My Son had an appointment yesterday with his pulmonologist. She said that his lung function went from 60% to 53%. She did not seem that concerned and said he can still have his heart surgery on May 2nd.

 She wants him to go for a sleep study though to see if he needs a breathing machine at night. 

 Needless to say, I am terrified. My thinking is if your lungs are only operating at half their intended function, that cannot be good. 

  Am I just overreacting? Every little thing these Doctors tell us just freaks me out. I cannot relax at all....ever. 

 Does anyone else here know anything about lung function that could explain in easier terms then how the Doctor did?

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Hi Sherri my name is Richard Darienzo i am 33 with Duchenne.  My lung fuction has been around 15% to 25% for 8 to ten years. Also remember no one Duchenne or otherwise uses there full lung capacity.  Only when your doing strong physical work does anyone use their full lung capacity. So just sitting and doing basic tasks wont really tax his body with lung capacity above 50%.  Dont take the number to be exact its an estimate.   I just had  pacemaker put in on December 16th of 2011.  My pulmonologist is Doctor John R Bach who very out spoken about respiratory issues for Duchenne. He doesnt believe in trech.  My lung capacity has actually increased.  Check out his website Dr. John R. Bach - The DMD/SMA/ALS Doc  I use a bi-pap which means bi-level device for sleep-apnea. It uses pressure.  I also use a volume ventilator during the day.  I do not have a trech. It seems your son  is doing well.

Hi Sherri,

Our son with DMD had his first sleep study at age 15 when having his appointments with De Wong.  They are using the Bi pap at night for DMD boys even when thier PFT's ie lung function is normal to preserve lung function and it also helps the heart.  In addition, there was a recent NIH study with DMD and young men who did "stacked breathing" exercises and there was a 89% difference in lung function of those using this technique.  I don't check this site very often so feel free to email me at cgunval@gvtel.com.  Good Luck, Cheri

Hi Sherri,

My son had his appointment this past week as well with his pulmonologist.  We were told basically the same thing.  It is frightening hearing your son's lung function is decreasing!  My son is going to have a sleep study as well.  He just turned 14 yesterday.

My brother died from DMD in 1994 just a few weeks shy from his 17th birthday.  They didn't do any of this stuff when he was alive.  Nothing preventative, no sleep studies, etc.  So, my point is, although this is all very scary & never easy to hear, they have come a long way.  We might not have a cure, but there is hope in a longer life with the preventative measures they have now.  Hearing about the lung function & hearing about the sleep test although scary, it's nice to have these things so they can be on top of it so to speak.

Also, my son has a Cough Assist, http://coughassist.respironics.eu/ that helps him to cough and also expands the lungs.  He had his first bout with Bronchitis in November and we easily got the mucous up with this.

Hi Tracy and Sherri

              Having Duchenne myself i know first hand that tthe  cough-assist and the other respiratory devices make a difference.  I can honestly say they make me feel better and stronger and more robust.   Id say to you from my perspective dont be afraid these technologies are not symbols of not being healthy they are tools to stay healthy.  Drug therapies are not the only method  to fight Duchenne.  These machines are much cheaper and easier to develop and make then the 10's if not 100's of millions of dollars to develop drug treatments.   There further technologies to help me and your sons have more mobility than we do.  I have a Facebook group called Robot exoskeleton for Duchenne.  It has infomation on robotic technologies for amputess that could help DMD.  Like devices that support your arms so ur less tired moving.  Being able to move and feel you have breathing support are very freeing.  Its very nerve racking to have breathing trouble or feel you'll get in a situation were you feel your body wont be able to move.  Just having this technology improves my health and your sons.  As you both know with Duchenne you want every health benefit you can get. 

Richard, thank you for sharing your experience.  Cheri

Thank you so much, Richard!  It is so comforting hearing about your experience, it gives so much hope.  Thank you for putting your story out there to help others.  I will check you out on facebook!   

Richard Darienzo said:

Hi Tracy and Sherri

              Having Duchenne myself i know first hand that tthe  cough-assist and the other respiratory devices make a difference.  I can honestly say they make me feel better and stronger and more robust.   Id say to you from my perspective dont be afraid these technologies are not symbols of not being healthy they are tools to stay healthy.  Drug therapies are not the only method  to fight Duchenne.  These machines are much cheaper and easier to develop and make then the 10's if not 100's of millions of dollars to develop drug treatments.   There further technologies to help me and your sons have more mobility than we do.  I have a Facebook group called Robot exoskeleton for Duchenne.  It has infomation on robotic technologies for amputess that could help DMD.  Like devices that support your arms so ur less tired moving.  Being able to move and feel you have breathing support are very freeing.  Its very nerve racking to have breathing trouble or feel you'll get in a situation were you feel your body wont be able to move.  Just having this technology improves my health and your sons.  As you both know with Duchenne you want every health benefit you can get. 

Sherri,

The ugly thing about DMD is it seems to not follow a formula.  What works for one may not work for the other in the same way.  One will have a prolonged life while another does not.  My brother was in a wheelchair by age 10.  I had high hopes that since my son was on steroids he would walk longer, but he was also in his chair by age 10.  

I wish I understood.  I truly feel your pain, but never loose hope!

I hope you have a great Easter!

Richard,

I am unable to find your group on facebook.  I could not get the link to work and I did a search on FB and found no results.


Richard Darienzo said:

Hi Tracy and Sherri

              Having Duchenne myself i know first hand that tthe  cough-assist and the other respiratory devices make a difference.  I can honestly say they make me feel better and stronger and more robust.   Id say to you from my perspective dont be afraid these technologies are not symbols of not being healthy they are tools to stay healthy.  Drug therapies are not the only method  to fight Duchenne.  These machines are much cheaper and easier to develop and make then the 10's if not 100's of millions of dollars to develop drug treatments.   There further technologies to help me and your sons have more mobility than we do.  I have a Facebook group called Robot exoskeleton for Duchenne.  It has infomation on robotic technologies for amputess that could help DMD.  Like devices that support your arms so ur less tired moving.  Being able to move and feel you have breathing support are very freeing.  Its very nerve racking to have breathing trouble or feel you'll get in a situation were you feel your body wont be able to move.  Just having this technology improves my health and your sons.  As you both know with Duchenne you want every health benefit you can get. 

Im sorry aboout that not sure why that link is dead.  Try this http://http://www.facebook.com/groups/181395521934833/

That doesnt work either.  When you search put in full group name.  You can  friend request me on Facebook and i'll invite you.  

Richard Darienzo said:

Im sorry aboout that not sure why that link is dead.  Try this http://http://www.facebook.com/groups/181395521934833/

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