Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Although not all of us are going to have a respiratory crisis, almost all of us will be in the hospital at one time or another for one reason or another, and our MG may complicate our care (hospitalization and/or our care is bound to complicate our MG).
The most important person to have at that time is someone who knows us and our doctor and is willing to stay with us throughout hospitalization (obviously it would be best to operate in shifts). Ideally this person is knowledgeable, charming, observant, and unafraid to ask questions. This is our personal advocate.
Another important person whose existence is often unknown is the patient advocate. In most hospitals of any size there is someone who is employed by the hospital to speak for the patients, a troubleshooter. When admitted, or before, find out who this person is and where located before trouble begins and hope not to need her (it is usually she). This is someone who knows the staff and administration, and has influence with both. If there is a problem with getting medication on time, if the staff seems to want to discharge you prematurely, if your medications to avoid list is not being followed, or your neurologist called when needed, this is a person who can intervene. You can always request to see the patient advocate, and the request alone can sometimes solve the problem. This person is HIRED to be knowledgeable, charming, observant, and unafraid to ask questions and can solve problems. Hospitals don't like to have disgruntled patients or lawsuits or be accused of substandard care.
The name and location or phone number of this person may be on the Patient Bill of Rights, which is sometimes handed out when admitted. Since we all know the patients don't really have any rights (sorry for the cynicism) we often neglect to read it., just sign and hope for the best. But if we are not in crisis it might be worthwhile to review it.
And yes, we have used the patient advocate, and yes the problem my dad was having was resolved. Has anyone else had experience with a patient advocate?
b.
The most important person to have at that time is someone who knows us and our doctor and is willing to stay with us throughout hospitalization (obviously it would be best to operate in shifts). Ideally this person is knowledgeable, charming, observant, and unafraid to ask questions. This is our personal advocate.
Another important person whose existence is often unknown is the patient advocate. In most hospitals of any size there is someone who is employed by the hospital to speak for the patients, a troubleshooter. When admitted, or before, find out who this person is and where located before trouble begins and hope not to need her (it is usually she). This is someone who knows the staff and administration, and has influence with both. If there is a problem with getting medication on time, if the staff seems to want to discharge you prematurely, if your medications to avoid list is not being followed, or your neurologist called when needed, this is a person who can intervene. You can always request to see the patient advocate, and the request alone can sometimes solve the problem. This person is HIRED to be knowledgeable, charming, observant, and unafraid to ask questions and can solve problems. Hospitals don't like to have disgruntled patients or lawsuits or be accused of substandard care.
The name and location or phone number of this person may be on the Patient Bill of Rights, which is sometimes handed out when admitted. Since we all know the patients don't really have any rights (sorry for the cynicism) we often neglect to read it., just sign and hope for the best. But if we are not in crisis it might be worthwhile to review it.
And yes, we have used the patient advocate, and yes the problem my dad was having was resolved. Has anyone else had experience with a patient advocate?
b.
The problem with an advocate is they can't do much advocating when one is in a coma. When we are not in a coma, we can advocate for ourselves, armed with enough information.
Three years ago, I had an emergency resection of my decending colon owing to a burst abcess (diverticulitis). While recovering, I was on IV morphine. Morphine is fine with me, for a while anyway. After about 24 hours post op, I become nauseated and then violently ill. I asked the nurse nicely to please stop the IV. I'm not sure an advocate could have said it differently. I explained that I was becoming nauseated and light-headed. At first, she just brushed me off, saying she'd check.
Hours went by and I became sicker and sicker. I asked two or three more times to stop the IV. She refused, so I turned off the IV valve and snapped the IV line with my hands. Unfortunately, I sprayed the room with blood before I could tie off the end of the tube connected to my arm. :-)
The nurse came in and started to scream at me and I told her in no uncertain terms to get the he!! out of my room and that she was off my case. She told me I couldn't stop the IV without doctor's orders. I told her she was wrong and that my action showed you could indeed stop an IV without doctor's orders. Later, the nurse's supervisor came in to apologize to me for the nurse's actions and she was disciplined.
My point here is that there is so much to despise about medical incompetence that the individual must school themselves in ALL aspects of their care, based on their knowledge of their disease. If a medical professional suggests anything contrary to your informed knowledge base, then you must consult someone or something before agreeing to any treatment. When in doubt, delay a decision until you can consult with that resource.
I will say - if it isn't obvious - that I have no problem being combative with a caregiver who I believe is either incompetent or negligent. I don't think an advocate would do a better job for me than I can do myself. I can't imagine it's different for anyone else. When in a coma, it's best to let the doctor make decisions.
The only time I really see a benefit to an advocate is at end of life. My father had a severe stroke and no brain function - "brain dead." Once we learned the result of the ECG, we "pulled the plug," as he had requested. If there had been no family, I think this would have been the perfect situation for an advocate.
Curt
debra
Curt
I tend to hear and not hear things that are and aren't said when I am a patient. I even like to have someone there with me at doctors appointments because I tend to need "clarity" when anything emotional turns my brain off ;)
I will use this information if I ever need it!
I even wish I would have requested someone to be there with my husband and I during my testing on Thursday as today I am reading over the clincal observations and reading things like "Cardiovascular: S1 and S2, regular rate and rhythm. No murmur, rubs or gallops". Wouldn't that have involved a stethoscope? I don't remember a stethoscope at any point during that day!!! Also "Patient reports swallowing and speech difficulties" Not a word in there about how I was sounding very raspy and barely able to speak at times during this visit! I am angry about these reports and am finding SO many problems in the notes I don't even want to pay this bill now! Under medication it says: "Valium and she took Zoloft for three months but it made her affect blunt so she stopped taking it." I took two valium last week to assist with prednisone side effects, and the zoloft was a year ago! They did not list that I was taking mestinon or prednisone!
So yes! Get people in there, for the patient's sake as well as the hospitals!!! Sorry about the rage! I TOTALLY AGREE AND WILL USE THIS ADVOCATE IN THE FUTURE! Thanks again!
Then they reduced my mestinon until I was choking the worst I had ever choked for 3 days and sent a swallow therapist to teach me to strengthen (see: fatigue) my throat muscles and changed my diet to soft food. I could have aspirated and they never did a chest X-ray.
I thought the attending knew everything since the swallow therapist, the nurses and all the residents were informed but he was stunned when I confronted him about the mestinon and said he would raise it. I ate regular food that night without any choking after 2 of my usual doses of mestinon.
I needed someone to tell the docs to do something! It is tough to advocate for yourself when you cannot stand or lift your legs, you are choking and having breathing problems. I was in trouble and they thought I had control issues since I wanted to increase my mestinon dose. And they said that the oxygen was unnecessary since I was not in respiratory "failure." If I had a fully functioning advocate, perhaps they would have listened to her? I sure as have to hope so!
Sometimes, it's not the treatment you receive but the LACK of treatment that can harm too.
debra
I agree with you except that the only one who can effectively advocate on your behalf is another - not you caregiving - physician. While many doctors really are empathetic and listen to us, the vast majority are too busy and too smart to listen to one of the great unwashed masses. That means we need an advocate who has an MD and, therefor, the same stature as our caregiver. My personal advocate is my best buddy. He has a PhD in economic and far more training than most MDs...but do they listen. Nah, too high and mighty.
Sometimes you've got to fight fire with fire because being nice or having a strong, but uncredentialled, advocate doesn't work.
I went into that coma like you are describing, and couldn't advocate for myself. All went black while four orderlies were handcuffing me to the bed under the direction of Nurse Rachid, all bacause I couldn't tell them to intubate me. Frightening. Then I got real...and got mad.
Curt
I don't think everyone knows these people exist and that they are available to help with problems. They can and do intervene and at the very least can tell you why things are the way they are. It is the not knowing sometimes that is so frustrating. Obviously it is extremely difficult to deal with mean or passive aggressive people, but most of the time the staff is doing the best the can with the resources they have (that includes their understanding of our illness).
b.
For me, I'll fight tooth and nail and refuse redundant tests, all of which cost a fortune and provide no long run benefit in our outcome. I'll also turn an unruly caregiver out the door. Incompetence is another huge pet peeve.
Eighteen months ago, when I was nearly blind from cataracts in both eyes, I connected with an ophthalmologist who put me through all the drills and tests for about 6 weeks prior to surgery. The day before surgery, she called me up to tell me she cancelled my surgery because I had keratoconis. I knew what that was and couldn't believe my ears (or eyes). Long story short, she was nuts. Yet, others believed in her. Many believe in their caregivers. Realize, too, that they may be nuts, as well.
Curt
I learned this little lesson the hard way. There is no reason for us to go into full respiratory arrest when prednisone can allay the symptoms, if we catch them quick enough.
Why is there constant pushback over the use of prednisone? Side effects are temporary and mostly reversible. Death isn't.
Curt