Need some input and thoughts re-Advance Directive

    • Anonymous
      March 19, 2009 at 4:23 pm

      Hi all,
      Since I am sliding down hill, my latest problem is that the CIDP hit my phrenic nerve about two years ago, thus the diaphragm does not move correctly for inhalation/expiration, and my breathing started to become shallow.
      Now it is very shallow, and they did oximetry on me for 2 days, and my O2 sats are in the 80’s, and at night as low as 80.
      I was off my chemotherapy for the winter to give my bone marrow a break, and now am about to start up again in April.
      But this time, my rheum. who is in charge of my chemo. in conjunction with my neuro., told me I MUST have my Advance Directive filled out now, (some states call it a Living Will). We have talked many times how I was dieing of this disease. It has been a slow downhill with me. Two years ago this past summer, they gave me 2 years left to live. My neuro. told me he thought the current chemo. added another two years of life, though others doctors on my team are not that optomistic.

      So now I get to the Advance Directive. Here is where I need some opinions.
      There is a section about if I want DNR, (do not resucitate), and a section on use of respirator.
      A while back, I had talked to a respiratory tech, about use of a portable respirator. Like seeing that actor, (I can’t remember his name at the moment, but he was the one who played superman), who was in an electric wheelchair, and had a portable respirator. The tech. had told me it extends your life a bit, but lung infections are easy to get and is what usually will do you in.
      Do I put that in, or “throw in the towel”? Need some thoughts here from you guys.
      I already have a person who has power of attorney over me, but I have the feeling that he would have the hospital do all possible to keep me alive, no matter what condition I would be in.
      Waiting for some input, thanks.

    • Anonymous
      March 19, 2009 at 11:29 pm

      hey ken,

      you sound so down– i’m so sorry. i know your fear and your pain…

      there are always options–
      if you feel like talking, let me know. i’m pretty tired now, but morning is soon.


    • Anonymous
      March 20, 2009 at 1:47 am

      Hi Ken,
      I am really sorry to read that you are having such a tough time. Over on the ALS forum there are many discussions about living with a respirator (or vent as they refer to it as). Many people with ALS live what they are describing as good quality lives while being on a vent. You should visit on that forum as ask your question. Since your phrenic nerve and breathing is affected, it may be a good option for you. If you go over to visit the forum, look for posts from Joel. He has the vent and is very informed.
      Best wishes to you Ken, and I will say a prayer right now for you. Stay in touch and let us know how you are.

    • Anonymous
      March 20, 2009 at 3:07 am

      Hi Ken, You really should have your AD in place before going any further. It does need to be what you want deep inside. I don’t know what your beliefs are so its really hard to give you advice on the subject. I can only say my opinion if I were to get into that situation. I would go with all possible treatments to begin with. You can always make changes later on if things don’t go as well as you wanted, if you decline to the point of no return worse then you are currently.
      If you are placed on a vent, portable or stationary, you do have a chance of getting more infections, but there are alot of precautions you can take to help reduce the chances. Best to be in a home environment rather then a hospital where infections are common place.
      In my opinion one should try every possible treatment before giving in to this syndrome.
      My Dad was a dnr one year ago, after a massive heart attack that left him with no pulse etc, he was shocked 4 times and came back to us. The emt/paramedics saved his life because they were called to the scene because we thought my Dad was only choking on food. They recessitated him and saved his life, the er stopped everything except the vent, a long story short-My Dad is still with us and doing just fine-a few memory issues, but what do you expect from an 80 yr old:) We told the drs to do everything they needed to to treat him, they kept bringing up the dnr, we insisted because our faith and his faith was too strong to do anything other then the best. He went through a very hard surgery and is now back to driving and looking forward to driving his motorhome this summer:)
      You really have to look inside yourself and ask what does Ken really want. Just remember if you change your mind you can change your AD also. May Your Angels give you strength, Hun. I know what you are going through as I have been thinking about changing my own recently. Take care.

    • Anonymous
      March 20, 2009 at 4:03 am

      I can’t give you advice I can only say that I’d do the portable vent for as long as I could stand it. I’m sorry you are having to be faced with these decisions so early in life. I think we all expect to go through it at some point but I’m sorry you have to face it sooner rather than later. My heart aches for you Ken, I’m keeping you in my thoughts.


    • Anonymous
      March 20, 2009 at 1:27 pm

      I don’t know about others? But, it’s one that is soo easy to put off until too late.
      It takes courage to sort out your mind and heart about what you want, can and should do, especially given all the variables.
      Thank you for bringing this up, as it’s going to make be get down to earth and make it easier for my family to decide [what to do?] when it needs to be done.
      My heart is with you, your courage gives ME strength that I’d never imagined I had! Keep faith and hope always!

    • Anonymous
      March 20, 2009 at 2:04 pm

      Ken, I agree with Homeagain.

      It’s an important choice that we dont always get to make…so if we CAN , we should.

      I do hope your every tomorrow is better.

      all my best,

    • Anonymous
      March 21, 2009 at 1:59 am

      I have a very detailed Living Will/Advanced Directive.
      I researched a good bit at the library, online and talked to friends/family.I don’t want to put any burden on loved ones about what to do if/when I’m too ill.
      I do know quality of life is what’s important to me.

      It’s a hard decision but you’ll find one that’s right for you. I talk freely with my Health Care Power of Attorney and she knows what I want. I can only hope she follows it.

      Best of luck.

    • Anonymous
      March 21, 2009 at 1:06 pm

      Hello Ken,
      You do have a lot of courage to be facing this with an open mind. My advice would be to base a decision on authorizing a respirator on the level of your pain.
      Is it going to be agony for you to prolong your life? Do you want to or need to live for your family as long as you can or do you just want to stop struggling and close your eyes to enter a new life?

      Christopher Reeve (superman) was a superman and a man of courage and inner strength.

      You are in the arms of the angels, God Bless You.
      From My Heart,