COPD

[Jinny]

Hello, my sister is presently in an ICU and has been placed on a ventillator with a tracheotomy. I spoke to the doc today and he said she has a 10% chance or survival. Although I heard that, I am confused, as they are now also talking about rehab, and movng her to a facility to help wean her off the ventilator. Has anyone had experience with this. I would think that 10% survival chance is pretty slim. If so, what would anyone be able to tell me about this. She has had end stage emphasyma for quite a number of years. Thank you. I appreciate all information.

[Davy9]

As emphysema progresses it makes breathing more difficult in many ways. Normally we do not consider how much work we do when we breath. Not only is it easy at rest but we also have the ability to easily increase our breathing when we exercise. If we push ourselves at an exercise we get short of breath and that's usually because we're out of shape. We then relax and recover our "wind".

The work of breathing can become so hard for people with emphysema that they are short of breath sitting still. Breathing at rest is hard enough work to keep them constantly short of breath. Anything that makes this work harder can cause them to go into respiratory failure. The treatment then requires that they be put on a mechanical ventilator. The ventilator will assume their work of breathing while the underlying ailment is treated. Once the ailment is reversed they should medically be able to come off of the ventilator. But they can have trouble doing that. They have experienced the joy of breathing without the high workload and they have become more de-conditioned while on the ventilator. As the ventilator is weaned away they are unable and/or unwilling to resume breathing on their own.

Weaning emphysematous patients from mechanical ventilation is a specialty. Some will not wean and will become dependent upon the ventilator. Others can be rehabilitated through special exercises, diets and approaches. Once off of the ventilator they might be able to be further conditioned through rehabilitation to be in their peak physical condition. Essentially they are conditioned relative to their lung disease the same way an athlete is conditioned without any disease state.

It takes a lot of motivation and hard work by the patient to go through this rehabilitation process. You can help your sister by keeping a positive outlook and inspiring her to work hard to be free from the equipment. You and she will have a team of professionals to work with and they can help you help her.

[Jinny]

Thank you for your response. Today, when I visited her blood pressure was high, 190/98 and they were trying to bring that down. They did not talk about weaning her off the ventillator at all today. If she has only 10% lung capacity, would that even be possible to be off a vent? Realistically, what do you think we are talking about for a time frame? It seems like it is getting much closer to "end" of time. I know that no one can predict, but I would think that someone could give me a clearer picutre of weeks or months, or a year or so. Also, if she is not ever able to come off the vent because she is weak etc., does that mean that she would stay in a rehab center, or doe they have home systems for vent patients?? I know nothing about this, and since her husband is making all the decisions, (which is keeping her alive as long as possible at all costs), I have so many mixed emotions about it all and would like someone to give me some more factual materials, or tell me of what they have experienced that is similar. I am thinking that her blood pressure being high, and I noticed swelling in her lower extremetities, and also her hands, that other things may be going on. Your thoughts?

[Davy9]

Many good questions......

1st.. There are many things that COPD does to the body. The lungs are central to our bodies and when they are compromised other things get compromised too. In the situation of the swollen extremities it is the heart being effected by the loss of the capillary beds in the lungs.

2nd.. 10% lung capacity is a nebulous term. Normal lungs have a 70/30 gas exchange ratio. About 70% is used for gas exchange while 30% is conducting airways (non gas exchange). These values can actually be measured. The threshold for adequate spontaneous respiration that I was taught occurs when this value becomes reversed. When 70% is non gas exchanging and only 30% is gas exchanging. Supposedly at that point the individual can no longer sustain their own breathing and requires some form of mechanical support. Exactly what they mean by 10% lung capacity I do not know. Obviously her lung status is very compromised.

3rd.. People do live at home using ventilator life support. There are portable ventilators and other support equipments designed especially for home care. There are home care companies that will provide services for the home ventilator patient.

Home care may not be the best option for your sister. Patients who do best with home ventilator care are those whose lungs are not diseased. They have essentially normal lungs but cannot adequately use them most frequently from nerve damage due to trauma or disease. You may remember Christopher Reeves (AKA Superman) as being such a case. Thousands of ventilator dependent polio victims from the 40's and 50's lived at home on very rudimentary life support systems.

People like your sister who become dependent on ventilators offer little leeway in their ventilator management. They may require high levels of sterile bronchial hygiene to keep airways clear. They have little tolerance for mistakes. They are often very high maintenance for a home setting. But, I have seen it done. Each case is different.

On the other hand she could remain in an institution and have her ventilator care optimized for independence. The care plan accepts that she will not wean and is changed to make her as functional as possible on the ventilator. They can put her on a portable vent. She can get out of bed, get dressed and be out in the facility. She could go outdoors and eat in the dining rooms. She could ambulate while on the ventilator. It is even possible that she could be taught to speak while on the ventilator.

4th.. It would be pure conjecture to try and advise on her long term prognosis. You do your best to make things as good as they can be and take things as they come. The family may want to meet with a medical social worker and discuss future care options including the prospect of hospice care.

[Jinny]

Thanks you for your insightful responses. My email is [moderator note: e-mail address has been removed] if you would feel more comfortable talking about specifics as you have learned from your experience. I know it is conjecture to try to figure out when, but I would think that you would have some kind of an idea. My brother in law her husband, is in denial and thinks she can go home. I am hoping that won't happen, they have animals, he would not be able to care for her properly, as you suggested with the hygiene etc. They have not mentioned any hospice. They have only talked about the possibility of moving her to a rehab facility where they could think about weaning off the vent. I know I am asking questions that are impossible to determine, but as you have seen in your past experience, will she more likely go into a coma, or would she more likely have a stroke or what? Also, I noticed yesterday that one of her pupils was dilated in her eye. Is that an indication of anything? I feel that it is not my place as her sister to speak directly with the doctor to ask these questions as it would overstep her husband, so I appreciate your help.

[Davy9]

Give her time to work at weaning from the vent. There's too much not known to suggest that she won't wean. She could wean, gain back her strength and return to living at home and perhaps in better condition than before this episode. Join with them in keeping a positive outlook. I will help in any way I can but seriously without actually being there and assessing the situation personally my input will be generally informational and limited. My own mother has a form of COPD and since we lives cities apart there's not much more that I can do to help her through her sundry difficulties.

For the time being it sounds as though her acute episode has been taken care of. She is dependent upon the vent and needs some rehab work to help regain some strength and the confidence to sustain her own breathing again. That's the direction they are headed in. On a day to day basis see how things progress. They can work to slowly pull the vent away or they can try and take it away entirely for short periods of time, or a combination of the 2. Wait and see how they approach her weaning and how well she responds. It could take days or weeks. You are very thorough with your inquiries and I look forward to hearing how things proceed from here.

[jennyj1979]

Jinny,

My father has similar issues to your sister. Do not give up hope yet. He has been on a ventilator a number of times.. the last time we were told he would never live without it, and he came off of it.. that was a year ago! Just try and stay optimistic and hopefully things will turn out well. My thoughts and prayers are with you!

[Jinny]

Thank you. She has now been moved to a rehab hospital. I just wondered how long she could go on with only 10% lung function, and I was looking for a realistic idea. It's all pretty confusing to me.

[Davy9]

Hi Jinny,

I want to refer you to another thread on this forum entitled "End stage COPD- more questions" by Jennyj. The situation her dad is in is very similar to the one your sister is in. Some of the information there will as well apply to your sister.

You ask, "how long can someone go on with only 10% lung function?" The answer is that if they end up medically stable and relying on a mechanical ventilator they can live for weeks, months or years. The machine is doing the work needed to keep them alive even with very advanced lung disease. You can expect that many things have to be done correctly all of the time when someone ends up using a ventilator for long term life support. If things are done right and things go well she could become a reasonably content ventilator dependent patient for quite sometime. On the other side of the same coin things can go wrong and they can go wrong quickly. Please understand that it is not so simple to be absolute and clear about her future. That is about as accurate as is possible. But please do ask questions when have them and if there are specific answers you will get them.