Recent content by beautifulsoul

Last Friday was my 27th birthday. I wake up everyday and still can't believe I'm alive. I didn't think I would live past my 15th birthday and here I am, 11 years later, surviving with a double-lung and kidney transplant. I'm so thankful for the support of this website and all the opportunities...

Hi Jshet- I just transferred to UMPC about a year ago. I'm not sure where they got that information from. I have had my dad go back with me during my appointment. The only place they will not allow anyone else besides the patient is the PFT lab room. You should have only one doctor unless...

I've been dealing with anxiety and depression for several years now and during this latest bout I decided to try something new- "depression art" I've attached my work. I also wrote a blog about what it feels like living with depression- Another first for me. I was scared to tell people how I...

I never did want one, however, it wasn't my choice to decide that. I was a minor at the time. My parents decided for me. Although, I'm really blessed I did not have that choice. I have been alive for 11 years because of my parents. I still have bad days, but on the good days I praise God for his...

Congratulations! I wish you good health and happiness from here on out. Transplantation is truly a gift. God is good! Love and Hugs,

ugh, I hate this question too! It always reminds me of this terrible disease that robs us of so much! Do you have any hobbies? I try to make it sound like my hobbies are my job, or at least make it sound like I do something rather than nothing at all. I have a blog, and I say "I'm a writer" I...

Hello friends! Another anniversary in the books today! I am officially in my second year of the double digits! I typed up a timeline of my journey on my blog. SMALL EXCERPT: 2004 I am twelve years old when I lose my hearing from ototoxic medication. Over a period of one year, suddenly I am...

I know a lot of us struggle with feelings of fear- especially those with CF. Fear of death, fear of the future, fear of failure. I wrote all about the topic of fear on my blog. SMALL EXCERPT: Everyone experiences fear at some point in their lives. Overcoming addiction, near death experience...

She's in her early 50's. She does take the enzymes because of her GI symptoms. Her lungs are completely normal. She has unrelated heart issues. I guess I just can't fathom her being diagnosed at her age after absolutely no symptoms until recently. It's incredibly odd to me, but I'm sure there is...

I have CF and my mom who has been showing symptoms only the past couple of years was just diagnosed not too long ago through two sweat tests. She has one copy of DELF508 and the other is unknown. Because of the unknown gene I am still skeptical of the CF diagnosis.

I had my transplants when I was 15 years old. I'll be 11 years post next week! I am blessed beyond measure! <3

I'm not in the same position, but no, you're not wasting time. Continue to go for what you want in life. You can't predict the future too far ahead. We wouldn't get anywhere if we kept saying, "what if" hugs,

I wrote this poem, which represents the different stages of my life. Over the past several years, I’ve struggled to accept the circumstances after my transplants. I went from living a semi-normal life, to dying, to living again. I used to constantly worry about becoming sick again, my lungs...

Yes, I wonder the same thing. I found what Ratatosk was referring to: In response to questions about the use of Vogmasks by people with CF in clinical settings, please note that these masks are NOT approved to protect against the spread of pathogens in the clinic or hospital setting. These...

Hello Readers, I lost my hearing 15 years ago from an ototoxic medication, Amikacin. I wrote all about my journey on my blog. Feel free to read and share. The Gift of Sound Part 1 The Gift of Sound Part 2 Since this incident, my local hospital has been performing hearing tests before...