For those who may have a ventilator in their future, or doing their Advance Directive

    • Anonymous
      April 6, 2009 at 5:56 pm

      Hi all,
      Because I am on a slow downhill slide, I have been told I MUST have my Advance Directive, (Living Will), completed before I go back on my chemo. I had to stop my chemo in October after getting it for 15 months, as I had to give my bone marrow a break, per the doctor. I am to start back up in 2 more weeks. And my doctors have a bad feeling about what is to come not too far away…
      Well, I have been told by my primary care doctor, as well as my Pulmonologist, that going onto a ventilator is in my future. The doctors and respiratory people paint a bleak picture of living with a tracheotomy/ventilator. Since it is hard to get info here on this forum, for people with advanced CIDP, who are either too sick or have passed on, I needed guidance about the pros and cons of living with a vent.
      Laurel, here on this forum, suggested I go to the ALS forum, which is a sister disease to CIDP. For people here with advanced CIDP, we end up with much the same problems as people with ALS.
      I read through many of the past threads there, and read how some chose to get the trach. and go on a ventilator, as well as posts by family members/caregivers of how the person with ALS had opted NOT to get the ventilator, and eventually passed on.
      There is a WONDERFUL person there, by the name of Joel, who is living with a trach. and vent. And is having a somewhat DECENT quality of life.
      I want to bring this up here, if anyone else here is faced with the same situation, or whoever here might be filling out their own Advance Directive.
      Joel explained EVERYTHING to me by post, even posted PICTURES of everything involved, and even gave me a telephone call to go over everything.
      Joel was also told by his doctors that living on a vent was awful, and he hunted for a year before he found a doctor/ with a good view.
      I have now made up my mind, and am opting TO go on a ventilator, should or when the situation arises.
      This is an EXCELLENT post for people here to read, and I have the web address of the post below:
      If anyone is filling out their own Advance Directive, this is a question on it that you must think about and answer.
      I hope this helps all here, as this info is EXCELLENT TO READ OVER!

    • Anonymous
      April 6, 2009 at 7:07 pm

      Another good source for ventilator info is:


      This is the CareCure forum for spinal cord injuries. Dr. Wise Young and several nurses participate on the board, along with many SCI folks. You can get a lot of good advice here, not just on ventilators, but wheelchairs and other aspects of disability. (Sadly) there are a lot of people with SCI’s so this is a very active board.

    • Anonymous
      April 7, 2009 at 1:45 pm

      Thanks for that info Ken. I’m glad you did research and made your decision about your situation, I’m proud of you Hun!!! Its important to have the positive attitude, I’m glad you found Joel, he seems to have a Great attitude. I use to work for a dme, resp company, we had many patients who lived/living on vents, from young to old, all sorts of medical reasons. It is very possible to have a life on a vent and trach. I have seen many people in stores around me on portable vents, and their enterage. It really amazes me how they can get around and make it look easy-although I know it must take alot of practice to get that way. Alot of training for their assistants too. Take care.

    • Anonymous
      April 9, 2009 at 6:34 pm

      I haven’t been here for very long time and did not understand by the first look why you should go on the ventilator. My husband suffers of this condition ( POEMS syndrome)since 4 years nearly and for the first 2 years we thought he had CIDP, a very unusual case, but there was no proof of other illness at that time. 2 years ago he came down with a very bad pneumonia which nearly killed him and put him on a ventilator for long long time. He spent 10 months in ITU from which for 4 months he was fully ventilated and the rest of the time to today on a bipap machine which gives either CPAP or BIPAP. The reasons of being on a ventilator are different from one another but I think the fact of having a tracheostomy and pressure support inflating your lungs is the same. the only good point of having it is that those machines keep you alive and it is the most important thing. The downsides are so many but you shouldn’t think too much to those……if you get to have big pressure support then you will have a cuffed tube which means no talking… can still have pussy muir valve in the ventilator’s circuit to help you talk , more prone to infections, very invasive and affects your eating and appetite after a while, not using your taste buds…..they are going to sleep. And then you get stranded at home, depends on the battery life of the machine how far it can take you.He is now stronger and he is off the vent 24/7 since a couple of months. When he left ITU for home 15 months ago he’s been told that he will never be able to breath on his own and he’ll be attached to that machine for the rest of his life( he is only 40yrs of age) but he managed to prove them wrong even after so long being on that machine and 50 pounds less in weight…..I am so proud of him. He’s come such a long way…..and now I have no doubts that anything it is possible, do not despair, believe and tell yourself every day that you can do it and you will get better no matter what. If there is anything you think I can help please do not hesitate to buzz me on my email. Wish you well and God bless us all. i TAKE THIS OPPORTUNITY TO WISH YOU ALL Happy Easter