New member

Please use this community for general discussions about post-poliomyelitis.
SaraB
New Member
New Member
Posts: 2
Joined: Wed Jan 06, 2016 1:23 am
Diagnosis: PPS
Diagnosed: 1985
City: Butler
State or Province: Pennsylvania
Country: United States

New member

Postby SaraB » Wed Jan 06, 2016 1:58 am

I had spinal Bulbar Polio in 1953 a the age of three. Paralysis was initially complete, except breathing. While I never was in an Iron Lung, I'm told one was on stand-by for the first three weeks I was in the hospital. I stopped smoking after 30 years in 2000 after multiple attempts. I discovered that bi-lateral blood clots in my lungs was a sure cure for smoking. I was sent home n 3 liters of O2 24/7 for the first three months. At one of my check-ups I mentioned to the Pulmonoligist that I no longer woke up with headaches in the morning. He ordered a sleep study (which I now know should have been done years earlier and I was found to have sleep apnea and RLS. C-pap was discussed, but as I'm quite claustrophobic I stayed on O2 from then on. Over the years I had sleep sat studies (usually because of insurance) and the most recent one showed me dropping into the 60's and I'm having frequent periods during the day when I fade out--often while watching TV or on the computer. I'm In the Harvest Center's Post Polio Forum and they have convinced me that O2 isn't cutting it. I got the name of a local pulmonoligist with experience with patients with Neuro-Muscular Disorders from my Physiatrist and I've been looking for some material to take with me in case he's not familiar with PPS. All I seem to find on the net are abstracts and bibliographies, unlike the Harvest Center, where there are a lot of articles to print out and books that can be ordered. Has anyone any ideas where I can find something I can use?

BTW, I 66 and a retired Medical Social Worker. I got the blood clots three months after I started using a power chair to get around the hospital.

User avatar
bachjr
Medical Director
Medical Director
Posts: 135
Joined: Wed Nov 11, 2015 3:07 pm
City: Newark
State or Province: NJ
Country: USA

Re: New member

Postby bachjr » Wed Jan 06, 2016 10:49 am

Welcome Sara,

Oxygen depresses breathing. Have you read through the outcomes here: http://www.breathenvs.com/#!blank/n0gnd

It is best if you go to a center for noninvasive respiratory management: http://www.breathenvs.com/#!centers-for-noninvasive-management/ihfvz. Our center in Newark, NJ should be close.

Also, I will email to you some articles and information to read.

JB
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

SaraB
New Member
New Member
Posts: 2
Joined: Wed Jan 06, 2016 1:23 am
Diagnosis: PPS
Diagnosed: 1985
City: Butler
State or Province: Pennsylvania
Country: United States

Re: New member

Postby SaraB » Wed Jan 06, 2016 10:11 pm

Thank you Dr. Bach. I'll look forward to recieving the material. I would love to come to your center, but I'm on the far side of Pennsylvania from you--north of Pittsburgh. I worked at St. Francis Medical Center there for thirty years. For part of that time I was the social worker on our Respirator Rehab unit. We took patients who our Docs felt were weanable given enough time. Dr. Grover and Dr. Ramen ran the unit. They were also my Doctors when I had the PE's. The St. Francis System went bankrupt and closed in 2002 after over 100 years of service. I don't travel well anymore, so I'm seeing a Pulmonologist here in Butler. If you don't mind I'll share the info you send me with him.

I look forward to seeing this Forum grow. I'll keep you posted on what happens next and ask for help if I hit a brick wall (which happens to PPS folks alot).


Return to “Post-Poliomyelitis”

Who is online

Users browsing this forum: No registered users and 1 guest