Need some input on my near-coma mother.

November 21, 2006 1:24 PM

My mother has been kept asleep and paralyzed for almost 3 weeks now, from a horrible drug reaction. I want some advice on how she can/if she can/when she will recover.

My mother, on the advice on her doctors, was taking weekly injections of Methotrexate for her psoriasis and related issues (psoriatic arthritis, for one). There were no problems AFAIK until 4 weeks ago when she started developing a bad cough and ultimately she was forced by my stepfather to go to the doctor, who put her in the local small town hospital, who realized they were out of their league and shipped her to a larger hospital. Almost immediately they knocked her out and paralyzed her, and inserted breathing apparatus, etc. That's now been switched to a breathing tube through a tracheotomy.

There were a a few scares...her lungs have one area about the size of my fist on one lung that is clear. The rest is damaged, and full of fluid. Her bloody pressure had a few serious spikes (210 over ??) but has now stabilized. She's been retaining fluid that has made her left arm/hand quite puffy and there were concerns over the ability of the right side of her heart pumping effectively (but I have yet to get a followup on this issue, which may have pre-existed). She gets lung xrays every morning and if there is improvement it's very subtle and slow.

Now...I'm at a loss what questions to ask here, but I hope that doesn't impact on whether this question stays put. Mostly I guess I want some input on what are the likely chances of her coming out of this all better, what are the chances she may never come out of this, and what are the chances that she's come out of it but perhaps have to be on oxygen for the rest of her life. Any advice is welcome. Thx in advance.

posted by Kickstart70 to health & fitness (26 comments total)

Gah, Kickstart, I'm really sorry to hear you're going through this. Are you in the area so you could schedule an appointment to talk with her doctors? If not, they're generally willing to make a phone appointment to talk about the prognosis, etc., but I always find it's valuable to see the doctor face-to-face if possible.
posted by nixxon at 1:36 PM on November 21, 2006

Kickstart, I think you'll have the sympathies of anyone who comes across this thread, but I don't think that the question you're posing is answerable by any of us. About 99% of the people who read and respond to this question are going to be people with no medical knowledge at all, or no medical knowledge that relates to your mother's condition; the 1% that might possibly have medical knowledge relevant to your mother's condition would most likely not be able to provide you with the information you seek without physically examining your mother. I think your best bet is to try to schedule an appointment with your mothers' doctors in order to get your questions answered. You have my sympathies and my best wishes.
posted by WCityMike at 1:41 PM on November 21, 2006

I'm with WCityMike, though in modern medicine, trying to track down someone to talk to may be difficult, as may be having the fortitude to discuss the situation. The duty nurses might be some help in tracking down someone to talk to. If you're there on a regular basis (which it sounds like you may be if you're getting all this information), tracking someone down shouldn't be super difficult, though at least in my experience random hospital staff isn't going to be necessarily going out of their way to help you tracking someone down.

In my limited experience I've found they generally prefer dealing with one person which may be your stepfather if he did the admissions and is dealing with things. That may be a helpful "in" as well. Hopefully your relationship with your stepfather is a good one. If not, perhaps this is a time in which you can put your own issues aside in light of the situation.

If you're going to have hope at this point, its in the fact that the human body is a pretty resilient thing. You and your family would obviously prefer to have Mom home and back to normal, but it may be something of a long road to get there. I wish you the best of luck in this -- its going to take both a ton of strength and patience.
posted by Ogre Lawless at 2:08 PM on November 21, 2006

Thanks for the answers so far...I guess I'm grasping at straws looking for something to drink hope from (to mix metaphors badly).

I spoke with the doctor a week ago and relayed reports through my stepfather haven't really changed any of the prognosis as far as I can tell. Unfortunately, me with a 5 month old daughter and car that overheats whenever I climb a hill and little-to-no money to spare (I'm laid off as of Dec 15), travelling to see the doctors isn't very easy right now. :(
posted by Kickstart70 at 2:09 PM on November 21, 2006

About a year ago I did research on the likelihood of coming out of a persistent vegetative state with enough faculties that I would be happy I had awakened. I was about to give birth and had to fill out Advanced Directive and Health Care Proxy forms, so I really looked into the situations under which I would want care or want care removed. I told my Proxy that if necessary, to let me remain in PVS for about a year, after which he could feel comfortable pulling the plug (well, he might have felt comfortable before that, but a year was my comfort level).

Anyway, research seemed to say that people can come out of comas/PVS after a year and have a meaningful recovery (mental and physical). After a year, the chances of meaningful recovery go down even though a person may wake up. I think there is also some time period by which most coma patients actually do come out (it's something like 3 months) but I can't remember exactly. This site may be the one I got some information from (but it was a while ago and I'm not sure). This article has some details, but I don't know how rigorous it is.

Of course, I am not a doctor and I think there are differences among types of comas, and between comas and PVS, so I cannot fathom how to advise you in your particular situation. You might try to determine if your mother has an advanced care directive or health care proxy form that indicate her wishes in the situation, so that you have some guidance.

Sorry you're going through this, and good luck.
posted by cocoagirl at 2:15 PM on November 21, 2006

My goodness. I considered going on methotrexate years ago for psoriasis but was scared off by the seriousness of it. Were they doing liver biopsies regularly? It's a fairly well-known and established drug... what a terrible thing to happen. I'm so sorry. I hope your mom gets well soon.
posted by loiseau at 2:32 PM on November 21, 2006

Kickstart, I'm so sorry to hear about this. I cannot provide medical advice, as I'm not a doctor and I am not experienced with this particular situation.

However, I am experienced with being a patient of the Canadian health care system. Many hospitals have a patient relations department or family support services team that can help you with this situation. Just after I had my baby, I had to go through various tests at a major Vancouver hospital. I had trouble getting information about anaesthetics and accommodation of my breastfed baby. By working with the patient relations director, I was able to get information from a range of doctors and nurses -- without having to do the work myself. The director contacted various departments, team leads, a pharmacy and so on.

I should also note that you can talk to the community health nurse for "Adults and Older Adults" in your area. If your mom doesn't have a community health nurse assigned, you might want to call the health unit and see if they can help you get some answers. My community health nurse -- assigned to me as a new mom -- was absolutely fantastic. She carried out some research, talked to various people and helped me work out the situation.

Now, you're dealing with your mom's caregivers and you are not the patient. But, if your mom didn't sign anything that said info could not be released, you probably have some rights. At the very least, you should be able to work with the family support services team. Start there and see how that goes. You can ask about contact with a community health nurse, too, if appropriate. (There may be an RN in the hospital who is better to help you.)

I don't know what hospital your mom is at, but I found that my hospital responded very quickly to my emails -- I never even phoned them.
posted by acoutu at 3:07 PM on November 21, 2006

Well, I'm in that one percent WcityMike talked about--I've worked on a small town ICU floor and seen people come and go--sometimes it was people you expected to see at the mall the next week died the next day; others that you never had given a chance to would be at home in a month. You can never tell. Hope all works out in the end for you, and sorry to hear about her.
posted by uncballzer at 3:24 PM on November 21, 2006

Kickstart - sorry to hear about this, and sorry to hear your still having problems with your Forester.

You don't say whether she's currently conscious. You did say they "knocked her out." Is she still "out," or in a forced coma? Is she on life support? Have they done an electroencephalogram (EEG) to check for brain activity? This would likely give you some idea about the prognosis for her awakening and/or recovery.
posted by M.C. Lo-Carb! at 3:25 PM on November 21, 2006

Yep, she's still under, though they've brought her out to check her responses for very short periods. They haven't done an EEG so far apparently, but have said that they don't think she was without enough oxygen at any point to damage her brain. I think mostly they are keeping her asleep and paralyzed so she doesn't cough or try to get the tubes out, so that her lungs can try healing.

I just wish that I had a little more to go on here. When I did speak to the doctors last week, I kind of got the impression that their "we have hope she with be fine" responses were a little forced (how could they not be when she's in a state like this?).

Like I said, I wish I knew more of what to ask (here or to them)....just feeling pretty unqualified and useless at the moment.
posted by Kickstart70 at 3:36 PM on November 21, 2006

Kickstart, I'm so sorry that your family is going through this!

I only have anecdotal support for you. A cousin had a terrible accident a couple of years ago - was struck by a car while crossing the street - and at the hospital, her doctors put her into a medically induced coma. Not for the same reasons as your mom, possibly (though on preview, it looks like the reasons might be similar), but after some healing was done / repair work was performed and she was stable enough, the doctors brought her out of the coma, and she has since made a full recovery. Perhaps your mom was put under for similar reasons and will be able to be brought out of it in time?

It doesn't sound like you've been able to have a very in-depth Q&A session with her doctors, and I would definitely make that a top priority, as I'm sure that there are many variables here. I would ask questions like "What exactly is going on with my mother right now?" and "What is the likelihood of a full recovery?" you may also want to ask them to give you a general time frame for everything, and an idea of what they will be doing next. "What will happen next?" is always a good question. They may not be able to give you a lot of information, but hopefully you'll end up more informed than you are now.

Best wishes to you, your mom and your family.
posted by mewithoutyou at 3:47 PM on November 21, 2006

Well, that's certainly good news that she is responsive.

As far as the rest, only time will tell. The human body can be surprisingly resilient, but very unpredictable as others have observed.
posted by M.C. Lo-Carb! at 3:48 PM on November 21, 2006

Kickstart70, I sympathize with your situation, and extend my concern to your family. IANAD, but I've dealt with chronically ill parents. So, for what it's worth, I'll share what I learned the hard way, subject to correction by any of the docs that occasionally drop in to AskMe.

First of all, you say "Almost immediately they knocked her out and paralyzed her, and inserted breathing apparatus, etc. " A medically induced coma is an elective treatment option for some severe conditions. Basically, it is more humane for very sick patients, who are going to need a positive pressure ventilation machine for some time, and it helps to limit their agitation, and reduce their metabolic demand for oxygen in a very weakened state. So, your mother's docs may have done this electively with heavy sedation, and can presumably reverse the condition at such time as her lung function improves, if that is medically prudent.

Next, if she was being treated with methotrexate, that suggests her doctors were balancing the risks of treatment with methotrexate for the benefit it represented in controlling her other conditions. But methotrexate can have serious side effects on the kidneys and on the immune system, so there could be secondary side effects or problems stemming from developed infections as a result of treatment. In many such patients, it becomes a pretty delicate balancing act.

If a person's kidney function becomes compromised, that can affect many other systems immediately, because besides just filtering waste products, the kidneys are also primary regulators of the endocrine system, and produce a number of substances themselves that signal the body to produce red blood cells, regulate the autonomic nervous system, and various other processes. Kidney function can sometimes recover to some extent, and people with compromised kidney function can be helped by dialysis, drugs like lasix and other diuretics, and targeted vitamin therapy to get their kidneys to work better. But it's another managment complication for a person already sick with other disease.

Often people with severe kidney failure and/or other organ diseases develop CHF (congestive heart failure), which is a condition that can cause excess fluid to appear in the lungs, further straining the heart, and interacting with reduced kidney function. CHF is often treated with antibiotics to keep infection at bay, and with diruectic drugs and dialysis to try to get rid of excess water in the body. But because of what you say about swelling in your mother's arms and fluid in her lungs, it seems that this is another big management issue in your mother's case.

She's obviously a very sick woman, and only doctors with the full knowledge of her treatment are in a position to provide you with an assessment of her condition, as others have rightly said. But in my experience, even with this knowledge, it is hard for doctors to provide clear guidance to family in laymen's terms, sometimes for reasons uncballzer offered. Often, they don't wish to express negative opinions to family members, because it serves little good to do so, and causes additional anguish, particularly in those cases where there is an unusual turn for the better, and the patient recovers fully. So, unless there is a long history of treatment of complications, and a clear pattern of dissolution despite treatment, many physicians are going to be hestitant to "tell it like it is." I think you need to appreciate that, and think of doctors as people who don't like being the bearers of bad news any more than any one else.

But there should be one physician, probably an internist, who is ultimately responsible for managing her care, and the various other consultanting specialists attending her case. If you can get the name of that physician, and have your mother's prior expressed permission, or your stepfather's permission to share medical information, you may be able to have a phone consultation, in which you can have your questions about her treatment answered. Often, an onsite relative will be asked to establish and distribute a "family code word" for telephone contacts, so you may need to coordinate with your step father about this. You identify yourself as a blood relative, and give the doctor or nurse you are speaking with your "code" word to demonstrate you have permission for release of medically confidential information.

But I'd also suggest you try to get the names of her floor nurses, and make it a point to call and speak with them regularly. They can read her chart, comment on changes to her condition, and relay any new medical orders or treatments she gets, along with outcomes of tests and further examinations. Nurses are terriffic at condensing medical jargon for family members, and can offer the practical counseling that physicians are often unwilling to give in direct and simple terms. If your stepfather is having difficulty understanding her condition, or making appropriate decisions, they may also be able to offer you some assessment of his mental state and reaction to the situation. It's never easy watching someone you love struggle with serious illness, and if your stepdad is spending many hours a day at the hospital, dealing with all of this, it can be overwhelming. In such cases, spouses sometimes fail to understand what they are being told, or maintain unrealistic hopes for recovery. In the case of my mother and father, we were fortunate to have long association with the hospital where my mother spent the last 5 months of her life, and the nurses involved in her case helped my father tremendously in understanding what was happening with her, and coming to grips with her dying.

I hope your mother recovers, and given your employment situation and new family responsibilities, I understand your anguish at not being able to be with your mother at this time. And yet, you have to plan for what may be inevitable, and should it come to that, use your time and resources wisely to offer what aid you are able. Probably the majority of people can't do as much for family members as they would like in such circumstances, and I saw no end of guilt and suffering in other families in similar circumstances, when my mother and father were dying. So, I felt tremendously fortunate to be able to move myself to their location in time to prepare and to help. But if you can't do that, do what you can, and express what you are feeling to those who love your mother, too.

Life does go on. But I sincerely hope it does not come to that now, for your mother and your family. Keeping hope realistically has value, and is something of an art. Try to keep hope, and yet remain realistic by sharing the burden of worry appropriately.
posted by paulsc at 3:50 PM on November 21, 2006

Thanks, paulsc, that's the most information on the root of all of this I've been able to get so far.

I've just called the hospital and they just put me off to talking to my stepdad, who just informed me that the last day or so has been 'really bad', which in this situation means pretty bloody awful. I'm waiting for him to speak to the doctor more to get a clearer picture, but the initial statement sounded like her lungs are not improving. I'll followup here when I know more.
posted by Kickstart70 at 4:01 PM on November 21, 2006

All I can say is, my thoughts are with you. Good energy sent your way.
posted by HuronBob at 4:46 PM on November 21, 2006

Hey Kickstart, I'm wishing your mother well. I was on methotrexate for psoriatic arthritis for a while; that stuff made me feel like crap.

I don't know what the odds are for complete recovery. I'm really hoping that your mother's lungs heal speedily. You might find it easier to talk to the physician face to face, rather than trying to call the hospital. At the very least, it's harder for them to put you off when you're actually there. I sympathize. Doctors can be damned hard to wring information out of. Be polite, but insistent if you really want to know all the technical details. Good luck, tons of it for both you and your mom.

After this ordeal is over, there are options other than methotrexate that won't cause the same liver strain/anemia issues. It might be something she'd like to look into some day. Please feel free to email me if you'd like.

I'm wishing you and your family the best.
posted by digitalis at 5:10 PM on November 21, 2006

Kickstart, I am wishing your mother well also. I am sorry her lungs weren't doing well today.

I am so glad PaulSC was able to answer some of your questions. I was going to post something very similar regarding a phone consultation. Get the name of her admitting or primary physician that is managing her care. Call his office, leave your number, and express that you would like to speak with him regarding your mother's care and condition. Of course, he has no obligation to discuss your mother's condition with you, unless your mother has stated her wishes--privacy laws and all, but he will probably do so.

A lot of things have changed when it comes to nurses speaking on the telephone to family members. We really do not know if you are actually a family member or not. Nosy-next-door-neighbor-Nelly could call and claim she was a sister or something. The patient could very well hate Brother Bob and could sue the hell out of the hospital for violating privacy laws. We can't and don't give medical information over the phone unless we are speaking with the physician or another staff member directly related to the patient's care. Remember that the doctor will probably be glad to conference regarding your mother, so don't hesitate to telephone him, as you have been doing.

In your case you mom is intubated and in an induced coma, so I am sure the nurses will take this into consideration and share information with you if you are visiting. Make sure to get your name and number on the chart. The nurses will most likely be glad to put it on the chart so they can contact you if your mother's condition changes.

All the best to you and your mother.
posted by LoriFLA at 7:08 PM on November 21, 2006

Followup.

It's not looking good. Whether from the damage or the air pressure of the ventilator, air is now leaking from her one partially-functioning lung into her chest cavity. They've pulled my stepfather aside and told him that tomorrow will either have some seriously miraculous recovery or will be the start of making her comfortable for the hours/days before she dies. And likely the latter.

Thanks everyone for the words of kindness and the info on the medicine.
posted by Kickstart70 at 9:41 PM on November 21, 2006

My sympathies go out to you Kickstart. Sending good thoughts your way at this very difficult time.
posted by AuntLisa at 9:34 AM on November 22, 2006

God bless you and your family kickstart
posted by heartquake at 1:16 PM on November 22, 2006

Kickstart, my thoughts are with you and your family.
posted by LoriFLA at 7:02 PM on November 22, 2006

Thanks again everyone.

My mother passed away this evening. It was peaceful...after they determined that there was nothing more they could do, they quietly shut down the ventilator and gave her the drugs so she felt no pain. I had a few weeks to get this sorted out in my heart and head, so I'm better off than I guess I would be if it was immediate and surprising. I'm just glad she didn't suffer.

But 60 years old is way too young and I'm very sad that she won't get to see my daughter grow up and that my daughter won't remember her grandma.
posted by Kickstart70 at 8:04 PM on November 22, 2006

I'm so sorry for your loss, Kickstart70. Take care of yourself and your family.
posted by stavrosthewonderchicken at 11:11 PM on November 22, 2006

Please accept my condolences on this tragic loss.
posted by timeistight at 12:22 AM on November 23, 2006

kickstart, I am sorry for your loss. May you find comfort and peace in your family.
posted by LoriFLA at 7:13 AM on November 23, 2006

I'm so, so, so sorry. Kind thoughts to you and your family.
posted by loiseau at 6:43 PM on November 25, 2006