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    Private message for SCI nurse.

    I certainly do not intend for this message to be considered morbid, but as a wife of someone with 20 post years SCI, along with other medical problems I am concerned about the possible life expectancy of my husband. I just need to be realistic about our future and not have on rose colored glasses.

    As I said before, my husband is 20 years post SCI. He has a family history of heart disease (grandmother passed from a massive heart attack in her 60's, along with both his mother and uncle have already had open heart surgery while in their 50's. He has had hypertension for the past ten years, that results in nose bleeds at least once per month. High cholestoral also. Not to mention he has one kidney and weighs over 300 pounds.

    I have seen him "go down" over the past six months. This scares me, but I am just curious about your opinion of what his life expectancy will be given the information I have provided. Again, I am not being morbid, but just want to be realistic and as prepared as possible for when the time comes. Our PCP has already told me both shoulders are completly worn out and he is in constant pain.

    Do you mind giving me your opinion. I know this is not an exact science and I'm not going to "mark the calender" with the information you provide.

    I hope this message makes sense and cetainly doesn't offend anyone.

    Thanks for your time,
    Caringwife.

    #2
    I know I send this as a private message for the nurse, but advice or tips from other would also be appreciated. it means alot for others who are living with SCI. You know all the physcal issues you have to go through.

    Thanks.

    Comment


      #3
      My health and longevity is a contencious issue with David and I. It can be a source of argument that distances us .. or maybe it's my form of pushing him away, dunno. It's very frustrating to deal with complications and not have anyone medically to go to ... it's like doctors expect all this to happen and are just waiting for you to die; at least that's how it feels to me.

      Lately I've been putting the pressure on to get a Will finalized (I know - dumb that I don't have one) but he just doesn't want to talk or deal with it. It's like if we talk about it or do something, it might happen. For all that's been between us, I know that he would lose his best friend - his only family - and I'm not sure what kind of shape he would be in afterwards. Same goes for me. I do worry about this daily, moreso once I passed twenty years. Lately, I've been saying I'm living on borrowed time because I certainly didn't think I would still be in a chair twenty-two years later. I honestly thought there would have been some change by now ... or I'd be dead, especially because pressure sores have been so prevalent in my life.

      I had a good cry yesterday, second time this year. I felt the ole depression that's medically kept at bay creep up on me. It's frustrating seeing yourself fall apart; at least I know it is for me; maybe it is for him too? I want to label myself as a failure because I'm having trouble keeping up, yet I know I didn't ask to live this way. I have 50% of what my coworkers, family and friends have. It's difficult twenty years later to admit that you're not so 'super-human' as you thought you were, or can't reach the potential that you once did. It's difficult to admit that all that time has gone by and find meaning to your life; to be faced with a problem you couldn't fix, no matter how hard you tried. It feels like the cascade of secondary problems that never go away, but just add up, are the beginning of the end.

      Keep in mind that I'm writing this feeling a bit down today, so I'm sorry if it sounds a bit bleak - which reading it over YES it does! Sorry...

      Can't really answer your question without knowing more about your husband's personality or attitude towards life. Is he counting the days until it's over? Does he struggle to survive? The combination of the weight and family history of heart disease is surely a dangerous one.
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

      Comment


        #4
        Hi,

        Did you intend this message be private for sCI nurse? If so, we can continue this discussion in the private mailbox. Otherwise, we can continue it here. Just let me know your preference.

        AAD
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          I was asking myself similar questions, life expectancy, etc. just a few weeks ago. Some CC searching turned up this study:

          http://www.spinalcord.uab.edu/show.asp?durki=21446

          Now, according to my doctors, there's no reason I can't live to a normal life expectancy. But according to these stats, I knocked 11 years of my life when I had my accident. These stats may change over time as new treatments are developed, but I think it is good for us understand where we stand. I think most people who've suffered SCI have a more realistic and serious attitude toward mortality.

          Comment


            #6
            Lynnifer- I was suicidal for over a year after I got out of the hospital. I even posted my thoughts on this forum. One day I woke up and decided I wanted to live. I am here in a nursing home with people who are much worse off than me. Many of them are angry or discouraged. I spend time with them and use every trick I know to motivate them. It is incredibly rewarding because it works.

            We have been given a burden that only a super person can bear. Remember that young man on the forum a few weeks ago who had his vent disconnected? Didn't you have some advice?

            Comment


              #7
              For what it is worth, I am 41 years post-injury and still doing reasonably OK in terms of organ functioning. My shoulders and arms are totally worn out, and I now function like a C5, but I suspect I will be around for quite some time yet. I'm only in my 50's, so I hope so.

              Comment


                #8
                Originally posted by Acarson
                Lynnifer- I was suicidal for over a year after I got out of the hospital. I even posted my thoughts on this forum. One day I woke up and decided I wanted to live. I am here in a nursing home with people who are much worse off than me. Many of them are angry or discouraged. I spend time with them and use every trick I know to motivate them. It is incredibly rewarding because it works.
                André, so glad to hear this news, you were pretty down for a while there. Good for you.

                Thanks for posting that link, Zero, very informative.
                get busy living or get busy dying

                Comment


                  #9
                  I'm happy for you too ACarson. Just having a rough week here .. related to some job troubles. I'm thinking about packing it in ... I don't know what I'll do with myself without my job.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                    #10
                    Why don't we all just pack it in and pool our resources into one central point and move in together. Heck, maybe we could even include Adi to make things more interesting.

                    We can dream, yes ?


                    get busy living or get busy dying

                    Comment


                      #11
                      I remember that I asked my doctor with regards how long will I live;
                      I am 33-years-old.
                      I am an sci and an ostomate, with lung problems...
                      similarly he told me that I can live long too needless of all the sicknesses

                      only if there are complications that may arise.
                      just watch out for such complications like
                      pneumonia, kidney problems etc and maybe depression
                      He ai'nt heavy, he is my brother!
                      Rufus Wainright

                      ronaldlora.blogspot.com

                      Comment


                        #12
                        as was stated above, the lifea expectancy of SCI folks is approaching that of AB individuals. The effects of chronic diseases such as hypertension, diabetes, heart disease,etc will take their toll on obth groups.

                        The best thing you can do is to reduce any risks that come from lifestyle or preventable things such as -get your weight to ideal as best you can, don't smoke, eat healthfully, keep as active as possible, avoid excessive alcohol and keep balance and meaningful relationships in your life. Stay in touch with your body adn report changes early. Very important is to get annual checkups that test for those other diseases that may can have a better outcome if detected early. Nothing like rocket science, just good common principles.

                        Hope this helps.

                        AAD
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                          #13
                          I remember when my daughter first got injured, someone told me the life expectancy for SCI was 10 years. Now isnt that something nice to hear while your child is laying in the hospital. Didnt take me long to know that isnt true. I dont think about life expectency. You worry about that and miss life itself. I know with SCI you have to be a little more cautous about things, but dont let it control your life worrying about something that will happen to everyone at some time in their life.
                          sigpic

                          Stay safe my son. See you around thanksgiving!

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