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

FacebookCystic-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
  7. Crystal C June 19, 2013 at 9:45 pm

    I want to thank you for your article, Tonnya. It is informative and discusses the difficult life that CF patients deal with daily. You also pointed out something that Stasia seemed to miss – lung transplants are not just another treatment, they only become a possibility when there are no other options and the patient is in danger of dying from Cystic Fibrosis complications. I believe that The Gaurdian Express made a good decision to publish your article.

    Reply
  8. Evelyn Martinez June 19, 2013 at 9:01 pm

    That picture is of Sarah prior to transplant not while recovering.

    Reply
    • Addy. June 19, 2013 at 11:22 pm

      mm. i don’t think there have been any pictures of Sarah recovering yet. (with good reason. she was placed in a medically induced coma and from the sound of it, had a hard time with the transplant).
      best to wait.

      Reply
  9. Transplantmommy June 19, 2013 at 8:30 pm

    While I still feel that Stasia owes everyone an apology, thank you for this Tonnya. I am 32 years old with CF and had a double lung and liver transplant 6.5 years ago. My options were either transplant or death…that was it. I, of course, am one of the people who was angered over Stasia’s article, and then her follow-up. I challenged her to contact my CF center in Syracuse, NY and my transplant center in Cleveland, OH to get the facts, which I’m sure she didn’t do. Thank you for doing your research!

    Reply
  10. CF Dad June 19, 2013 at 12:40 pm

    Thanks, Tonnya. I understand that there were many “heated’ responses and while I don’t choose to call names I have chosen to call out the inappropriate statements in Stasia’s article. In all honesty her article was reckless and insensitive to CF patients and family.

    While your article is more prepared and accurately describes what all CF patients and families know to be true…it does not un-do the damage of her original article and follow up response. The resolution of Stasia’s article is to make it right! The real challenge is if any author, in this case Stasia Bliss, offers inappropriate and dangerous information then what prevents the continuation of these types of articles for CF or any other disease.

    I don’t disagree with you on the emotional and some hostile comments but I would offer that the responses which you feel are “over the top” can provide you and Stasia how the CF patients and families felt reading the article.
    Thanks for your efforts.

    Reply
  11. CFHusband June 19, 2013 at 8:17 am

    Thank you for doing your research. I am one who has publicly and privately criticized Stasia Bliss for her article (and her equally sorry follow-up response), and I have challenged her here on the Guardian Express website and on her public Facebook page. I appreciate that you attempt to discuss the damage that Stasia’s article could cause, and I would like to add a few thoughts of my own.

    There is already enough destructive misinformation about Cystic Fibrosis and organ transplantation out there. Stasia’s article only added to that. Too many people are not organ donors because they have read and believe the myths about organ donation and the diseases that lead to needing a transplant. The fact that Stasia not only did not do her research before writing her initial article, but also defends her ignorance and irresponsibility in her responses and patronizes and belittles those who have challenged her is proof that she is more interested in her opinion than the facts. I would have little issue with Stasia’s article had she reported the facts correctly and simply offered her own ideas as an ADDITIONAL option for caring for one’s body.

    People like Stasia are IRRESPONSIBLE and DANGEROUS. “News” websites that allow people like Stasia to share untruths as factual are also IRRESPONSIBLE and DANGEROUS. Stasia’s article has the power to deter people from being registered organ donors. It has the power to cause people to reconsider contributing to organizations like the Cystic Fibrosis Foundation and their search for a cure for diseases like CF. It has the power to cause irreversible damage to any CF patient who is duped into believing Stasia’s claims of “alternative” treatments.

    Shame on Stasia, and shame on the Guardian Express.

    Reply
  12. CFdad June 19, 2013 at 5:55 am

    Thank you for your pursuing information about Cystic Fibrosis!

    However, the overwhelming response towards Stasia Bliss’ article is not about disagreement over Yoga or using natural supplements to improve over all health. The challenge with the article is factual inaccuracies, gross misstatements and lack of any credible research…all while challenging the reader to “just do the research.”

    To state that readers want to “crucify” her over “suggestions” is not necessarily valid. The author specifically states “Lung transplants may in fact not be the best option for cystic fibrosis” and provides advice that is medically inappropriate to the condition.

    Stasia clearly did not understand the subject matter, avoided accountability and blamed the reader. Adding injury to insult she offered an article, in her defense, of a young woman with CF claiming “she overcame CF – largely with natural remedies.” Which is untrue, the woman in the article used Reiki and combined natural remedies with her CF regimen and specifically states she uses traditional medical protocols.

    While certain responses were inappropriate the over riding issue is not disagreement over the very real benefits of yoga nor the value of natural remedies…the disagreement is over accuracy, valid research and understanding of CF.

    Reply
    • Tonnya Marisse June 19, 2013 at 6:46 am

      Greetings CFDad, thanks for your reply. Many of the initial responses were inappropriate, and so emotional that they credit the author with statements she did not in fact make.
      The above response is a direct aim at Stasia Bliss’ claim that alternative medicine can replace the lung transplant option, and is sometimes a better choice. I argue that the two are not comparable, and that alternative treatments belong alongside the early stages of treatment.

      Reply
      • Raging Itch June 22, 2013 at 3:01 pm

        Do you know what they call “alternative treatments” that have been proven to work to repair a health condition?

        Treatments

        Reply

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