L.Smith
 

My husband has been showing signs of confusion and memory loss. He had a cardiac arrest almost two weeks ago and was without oxygen for about ten minutes. There is the possibility that with the CPR that he was getting some oxygen. One of his doctors feel that there was no brain damage. He is now extremely agitated and he had to be given medication to calm him. He keeps talking about possessions he had back home and he thinks someone has stolen them. I keep telling him that we sold those when we moved which we did sell and could not take to Hawaii with us. Other than that there is no talk about relatives that have passed away. I keep praying that this will pass. I am almost afraid to know and yet I need to face this head on. Frankly, I am scared and confused and need some reassurance. My daughters live in another state and my contact with them is by telephone and text. His daughter is also in the same category. My daughters are both in medical professions and can answer things such as information on drugs or nursing issues. I just wish I knew more and could see into the future. I am scared!

Louise, I'm sorry that you are going through so much, as is your husband.

I'm not sure this is the correct forum for you. Does your husband have myasthenia gravis?

What kind of doctor assessed him for brain damage? Did they do an MRI? He should be seeing a neurologist and/or a neuropsychologist. Also, I would highly suggest testing him for a B12 deficiency, plus other things such as a metabolic panel. A B12 deficiency and abnormal electrolyte levels can affect the brain.

Does he have a good cardiologist? If so, did they assess the cause for the cardiac arrest? Is he on drugs now that could cause mental changes?

There are other types of dementia, aside from Alzheimer's, such as frontotemporal dementia. A B12 deficiency can appear like dementia.

I hope you can find some answers from doctors. There has to be a reason for these mental changes. Has he been tested for sleep apnea? That is very hard on the heart and brain. I wish I could help you more! Please don't forget to take care of yourself as well!!!

Annie

Dear Louise Smith,

I'm so sorry to hear about all that you and your husband are going through. That sounds very difficult.

When there is such a big medical event, sometimes people end up with multiple doctors they need to see after they leave the hospital. Like Annie said, hopefully your husband has a good cardiologist now, if he didn't already have one. Making a visit to his regular internist or primary care doctor might be a good idea, too. They can be good at looking at the big picture. I agree with her that seeing a neurologist or neuropsychologist would be helpful, too.

It's also hard, because it's possible your husband may be on new medications or different doses of the medications he may have taken previously. When your husband see his doctor next, it would be a good idea to write a list of all the medications he is taking and review them with the doctor. Maybe there is one medication, or more, that is adding to the confusion. If so, perhaps it can be adjusted or changed. Another idea is to take the list of medications to your pharmacist. They can also help you review the list. Sometimes the pharmacists can help you make calls to doctors, too.

Annie's comment about sleep apnea is true, too. Often, pulmonologists are the ones who do testing for sleep apnea. If your husband has a pulmonologist, that's a good question to ask that doctor. He may have one now if he was in the hospital with such serious problems.

I send best wishes to you, and I hope things will start improving for you and your husband.

Take care,
Erin

He was diagnosed with MG
He had a cardiac arrest due to his lung collapsing many times. He had eight tubes at separate times put into his chest since this all began. He was transported over from the rehab facility and it was approx. 10 minutes before they got his heart beating again. The medication got the MG in check but then all these other things came about. He apparently had the MG for a a year at least before it was diagnosed. It has been one thing leading into another and it is so taxing.
A specialist phoned today and he is was called in to do the revue and study. A good probability is that being in a hospital environment confined to a bed is a good suspect. He hasn't been outside of a hospital or rehab for almost five months. Looking out a window doesn't count.
He has a multitude of doctors and specialists working with him.
He has been in and out of ICU and Progressive Care and during all these weeks. If it weren't for Armand's 100% disability with the VA we would be destitute. It is truly a gift and not taken lightly. I will be forever grateful for the care that they have given to my husband. He was in Trippler Army Medical Center in Oahu, Hawaii, for almost two months.
Yes, he has a CPAP machine, not that he will always use it. This will be dealt with this when he is able to return home. That is my prayer though, for him to come home. Thank you for replying, it soothes my soul to know that someone out there that understands what all this is about and how trying it can be.

Thank you Erin.
Armand has been in a hospital or rehab with medical staff there also and they have a regimen of medications. We deleted all his meds and they made any necessary changes. I did catch the fact that someone forget to send his depression prescription and Armand started having extreme depression symptoms. I asked them if he was getting that med and they had no record of it. I was put in touch with the doctor and I made him aware of it. He was so appreciative that I was able to clear the mistake that someone should have caught and they missed. It wasn't available in the dose that he takes so I brought his into the facility and he was put on it right away. Even the professionals make mistakes. I have a daughter who is a pharmacist and a daughter who is an R.N. I am truly blessed to have those two.

Dear Louise,

It's very true. Even the medical professionals can miss things, or errors can happen. It's so good you could look over his medication list, and realize that the anti-depressant was missing from his regimen. That can make certainly make a difference, too.

Again, my thoughts go out to both of you. You're both going through so much. I read in your message to Annie that he can receive care through the VA, and that is good news. He really is going through quite a lot, and as you say, it's good to know that the financial aspect of all of this is not a concern, on top of everything else.

I'm also glad you've got support from your family, too, and your daughters have wonderful experience in health care. I'm just sorry they don't live close to you, as I'm sure that part is difficult. I hope you have friends nearby who can also provide some support. Sending lots of caring thoughts to you and your husband.

Take care,
Erin

Louise, Thanks for clarifying that!

My dad was a vet and had good care as well.

Can you say what drugs he is on? There might be hidden contraindications, with foods as well. I would again say that he should have vitamins B12 and D checked, along with some other basic tests like thyroid, metabolic panel (electrolytes can fluctuate with some drugs, as can kidney and liver function), and a CBC. They might have already done the last two, but don't assume that.

Drugs are great. But sometimes an assessment of what is truly necessary is needed. Or in what doses.

You should get copies of everything that has been done, including ECGs, etc. Doctors don't always tell patients everything. And if he doesn't have a healthcare directive, or a healthcare power of attorney, one should be put into place so that they can speak for him. Even a wife should have that!

Those antidepressant drugs are often difficult to withdraw from. Paxil has had a lot of lawsuits due to that. What you need to do is to make sure that the pharmacy and all of his doctors have a complete drug list, especially for those trips to the ER/hospital or to a transitional care facility. A medical alert card and a bracelet would be important for him to have.

He might need to sleep sitting up sometimes. Collapse of the lung (atelectasis) can happen if someone is not breathing in deeply enough. That often happens at night. He, or you, may want to ask a pulmonologist about an incentive spirometer to help with monitoring deep breathing. And I say monitoring, because doing that too much while the chest wall muscles are weak can make breathing worse. A u-shaped neck pillow can help keep the head in place. I recommend a Sobakawa or buckwheat hull one.

A CPAP might not be the right machine for him. Did he begin that before or after the MG diagnosis? There is a new one now called an APAP, or alternating pressure. Please ask if he is on the right machine for his MG. Please tell him that he needs to use a machine every single night. He can't afford not to in his condition. But he needs a new assessment by pulmonology/sleep doctor.

Yes, professionals make mistakes. However, when someone has a potentially life-threatening illness such as MG, doctors and nurses need to double check details and have due diligence.

Have they checked his overnight oximetry? Do they know what his O2 is while sleeping? That could be part of the problem. Have they done an arterial blood gas? An echocardiogram?

His activity level right now is probably limited to PT (physical therapy). They need to make sure things are not too repetitive. Talking too much can cause the breathing muscles to become worse. When someone is in an exacerbation of MG or an MG crisis, they need to reduce the amount of activities they do to almost nothing (except keeping muscles from atrophying).

MG has a high learning curve. There are drugs that people with MG can't have or are relatively contraindicated. Has anyone checked the drugs he is on against that list? Home What if a drug is making his MG worse?

Stress, lack of sleep, hot weather, surgery, and a lot of other things can make MG worse.

What else can we help with? The goal is to stabilize him and to improve the overall condition of all muscles. I hope they are on the way to doing that!

:grouphug:
Annie