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  1. beautifulsoul

    Happy Birthday Amber

    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...
  2. beautifulsoul

    Transitioning from children's hospital Pittsburgh to falk clinic

    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...
  3. beautifulsoul

    Battling Anxiety and Depression

    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...
  4. beautifulsoul

    Did you always know you wanted one?

    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...
  5. beautifulsoul

    70 Yr. Old Double Lung Transplant Done

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

    What do you say you do?

    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...
  7. beautifulsoul

    Celebrating 11 years breathing with double-lung transplant

    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...
  8. beautifulsoul

    From Fear to Fearless- Are you struggling with fear?

    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...
  9. beautifulsoul

    Is there anyone else who has CF and had a parent that also had CF?

    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...
  10. beautifulsoul

    Is there anyone else who has CF and had a parent that also had CF?

    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.
  11. beautifulsoul

    How Old Were You When You had Your Lung Transplant Done?

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

    Scared about the future?

    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,
  13. beautifulsoul

    My Lungs Are Made For Breathing (poem)

    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...
  14. beautifulsoul

    Fabric antibacterial mask recommendations

    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...
  15. beautifulsoul

    Hearing Loss Awareness

    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...
  16. beautifulsoul

    10 Years with my New Kidney from Mom

    I apologize for the significant time gap. I honestly don't do much exercise. I never run. Although, I can shop for a few hours without my legs tiring, or getting out of breath. I can bring several bags of groceries up two flights of stairs to my apartment. I become slightly out of breath, but...
  17. beautifulsoul

    Vote For Me for Rare Diseases Art Contest!

    Thank you so much Suzyqz ;)
  18. beautifulsoul

    Sickness prevention while living with someone in a small area?

    Sleep in separate rooms while he's sick, no kissing, or intimacy! We use Lysol wipes in bathroom, counters, doorknobs. If he actually gets the FLU, GET OUT! Stay with family or friends until he's well. It sucks not being able to take care of him, but you don't need to risk it. You can still call...
  19. beautifulsoul

    Got new lungs

    Congrats! What an exciting time in your journey! Keep us dated with your progress. hugs,
  20. beautifulsoul

    A Conversation with Gunnar Esiason

    Hi everyone, I have a new post up on my blog, an interview with Gunnar Esiason. For those who don't know who he is: Gunnar is the son of retired American NFL quarterback, Norman (Boomer) Esiason. He is...