Pretty bad news

Status
Not open for further replies.

nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Have been having excessive mucus secretions and crackling in my breathing that I cant get rid of. Have tried everything.
In August a small area of atelactesis was noticed at the bottom of my left lobe. This got bigger by november and now half my left lung is involved. My family doctor gave me a 50% chance of living 6 months.
Nothing I do helps-cough assists, expectorants etc, they just dont seem to matter.
 
Neil, that doctor doesn't have a crystal ball! You just hang In there and PROVE that predictions like that are ridiculous! Hugs to you today.
 
I'm so sorry to read this. I'm sure that this news is causing you great distress. Hopefully you will hit a plateau soon and prove the doctors wrong! Keep the faith!
 
Truly no one has a crystal ball. What does your pulmonologist say? And I am so sorry that things are not clearing up in that lung
 
Last edited:
Steves left 2.lobes at diagnosis and within a month the whole.lung showed atelectasis. His right lu g at the lower lobe and half way up has it too. Yet his fvc improves. He has been like that since last May...May 2014. Your doctor is a moron for saying that to you. Use the cough assist and bipap. They helpand forget about the big mouthed doctor.
 
Neil, see a pulmonologist and ask if a Bronchoscopy might help. It can be also used to remove excess mucus.
 
Steves left 2.lobes at diagnosis and within a month the whole.lung showed atelectasis. His right lu g at the lower lobe and half way up has it too. Yet his fvc improves. He has been like that since last May...May 2014. Your doctor is a moron for saying that to you. Use the cough assist and bipap. They helpand forget about the big mouthed doctor.

Ditto to what Goosebery said.

Hang in there Neil.
 
Neil, see a pulmonologist and ask if a Bronchoscopy might help. It can be also used to remove excess mucus.

Mom had this procedure done. It take just a few minutes to do...
 
Thanks Im pretty shaken up right now and I absolutely have no idea what to tell my older daughter. Shes just finishing up law school, knew i had ALS and just found out her mother has stage four endometrial cancer. The survival rate of that is not much better than ALS (well anything is better than zero I guess). To lose both parents nearly at once-my God. my heart aches for her.
The other thing is that this dr is not given to whimsical guesses-Ive known him for 30 years, he is the one who will help me in my last hours and he wouldnt say something like this lightly.
Im really just in shock now, I thought I had made my peace, but nothing about this disease is normal. Basically I was told the next time I get an infection will be the last time. I never will know whether the night I lie down with my wife to go to sleep will be the last one I will have.
 
Neil, I lost both parents, my grandmother who was more like my mother and went thru a high risk pregnancy in a 13 month span. It really sucks. Help her build a support system and get treatment with a counselor and meds if she needs them.

For you....no doctor can say for certain what is going to happen. You know that. We have lived with hand sanitizer everywhere and buckets of soap for handwashing. Still we have gotten sick. Steve has not. Dont live in fear. Enjoy your time.
 
Neil, I'm so sorry you got this news. the shock will wear off and then you can make a plan for the next steps. Until then, keep doing your normal routine.
 
Re using the CoughAssist -- definitely helps some if there is mucus that is accessible and obstructive. But w/ compromised alveoli, at a certain point, I believe some do better w/ shallower, slower breathing and less forced coughing, because w/ reduced lung capacity, overfilling is not the answer.

So Neil et.al., I would try foregoing the CA and simultaneously downshifting the BiPAP settings to see if that helps.
 
Neil: Family doctors are fine people. However, a pulmonologist is the specialist to listen to in this case rather than the family Doc. My thoughts are with you.
 
Thanks all for your thoughts. Dr tried to find a respiratoty therapist for me, but here all are inpatient-why you say, because thats the only way medicare will pay.
So now they are trying to find a speech threrapist who can do respiratoty therapy and call it speech therapy. Cant imagine why medicare feels its not important for people to breathe
 
We used a company called millennium respiratory services. They charged a lot but we filed hardship paperwork til we were able to switch out to the VA. We got great service from them. They are on call 24/7. Come to your home for a.monthly assessment and will provide loaner machines or grant hardships for free. Worth it to check out.
 
Status
Not open for further replies.
Back
Top