Breathing problems with my Dad?

[Andy2020]

I am hoping some of you experts can help me figure out what to do for my Dad.


Here is his quick story.

My Dad started going to the YMCA in 2007. He would work out 6-7 days a week for 1-2 hours. He was in great condition.


In January 2009 Dad suddenly had his shoulders and neck curving forward. It was like it happened over night. My whole family was asking him what was wrong with his neck and he said he didn't even notice.

We all thought maybe he hurt himself working out.

He went to a spine Dr and his Xrays were normal.


Dad kept working out, but he said he was "tired" all the time and he was having problems sleeping at night.

In August 2009 my Mom and Dad were on a walk and Dad suddenly said he couldn't breathe.

They rushed him to the Emergency Room and the ER Dr was convinced it was a heart attack. The EKG and MRA were all normal.

The next day the Pulmonary Dr asked Dad if he smoked and he told him that he had quit smoking 30 years ago. He diagnosed Dad with COPD and sent him home with 2 drugs.


Dad continued to decline. He could no longer breathe on his back, so he wasn't getting any sleep. He would go out to the living room and try to sleep sitting up in a chair.


Finally he went to the Dr again in December. He was told that it was his throat and he wasn't breathing correctly. The Dr prescribed speech therapy and physical therapy.


Dad went back for a follow-up January 14, 2010.
He told the Dr the COPD drugs didn't work, he was weak/tiried, and he couldn't breathe on his back.

The Dr said he wanted to do a scope of his throat and lungs the next day.

On January 15th 2010 Dad went in for the scope. At 6:30am they FINALLY took his blood gas levels.

His CO2 was over 70!

They put Dad on pure oxygen and the Dr said he was definitely going to have to stay overnight for observation, because his CO2 levels were so abnormal.

But the Dr went ahead with the scope procedure, where Dad had to lay on his back, even though he had told the Dr he couldn't breathe on his back.


Dad made it through the procedure and seemed to be ok, but around 4:00pm he looked like he was taking a nap, but the nurse couldn't wake him. He was unconscious and unresponsive.

They immediately rushed him to the Emergency Room and put him on a BI-PAP machine to try to expel the CO2 from his lungs.

That didn't work so they had to put him on a ventilator.

Dad spent 3 days in the ICU on a ventilator.

After the third day the Pulmonary Dr said Dad was on the "borderline" of being able to breathe on his own, but he might not be able to.

They asked Dad if he wanted to go with a Tracheotomy or to try to breathe on his own.

Dad wanted to try to breathe on his own and he was able to.

The Pulmonary Dr finally said Dad didn't have COPD, but his left diaphragm was very weak.



They sent Dad home with a prescription for oxygen 24/7 on a setting of 2.

He is also on a BI-PAP machine at night.

I just read the late Dr Oppenheimer's report on not giving Oxygen to ALS patients on JoelC's Blog.


I am confused if my Dad should be on oxygen 24/7 or not????


They also have oxygen hooked up to his BI-PAP machine.

Should the BI-PAP only be using room air right now???


Any advice would be greatly appreciated.

Thank You!

[cris]

I'm sorry, Andy202 has your dad been Dx w/ ALS yet? I've not read the study you're talking about. I would have to go w/ the common sense answer...if it's working..use it. Does your dad have other symtoms? Would hate to think it's ALS ,then be wrong...then again that would be something we would all like to be wrong about(hehehe) I know..warped..sorry.

Will keep you guys in my prayers!!

[tdamess]

so sorry for your dad , i do not know anybody on here with lung onset but in patients like me site there are 2 or 3 people who started that way but , i do not remember them talking about a curved neck .. so i am at awww on this it would seem to me ... the question also should be why did neck and shoulder curve

[DgtofTNfan]

Shorty after my Dad's diagnosis he had aspiration pneumonia and was in the hospital for IV abx, etc. An ABG (arterial blood gas) showed he was also retaining CO2 (62) and reportedly the bipap would help gas exchange. He left there with his bipap and 2L oxygen at night. We were told because of the weakness in his diaphragm he would be a chronic CO2 retainer. I questioned the oxygen based on what I read and it was insisted he needed it to help with recovery from the pneumonia. So after a few weeks to a month after the hospital discharge, I again questioned the oxygen and an overnight oximetry was ordered. His oxygen saturation's dropped during the night so the Pulm doc ordered continued oxygenation at night. I just don't think there is enough research for PALS especially those with other medical illnesses to have evidenced based decision making.

I still question to this day if that was the right thing to do. This does not answer you question but it was our experience for what it is worth.

[mare]

Andy-
I read your previous post that said your dad was dx with ALS at the Mayo Clinic (and it was not a pleasant experience). Sorry for that.
Was this episode where he was on vent & in ICU before the dx?

I know that this is a difficult time; everything is happening so fast. But, given the present situation, I would urge you to go back & reread trfogey's post in your other thread. I know it was not easy for you to hear, and it may have seemed blunt to you, but he knows of which he speaks.

IMHO, I think you should be researching for an ALS specialist at an ALS clinic in your dad's area. (Leave the science to the scientists.) All of them are not rude; many are very kind, caring, compassionate doctors who truly want to help their patients as best they can.

At an ALS clinic, he will have access to specialists who know & understand the ramifications & complications of this disease. They know how to deal with & manage the symptoms. Please consider this before another crisis happens. The time to act is now!

[Andy2020]

Originally Posted by mare

Andy-
I read your previous post that said your dad was dx with ALS at the Mayo Clinic (and it was not a pleasant experience). Sorry for that.
Was this episode where he was on vent & in ICU before the dx?

I know that this is a difficult time; everything is happening so fast. But, given the present situation, I would urge you to go back & reread trfogey's post in your other thread. I know it was not easy for you to hear, and it may have seemed blunt to you, but he knows of which he speaks.

IMHO, I think you should be researching for an ALS specialist at an ALS clinic in your dad's area. (Leave the science to the scientists.) All of them are not rude; many are very kind, caring, compassionate doctors who truly want to help their patients as best they can.

At an ALS clinic, he will have access to specialists who know & understand the ramifications & complications of this disease. They know how to deal with & manage the symptoms. Please consider this before another crisis happens. The time to act is now!

Hi Mare,

Yes I was mad at that ALS Specialist from the Rochester Mayo Clinic for not offering us any help with how to manage the symptoms of ALS. But I now realize she was 1 Dr and they all can't be that bad.


My Dad is scheduled to see his GP tomorrow and he is going to ask for a referral to an ALS Specialist at UNMC in Omaha, Ne. He is supposed to be really good.


I apprecaite your advice. Thank You.

Andy

[mare]

Andy-

Be sure to have his doc include in his referral: evaluate AND treat!!!

I don't know all the events with the other dr. at Mayo, but in her defense (and God knows she needs it), she may have only considered it a consultation for diagnosis. In those cases, some docs don't want to step over boundaries. She would assume he would get treatment elsewhere. I know, doesn't make it right!

Also, see if his doc has any pull with getting him in ASAP! He can site the recent problems he has had. Good luck!

Will keep your family in my prayers!

[joelc]

It is good that you are going to get him to see an ALS neurologist.
Concerning the use of O2, I would discourage it unless he is recovering from pneumonia. It does not sound like he has any problems with his lungs, it is a weak diaphragm. So with a weak diaphragm there is a need to get more air into his lungs via a bipap or better yet a trache and vent. This will definitely take care of the CO2 problems and I would not consider trying to breathe on my own from what you have described.

[cris]

andy2020...My apologies ....I had read about your dad up at the rochester,MN Mayo clinic. Somehow I got confused. Listen to Joelc..he seems to have the most knowledge here on those issues.

I don't have much experience with lung or bulbar onset. But I will keep you and your dad in my prayers!

Hugs and Prayers!!

[Andy2020]

Originally Posted by joelc

It is good that you are going to get him to see an ALS neurologist.
Concerning the use of O2, I would discourage it unless he is recovering from pneumonia. It does not sound like he has any problems with his lungs, it is a weak diaphragm. So with a weak diaphragm there is a need to get more air into his lungs via a bipap or better yet a trache and vent. This will definitely take care of the CO2 problems and I would not consider trying to breathe on my own from what you have described.

Joel the problem is if my Dad takes the Oxygen off his O2 levels drop into the low 80s on his oximeter.

Does he need to be on BI-PAP during the day, also?


He uses it at night and was able to sleep for the first time in 5 months.


Also, have you heard of the Diaphragm Pacemaker Device? They are hoping to have FDA approval in the next 6 months and my Dad is very very hopeful he could get one.

Synapse :: Clinical :: ALS Clinical


Here's a video of the Mayo Clinic doing a clinical trial on an ALS patient:

YouTube- New ALS Device -- Mayo Clinic

YouTube- New ALS Device -- Mayo Clinic

[Andy2020]

Originally Posted by cris

andy2020...My apologies ....I had read about your dad up at the rochester,MN Mayo clinic. Somehow I got confused. Listen to Joelc..he seems to have the most knowledge here on those issues.

I don't have much experience with lung or bulbar onset. But I will keep you and your dad in my prayers!

Hugs and Prayers!!

No problem.

I am reading all of Joelc's Blog Entries. Very helpful information.

[joelc]

If his CO2 levels go up when he is not using the bipap then he needs to be on it more, maybe all the time. What are his FVC readings?

As far as a diagram pacer is concerned his FVC has to be over 60% to be considered.

[Andy2020]

Originally Posted by joelc

If his CO2 levels go up when he is not using the bipap then he needs to be on it more, maybe all the time. What are his FVC readings?

As far as a diagram pacer is concerned his FVC has to be over 60% to be considered.

Hi Joel,

FVC is "forced vital capacity" correct?

I am not sure what his FVC is, but I will find out tomorrow.


So if his FVC is above 60% he is ok to be without oxygen?

Even though his O2 drops to the low 80s on his oximeter?



He also has a weak cough. Should we ask his Doctor to prescribe a Cough Assist Machine?


This has been a learning experience. Thank you for your advice.

Andy

[trfogey]

Andy, One thing you can try with your dad is to have him use the BiPAP while he is awake. If you have a way to monitor his oxygenation levels, you can turn off the O2 and see if the BiPAP alone can keep him in the mid 90s. Don't panic if the bipap isn't enough. Just turn the O2 back on. The pressure settings on the bipap will probably need to be set to a different level before the O2 can be safely taken away.

Given the difficulties that your father had with diagnosis and care while he was in the hospital, you folks are going to need to get an ALS specialist involved in your father 's care ASAP. A good pulmonologist who is experienced with the special needs of ALS patients is strongly recommended too.

Keep us posted and feel free to ask any questions that come up. There are a bunch of us here who have been where your dad is and we made it through, so we're happy to do what we can to help your family get through it too.

[Andy2020]

Originally Posted by trfogey

Andy, One thing you can try with your dad is to have him use the BiPAP while he is awake. If you have a way to monitor his oxygenation levels, you can turn off the O2 and see if the BiPAP alone can keep him in the mid 90s. Don't panic if the bipap isn't enough. Just turn the O2 back on. The pressure settings on the bipap will probably need to be set to a different level before the O2 can be safely taken away.

Given the difficulties that your father had with diagnosis and care while he was in the hospital, you folks are going to need to get an ALS specialist involved in your father 's care ASAP. A good pulmonologist who is experienced with the special needs of ALS patients is strongly recommended too.

Keep us posted and feel free to ask any questions that come up. There are a bunch of us here who have been where your dad is and we made it through, so we're happy to do what we can to help your family get through it too.

Thank you very much trfogey.

It's scary to think how Drs can make mistakes like this.

We put our trust in the Drs, but obviously they aren't ALS Specialists, so it's our responsibility to educate ourselves and get him to an ALS Specialist now.


I actually told my Dad that if he takes naps to go ahead and hook himself up to his BI-PAP machine(just in case his CO2 levels are rising during the day). He said he tried it and felt better after his nap.

I have no idea what his settings are on his BI-PAP. His Pulmonary Dr pre-programmed it, but it makes me nervous, because he is the same Dr that put my Dad on oxygen when his CO2 levels were at 70. Even though he knew my Dad said he couldn't breathe on his back and his diaphragm "wasn't pushing his air out right".


It's also frustrating that my Mom and Dad seem to not understand how dire this situation is.


I kind of gave up on ALS Specialists being able to help us, after our experience at Mayo, but now I am understanding how daunting this disease is and how little Drs know about ALS and the complications involved.


Thank you so much for your advice.

Andy