Worried about my husband coming off the ventilator

Posted by Mike @meppard, Nov 30, 2017

Hello Mike @meppard and welcome to Mayo Connect! I see this is your first post and I’m glad that you joined our online patient support group.

If you would like to get a second opinion from Mayo Clinic here is the information regarding appointment requests: http://mayocl.in/1mtmR63 Often, after the first consultation, Mayo experts can work with a local provider to continued care.

Also, there is a Mayo Clinic Care Network. Read more about the network and facilities here: https://www.mayoclinic.org/about-mayo-clinic/care-network. As you can see, these represent other hospitals that work with Mayo doctors.

Here is a Mayo website regarding NETs that you might find helpful, https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039

As you are posting in the NET discussion group, I’m assuming that you have recently been diagnosed with an NET? If you look at some of the discussions in the NET group you will see that all of us are in various stages of NET treatment.

If you are comfortable doing so, please share a little about your history with NET. As one who has had 3 NETs I understand some of the anxiety and fear that a rare form of cancer can have and I certainly understand your wanting to get the best care and treatment possible. Mayo Clinic is a good place to go for a second opinion.

We look forward to getting to know you better in your future posts.

Teresa

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My husband is in hospital with CIDP syndrome and is on a ventilator and they are treating him with steroids. He is doing most of the breathing on his own but trying to wean him off. He has lost all mobility.
Is it worth getting a second opinion from mayo?

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@cmstrachota

My husband is in hospital with CIDP syndrome and is on a ventilator and they are treating him with steroids. He is doing most of the breathing on his own but trying to wean him off. He has lost all mobility.
Is it worth getting a second opinion from mayo?

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Hi @cmstrachota, it is always worth a call to Mayo Clinic. Here is the contact information for all three campuses http://mayocl.in/1mtmR63

Mayo Clinic experts will review your husband's medical records, history and current situation and be able to tell you if it is possible to move him or if he is receiving the same care that they would offer.

Which Mayo location might be closest for you – MN, FL or AZ?

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@cmstrachota

My husband is in hospital with CIDP syndrome and is on a ventilator and they are treating him with steroids. He is doing most of the breathing on his own but trying to wean him off. He has lost all mobility.
Is it worth getting a second opinion from mayo?

Jump to this post

@cmstrachota, you may also wish to connect with other members who have experience with CIDP in this discussion group:
– CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

This must be very scary for you. How are you doing?

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Getting very scared as they try to take him off ventilator

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@colleenyoung

Hi @cmstrachota, it is always worth a call to Mayo Clinic. Here is the contact information for all three campuses http://mayocl.in/1mtmR63

Mayo Clinic experts will review your husband's medical records, history and current situation and be able to tell you if it is possible to move him or if he is receiving the same care that they would offer.

Which Mayo location might be closest for you – MN, FL or AZ?

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Mn.would be closest

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@cmstrachota

Getting very scared as they try to take him off ventilator

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I can imagine that you are scared, especially as they take him off the ventilator. Are you able to be with him?

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@colleenyoung

I can imagine that you are scared, especially as they take him off the ventilator. Are you able to be with him?

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Yes I am able to be with him some of the time. They are taking him off slowly.
I am waiting to hear if Mayo clinic would do any different treatment.
They have him on steroids for the CIDP syndrome and he is getting some strength back in one arm.

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@cmstrachota

Yes I am able to be with him some of the time. They are taking him off slowly.
I am waiting to hear if Mayo clinic would do any different treatment.
They have him on steroids for the CIDP syndrome and he is getting some strength back in one arm.

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@cmstrachota, I'd like to bring in some other members who know what it is like to come off a ventilator, like @cindyvag @smoky and @rosemarya to share their experiences with you.

I'm glad to hear that your husband is regaining strength. How is he doing with coming off the ventilator?

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@cmstrachota

Yes I am able to be with him some of the time. They are taking him off slowly.
I am waiting to hear if Mayo clinic would do any different treatment.
They have him on steroids for the CIDP syndrome and he is getting some strength back in one arm.

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Hello @cmstrachota,

I hope you are doing well. It has been a few days since you last posted about your husband's removal from a ventilator. How is he doing?

Will you post an update when it is convenient for you?

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@hopeful33250

Hello @cmstrachota,

I hope you are doing well. It has been a few days since you last posted about your husband's removal from a ventilator. How is he doing?

Will you post an update when it is convenient for you?

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I am heartbroken to say we had to put him back on the ventilator. He is not going to get any better. He is getting worse and weaker everyday. He would have to be on life support and in a lo g term care facility the rest of his life.
He does not want that.

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@cmstrachota

I am heartbroken to say we had to put him back on the ventilator. He is not going to get any better. He is getting worse and weaker everyday. He would have to be on life support and in a lo g term care facility the rest of his life.
He does not want that.

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I am so sorry to hear this, @cmstrachota I can't imagine how difficult this is for you and your husband. Please feel free to reach out to Connect. I would like to hear from you again. Will you post an update as you can?

Just wondering, do you have family and friends nearby who can support you during this time?

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