More plasmaphoresis treatments?
AnonymousAugust 3, 2006 at 8:17 am
My husband has been totally paralyzed with GB for two months. He is on total life support. After six weeks he showed a tiny bit of motion. He can now move his head about 1/4 inch to the side and 1/4 in or less up and down. Instead of communicating by eye rolling for yes and no, He can use the slight head motion but this works only when he isn’t fatigued. Yesterday, the hospital and insurance company insisted that he was “now stable” and insisted on moving him to a nursing home like ventilator ward even though the case manager RN, my husband and myself did not think he was stable. He was still having occasional heart rate drops. When they moved him to the new floor he was immediately in terrible distress. The new place was what I call a cess pool. They pretty much ignored me and him and didn’t even hook up his various support lines properly. For over half of the day I ran back and forth begging for more attention to his condition and telling them that he was spelling out that he was in severe distress. Every time I asked for help, they refused it and said that a patient having some distress after being moved was normal and that I just should wait. They started demanding that I leave and “let them take care of him.”
Finally he started spelling out “pray” “pray” “pray”. I also had the care of John’s mother who has Alzheimer’s disease quite severely. After a day of sitting in the hospital with me afraid to leave him, she hadn’t had any food and was getting very difficult to manage. I called a minister friend who had visited John frequently and could spell communicate with John to come and sit with him and pray for him. When the minister came, I took Mom home – fifty miles away. After feeding her I fell into an almost unconscious exhausted state and did not wake up for four and a half hours. When I woke up there were many messages on my answering machine. One said that John had had cardiac arrest and been taken to the intensive care center at a neighboring large medical center. When I called them, he was still alive so I got someone to stay with his mother and rushed to the hospital. Today, they are going to put in a pace maker and replace his pic line that has been in for nearly two months. The neurologist came for the first time in two months and now wants to do more plasmaphoresis treatments. He has had seven of them and also gammaglobulin therapy when this all began two months ago. I don’t want to sign permission for more plasmaphoresis because I think he is in too unstable a condition. I also wonder whay they need to do more of these if he is starting to show some increased movement and the improvement seems to be increasing even though at a slow rate. Can anyone give me some advice. Will continued plasmaphoresis help him at this stage or just be unnecessary and hard on him. By this point in time, I am very suspicious of the whole medical profession. I think that money is the main factor in many decisions made. Can anyone give me some advice? By the way, the minister friend saved John’s life. He also went repeatedly and asked for help at the nursing station. They gave him the same – get out of our hair and go away and leave him to us treatment. Finally, he just came down and asked the respiratory person who had been one of the worst to try to throw us out and asked that she come down and suction John since it had been quite a while. When she came, she couldn’t get a pulse and turned to the minister and said, “you were right.” I am an animal loving person who can’t even kill flies and roaches. I feel the most angry I have ever been in my life and if I had a gun, I feel like I would like to go in and shoot the place up. Don’t worry, I won’t get a gun and don’t know how to shoot, but I might pull all the hair out of several of those nurses and respiratory people’s head if I see them again before I can cool down. I have gone over and demanded all of his medical records and I am certainly going to write a complaint and give it to the patient advocate at this large rehabilitation hospital. The minister visits there frequently and has over a period of years seeing other patients there and he said that he has never before seen this level of incompetency and disregard of a patient’s feelings as he saw yesterday. John was a working farmer in very good health with an excellent heart before this happened. He was a health nut who had never smoked, drank, or taken drugs in his life before this happened. He had just had his 60th. birthday. The sad thing is that he will most likely be sent back to the rehab hospital and the same vent ward where this happened. I can’t afford to make too big a stink and burn my bridges with them.
August 3, 2006 at 9:11 am
I am so incredibly sorry for you and your husband and family. I am new to this myself. I will pray for you two as well. I am so sorry my friend, I wish I could do something for you but all I have are prayers I hope God in Heaven hears.
I am crying for you….
AnonymousAugust 3, 2006 at 10:19 am
Dear Friend ~ our hearts are with you and John! Now that you are his advocate, never stop demanding for his needs ~ even if you must “go to the top”. How he has been treated is criminal. Others from this “Family” will be along to encourage and support you, and share what they have learned. Please check your email for immediate support from Shannon. She has been where you are.
Listen to your instincts and “fight for his life”. My prayers are with you.
AnonymousAugust 3, 2006 at 12:19 pm
I learned the hard way that whenever the hospital staff tells you to go home and leave everything to them, do not listen to them. You have every right to be there with him, and you’re right for demanding that he get the best treatment available.
I will keep you and your husband in my prayers. I have to get back to work right now, but I’ll try to post again tonight.
AnonymousAugust 3, 2006 at 12:35 pm
Have you asked to speak to a patient advocate? They might be able to help in this situation. You need to report this nursing home to your state. Whenever the staff says go home “don’t” ,they just don’t want you around so they can be the lazy ass pigs that they are. The problem always seems to be the same with alot of people you talk to that most of these hospitals, doctors, nursing homes and nurses is that they have never had a GBS or CIDP case in their entire life and don’t know anything about this illness and how serious it is. That is why you need to be John’s advocate at all times and never let them bully you ever. Please also take care of yourself, as this is a very trying time for you also.
I will pray for John and you.
AnonymousAugust 3, 2006 at 5:24 pm
I am praying for all of you and especially for your husband. You need to stay on the staff and the drs to make sure your man gets the treatments he needs, no matter what the insurance says! If you listen to your intuition you will make the right decisions. Be your husbands voice-scream in the hallways if you have to, don’t let the staff treat you or him like they did before! that treatment is what is causing the stress in your husband, not the moving part. he has to feel cared for before he can get better, stress is bad for him. If i were in your shoes i would have him tranferred closer to your home in a large hospital. Hugs to all of you! keep us updated. Take care of yourself in the meanwhile.
AnonymousAugust 3, 2006 at 10:29 pm
hi gbwife & welcome,
mind you this is only a guess on my part but i have payed attention to over 1000 cases of gbs. he prolly does not need more pp or ivig unless he shows serious new downgrade. even then a person has to be in a certain level of fitness for pp. more than likely the stress he has had is what brought him down. you must raise more than a stink everywhere. to do otherwise will get him the same lack of treatment. report the rehab place to the state & let the rehab place know you are & have done so. let them know that if he comes back here, unless he receives super treatment you will EXPOSE & sue them. if you can afford it, hire a lawyer. under no circumstances let him be removed from the hosp. even make a stink abt taking him out of icu. he is far from stable enough to handle even a good rehab place, which not many exist. if you feel he can not handle more ivig or pp, which he prolly does not need, how can he handle a pacer maker being put in? does he need it? find out from the docs. the squeeky wheel gets oiled here, but you must stand up to them & not back down. cite over & over the errors they make & the bs you have been handed so far. get back up from as many friends as you can. bad publicity is something they don’t want to happen. threaten to go public, to the newspaper. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 3, 2006 at 11:26 pm
I agree with Gene. The 2 most important things for any patient are safety and comfort and your husband has neither. I personally would go straight to the top in the morning and DEMAND to talk to the administrator. He needs to know what is going on and believe me he won’t find out unless you tell him. Talking to anyone below that level will get you nowhere(Talking from experience). I think the state needs to be notified also. All medical facilities have to be accredited and believe me they don’t want to risk losing that. You and your husband are in my thoughts and prayers…Vicki
AnonymousAugust 4, 2006 at 9:04 pm
START A JOURNAL [B]TODAY[/B] ………….Write down days, times, names, what you asked for, what you were refused, etc……..I had to do this with my mother in law. I went straight to the top and trust me, they dare not burn any bridges with a situation like this and with somebody that keeps detailed notes. Words are great ammuniton and better than memory.
What your husband has had to endure is criminal, like stated already. You have already seen what happened with the actions, you know what could happen now if you don’t stop this.
I was paralysed from head to toe, on a vent and everything else you could imagine for 79 days, and the only peace I could experience is knowing that my husband wouldn’t and didn’t let anyone get away with giving me less than 110% of what I deserved.
Stand up for his rights………..
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