Does anyone actually die of this disease or complications thereof?

My neurologist has told my wife and me to make sure my affairs are in order, because my health is slowly deteriorating. I have had many serious complications that could have taken my life, but somehow I haven’t bought the farm yet! The way I’m going, it may not be long. My recent history since CIDP discovered last year, shows multiple hospitalizations, multiple pneumonias and massive blood clots in both lungs (at different times), and my neuro thinks that my diaphragm is beginning to be compromised. Full involvement would necessitate the use of a ventilator. And you don’t stay on those for very long……
Does anyone know someone in this condition? Is this hopeless?

Anyone with a chronic disease could die from it...just the odds are it will be late in life. You do not say how old you are nor how long you have had the disease but just like any person, older you are better the odds are about dying.

I have had years where i was hospitalized a lot than other years when not one. I do not have this disease but know friends who do...none have died from it.

I think a sensible way to look at chronic least some for sure is that they are like being diabetic. Complications of diabetes can kill you but odds are it will not happen till later in life if you take care of yourself and see your doctor often.

I think anyone with disease should get the important affairs in order period. I did in my late twenties after I found out I had SLE. I wanted to make sure the important things were discussed and taken care husband knew how to take care of stuff i normally did.

I have continued to update it as i got older and things changed. I think it is just wise idea to have life insurance, and let your spouse or someone know what you like done when you die....if you have children who will take them or pets even...where you want your money to go or home etc. Just being wise does not mean you will die.. no doctor on earth can really say when we will as many people have disproved them over and over again.

my old Neuro , now retired, said to me 'it won't kill you, it'll just be a massive inconvenience' - 5 years of CIDP and so far he's been right ...

I do not believe anything is hopeless. I was told by my neurologist many years ago, that it is rare, but death from CIDP certainly can happen, but usually takes many years. I understand what it is to be hospitalized countless times for seemingly hopeless situations, but I too, am still alive, and had multiple times I did not look like I would make it. So often those of us with CIDP have several other contributing issues, often stemming from the disorder, and some folks feel it is difficult to ascertain which came first...I will pray that you have the best care possible, that getting things straight certainly is a blessing anyway, and that mercy and healing will come. I pray this for all of us. Nothing is impossible with God:).

thanks so much for sharing DocNuclear!

I'm very curious... I too have had blood clots in my lungs. My doctor thinks they were unrelated to the CIDP, but couldn't come up with any risk factors that might have caused them. Does your doctor think they are caused by the CIDP? I have never heard of this connection before.