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Welcome to The BreatheBB Forum!

Posted: Mon Dec 07, 2015 8:57 am
by michaelchiou
Hello new users! Welcome to The BreatheBB Forum. :D

Please introduce and share a fun fact about yourself.

Re: Welcome to The BreatheBB Forum!

Posted: Mon Dec 07, 2015 8:58 am
by michaelchiou
My name is Michael Chiou and I am the Operations Director for BreatheNVS and BreatheBB. I have been to 4 of 7 continents and I hope to see them all.

Re: Welcome to The BreatheBB Forum!

Posted: Wed Dec 09, 2015 12:08 pm
by mvherrero
Hello! My name is Victoria Herrero and I am a respiratory therapist. I am from Argentina so I love asado, wine and soccer!

Re: Welcome to The BreatheBB Forum!

Posted: Thu Jan 07, 2016 2:57 pm
by OluAlbert
My name is Olu Albert. Senior Registered Respiratory Therapist at King Fahad Medical City.....I love respiratory care!

Re: Welcome to The BreatheBB Forum!

Posted: Thu Jan 07, 2016 5:48 pm
by Miznottakloo
Hello, I had the pleasure to meet with Dr Bach in October 2015 and receive great treatment. I am now on non-invasive ventilatory care due to Post Polio syndrome.
I live in Ohio and had a difficult time getting equipment and a therapist. Thanks to the help of Dr Bach's support system, I am now set up and this Hickey Chickey from out in the country :lol: is now getting great care

Re: Welcome to The BreatheBB Forum!

Posted: Thu Jan 07, 2016 8:29 pm
by katman73
Hello My name is Manny Piazza My son who is 22 has SMA type 1 and has been on doctor bachs NIV for over 20 years now. I hate injustices and hope for worlds peace. Me and my wife Kathy and I have a lot of life experiences dealing with SMA. If we can be of any help to anyone please feel free to reach out to us.

Re: Welcome to The BreatheBB Forum!

Posted: Sun Feb 28, 2016 11:55 pm
by Thankful
Hi my name is Robert and My wife and I have a 10 year old child with SMA Type 2.
Our child is currently having his first stay at a hospital due to RSV. He went directly to the PICU & has been there and intubated for close to two weeks.
We are very eager to get him extubated properly and would greatly appreciate any information that is willing to be shared.
We are extremely grateful for the wealth of knowledge of Dr. Bach and the BreathNVS Team.
We have learned so much from the BreathNVS Website and we are eager to learn more here at the forum !
Thankful

Re: Welcome to The BreatheBB Forum!

Posted: Thu Mar 24, 2016 9:51 pm
by lanemll
Hello, My name is Michael and just joined the community. My wife has had early symptoms as a child of Charcot Marie Toothe. She is now experiencing shallow breathing and its affect. We are grateful to learn about Dr. Bach and this forum. We will be seeing him this summer and hope to use NIV and/or Cough Assist to improve her quality of life. We appreciate learning about NIV and how it has shattered our fear of potential trach in our future. Thank you all for your hard work!!!

Re: Welcome to The BreatheBB Forum!

Posted: Wed Apr 27, 2016 6:37 pm
by CharlesandLinda
Hi. My name is Linda and my husband is Charles. We both had polio during the 50's epidemic and are now experiencing the after effects better known as Post-polio Syndrome. I have been on Dr. Bach's NIV for about 11 years--night time only. It has added years to my life, I'm sure! I am so thankful for doctors who explore new and advanced treatment techniques for those of us with respiratory handicaps!

Re: Welcome to The BreatheBB Forum!

Posted: Fri Apr 29, 2016 10:16 pm
by highlight516
My name is Jason Celik. Im 26 years old and I have DMD.I was doing pretty well until I turned 18 and came down with a severe cough and cold, which developed into double Pneumonia.I wheeled into the local hosp. e.r. and as soon as I got in went into respiratory arrest and was intubated.The personnel at the hosp. were unfamiliar with DMD and when I began to feel better were unable to successfully extubate me and I was reintubated. Thankfully my cousin found Dr. Bach and Lou Saporito.My mother called Dr. Bach and he taught and guided her as to what to do.Since the doctors didnt know how to extubate someone with DMD and I refused to be trached they had no choice but to transfer me to Dr. Bach at University Hosp. in NJ.After being admitted at University Hosp. Dr.Bach extubated me the second day.I was put on a LTV ventilator and myself and family got a quick but very thorough education on ventilators, Emerson Cough Assist, masks etc.I am very thankful to Dr Bach and Lou Saporito and grateful for all they have done and still do for the M.D. community.

Re: Welcome to The BreatheBB Forum!

Posted: Sat Jun 18, 2016 7:19 pm
by Shannonkay
My name is Shannon Dickerson and I live in Pitt county NC. My niece is Type II SMA and extremely sick in PICU. I just ran across this and thought I would see if we can get help. I'm confidant the resins she is so sick is not just SMA progressing but something else that as well. She's fighting hard and we need help before it's too late

Re: Welcome to The BreatheBB Forum!

Posted: Wed Jul 27, 2016 1:31 pm
by SimonWP
My name is Simon, I am a Registered Psychologist, seeing patients, teaching and writing with a special interest in disability and chronic conditions as well as psychosexual and relationship therapy. I am also currently Chair of The UK charity Polio Survivors Network.

I had bulba polio in 1956 in London aged 5 and was totally paralysed including swallowing and was in an iron lung for around 4 months followed by a rocking bed and after around 20 months discharged home and after a while was able to walk and return to school. At 17 I had severe scoliosis and underwent a spinal fusion with approx 13 fused vertebrae and a Harrington rod. At 48 I needed noctural NIV and until recently all was OK. Currently, increasingly using a wheelchair, reducing work activity. interested here in finding help and learning about dealing with reduced VC and find correct NIV machine and settings and maximise my life and work opportunities.

Re: Welcome to The BreatheBB Forum!

Posted: Sun Jul 31, 2016 9:33 am
by lousaporito
Hi Simon and welcome to the forum. Your VC is the amount of air you can exhale after a maximum deep deep breath without mechanical assistance or frog breathing. VC + air stacking by which ever method works best is called Maximum Insuflation Capacity or MIC. Your Mic of 1.7 L is not bad but you should try an Ambu Bag (which is a volume ventilator ) and use whichever method produces the best MIC but on a daily basis 3 times/day for 10-15 stacking repetitions. Mic will usually improve and some increase in VC can result from reduced chest and lung stiffness. Some dizziness is common from hyperventilation but could also be due low blood pressure which you should check. You can spread out the repititions to reduce the effect. As for Volume vs Pressure ventilation, you should try volume and compare the O2 sat. Best of Luck, Lou Saporito

Re: Welcome to The BreatheBB Forum!

Posted: Sat Sep 03, 2016 6:52 pm
by Nil
Hello, my name is yalcin, i'm dentist. i have a 9 mounth dougther with sma type 1 who suffer from respiratory weakness

Re: Welcome to The BreatheBB Forum!

Posted: Tue Sep 06, 2016 9:56 am
by TurnBackOMan
Hi, I'm Vin! I was diagnosed with BMD in 1983, and have been a power wheelchair user full-time since 1999. This past July I got to sing :D as part of a "Senior Showcase" charity show at the local theater. I have received many benefits from singing over the years (my pulmonologist says "keep on doing what you're doing!"), and after having seen Dr. Bach the first time this past August, I hope to maximize these benefits into the future.

Re: Welcome to The BreatheBB Forum!

Posted: Sat Sep 10, 2016 12:10 am
by Matildelis
Hello everyone! My name is Matildelis Medina and I am 24 years old. I was diagnosed at age 1 with SMA type 2. I recently graduated from college with a Bachelor of Science in Biology and have future aspirations of going to medical school. Please feel free to chat with me if anyone has any questions :)

Re: Welcome to The BreatheBB Forum!

Posted: Fri Oct 14, 2016 11:31 am
by mshellt6
Hello, my name is M'Shell and I am 50 yrs old. I have LGMD and am on NIV at night. I found this forum through the Breathe with MD Facebook group. I live in Tyler, Tx.

Re: Welcome to The BreatheBB Forum!

Posted: Wed Nov 02, 2016 5:41 pm
by goncalvesmr
Hello....Good to participate in this important forum

Looking forward for more posts

Miguel

Re: Welcome to The BreatheBB Forum!

Posted: Thu Dec 29, 2016 11:09 pm
by neutronico
My name is Ricardo Rojas Caballero, I from Mexico and have very severe Becker MD, and works in mexico guiding, informing and raising awareness about muscular dystrophy; also translate many information and medical articles.

Re: Welcome to The BreatheBB Forum!

Posted: Tue May 09, 2017 1:09 pm
by 1965
Dear friends
Thanks to invite me to be member of this forum. Greetings from Spain.
My name and affiliations.
Antonio M. Esquinas MD, PhD, FCCP, Internacional Fellow AARC

Intensive Care Unit; Hospital Morales Meseguer. Murcia, Spain

Director International School of Non-invasive mechanical Ventilation; President International Association of NIV and Ibero American Association of Bioethics in NIV.

Research Profile: www.researchgate.net/profile/Antonio_Esquinas

Referee Cochrane Anaesthesia, Critical and Emergency Care Group;


Editor-in-Chief (3); Journal Respiratory Research; General Cardiovascular Medicine-Frontiers in Cardiovascular Medicine and

Journal Obesity& Weight Management.


Associate Editor: (47): ARC Journal of Anaesthesiology; Austin Anesthesiology ; Austin Cardio & Cardiovascular Case Reports. Austin Critical Care Care Reports; Austin Journal of Pulmonary and Respiratory Medicine; Austin Journal of Sleep Disorders; Austin Tuberculosis. Research& Treatment; BMC Pulmonary Medicine-(Section Pulmonary Critical Care); Case Resport: Peculiar Findings; Case studies in Surgery; Current Updates in Anesthetics and Anesthesiology; Ec Pulmonology and Respiratory Medicine Journal; Egyptian Journal of Critical Care; Emergency and Critical Care Medicine-Remedy; European Respiratory Disease ; Henry Journal of Anesthesia & Analgesia; Indian Journal of Clinical Anaesthesia; International Journal of Burns and Trauma; International Journal of Pulmonology & Clinical Research; International Journal of Anesthetics and Anesthesiology ; Journal of Anesthesia and Perioperative Management; Journal of Clinical Anesthesia and Management; Journal of Community Medicine; Journal of Obesity & Weight Management; Journal of Respiratory Disorders; Journal of Epithelial Biology & Pharmacology; Journal of Respiratory Research; Medicrit. Revista de Medicina Critica; Polish Pneumonology and Allergology; Pulmonary & Critical Care Medicine; Pulmonology Research and Respiratory Care journal; Respiratory Therapy ; Revista Mexicana de Neumologia y Cirugia de Tórax; Revista Peruana de Medicina Intensiva; SciTz Anesthesia: Clinical Research Journal; Sleep Disorders & Sleep Studies clinics -Remedy; SM Journal of Public Health & Epidemiology ( SMJPM) ; SM Journal of Pulmonary Medicine ( SMJPM) ; SM Journal of Sleep Disorders; SM Journal of Anesthesia ; SRL Anesthesia; SRL Cancer & Cellular Biology; Med One; Open Access Journal of Pulmonary & Respiratory Sciences; Cogent Medicine​ Med One; SM Journal of Pulmonology & Clinical Research; EC Cardiology (ECCY)