My Mothers Life is in Jeopardy. Please help Us.

Posted by epiphanyofmusic @epiphanyofmusic, Nov 12, 2023

Hello. I will try and be as descriptive as possible.
My mother is 66 years Old. Overweight Woman. She was diagnosed with Lung Cancer 3 years ago (Life long smoker. Quit 3 years ago)
She had a Wedge resection done of the Lung to treat. Chemo (2 years ago) and this year 2 Cryo Ablations done. Same Lung for all 3 events.
She has GERD and Gastritis

Her medications. Famotidine, Dycyclomine, Trelegy, Triceba, Mounjaro, Prednisone, Albuterol

My mother has been to nearly every doctor we could find for this and are receiving no answers for whats going on. We are hoping someone in this big world has seen this or experienced this before.

She has had 2 major life threatening events.
Patterns we have taken notice of prior to these events.
She becomes short of breath days before and takes multiple treatments of Albuterol Inhaler, Nebulizer and Prednisone.
It happens after she wakes up and goes to the bathroom to relieve herself. And it never happens when she is in the Hospital

She has her bipap on. Shes short of breath. Goes to bathroom. Sits down to sleep. Becomes tight in the chest, her breathing becomes shallow. Eventually she stops breathing all together. Her eyes are wide open but they're lifeless. Like no one is in there. Her teeth lock up and are clenched. She turns ice cold and blue in the lips. It looks like she is dying

We get her to the floor, perform CPR On her till Ambulance arrives. During CPR her hands and feet start moving and her eyes a little. Like shes coming back but not fully. Ambulance comes and puts her on Oxygen immediately, her Oxygen is at 80, they say she is unresponsive but eventually she comes back. Her Sugar is over 300, her blood pressure is over 200. She is also extremely bloated as well. Her stomach was like 3x its regular size

They take her to the Emergency Room. By the time she gets to the emergency room, she returns to absolutely normal. Almost as if nothing has happened to her all together. Even though if no one arrives she would no longer be here with us.

They start doing their testing on her. Catscans, EKGs, Blood Work. They show no sign of tissue damage or heart attack, Lungs come out fine and no issues with the lungs. Her blood work shows nothing happened and she never lost oyxgen. They say if she had lost oxygen for 5 minutes she would be dead or on a respiratory and she is not. By the time she gets to Hospital they see no evidence anything happened at all. Even though several of us clearly see what looks like she is suffocating and slowly dying.

They throw theories out at us, all these doctors have different theories but none are bearing any fruit.

Theory 1. Vasalvago. However I read thats fainting, and what she is doing is not fainting at all.

Theory 2. Bronchospasm. However it says Bronchiodiolaters would remedy this and she was using Inhalers and Nebulizer

Theory 3. Sleep Apnea but she sleeps with a Bipap on her face.

Theory 4. She has reflux of the stomach and is triggering a spasm of her esophagus (but Hospital says her throat is fine and cant see it closed )

Theory 5. Her reflux is pushing up food and the bipap is pushing it back down (even though last thing she ate was a turkey sandwich 12 hours before, however she did go right to sleep after eating it and complained she had indigestion and nausea. And burping very loudly

The only thing the Hospital found is that she is backed up in her intestines with feces and not taking large bowel movements. Shes constipated and they think maybe the constipation or her compressing her abdomen is putting pressure on her diaphram.

Other than that. No signs of anything. No covid, no infections, no pneumonia. They cannot see anything and ultimately send her back home to us. And then we live in fear it will happen again or ultimately take her from us.

Please. I am begging you. Someone has to have seen this before happen or know what is going on with her. We took her everywhere in New York we could find and they just tell us we don't see anything.

Thank you, for all the work you do.
- Salvatore Pisano

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Hi, sorry to hear you’re going through this, how terrifying. It almost sounds like she’s having some sort of seizure. The clenched lips and blank stares. Seizure disorders can be very hard to diagnose. When this happens, does she lose control of her bladder? That often happens during a seizure. My daughter had a series of seizures in her early 20’s and it took probably 6 months of tests to come to really no conclusion at all. They put her on anti seizure meds for a couple years , weaned her off and no seizures since. Was told by specialists that seizures can happen randomly for no apparent reason.
However, the low oxygen levels sound more like s heart problem.
I’m not a doctor so just putting out some possibilities. I think I would have her see a neurologist to investigate possible seizures.
PS. In my daughters case, once she got to the ER after her seizures her EKG looked normal. They often rely on witness statements of what the seizure looked like when it was happening. They wanted to keep her overnight in the hospital and deprive her of sleep and monitor her because sleep deprivation can bring on a seizure. We opted not to do that and Thank God it resolved itself after 4 seizures in span of 3 years.
One last thought about the possibility of seizures- exposure to pesticides and other chemicals can also cause them. My daughters first seizure happened in a field while picking tomatoes. The doctors questioned the farm owner about what if any pesticides in he used on his crops, but he claimed he didn’t use any.
Best wishes to you and your mom and let us know if you find answers.

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What a Rubic’s Cube of symptoms!!

I had a left lower lobectomy the end of May and I have severe obstructive sleep apnea and use a bipap (similar to CPAP but maintains pressure on both inhale and exhale.

Since my surgery I have had rib and diaphragm pain when I try to breath deeply. When I get up to go to the bathroom at night I disconnect and then reconnect the hose from bipap to my mask and I find I am hyperventilating like I’m trying to catch my breath. I think I am breathing shallowly in my sleep to avoid the pain trigger. And I get back to normal before I fall asleep again. Not hard to imagine that if your mom is having similar shallow breathing, that could impact O2 levels.

In my opinion, You need a diagnostician or a hospitalist (someone who specializes in hospital resources and how to best knit them together on a given case). Your name sounds like you are in Detroit? What hospital is familiar with her? Could you call office of chief medical officer and ask if either of those specialties are on staff service?

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@detroitmom23

Hi, sorry to hear you’re going through this, how terrifying. It almost sounds like she’s having some sort of seizure. The clenched lips and blank stares. Seizure disorders can be very hard to diagnose. When this happens, does she lose control of her bladder? That often happens during a seizure. My daughter had a series of seizures in her early 20’s and it took probably 6 months of tests to come to really no conclusion at all. They put her on anti seizure meds for a couple years , weaned her off and no seizures since. Was told by specialists that seizures can happen randomly for no apparent reason.
However, the low oxygen levels sound more like s heart problem.
I’m not a doctor so just putting out some possibilities. I think I would have her see a neurologist to investigate possible seizures.
PS. In my daughters case, once she got to the ER after her seizures her EKG looked normal. They often rely on witness statements of what the seizure looked like when it was happening. They wanted to keep her overnight in the hospital and deprive her of sleep and monitor her because sleep deprivation can bring on a seizure. We opted not to do that and Thank God it resolved itself after 4 seizures in span of 3 years.
One last thought about the possibility of seizures- exposure to pesticides and other chemicals can also cause them. My daughters first seizure happened in a field while picking tomatoes. The doctors questioned the farm owner about what if any pesticides in he used on his crops, but he claimed he didn’t use any.
Best wishes to you and your mom and let us know if you find answers.

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Hello. Thank you for your response. She is getting an EEG done of her brain and awaiting results. Her heart results come back fine and showing it isn't coming from her heart

REPLY
@pb50

What a Rubic’s Cube of symptoms!!

I had a left lower lobectomy the end of May and I have severe obstructive sleep apnea and use a bipap (similar to CPAP but maintains pressure on both inhale and exhale.

Since my surgery I have had rib and diaphragm pain when I try to breath deeply. When I get up to go to the bathroom at night I disconnect and then reconnect the hose from bipap to my mask and I find I am hyperventilating like I’m trying to catch my breath. I think I am breathing shallowly in my sleep to avoid the pain trigger. And I get back to normal before I fall asleep again. Not hard to imagine that if your mom is having similar shallow breathing, that could impact O2 levels.

In my opinion, You need a diagnostician or a hospitalist (someone who specializes in hospital resources and how to best knit them together on a given case). Your name sounds like you are in Detroit? What hospital is familiar with her? Could you call office of chief medical officer and ask if either of those specialties are on staff service?

Jump to this post

Hello we are in new York. I will ask about a diagnostician. The Hospital is not helping us at all. They cannot find anything wrong with her

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I’m not sure where in NY but when I lived in NYC I found docs at Hospital for Special Surgery in Manhattan’s upper east side to be excellent.

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@epiphanyofmusic

Hello. Thank you for your response. She is getting an EEG done of her brain and awaiting results. Her heart results come back fine and showing it isn't coming from her heart

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@epiphanyofmusic, welcome to Mayo Connect. I'm sorry to hear that your mother is experiencing these episodes. It's scary to not know the cause, and our bodies are so complicated, it's not always easy to find the root of problems. Sometimes we don't know what causes these types of episodes. I am glad to hear that they have checked her heart and are continuing to look for the cause by ordering the EEG.
Her case is complex, did the EEG show any areas of concern?

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I’m sorry. I hear the desperation in your comments. But this is not a site full of doctors. My hope for you is that you can find good medical support in your system of healthcare.

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Memorial Sloan-Kettering is supposed to be one of the finest cancer treatment centers. If you are in the New York area, you might want to see if they can treat your mother. They may be able to get to the bottom of this conundrum.

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