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Crystal Ellenburg, mother, wife, sister, aunt and daughter, is in need of a double lung transplant and will need the help of our community to make this possible. This procedure will be lifesaving but also very costly.
Diagnosed at three months with cystic fibrosis, doctors told Crystal’s family that she wouldn’t survive to see the age of 18. With her amazing strength and perseverance, she defied the odds and proved them wrong but this genetic lung and pancreatic disease has taken its toll on her. Much of Crystal’s time is taken up with daily lung treatments, hospital stays, and preventive care. At age 31 one she struggles to keep up with her family and daily activities but Crystal’s determined to persevere for her family. Without this procedure her time will be shortened and she’ll miss out seeing her three kids grow up. CJ (13), Peyton (7), and Chase (6) still need their mommy and rely on her daily.
Even with insurance, undergoing this procedure will be very costly. Expenses like co-pays, new anti-rejection medicines, travel, parking, pre-transplant care and home expenses while being out of work will become overwhelming. Already, the bills for pre-transplant care are piling up.
We have chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact HelpHOPELive at 800.642.8399.
Any and all support is critical during Crystal’s time of need. On behalf of Crystal, her family (pictured being goofy above!) and close friends, thank you for helping her during this time of struggle.
Today I am 8 months post-transplant. I am doing well with a few minor setbacks. I take a lot of medicine on a daily basis and need to start exercising to work out my lungs. I currently have a gym membership but hardly have but the time to go. I still struggle everyday with the idea of what I went through, it's hard to imagine and it's hard to believe. But I keep trying every day, but what do they say, the struggle is real.
On November 13,2016 at 7:15 roughly in the morning my phone rang and at that hour who wants to answer the phone ? It was Sunday and I was trying to sleep in a little as I had been feeling rough. So i did not answer the call. Next I knew I heard my husbands phone ring and he didn't answer, at that point I knew it was for me and I needed to get up. Next i knew, my phone was ringing again. Y^es. this this time I answered it. The nurse coordinator did her spew telling me there was a pair of lungs and that I was second in line for them but they do not think the first canidate will be able to get them. At this point she told me to head to the hospital and get prepped in case. So, I woke up my husband and dad and said it was time to go, that I could be getting new lungs. After 45 minutes we were headed to the hospital. I didn't know how to feel or what to think, I was numb. Half way there I got a phone call from the nurse asking how long it was going to take that they were ready for me. And yet i was still numb. We were only 10 minutes away, and they wanted me to skip registering and come straight to the floor for the operation room. At this point I wish some feelings would have came to me but I guess the reality of the situation was not sinking in. Once we got to the hospital they had several people come talk to me and sign consents and then they were wheeling me down the hall to the operating room. There was little prep time in the room that I remember and then it was off to sleep I went. The next thing I remember is waking up in recovery the next day around 2 and even things are fuzzy. I was ICU for 5 days and allot of med adjusting, testing, doctors, nurses, an allergic reaction and imagining things. Yes, at one point I imagined that my kids were there and were objects around the room. Once I was moved to the step down units, things got better and i could move around and have some freedom from some of the tubing I was connected to. After 4 days, 9 total I was sent home ready to lead a new life that now consists of a strict medicine regimen,allot of sleep and healing, discomfort that is getting better daily, and several restrictions that are slowly going away. At my last doc appointment things were looking good, my PFT's have over doubled from before the transplant to 67% from 29% at my lowest back in October. Breathing is getting easier and I can do more walking, talking and independent activities that I previously needed help with or avoided!
My mind is just rattled. I just read a heart wrenching blurb from a girl who had cystic fibrosis like me and she made some very valid points in her blurb. I have grown up knowing CF as a killer. I have hidden it, denied it the time of day and have spurts where it is my day. I have been in and out of hospital and home on ivs more times then I counted. I'm stubborn when it comes to this disease but yet I have beat the statistics. The one that says the median age for survival now is 27 as opposed to 18 when I was born. But yet I'm facing the end with out a transplant. As we all know I'm listed and that is more what structures my days meds, sleep, weakness, pain, and travel limits. Here it is summer and I've barely been anywhere because of my limitations. What makes it hard is I'm missing precious time with my kids and family because I can't deny them the luxuries that I have to miss out on now. Is it my fault or is it the diseases? Hard to say since it's progressive I could be in the same predicament even if I was perfect with the meds. But as the other spoke she spoke of living the life of CF and her friends. I am blessed with very supportive friends when I'm around and available to do stuff but they don't live the disease like I have too. They barely know my treatments and daily routines. I guess I'm feeling a little less fortunate then her because she has that circle who have been there by her side learning her life and me I have the ones who know the life like a text book and that's the extent. They don't go through my emotions with me and I can say except a few I feel alone when it comes to hospital time. I do live my life and more recently I'm learning the limitations that I have had to accept as I'm progressing but my biggest fear is losing my self even more to point I lose the circle of text book friends so to speak. I know I have a select few who do anything to try and support me but like she said how many can say they know what it's like to live with it. My kids are my life and I am fighting for this life to be there for them cause how can I love them to the moon and back if I'm not here. They live the life of CF with me they help me with meds of all sorts and remind me why I'm fighting. I'm trying to stay positive, I'm trying to fight but how much can one do and stay positive while doing. I won't allow it to consume me but there are times it be easier to give in. I have been reaching out trying to go out of my comfort zone and seek what I feel is missing in my life. But I'm not quite sure I even know what that is.
I had my first call today for potential lungs but by the time I was able to head to the hospital they called back and told me one of the lungs were no good and would not work for me. Feeling really disappointed even though I didn't even expect a call for a few more months. I feel like I am just ready to get it over with and move forward. I'm trying to keep my head up so to speak but it is hard. Anyways back to the waiting game!
Yesterday I went to the CF doctor for an ill visit. Just like I suspected my lung function dropped and I lost 2 pounds. My lung function is now 26.6%, so back on i.v. antibiotics for the next two weeks. While at the doctors I also received the notice that my official list date was yesterday and my insurance finally approved the procedure. Now it is just a waiting game. People keep asking how I feel about it. Well I am not really sure I am kind of glad that I am one step closer to feeling better and having energy again. On the other hand my head is full of emotions, yes, this is scary all around but I try not to think negative and stay positive.So for now, I am ready for this to happen!
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Crystal you have been like a little sister forever. Don't know you too much anymore, but you know I've always been there for you if you needed me. Love you girl. You are a strong women and I'm praying a speedy recovery for you, and peace for your family through all this.
Deborah Eloise
You are the strongest woman I know, and a great example of a loving mother,and aunt, I am so proud of all the things you have accomplished, you have always been there for me, I couldn't ask for a better sister, or friend, I love you more than words can say
Carrie
Stay strong and keep smiling love.
Christina M.
Crystal, You are in my thoughts and prayers. As you know, I'm grateful that you are in my daughters life.
Yvonne Heinlein
I love you Crystal we can make it
Lorraine
I love you stay strong you got this
Chris
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Help Hope Live
Note in memo:
In honor of Crystal Ellenburg
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Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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