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...
I was hoping to be on my Dap by now and possibly not needing plasmapheresis as much or not at all. I try to be upbeat, but sometimes people and situations make it difficult. After the calcium shortage issue was resolved, I thought all was smooth sailing, and the nurses at the outpatient facility where I get my treatments told me that I would get treatment twice a week for a month. They have tried every tactic to discourage me from being there. First, they have to get a bed for me, then they have to go to the blood bank and sign out albumin, then they have to get heparin and calcium. Then they have to hang and monitor the calcium, all of which means work for them, that they are not accustomed to. They have made disparaging remarks about me and to me, all of which I have tried to ignore, but they are wearing me down and they have brought me to tears, but I did not let them see. They have said several things that were outright false, like telling me that the doctor called and told them that I was having my treatments too close together, so then they scheduled my treatments even closer together. Now they told me that the order was only for three weeks and yesterday was my last treatment. My neuro advised me to go to the CEO of the hospital, which I will do if need be. I hate to get people in trouble and jeopardize their jobs even if they deserve it. I just wish people would work harder at their jobs instead of spending their energies on making life miserable for others. Sorry for the long rant, but I needed to get it out.
I have had both out and inpatient PLEX. I prefer inpatient because the see more MG cases. The local hospitals/outpatient centers see few MG patients. The inpatient hospital (Vanderbilt-2 hours away) does a lot of inpatient PLEX.
If the behavior of the nurses persists ask to speak to their supervisor and let her know how it makes you feel. They may need sensitivity training and for sure a better attitude. I would leave a paper trail including the complaint to the supervisor.
If this is still a problem take it to the CEO with documentation and dates. I am so sorry you are going through this. This is not the way medicine is supposed to be practiced. Hugs, Marie
The Red Cross nurse who does my plasma is trying to advocate for me the best she can.
It's odd because I am normally a very strong person , but personal attacks and ill treatment weaken me far more than this dreadful disease.
Thank you all for your kind words of support!
I agree, file a complaint and give consideration also to filing a complaint with The Joint Commission.
www.jointcommission.org
please take care,
Larissa
Linda can add Emory and Mayo to this list of places she has met with incredible insensitivity, and like others had to escape from the hospitals for her own good. Then the local neurologist got her LEMS test.
Under no circumstances should you be treated like that, Linda, but one has to wonder if some of those earlier hospital comments got transferred to your chart there. If someone is going to the MGFA meeting this week maybe they could get ideas about "complaints" when our care is so badly handled and we need to call attention to the problems not just for the individual, but all of us who present looking far better than we are. b.
They want to arrange things according to what is easiest for them, not what is best for the patient. I can understand that they may be feeling overwhelmed or overworked, but that is something they should take up with their supervisor instead of taking it out on the patient.
I am sure things will come to a head soon, as I will have to go back for a dressing change on my catheter Tuesday. I was told Friday that there was no order for them to change my dressing and I knew there was, but there was no use arguing so I just left. I called the doctor when I got home and spoke to his nurse and she confirmed that there was an order for weekly dressing changes and she told me she would call them.