Help for Mom

Posted by irishkab @irishkab, Sep 28 9:52pm

My mom is currently in the hospital (not Mayo yet) with serious lung issues. She is currently on a ventilator because the doctors say her body isn't strong enough to exert the pressure needed to make her lungs function properly. My mom had basically passed out from too much carbon dioxide in the blood. The doctors say that her lungs are really stiff and are hard to expand. She has had fluid in one lung off and on since she had lung surgery in 2010 to remove a layer of scar tissue or something from one of her lungs. The doctors said that it looks like she has fluid in her lungs but nothing comes out. Since she has been on the ventilator, they have been doing nebulizer treatments that have really helped to loosen this thick mucus in her lungs that she has been complaining to her pulmonologist about for well over a year. Today, day 3 on the ventilator, he basically wrote her off and said that there's no hope and she will have to live the rest of her life on machines and in a nursing home. The other pulmonologist we saw on days 1 and 2 said that there is still a lot unknown yet and we have to give her time to see how or if she improves. I told the nurses that I wanted the pulmonologist she had for over a year taken off her case. Has anyone had anything like what my mom has? I feel like there has to be more options. With her being tied to a ventilator right now and in a hospital, how could I get Mayo to review her case? With the top pulmonology dept in the country, I would think that they would at least try to give her a fighting chance, instead of writing her off without even trying anything. I would appreciate any advice.

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

@irishkab First, let me welcome you to Connect. This is very difficult when a parent struggles for life. Doctors can be very matter of fact about medical issues and forget what it is like for the family to receive that information. It is also possible that there is more the doctor didn't say. If you have not done so, I recommend signing up for the portal of the hospital system, and sign in and read the medical records. That will tell you what the doctors think, and as you said, there is a lot of unknown right now. If you were to apply for care for your mom at Mayo, you would probably need copies of the records anyway. Do you have medical power of attorney for your mom? Do you know what her wishes are regarding medical decisions on how much medical care she wishes to receive in the event of serious illness? The hospital may have asked some of this already.

Have they done blood tests to see if she has an infection like pneumonia? It is so easy for trapped phlegm to turn into a bacterial infection.

It is worth asking WHY there is resistance to lung inflation for your mom. Her doctors may not have an answer for that. I have allergic asthma and I have a physical problem expanding one side of my chest and it starts to trap phlegm because it's a physical issue. The scar tissue in your mom's lung would also represent a physical issue that causes resistance. I have had a physical therapist help me breathe better by working on the tight tissue with a procedure called myofascial release. I had done this MFR work for about 10 years for various issues and it is so beneficial. MFR can help break up scar tissue and all surgery creates scar tissue. Lung tissue is mostly fascia that is supposed to expand with blood vessels running through it.

I've not been able to get in and see my therapist, and I recently did a stretch to help me breathe better. It is very common for the front of the chest to get tight because we all do things reaching forward all the time. I also have tightness in my neck that pulls into my chest, so I found that tight area and I pressed into my chest against a firm wedge and pushed from the sternum upward and across the pectoral muscles to stretch the fascia into the chest. I could feel that pull into my lung and near the heart and release the congestion there. Just after that I was clearing it in my throat. Prior to this, I felt like I had mud in my upper left lung. A physical therapist trained in MFR, may be able to see your mom at the hospital and see if there is anything that may help. They can feel where the restrictions are with their hands. Many doctors don't know about MFR. Mayo does have a chiropractor who does MFR in a rehab unit in Rochester which another patient mentioned.

Here is a provider search for MFR therapists:

Here is our discussion on Myofascial Release where you can learn more.
Neuropathy – "Myofascial Release Therapy (MFR) for treating compression and pain"
There could also be other muscles involved in breathing that are restricted with tight tissue such as below the rib cage where the respiratory diaphragm is working to expand the lungs by creating a vacuum. That is how lungs expand because of negative pressure when the diaphragm expands and creates a void of lower pressure, and the higher air pressure outside the body expands into the space. Some patients loose breathing ability because of nerves that service muscles for the lungs stop working or are damaged such as the phrenic nerve. There is a surgeon who grafts nerve to replace the phrenic nerve, but he's not at Mayo. Here are a couple links-
My elderly mom was just in the hospital with bacterial pneumonia, and water on the lungs and sepsis. They did a procedure a couple times to remove that fluid with a long needle and of course treated the infection with antibiotics. She has a type of heart failure and heart failure can cause fluids to back up into the lungs causing breathing problems. I would expect that in your mom's case, they would have had an assessment with a cardiologist.

You certainly can request a consult at Mayo. You can do that by filling out some information at this link, Someone from Mayo would call you back to arrange a review of records and tell you what you need to collect. I don't know how far you would need to travel, and of course she would need to have in route care during that time. Urgent patients do arrive at Mayo in helicopters daily. It is also possible that Mayo specialists could advise the medical staff caring for your mom where she is now. There is also the Mayo Clinic Care network where hospitals across the country have relationships to consult Mayo experts.
The Mayo Clinic Care Network (MCCN) helps keep care local and in many cases, spares patients the expense and inconvenience of additional appointments and unnecessary travel. Mayo Clinic specialists work together with physicians, consulting and sharing resources to complement physician expertise –
– eConsults. Providers within the care network can connect electronically with Mayo Clinic specialists and subspecialists to ask questions about a patient's care. The consultation is documented in the patient's medical record. There is no additional cost to the patient.

There is also the Mayo Clinic Health System which are smaller hospitals throughout Minnesota and some in western Wisconsin and northern Iowa that are under the Mayo umbrella. Sometimes it is easier to get into a Health System Hospital than to get into Mayo. These hospitals of course have access to Mayo and to referring patients to Mayo for further diagnostics.
I hope all this information gives you some options to explore and some hope. What would your next step be? Is your mom's condition stable or has anything changed since you wrote this post? I'm curious about your member name, are you Irish? I am about half Irish and I did make a brief visit to the country some years ago.



I'm sorry it's taken me so long to get back to you. I had a reply all typed up a few days ago and then it was gone. I have also been busy with my mom. She had a tracheostomy a week ago and this past Friday she was moved to an LTAC. She's been working on getting off the ventilator, but has been having some anxiety issues that have caused AFib since she has been at the LTAC. I don't think she had any issues in ICU with AFib, so I'm not sure what is going on there. I met a doctor there today and he already seems convinced that she'll never completely come off the ventilator. How can you even know someone after less than 48 hours? The nurses seem good, but it just scares me that she is going to get depressed and not fight if she hears the doctor talk like that. I can't be there every day to keep her positive because I have to go back to work. It's an hour drive from work and an hour and 45 minutes from home. I would like to think that Mayo would be better, but right now I wonder about that too. I'm scared and out of positivity myself right now. Maybe I'm just overthinking everything right now.

Yes, my great grandparents came from Ireland. I was there in 2019 and just love the country.

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