Do older GBS patients come off vents?
AnonymousApril 19, 2007 at 12:18 pm
Hi, My mother in law, Violet, has been in the icu on a vent since 3/1/07. She is paralyzed from the neck down. She has had plasma pheresis and ivg. the neurologist is doing a second round of both this past week and next week. The general practictioner docters who are listed as the primary care docs, shocked my wife donna by saying they did not think her mom would ever come off the vent. They went so far as to say that at some point Donna would have to decide whether they would disconect it!
The Neurologist has not said anything like this at all. Do any of you have experience with GBS at age 75. If there is a reality i need to know about, you can tell me and I will be OK. I just don’t want Donna (my wife) and Violet (her mom) bounced up and down with all these statements from Doc’s who I believe don’t know what they are saying.
Any help even if it seems to be bad news would help us,
Looking for hope but not afraid of p[ossible reality,
AnonymousApril 19, 2007 at 12:35 pm
I got gbs on nov 9th 06, im 73yrs old. I was vented and whent through all the stuff you mention, the drs, nero included told my wife I would not make it, well they were wrong. I made it and am having a good recovery, I can walk without help, short distances. I have the regular stuff youll read about on this form. Taking neurontin, vicodin BUT I feel good, dont give up. God heals and the doctors take the credit Keep the faith, gg
AnonymousApril 19, 2007 at 1:44 pm
I was diagnosed in 2005 at the age of 31. After I got out of the hospital, I went back to visit others who had been diagnosed. I visited a lady who was 92 upon admission to the hospital. She ended up on the vent. Before she left, she was off the vent and walking with a walker. She also had her 93rd birthday in the hospital. As far as I know, she is doing well.
AnonymousApril 19, 2007 at 1:59 pm
That is an awful situation to be in and one I can relate to. My father went into ICU on August 13, 2006. He just came off the vent (most of the time – he still needs it at night sometimes) and he still has a tracheotomy in his neck. The docs told us as well (at the time) that we needed to decide if we would continue his life support. We chose to continue and had we not done that then last week when I went to see my Dad I would not have heard for the first time in 8 months a very raspy voice say: “Hi honey! I love you!” My dad was virtually comatose for 4 months. I am relatively new to these boards but as the long timers here have always told me – give it more time…
AnonymousApril 19, 2007 at 2:55 pm
Hi Donna and George,
Please [B]do not[/B] listen to that Dr. You never give up on the patient and you certainly [B]do not[/B] take them off the vent. Many of our members were vent dependent for 1 year. Seems to me the primary care doc doesn’t know much about GBS so again please [B]do not[/B] listen to him.
Prayers going out for Mom.
AnonymousApril 19, 2007 at 3:26 pm
Hi George and Donna, please don’t listen to that dr!! gbs knows no age limits!!! a family friend died from gbs, back many years ago-he was only 56, in great physical health, not vented at all and was supposed to be discharged from the hospital the next day-he died from complications of gbs. This is the exception and NOT the rule-it doesn’t happen very often, less then 5%. your mom-in-law has as much of a chance for recovery as the next gbs patient-young or old! Never give up and just go with your gut instincts. can i ask why is she getting pp and ivig? normally ivig is less invasive a procedure, and pp just takes out the ivig that is in the body. they both accomplish the same job-stop or slow down the damage to the nerves. please keep us updated on your m-i-l’s progress. and keep asking questions and vent whenever you need to. it might be a good idea to print out the information from this thread to show her drs. the more info you have the better care she will receive. please be the voice for your m-i-l, not only for dr care but for nursing care also. if she is in pain, neurontin is very good for nerve pain, or any of the other meds mentioned on this site. Remember GBS stands for Getting Better Slowly!! take care.
AnonymousApril 19, 2007 at 11:30 pm
Please don’t listen to that Doctor, what an ignorant comment to make as far as I’m concerned, I too do not think he knows enough about GBS so you need to sidestep him and consult with the neurologist and see what they have to say. You would expect the neurologist to know more than the GP and if you’re still not happy get a second or third opinion until you are satisified. You very rarely just come off a ventilator and starting breathing on your own anyway, you have to be weaned and the whole process takes time. I was in ICU on ventilator for 21/2 mths, paralysed from head to toe and couldn’t even blink and I never thought I was going to get off the vent and slowly but surely things started happening. There are lots of other people joined to this forum that could share similar and even worse stories than mine and we’ve been able to get off the vent, so hang in there and be positive. GBS = getting better slowly. Keep 🙂
AnonymousApril 20, 2007 at 12:18 pm
Hi , thank you for your replies, we are going to fire the Gp docs. They are still saying we will have to send her out of ICU.
Do you have recommendations for places which specialize in Gbs patients and weaning off the vent or maintaining the patient until they are able to breath on their own?
Our family is spread between Lancaster Pa and the Baltimore – Washington, Dc area. We are close to philly also.
We heard Johnshopkins was good, but i think that is only if she will still be in the ICU.
Any help would be great.
Thank you all and god bless you for your encouragement. Your posts last night helped us get through the night and have a much better outlook today!
George and Donna
AnonymousApril 24, 2007 at 10:12 am
Hi. I wish I would have come across this post earlier.
My mom is 74 and has been on a vent since Nov 2006. She spent 1 month in ICU then transferred to an LTACH. 2 weeks ago we moved her to a vent hospital in Rockcastle County Kentucky. They are supposed to “specialise” in vent weaning so we are hopeful they can get her off the thing.
She is still paralised from the shoulders down and cannot talk.
She gives up ALOT, I guess because of her age. She also had a doctor (at the LTACH) who told us it was pretty “grim” and we should be prepared to put her in a nursing home and keep her on the vent for the rest of her life. This was totally unacceptable to us and I told the doctor so.
I have had a very hard time with finding doctors, nurses and RTs who are familiar with GBS. Although for some odd reason it seems to be getting more common. Makes me think there must be some new trigger out there that people are not yet aware of.
All I can say is – Don’t give up! I have been there (as others on this board know – I can be very negative about recovery because sometimes it does feel hopeless) but it doesn’t do anybody any good. Especially the person with GBS. We try to be as upbeat as possible for my mom and tell her she needs to work really hard to get off that vent.
AnonymousApril 25, 2007 at 8:11 am
My mom is 72 and has had GBS for 2.5 years. She was completely vent dependent for at least a year of that and then used the vent 12hrs/day for the last year – 1.5 yrs. Now she’s using it every few nights to rest from the fatigue of GBS. DON’T let them tell you she’ll never get off of it. It’s not uncommon at all for GBS patients to be on the vent for several months, or like with my mom, even over a year ….or more. Use the equipment, medicines, strategies that work for her. There is no definite time table with GBs! Also don’t let them tell you your loved one won’t get any better. You will continue to see improvement – my mom is beginning to walk again after 2.5 years and she was told she never would. Don’t listen to the nevers!
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