Kidney Cutie

April 23, 2012

We're hurtling further and further from T-Day aka Transplant Day (February 21, 2012). Ashley and her donor sailed through surgery and are both doing well. (Read Jeremy's story here.)

Unfortunately, though her kidney issues are resolved, Ashley has still been hospitalized several times since the transplant -- and has been in the hospital for a week now. Doctors can't figure out what's wrong, but she has been dealing with intense abdominal and intestinal cramping as well as C. Diff, lethargy, and -- most recently -- a recurrent fever.

The cramping and other intestinal stuff is straight Cystic Fibrosis. People often forget that CF is only 50 percent respiratory. The other 50 percent of the disease affects the digestive system. The fever is bad news all the way around as she's immuno-suppressed. Hopefully her medical team gets her fixed and home soon!

Your thoughts, prayers, well wishes, good vibes, good juju, etc are much appreciated! To stay updated on her story, follow the Kidney Cutie page on Facebook.

February 2012

Many people know that we are currently fundraising for my sister's life-saving kidney transplant. This page should serve as resource for those who'd like more information about her condition, the status of our fundraising, and all other transplant/health-related stuff. (Check out our FAQs.)

If you have a question that isn't answered here, please feel free to ask it via email! Stay updated on her fundraising progress and needs at Kidney Cutie on Facebook. Donate to her transplant fund here.

Team Cutie held a spaghetti plate sale for Ashley on Nov. 18 in Sanford NC. The tally for that event is $4,000!!! Thank you all and please keep spreading the word. Between blogger support and hometown support -- Ashley may get a five-year plan after all! (Note that this amount will be deposited into Ashley's local COTA account and then transferred over at the end of the month. It will not be reflected on her donation tracker page until then.)

My previous posts about Ashley's transplant journey:
Other bloggers' posts about Ashley:
Frequently Asked Questions

Q: What illness does Ashley have that requires a kidney transplant?
A: Ashley was born with Cystic Fibrosis. She had a double lung transplant in 2001 that requires she take some high-powered immunosuppressants and anti-rejection medications. Those medications have destroyed her kidneys.

Q: Why can't Ashley go on dialysis like other patients in renal failure?
A: Ashley's renal health is directly tied to her respiratory health. Several years after her first transplant, Ashley went into chronic rejection, which is managed by medications. Rejection can take all forms; Ashley's is vascular, which means her veins often refuse to carry blood into her tissues. Those veins must remain healthy, and many of them come from the renal system. If Ashley's renal system is allowed to fail and she becomes dependent on dialysis, her lung health will also deteriorate -- making her ineligible for another lung transplant. Without the eventual lung transplant, Ashley will not survive.

Q: If Ashley will need another lung transplant to survive, why should anyone spend the money on a kidney transplant?
A: Ashley will need another lung transplant because every transplant patient with a chronic disease (such as Cystic Fibrosis) will eventually need a second transplant. Transplanted tissues suffer from wear and tear at much faster rate than native tissues. When Ashley received her first transplant, everyone was fully aware that eventually she'd need another one. The same goes with this kidney. If she gets one now, she will most likely still need another one in 10 years or so. That's the nature of transplantation.

Q: What has Ashley done to slow down this process?
A: Most people find out they're sick and expect their sickness to cater to them. They don't want to give up smoking or drinking. They don't want to adjust their diet. Ashley is the opposite. She doesn't smoke or drink. Every time she is told to stop doing something or start doing something, she hops to it. For instance, she's gluten intolerant and so she stopped eating all gluten. She became medically diabetic and so she stopped eating refined sugars and high-carb foods. Then her kidney health deteriorated so she cut out high-potassium and high-phosphorous foods. She's the most compliant patient you'll meet in your lifetime! This has definitely bought her more time, but the window of good health has closed. There's not much more she can control through lifestyle changes.

Q: What is Ashley and her family doing to raise money?
A: Ashley's family has been fundraising for her for several months now. You can see past fundraisers and upcoming events on her COTA web page, which is updated often.

Q: What is COTA?
A: COTA stands for the Children's Organ Transplant Association. Ashley used this nonprofit when she began fundraising for her first transplant (double lung). When she began that process she was 17, though she didn't receive the transplant until February 2001 (age 20). She is now in COTA's system for life, making it easier to start fundraising again using this organization rather than try to find another reputable one.

Q: What happens to funds collected for Ashley, should the worst happen before they can be used?
A: Should the worst happen and Ashley be unable to use the funds in her transplant account, they will not be disbursed to the family or anyone else. The funds would be signed over to COTA for use with another patient.

Q: Ashley has one more appeal to attempt to secure funding. Where does that stand, and what does it mean for contributions made in her name through COTA?
A: Should Ashley’s final appeal with Medicaid yield a positive result in her favor, she still requires $50,000 of money in the COTA account as her contribution to the surgical costs. At this time, she is far from that amount. Any excess over that amount would remain earmarked for any future transplants.

Q: Will I see my donation reflected immediately in the balance on Ashley’s page?
A: All monies collected through online donations are reflected in the online balance on Ashley’s page. Funds collected online are reflected immediately in Ashley’s balance, as soon as your online donation is processed. Monies collected through checks or fundraising activities are reflected when the checks and money orders are received and cleared by COTA in Ashley’s name.

Q: What if I have additional questions about COTA, Ashley, or anything related?
A: COTA is happy to answer any questions you might have. You may contact COTA directly online, by calling 1-800-366-2682, or access Ashley’s page at www.cotaforashleyq.com. You may also contact me via email.


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