Questions about shortness of breath...what comes next?

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Laurie Staller

Active member
Joined
Jul 8, 2010
Messages
48
Reason
Loved one DX
Diagnosis
07/2009
Country
CA
State
ontario
City
kitchener
Hi...Well, since I posted last, my sister's shortness of breath has gotten worse. She is having great difficulty speaking. Does anyone know what causes these symptoms. Is it the muscles to the lungs that are affected? Has anyone delt with these symptoms...and does anyone know what we could expect next? I just want to educate myself as much as I can....sometimes knowing what symptoms we might encounter next....helps me stay grounded. Also, as my sister is still in denial, does anyone have any ideas how we might approach her with this breathing issue without terrifying her. Your help is so appreciated. Love to all......Laurie
 
Laurie,
Shortness of breath was one of my first real symptoms 2 years ago. What I found out though my als quest is july, aug and sept my breathing is worse so I use an inhaler when needed. Also acid reflux plays a part in it. Maybe best for you sister to see an ENT to see what is going on.
Judy
 
The first thing you should do is call her ALS Dr. and tell them to see what they want to do. Yes the diaphram for me got weak and I went on an NIV at night and naps during the day for about a year then went 24/7 but that was almost 3 years ago, my vent is my best buddy. Keep reading this forum and others to understand whats to come but remember there are no two progressions the same so we all live with a certain amount of the unknown. I've always been a believer in getting all the facts to make an intelligent decision. Fact: If you accept the technology of a Non-invasive ventilator you will feel better, you will live longer. For the terrifying part its a terrifying disease I focus on the things I can control or do like spending time with my 3 yr. old twin granddaughters, instructing my son on building an entertainment center, drink a beer with a friend. The sooner your sister gets past denial the sooner she will begin to live. Hope this helps.
 
Yes, it definitely sounds like her diaphragm is being affected thus affecting he ability to breathe and talk. Seeing a pulmonary doctor would be a good idea. I don't know how you can gently tell her, it is time she acknowledgd what is happening to her so things can be put in place to deal with it.
 
laurie I started having increase short of breath the first of July I started using my bipap more and made a trip to x-ray x-ray was clear. so they ordered trilogy and made appt to ent to evulate need for trach I am told by the experts of this forum that i will be so glad I did and they have experince with a trach unlike friends and drs. I am sick of wearing this mask all the time it makes my face break out .

ps the ent dr seem to feel it was my vocal cords not working properly because of als


I will pray for you and your sister
 
Thank you..everyone for all of your suggestions. There is a pulmonary test being done, but not until September 1st (that's the earliest we could get). In the meantime, I hope we can get my sister an inhaler or NIV...hopefully that will relieve some of her breathing difficulties. Love to all......Laurie
 
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