Re: Re:My Mother

[Guest guest]

Dear Ria, He may be an excellent doctor, but I cannot understand why a respirologist/pulmonologist would not recommend some form of airway clearance. If your mom cannot tolerate traditional chestphysiotheapy there are other gentler ways of clearing the lungs such as Acapella choice, pep mask, flutter, etc.... airway clearance must be done daily and it can help prevent lung infections. The mucous must be coughed up. Its also important for your mom to stay as active as possible. Is there a pulmonary rehab centre in Montreal? When I went to CHUM (think it was CHUM) to see a lung transplant respirologist I do not believe at that time the hospital had a pulmonary rehab program. I went in November of 2004 and thought it was odd for a lung transplant centre to no have a pulmonary rehab program. Anyhow, I always think a second opinion is a great idea. Did your mom see this specialist at the Montreal Chest Clinic/Centre (think its affiliated with

McGill)? if not it might be help to try his centre. Also try an infectious disease specialist. One that is up on bronchiectasis research and if your mom could have a referral to a doctor that works with cystic fibrosis patients and is a respirologist this could be helpful. The CF doctors have a better understanding of airway clearance, importance of exercise, etc... Also in bronchiectasis our lung infections must be treated early this helps to decrease the amount of lung damage. We must have specialists and primary care doctors who work well together, as a team, who can develop a treatment plan, and agree on it, and who agree to treat these infections early - very early, so they do not progress into a full blown bronchitis or pneumonia. Its okay to question the doctors. We must. Our lives depend on questioning and seeking the best treatement. CF treatments are often similar to those used in bronchiectasis. Hope this helps. Best Wishes:0) Liz in Nova Scotia Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch Live Life The Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________

[Guest guest]

Dea Ria, I forgot to add that my infectious disease specialist, Dr. Haase (has expertise in cystic fibrosis and non-cystic fibrosis (non-CF) bronchiectasis) is a firm beliver in his patients having routine sputum cultures done. These cultures can provide a guideline of what is growing in our lungs. Therefore, often provide important guidance to our doctors before treatment is initialed they can look back at our previous results. Granted, something new can always pop up. Cultures are still helpful. Hope this helps:0) Liz Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch Live Life The Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________

[Guest guest]

Hi everyone,

Thank you very much for all your emails...you are wonderful. My apologies for not replying sooner, work is incredibly busy.

Unfortunately, my mom's pulmnologist only wants to treat her when she has an infection...usually with Cipro. He never mentioned anything about PT, but he did perform drainage on her twice. Can she do this PT at home? What exactly is it?

Pulmonary Rehabilitation...we need to keep our lungs and hearts moving..use it or lose it is the way it is for all of us. At Pulmonary Rehab we use tread mills, stationary bikes, hand wheels for upper body strength, small weights and stretching exercises. They teach us new ways to breathe to help aid us in our labored breathing..they teach us new techniques in every aspect of our lives that have affected us because of our lung disfunction. Ask her dr about it..if she's on medicare they'll pay for 31 sessions..then it's like 40/month if she chooses to continue..that's what they charge here at the hospital where I live.

It's a gold mine and no one should be without activity..it will really help improve her quality of life.

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

.. Granted, something new can always pop up. Cultures are still helpful.

I have nothing more to add to this other then I totally agree..if your dr doesnt suggest cultures..it's up to you to not suggest he do them routinely..but demand it..it's your body..it's your life..you're the one suffering..so take charge of your life and management of your illness

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Ria,She can lie on her stomach on the edge of the bed letting her shoulders andarms hang over the side. If she takes a lot ot deep breaths and coughs, shewill expel a lot of mucous by taking deep breaths and coughing (for about 30minutes).

For me, it's difficult to do the above. If she's not able to do the above, either, ask for a flutter valve or an acapello <sp> valve..also, it wouldnt hurt to ask about a script for the vest..Medicare will pay for it if you're on it..

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Ria,

She can lie on her stomach on the edge of the bed letting her shoulders and

arms hang over the side. If she takes a lot ot deep breaths and coughs, she

will expel a lot of mucous by taking deep breaths and coughing (for about 30

minutes).

Marsha