Thursday, November 28, 2013

Giving A Face To Organ Donation: Whitney's Story...

How many times, while getting your driver’s license, have you blindly checked that infamous box “be an organ donor” and if so, do you even know what it really means?” It goes without saying that there are 1000’s of issues that plague this world daily, sending constant fear into the hearts of people everywhere and I apologize for bringing light to one more, but knowledge is power. Today, I will be sharing a story and information on a subject that is near and dear to my heart because it greatly affects a family who I hold in high regard and love. I am also sharing this because this subject affects millions of families every year. I don’t have a huge a platform to speak from, but I do have a small one through my articles, my blog, and my readers and to not to, I feel would be irresponsible on my part. My hope is to provide many with knowledge about what organ donation is, some statistics surrounding it, and why it is so very important to me.

For those who are unsure of the overall process of organ donation or even what it really is, we will start with the actual definition and move on to the steps. Organ donation occurs when an organ or a part of an organ is given to another person for the purpose of transplantation and this can be done after the donor has passed away or while they are still living. In order for an organ to be considered viable, blood and oxygen must continuously flow through it until the time of recovery and immediate implantation. When speaking of a deceased donor, this will require that the donor passes away under circumstances resulting in irreparable neurological injury, usually from massive trauma to the brain such as aneurysm, stroke, or automobile accident. Once all human efforts have been made to save the person, tests will then be performed to confirm the absence of all brain or brain stem activity. If official brain death is declared, they will then begin to look into whether or not donation is a possibility. The state donor registry will be searched to determine if the patient has personally consented to donation, but if the potential donor is not found in the data base, the doctors will speak with his or her legally authorized representative (a spouse, relative, or close friend) and offer the opportunity to authorize the donation. If an official donation decision is established, the family is asked to provide a medical and social history so professionals can determine which organs would be suitable or transplant as well as making the decision on how to allocate all viable organs according to who is on the waiting list. Deceased donors have the possibility of providing kidneys, pancreas, liver, lungs, heart, and intestinal organs. For living donors the process is obviously a little different and I have provided a link at the bottom of a webpage on how to do that. Living donors have the potential to provide one of their kidneys or a portion of the liver, lung, intestine, or pancreas.

Although we clearly have made advances not only in the medical field, but in the area of donation, the problem of eye and tissue donation vastly exceeding the number of donors available, has not changed or advanced. Here are some current statistics in regards to organ donation.
  • More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.
  • More than 120,000 men, women and children currently need lifesaving organ transplants and approximately 1,851 are Pediatric Patients*
  • Every 10 minutes another name is added to the organ transplant waiting list.
  • An average of 18 people die each day from the lack of available organs.
  • In 2012, there were 14,013 Organ Donors resulting in 28,052 organ transplants and more than 46,000 corneas were transplanted.
  • 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.
  • Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist.
It also doesn’t appear to matter how many efforts are continually made towards public education, the misconceptions and inaccuracies about donation still persist. So I feel it is important to try and do away with some of the myths:
  • Anyone can be a potential donor regardless of age, race, or medical history.
  • All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.
  • If you are sick or injured and admitted to the hospital, the number one priority is to save your life, NOT to get your organs.
  • Organ, eye and tissue donation can only be considered after you are deceased.
  • When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, NOT your financial status or celebrity status.
  • An open casket funeral is possible for organ, eye and tissue donors.
  • Through the entire donation process the body is treated with care, respect and dignity.
  • There is no cost to the donor or their family for organ or tissue donation.
I truly feel that it is easy for us to provide ourselves with excuses as to why we don’t get more involved and/or choose not to, when all we have is numbers to look at, for where there is no face or person, there are no feelings or connection. The girl in the title of this article is a young lady as well as her mother, Vanessa, are two people I pray for every day.  Whitney has Cystic Fibrosis and has since the day she was born. Though she was not diagnosed until she was 5 months old, it made the uphill battle her mother and herself were about to face no less enormous.

Cystic fibrosis affects the body's ability to move salt and water in and out of cells. This defect causes the lungs and pancreas to secrete abnormally thick mucus that blocks passageways and prevents proper function. This disease affects approximately 30,000 children and young adults in the United States and 70,000 people worldwide. Most children with CF are diagnosed by age two and many symptoms of CF can be treated with drugs or nutritional supplements. Close attention to and prompt treatment of respiratory and digestive complications have dramatically increased the expected life span of a person with CF. When a great deal became known about this disease in the 50’s children rarely lived past age 6, but today about half of all people with CF live past age 37, with the median life span expected to increase as treatments are improved.

Whitney has sacrificed more in her short life than most people do in their entire lives. She missed out on a great deal of school while growing up due to her illness and overall missed out on being a normal kid. There were no sporting events, dances, sleep overs, parties, school clubs, and all the other things that children typically partake in to create memories throughout their academic career. While other children were getting to enjoy being young and having no worries, Whitney was left with no choice but to grew up pretty quickly as well as to worry about very adult problems. She spent most of her high school years homebound and had a teacher come to her house so she had some hopes of graduating high school. Whitney was able to graduate and was lucky enough to get to attend her senior prom, however most kids probably do not do so while pulling an oxygen tank.

Vanessa is Whitney’s mother and has been a single parent Whitney’s entire life. If you had to think about the most stressful or worrisome event in your child’s life, what would it be?  Imagine facing every new sunrise with no other option but to wonder how many more days your child was going to be with you? And to those people who actually do face that reality, but for a different reason, I by no means want to lessen their struggle or pain. Vanessa has supported Whitney as a single parent, always working, always being her cheerleader, always being there ready to help and assist with whatever she could. Countless doctors’ appointments, endless stays in the hospital, and an ocean of medication. Being a single parent is a hard enough job, without having the added daily strain of trying to keep your child alive.

Whitney was fortunate enough to receive a double lung transplant on March 12, 2011. However while she is extremely thankful for her gift, there is no denying the cost of a surgery of this magnitude. The out of pocket costs her mother endured for housing, food, and medicines, during and directly after the transplant, was over $20,000 dollars. There is also the uphill battle of insurance. Since Whitney was diagnosed at 5 months of age, health insurance would consider it a preexisting condition and therefore have always been reluctant to help if not refusing flat out. Whitney has been able to get Medicaid, but due to the extreme costs of maintenance and medication, they consistently work towards finding reasons to cut her benefits off. The medications run in excess of $50,000 dollars EVERY MONTH and luckily Medicaid does cover the bulk of the cost, but it is also a gamble every month waiting to hear what they will cover and what they won’t as well as whether or not they are cut her off. Regardless there is out of pocket expenses that are endured every month and when you are unable to work, how exactly do you come up with that money? Whitney is only 22 years old and she has had to give up the opportunity of going to college, hanging out with friends, having a social life, having a job/career, and children of her own is not a possibility either. In fact, most days she remains confined to a house because she can’t be around crowds of people for fear of catching a really terrible cold or even worse, the flu! How many people have to fear getting the flu because it could literally kill them?

So where does Whitney go from here? To the same place she has been going, to the church to pray. The doctors say that transplanted lungs usually last around 10 years and of course Whitney and her mother are hoping she will not only be in that group, but that she will have a lifetime. The future will also hold a need for a kidney transplant due to the anti-rejection medicine she is required to take every day and her live is damaged due to her CF, which while common, will also require a liver transplant as well.

The plain and simple truth is Whitney and all others suffering from the need of an organ deserve a life and opportunity to have something more than doctors, hospitals, surgeries, and endless medication. She deserves a fun, she deserves love, she deserves memories, and more than anything, she deserves help which she is in great need of. The tremendous cost of her medical treatment has forced her mother to sell almost everything she owns and Whitney has been forced to move to another state where she could get better medical care. Sadly she had to do so without her mother.
As I stated in the beginning, I don’t have a large platform, but I do have one and this beautiful girl needs some kindness. The family has hooked up with a web-organization that allows people to start fundraisers in the name of whatever cause they are fighting for. How it works is you go the link provided below for “Whit’s Love”, you donate $20, and you not only get a t-shirt in return, you get to help save a life and after so many t-shirts are sold, the organization will donate additional sums of money to help Whitney!!! That’s it, that’s all you have to do. Some of us spend more than $20 in a week on coffee and this will be used to provide life-saving medication for an incredibly strong, remarkable girl who never complains, never says an ill word about anyone or anything, never demonstrates anything but appreciation for the things and people around her. In return she is only asking for one thing…a chance to LIVE!!! Please help give her that!

https://www.booster.com/whitslove

If you would like additional information on how to become a donor and/or organ donation, please visit:
http://organdonor.gov/index.html
http://www.unos.org/


“We make a living by what we get. We make a life by what we give.”







 



 

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