Irregular breathing and CO2 level elevated

[Phil's wife]

I noticed a couple of nights ago that Phil was having a lot of apnea. Yesterday he was groggy and slept all day. Previous day was not one that would mormally tire him out. I called the doctor about his hip pain - he has stage 4 renal cancer with a tumor on his spine too. After seeing the doctor he was asmitted due to pain and breathing with possible CO2 elevation. It is elevated and he continues to fall asleep when I am talking to him and have the apnea after about 7 deep breaths. We are waiting for neurology to come by - his oncologist is who admitted him.

What does this mean? I am pretty sure it is weakness from the ALS, he has really lost a lot of movement and strength everywhere in the last month. They have checked for blood clots, fluid in the ER the other day and nothing.

I don't think he will be trached since he has the cancer so badly. How long can he live like this? Are we looking at weeks now instead of months?

He has a bipap at home but has never used it. They brought a bipap in here last night but havent hooked him up on it yet and the nurse doesnt know why they havent.

Anything known about this would be helpful, even if it is reallu bad news. I am praying this isn't the end.

Thanks,

Stephanie

 

[abbas child]

Stephanie,

Wow, this is heartbreaking. Did he ever tell you or write up advanced directives so that you know what he would want? The cancer makes this a whole different picture. And I don't have an answer, am not trained in anything medical. I just really feel for you right now. A big hug. Ann

 

[alex scared]

hi . .sorry to hear of your pals condition and recent trouble. . As regards the apnea well it depends on the form of apnea that is occuring . If it is due to progressive breathing muscular weakness then the diaphragm and intercostal muscles might be struggling to operate when asleep . In turn this might cause elevation in carbon dioxide levels . This will cause fragmented sleep and frequent awakening . . Another form that could be causing the apneaic events is a different form called central sleep apnea . . This is apparently common in neuromuscular illness patient s . . Basically the (phrenic) nerve that feeds and controls sleep breathing muscles and gas exchange becomes damaged due to the illness . .so when the patient drifts off to sleep the auto pilot that takes over enabling the patient to breathe fails . . The patient will continue to just drift off and awaken many times a night . . C o2 again become elevated . . And patient is very drowsy due to unrefreshing sleep . . As for bì pap well they can be very helpful in solving both theses problems and would give it a go as soon as you can . . . I will be hoping and praying for you . . Hope the info is useful . . Good luck and god bless . . Alex

 

[Phil's wife]

Thanks for the thoughts and help in this. We are still in the hospital, hoping to go home today. The y brought Phil a bipap to use while here and he used it once. I could see a big difference in his alertness the next morning. He did not use it last night - i predict he will fuss against using it at home regularly right now too.

The awful disease is progressing very quickly now, even if this is a paraneoplastic syndrome we may not have a chance to halt the als due to both it and the cancer being so aggressive.

Prayers for all,
Stephanie

 

[tdamess]

so sorry , thinking of you and hubby wish i could help some how but , know i care

 

[abbas child]

Stephanie,
Just wanted to say I'm also thinking of you and praying for you.
Hugs,
Ann

 

[Danijela]

Stephanie, you are in my thoughts. Dani

 

[Jeannie]

You and your husband are in my thoughts and prayers
In friendship~
Jeannie

 

[sharona]

Stephanie I will add your family to my prayer list.God Bless
Sharon

 

[Phil's wife]

Thank you for all of the warm thoughts and prayers. We saw the new ALS doctor in our new home area today and liked him a lot. Dr Bedlack at Duke is really great. Just wish he could have given us a better prognosis, but that isn't his fault - I am glad he could share it with us. He said Phil only has 3-6 months left with us. I really thought last year - before October - that Phil would progress slowly and we would have to worry about the cancer more than the ALS. The changes he has gone through in the last few weeks have been fast enough to make someone's head spin.

We will begin the steps for hospice tomorrow. I had to tell the kids tonight - well 5 of the 6. I will tell the 6th one tomorrow - by the time I got to him it was so late I didn't want to wake him (he lives out of town).

How awful this is...

Prayers for all of you,

Stephanie

 

[TedH5]

Stephanie I am so sorry to hear this. You and your family will be in my thoughts and prayers. God Bless you and Phil.

 

[abbas child]

Stephanie, I'm so very sorry. My prayers are with you.
Love,
Ann

 

[Miss]

Stephanie, I am so sorry. My thoughts and prayers are with you. I'm so glad you are back with family. Take care.

 

[Katie C]

Stephanie I'm so sorry. I have to say when Dr North gave us the three month prognosis based on breathing issues, he was spot on. Hospice should be a huge help to you, so that you can spend your time together in a more relaxed manner. Hang in there, and try to keep some time aside for you.

 

[LizT]

Very sorry Stephanie. Wish there were something i could do to help.