthy got her through tough…

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Added by Hostess Risé on May 16, 2013 at 12:00pm — No Comments

Poem he sent me.

I'll never let you go.

I'll…

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Added by Sami Hill on May 16, 2013 at 8:24am — 4 Comments

Michelle's Heart walk 2013

American Heart Association Richmond Va Heart Walk 2013

This year is going to be my second year in the heartwalk trying to build awareness to heart disease and stroke. My First year was last year and it was…

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Added by Michelle Nichols on May 13, 2013 at 5:00pm — 2 Comments

Happy Mother's Day

To all our Mother's and Grandmother's

We salute you for your tireless efforts, love and concern.…

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Added by Hostess Risé on May 11, 2013 at 6:30pm — 4 Comments

Hostess Risé Blesses Us

Hostess Risé blesses us with her tireless devotion to helping with our transplant situations. It’s amazing how she can manage the website, promote organ donations, answer our queries, plus start new and interesting topics. She maintains a constant level of friendliness, joy and hope.

Our Hostess suggests that readers of her website share some of their stories; since they may help others better understand their own situation.

My case is somewhat uneventful, but here it…

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Added by Lawrence on May 10, 2013 at 6:35pm — 12 Comments

If you need a Friend :D

Okay so its Almost been 10 years since I've had my Transplant and im soo Happi about it but then I think about the kids I met who had transplants and sadly passed away shortley after having them and I feel horrible and I know I didn't know them really well but I wanna live for them and Keep hope Alive <3  If anyone who reads this ever just wants to talk of need a friend Im here , I know i don't know alot of people on here but I'll be her for anyone who needs me :D

Added by Katie on May 8, 2013 at 12:00am — 2 Comments

A Tribute in Memory of Brandon

I would like to take a moment to express my heartfelt sympathy on the loss of Brandon, son of our member Becky G.  Please read on below the tribute from Becky G and the link to an uplifting article written about Brandon.

[The Following was emailed to Hostess Risé by Beck G]

My wonderful beautiful son, Brandon left us to be with God April 15. We were all by his side for his passing and he was brave and courageous up to the last breath that he took. His final wishes were that his…

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Added by Hostess Risé on May 7, 2013 at 2:50pm — 2 Comments

Is Charity obscene?

Last week I heard of the Duchess of Cambridge's campaign for more children's hospices in the UK. On the surface, this appears a noble aim which no-one could possibly snipe at. But dig a little deeper, and the utter obsequiousness of her plea becomes apparent. For this woman has just married into one of the world's wealthiest families. Now I am not suggesting her new in-laws could possibly fund a string of hospices nationwide, but, if they were REALLY serious about helping sick kids, they…

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Added by Padster on May 7, 2013 at 12:44pm — 12 Comments

Connecting

In all situations in life connecting with others is extremely important.  Much so when you are facing any type of health related event.  It's great to know you belong to a community, or if you're not that type of a person, just having a true friend will certainly help you make it through.

The world of organ transplantation isn't easy, that everyone that belongs to this great network, knows firsthand.  But once in a while, you get a breeze of fresh air.  I'm sure many of you have come…

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Added by Maritza on May 7, 2013 at 6:42am — No Comments

New stuff

Sorry everyone have not been on here lately, have hit a few snags when it comes to my transplant. I am being told I have to finsh several weeks of Pulmonary therapy to get listed as well as take a couple of more tests, guess I was moving too fast! The aggrevation is that since I started therapy my O2 intake has been increased to 6 liters, and also had some heart palpatations, nothing serious just new. I am so ready to move on with this I am so tired, and I have had this only a year so I feel…

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Added by Ronald Rarden on May 6, 2013 at 7:28pm — 2 Comments

Overcoming Our Point Zero

Every day someone passes waiting for an organ makes me want to scream in frustration because so many go to waste.  That's why creating awareness is so important.   If you're one of the lucky ones that do get that second, third or even forth chance,  nothing words can convey will express the deep gratitude that will link you forever with your donor and donor's family. 

As June 5, comes around the corner we are getting ready to celebrate my husband's 18th transplant anniversary, not…

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Added by Maritza on May 6, 2013 at 12:30am — No Comments

I can't breathe ...

http://scottlinscott.com/2013/05/05/i-cant-breathe/

My liver transplant journey blog. Today's post is the result of a very difficult weekend with two deaths. My hope is that it will be shared to promote organ donation.

Added by Scott on May 5, 2013 at 9:02pm — 3 Comments

Isn't science wonderful?

Science is without doubt the greatest force for good on this planet. Yet we all take it for granted and dismiss scientists as boffins. But it is scientists who actually make the world a better place and benefit humanity. And they are always making new discoveries. Stem cell research has great potential to transform the world of ill-health. 

Acute Tubular Necrosis is caused by putting a kidney on ice before transplantation, yet scientists have come up with a machine which will make ATN…

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Added by Padster on May 4, 2013 at 10:22am — 6 Comments

Waiting List

I am listed at Tampa General for almost 15 months now.  I need two lungs and am type B +

They never thought I'd wait this long nor did I.  I am practically helpless.  The biggest thing I do every day is shower and then have to sit for a while…

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Added by Judy on May 2, 2013 at 11:17am — 4 Comments

And now it begins again!

The past 3 years has been very tough on me and my kidney.  I am now 22-1.2 years out with my kidney my brother gave me back in 1990.  It has been difficult from the beginning with one problem after another.  In spite of that, I have been very happy and got many things accomplished. 

I am an artist and have been teaching painting for most of my life and painting since I was a young girl.  My husband and I moved from a city to the country and found new problems.  We love where we live…

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Added by Judith on April 30, 2013 at 1:00pm — 19 Comments

My first 5k/1k

Well I did it..I've been wanting to do this long before I received my gifts. It felt so good to be there. Nobody staring at you trying to figure out what's wrong with you. Everybody was there for the same purpose...to celebrate life through transplantaion... I honestly couldn't believe I did it AND finished it..not only that but I was dancing my butt off...I walked to the garden of life and saw so many pics of those that donated their organ/organ. I met a man in the garden who was crying just… Continue

Added by BadgirlBee on April 27, 2013 at 7:38pm — 3 Comments

Sometimes You Got A Do, What You Got A Do

Living through a transplant process is overwhelming!!! Any of you that have endured this know that this is NOT an overstatement.  Sometimes you win and sometimes you lose, yet you hang in there, just hoping things will get better.…

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Added by Maritza on April 27, 2013 at 10:47am — 2 Comments

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Blog Posts

Prednisone- Coming off of

Posted by Gena on May 19, 2013 at 1:13pm 6 Comments

Love

Posted by Sami Hill on May 16, 2013 at 1:38pm 0 Comments

Hero of Hope Megan Mobley

Posted by Hostess Risé on May 16, 2013 at 12:00pm 0 Comments

Poem he sent me.

Posted by Sami Hill on May 16, 2013 at 8:24am 4 Comments

Happy Mother's Day

Posted by Hostess Risé on May 11, 2013 at 6:30pm 4 Comments

Hostess Risé Blesses Us

Posted by Lawrence on May 10, 2013 at 6:35pm 12 Comments

If you need a Friend :D

Posted by Katie on May 8, 2013 at 12:00am 2 Comments

Is Charity obscene?

Posted by Padster on May 7, 2013 at 12:44pm 12 Comments

Connecting

Posted by Maritza on May 7, 2013 at 6:42am 0 Comments

New stuff

Posted by Ronald Rarden on May 6, 2013 at 7:28pm 2 Comments

Overcoming Our Point Zero

Posted by Maritza on May 6, 2013 at 12:30am 0 Comments

I can't breathe ...

Posted by Scott on May 5, 2013 at 9:02pm 3 Comments

Community

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