Death from complications of GBS.

Michael,
I can think of a couple of things right off hand:
Falls – your legs suddenly give out half way down the stairs
Numbness/Paralysis – not being able to feel things makes all illnesses worse. e.g. you can’t feel that your kidneys are aching therefore you aren’t aware of a UTI until you are really sick; you have difficulty taking a deep breath therefore things are able to collect and grow in your lungs leading to susceptibility to pneumonia; you can break your toe and not realize it (did that last weekend) until it turns black and blue (oops!)
Being in various states of paralysis leads to sedentary activity which has a higher potential for heart attack and stroke.
Nutrition you mentioned – it is a possibility but I think that unless you have severe autonomic/bowel issues that lead to absorption problems you need not worry about that. It’s probably not a bad idea to take a multi-vitamin or the like to make sure you’re getting all our building blocks but be sure to ask your doctor first. I had a friend who took a multivitamin and it turns out the Vit. E interacted with his blood thinner and he almost bled to death. Ick
And the fact that you are fighting/recovering from a devastating disease leaves your body in a generalized weakened condition ready for invasive germs to take root. Being in a hospital does not help as we all know they are not the cleanest places in the world. Each day I watched the ants come in my window in the ICU… half the people on my floor had highly infectious diseases etc.

Other people will likely come up with more answers/suggestions. It’s good to be aware of risks so you can plan accordingly. I always use the chair lift when my legs are even a little weak because I don’t want to risk falling. 🙂

Julie

I believe many of times we see this it is because they died while still in hospital, i.e., ventilator acquired pneumonia, other medical conditions complicating things, such as diabetes, or blood clots from being bed ridden, or infection.

Hi Michael, My family friend(also my Dad’s Boss) died from complications of GBS. In his case, he was to be released the following day, he was doing good, then he died. It wasn’t expected at all, no indication or warning. GBS can affect the bp, heart rate, breathing and so on. All things that can occur without warning and sometimes without the patient realizing it is happening. Death from GBS is a really small percentage-5% out of the 1 to 2 in 100,000 who get GBS. I have relapsed to different degrees since Aug 05, not just from over doing things, some were not stupidly induced. They aren’t consistant in anyway, not controllable as yet. Keep in mind, some who succomb to GBS in the early stages might not have the best of care available to them-their drs either don’t know what gbs is, don’t understand gbs, or they don’t seek treatment in a timely manner. And there are also those who just don’t get enough care from the hospital staff, they develope breathing problems and the drs don’t realize it until its too late. Of course there are those who die from complications years after the initial event, either with relapses or without, as with every aspect of this syndrome-there are no rules, regular things that always happen, time lines or anything else, its all very individualized. Hope that helps a bit. Live your Life to the fullest everyday, stay Positive and Take good care of Yourself.

I think all of the answers above are very good. When I was in inpatient rehab at Mayo a very sweet gentleman with GBS was also there. He was in really bad shape & I wondered why he wasn’t still just in a hospital bed. One morning I asked where he was & was told he had quit breathing the night before & died. Wasn’t he being monitored for his breathing?

I also felt the hospitals I was in seemed to be breeding grounds for germs. I was so lucky to get out when I did & get my IVIG in my own home. But I think that if I were to die tomorrow (5 1/2 years out) my obituary would still probably say that I died from complications from GBS, even if It were something totally unrelated.

There are so many complications that can arise from GBS. It does so much nerve damage. The nervous system controls so many parts of our bodies and bodily functions that we are not even aware of.
It controls breathing, digestion, kidney and bladder function, all muscles, including our heartbeat. It controls our body temperature and so many more things. If those things shut down, the person dies unless heroic measure are taken or life support is started.
What happened to Nate this past week demonstrates just what weird things can happen from nerve damage.
His bladder must have been infected days before the infection went up the ureters to his kidneys but he never felt a thing until he woke up sick with a fever and chills.
His kidneys were shutting down and bleeding when I realized he was sick.
Now he has to catheterize himself when he goes home and will have to do that until he either gets feeling back in his bladder or forever.
Nobody knows.
I read that 5% of GBS patients do not survive due to complications, either from cardiac arrest or they stop breathing.
Nate still has a weird way of breathing. I watched him sleeping at the hospital. He keeps breathing but its still not a normal rhythm.
So, there are many things that can take a person’s life when they have GBS.
We have to do as many things as it takes to keep ourselves and our family members healthy and hope they get better…….all the way better.
Trudy, Natesmom

Trudy, you said that so well. The nerves are the body’s messaging system and when there is a glitch, well, anything can happen.

It really ticks me off when someone says “oh, that can’t be a result of GBS; it’s gotta be something else”!!

I’m so sorry that Nate has to go thru all of this. He is a good example of how things can be so messed up and no one is aware of it. How can you be when it’s happening “inside” and there is no sensation?

My greatest wish is for everyone to be well. Please give Nate a hug for me.