Why Lung Transplants are the Best Option for Cystic Fibrosis Survivors

Fellow writer Stasia Bliss wrote an article recommending alternative health practices as a viable option over lung transplants for cystic fibrosis patients.  The article quickly provoked readers comments, most of which were quite angry, outraged even.  Stasia Bliss’ argument was clearly stated and even followed up with another article responding to the readers. That only added gasoline to the fire. Like they say, if you can’t take the heat, get yo butt out the kitchen, well now’s a good time to do just that unless you have fire fighting experience, or just like it hot…

I immediately had to discover the reason behind the controversy, and then decide which position I would support. I have chosen to argue in favor of lung transplants being the best option for cystic fibrosis survivors and these are my reasons why.

Who in America has not been affected by a friend or family member with a chronic illness? How many people do you know that haven’t lost a friend or family member to some of the well known diseases? Lower respiratory tract infections kill more than 4 million people a year, COPD is estimated to be the third biggest killer in the world by 2020, and heart disease is still the number 1 illness affecting americans, with 31.5% fatalities in women every year, and accounting for a quarter of the male population.

For those readers who do not know much about cystic fibrosis, let us go over a few fast facts:

  •  According to the Cystic Fibrosis Foundation, the genetic illness affects around 70,000 people worldwide, 30,000 Americans.
  • The disease is known to differ in degree when it comes to severity of symptoms, and each day is unique in that it can be a flare-up or a remission.
  • On a typical day, a CF patient takes pnacreatic enzymbe supplements with everything they eat, take multi-vitamins, perform some type of inhalation therapy, at least once but often up to four or more times a day, take special medicine through inhalers or through a nebulizer

Obviously, there’s a lot going on here, and certainly there isn’t a writer here at the Guardian Express who would minimize the extreme effort and dedication it takes cystic fibrosis patients and their families to maintain a relatively happy life. I do not have cystic fibrosis, however,  I am a human being, so is Stasia Bliss of the original article “Lung Transplant May Not Be Best Option for Cystic Fibrosis”, the author many of you wanted to crucify because she recommended seeking alternative methods of health care treatments before electing for lung transplants.

Is it necessary to have suffered a particular illness to be able to empathize and understand what it means to suffer? I’ll let the readers answer to themselves.

What I will answer is the benefits of lung transplants and why they really are the best available option for cystic fibrosis survivors.

First, it’s important to understand that not every patient with cystic fibrosis is eligible to elect this treatment, the defining factor for lung transplant eligibility is deteriorating lung function.

Lung transplantation is the therapeutic measure of last resort for patients with end-stage lung disease who have exhausted all other available treatments without improvement. (Wiki)

Secondly, there is a shortage of available lungs, which means there are waiting lists, and people with other illnesses competing for the same short supply. However, the procedure offers such a strong chance of extending life and improving it’s quality, that a Philidelphia District Judge recently ruled to overturn a lung transplant allocation policy that prevented children under 12 from receiving adult lungs.

Sarah Murnaghan lays next to her adopted sister Ella recovering from her lung transplant operation

District Judge Michael Baylson passed the ruling, June 5 that Sarah and 11-year-old Javier Acosta of New York City should be eligible for adult lungs. Sarah was gravely ill when the ruling came down. Surely, advocates of alternative health can recognize the limitations of their remedies in situations where the disease has advanced beyond the body’s capacity to regenerate on it’s own?

And success stories from people like Margaret Benson, who in 1999 received a double lung transplant, and has gone on to participate in four World Transplant Games and three National Transplant games, holding two world records and is national record champion in race walk and 200m sprint; for her age class.

Margaret Benson, Double Lung Transplant Recipient, 1999, Winner and Participant in World and National Transplant Games, Winner of Courage to ComeBack Award

Margaret Benson Double Lung Transplant Recipient 1999 ~ Winner and Spokesperson

Margaret Benson’s motto of determination against all odds is “no matter what happens, believe in your dreams, believe in yourself”… and surely she is a living example of what that means. When Margaret Benson was first diagnosed with the illness she was 14 years old, and back then, life expectancy was 15 years. There’s been great strides obviously due to modern medicine as many survivors of cystic fibrosis reach into their thirties and later.

Margaret knew she was meant to be a teacher, so she became one in her twenties. She was in her thirties when her lungs began to fail her, and she elected to have a transplant. Due to her rare B+ blood type, she was put on a waiting list; during which time she became so frail she could no longer go to school with her oxygen tank behind her. This time she had to rest and wait. The double transplant happened in 1999, and she suffered a seizure and stroke following a subsequent operation, but even that didn’t stop her resolve to live and live to her best ability. She went on to compete in the World and National Transplant games, winning gold and silver medals, but her success isn’t about ego.

She participates in the games to show donor families what a remarkable difference their loved ones have made to recipients and to promote organ donation (she loves to give away her medals to donor families in attendance), a cause she’s very passionate about

That commitment to educating and inspiring others was recently recognized.

In summary, lung transplants are not common procedures for most cystic fibrosis patients, and are reserved for those whose lungs are quite literally failing them and their lives are at stake. Keeping those conditions in mind, it is somewhat ludicrous to assert that essential oils and yoga exercise are relative comparisons at this stage of the disease.

In fact, the alternative therapies mentioned are most likely a compliment to an already established medical protocol, which can help prevent the disease from progressing that far. However, that is still a theoretical concept as Stasia Bliss did not address that statement or provide clinical research that supports even that much of a presumption.

Established pharmaceutiful options and treatments have proven effective in extending the life of cystic fibrosis patients. It is rare now for children to need a transplant because survivors are living longer with the condition.

Treatments for the genetic disease have improved so much over the past decade that patients live much longer before their lungs start to wear out.

Survival rate for transplant recipients is 50% after 5 years, so it still does not offer a cure, and is an extremely major surgery which patients have to be qualified to enlist. For those than can and must endure such serious surgery, it makes good sense to choose this path.

People like Margaret Benson are perfect examples of what the body can do when there’s a strong will and mind to work with it. Until the wholistic field of medicine can produce research and studies showing and proving their effectiveness and claims, lung transplants are the best option for cystic fibrosis survivors, because they provide the best opportunity for the eligible patients to get a second lease on life.

Margaret Benson, Courage to Come Back Award, Cystic Fibrosis, Double Lung Transplant

Margaret Benson Courage To ComeBack Award

 


CTV NewsU.S Girl 10, recovering after adult lung transplant

CTV NewsNew Lungs Are Not A Cure For Cystic Fibrosis Reminds Doctors 

Cystic Fibrosis of CanadaAbout Cystic Fibrosis: How Does It Affect Daily Life?

Cystic Fibrosis of CanadaCystic Fibrosis and Lung Transplantation

Facebook – Cystic-Fibrosis-Canada-Hamilton-Chapter

Northshore Outlook - Coffee With Margaret Benson – A Lesson in Courage

16 Responses to Why Lung Transplants are the Best Option for Cystic Fibrosis Survivors

  1. CF Dad June 21, 2013 at 4:00 pm

    Unfortunately, Stasia Bliss repackaged her original op-ed with the hopes of disquising the misleading and dangerous behind a few facts about CF. You can check it out http://guardianlv.com/2013/06/cystic-fibrosis-a-brave-world-of-hope/. Any repair Tonnya has attempted as just as quickly been undone.

    Reply
  2. GeorgeL June 21, 2013 at 3:01 pm

    Hello Tonnya, as a C.F. induced lung transplant recipient, I would like to thank you for your critical article in response to your colleague’s opinion article-a difficult situation for you to be in I am sure. I would have liked to read Ms. Bliss’s article, however it seems to have been removed from the on-line version. Taking the information from your article that was paraphrased from Ms. Bliss’s, I am more than surprised that the editorial staff would allow the previous article to be released in the first place – as you are obviously aware, all sources are not equal and I know of no creditable source that would ever suggest oils and yoga over proven and effective medical procedures. However, it now seems that things are set right by your article and I would like to express my appreciation to you. Best regards

    Reply
  3. Audrey June 20, 2013 at 3:52 pm

    What CF Husband said, Spot on.

    Reply
  4. Chloe - Proud PWCF! June 20, 2013 at 4:56 am

    Our initial responses are NOT inappropriate, if Stasia Bliss has the freedom to publish her personal opinions then we have the freedom to respond with our personal opinions too. It as simple as that. Do not belittle our emotional connection to her article as it is personal to us. Put yourself in our shoes, it would be like if someone wrote an slandering article about your race or about your family. Also that article changed so many different times since she first published the article online, so there may have been statements that she originally made and then recanted due to negative feedback.

    Thank you for your article as it argues exactly what we were trying to explain to Stasia Bliss.

    But I do not appreciate you making us out as the “bad guy”. When a whole communities feelings about the is unanimous, doesn’t that make you stop and think?

    Our issue is not with you and again we appreciate your article and we also appreciate the removal of Stasia Bliss’s first article, but this doesn’t change the fact that we haven’t received an apology and it doesn’t excuse her new article, which is just as bad as the first. She hasn’t listened to anything we have said, she needs to be able to admit she is in the wrong and back away from the CF subject.

    Reply
  5. kswitch June 20, 2013 at 1:49 am

    the initial statements were only as inappropriate as the initial “article.” and while your article has more thought put into it, it’s still lacking research. congrats, you talked to ONE person with cf. that’s more than miss bliss talked to. but you still cite friggin’ wikipedia, a source that ANYONE can edit, including a citing author. public grade school has higher standards. but i get i. it’s hard to find credible sources when the same wiki only gives you 133 leads.

    you’re still basically blaming the reader while trying to validate your “fellow” writer. a writer that clearly has terrible journalistic standards. then again, it’s not like the guardian express is a credible website. at least wikipedia can admit when it’s wrong.

    Reply
  6. you also might find some research into Kalydeco (aka ivacaftor) worth your while. :-)

    there is another medication in the middle to late stages of development called VX 809 that may be used in combination with Kalydeco (if it works- fingers crossed!) for CFers with the most common genotype.

    i’ve placed a short video in the “website” section of the detail section.

    it could change everything!!

    Reply

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