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Looking at a change, but unsure how to keep caregivers.

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  • Looking at a change, but unsure how to keep caregivers.

    This may be better in the life forum, but I'll try here first. In February, I did a phone survey with Synapse Biomedical about their diaphragm pacemaker. After much consideration, I'm looking at going with it instead of the vent and everything associated with it. However, I contacted my insurance to see what if anything would change.

    They said that they recommended the switch and that it may have a quality of life improvement. However, they would cut most to all of my nursing hours as I would no longer need a vent and tubes monitored. After getting a doctor's order and a company rep calling insurance, they changed to making a decision on nursing 2-3 months after getting the pacemaker.

    I have talked with other people that have switched from vent to pacemaker, and they never had a change. No matter what method I'm breathing with, I still can't move or basically do anything by myself.

    What do other quads do for caregiving time and needs? I know it's unusual for a C2/3 quad to not be on a vent 24/7, so any advice is appreciated.
    C2/3 quad since February 20, 1985.

  • #2
    do you mean their condition did not change, or their care needs?


    • #3
      Care needs did not or wouldn't.
      C2/3 quad since February 20, 1985.


      • #4
        Well, I am not an expert, but I do have a bit of common sense...and seemingly, if care needs do not change, then I would think you would still need caregiving...

        Insurance companies make me tired!

        Once, I had to pay extra because someone deemed my anesthesia for a gall bladder removal "not medically necessary"...

        I should have fought that one tooth and nail...but I was young and stupid...

        At least I should have gotten someone on the phone and asked if THEY wanted an operation with no anesthesia...sighhhhh...

        Take care and best wishes and prayers for you...



        • #5
          I'd do some more research TM. I'm sure many who get the pacer will still need suctioning and many doctors would be leary of closing the tracheostomy hole. You may get a switch from RN/LPN to a CNA or such but shouldn't lose more than a few hours.
          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


          • #6
            I have been out of it for so long but the problem is that personal care doesn't qualify as a "skilled need." Having a vent qualifies you for this.

            I really don't have any suggestions unless maybe appeal the decision. Insurance companies are known for their stupidity and it is really hard to reason with stupid. I have worked for them and dealt with them for years. When I worked for one, we had a number to refer people to but it transferred the person right back to our number. I was told "that is how we have to do it." And yes, I have argued with a nurse who told me that strep throat was a pre-existing condition (the pharyngitis phase)....sigh....


            • #7
              Having done a year-long stint in home-care, unfortunately I tend to agree with Noryn. Having a vent automatically qualifies you for skilled nursing care, which if I'm not mistaken, private insurance companies will cover. Typically they do not cover personal care services. If you are left with a trach, it will continue to require some skilled care to assess, clean and change any dressings or cannulas, but that can be done once daily, you would likely only be given a few hours. I had a C3/C4 injury and needed help when I was discharged from rehab but had private insurance so had to rely on friends and family for the assistance I needed. Those that you know who did not lose services most likely had Medicaid. In most states, they will cover personal care services. I believe that Medicare may cover a limited number of hours as well. I don't know if you have family to help or not, but in the state where I live, nobody gets 24/7 coverage. Typically there is about 10 hours/day that family or friends must fill in to provide care, the logic being that otherwise sending the disabled person to a long-term care facility costs the state less money.

              Other than having to be indigent to receive it, Medicaid is a much better deal. And yeah, the system sucks. I can sure understand why the pacemaker would be so appealing. I would absolutely consider it a quality of life improvement to be able to be freed from using a vent.


              • #8
                Trainman, glad you are looking at this option. Have you had testing to see if it would actually work for you at this point? It does not work for everyone, esp. if you have had a lot of atrophy of your diaphragm. Regardless, it does take a while before you are on this pacer 24/7 instead of a vent.

                You are lucky that you have insurance that pays for caregivers, but I suspect that your policy is limited to coverage for skilled nursing vs. aide or "maintenance" care as it is often worded. You need to come up with a list of the care you still need that is skilled. For example, intermittent cath, or changing or irrigating an indwelling catheter, bowel care, wound care, and administration of medications are considered skilled care. Bathing, dressing, feeding, ROM, transfers, and household activities such as cooking and cleaning are not considered skilled care. You can maximize your hours when you will need skilled care by combining them when time when you need the other care as well. For example, if doing bowel care involves transferring you to a commode and then to your wheelchair afterwards, transfers may be included. If you still need suctioning or the use of a Cough Assist even if on the pacer, this would also be considered skilled care.

                Once you are on the pacer 24/7, your injury functionally becomes more like someone with a C4 injury. Still no use of arms, but not needing someone with you 24/7. Many of my clients at this level can make do with a total lf 6-8 hours of attendant care daily...someone to do their AM routine (ROM, bowel care, bathing, dressing, transfer to the chair), perhaps someone to come and help with lunch (unless you have a family member or roommate who can help with this) and then someone else to come in the evening to get you into bed, do skin check, and position you for sleep). Of course it is even more critical that you have access to a phone you can use in bed when alone, and things like power activated door openers (in case of a fire) are also ideal. Would your insurance cover these items? Do you have a good ECU? Would they also cover a turning mattress or bed for you at night so you don't need anyone to turn you? Do you have a system for getting water when in your chair and in bed (like a Camelback or something similar)?

                Are you eligible for state funded attendant care? Could you afford to rent a larger place and try to find an attendant who would do your care in exchange for free room and board?

                I am sure others here will have further suggestions.

                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.


                • #9
                  Once you are on the pacer 24/7, your injury functionally becomes more like someone with a C4 injury.
                  Pacers are a huge improvement over being on a vent, but they're still a life support system and not infallible. Wires getting snagged or broken, batteries losing power, internal malfunction, sudden build-ups of secretion requiring immediate suction - all of these are not just possible but more than probable scenarios you may face. Assuming that you have no independent breathing time (& would therefore be unable to so much as call out without air), leaving you on your own even on a pacer would be knowingly placing you at dire risk. I'm surprised an insurance company would risk that kind of liability.


                  • #10
                    A move and a lot of replies while I was asleep. As KLD said, I know it would take a while to completely switch over, and no I have not been tested yet. About half of my muscle spasms, I take in a pretty large breath, which I assume is my diaphragm spasming. I still need to test, but at least I know it's there.

                    As Scaper1 said (I will be replying to your PM), I would still need suctioning and make sure the pacer works. My plan would be to either get my trach, and have it plugged, or switch to a trach button, but I need to look into that further. Those using the pacemaker I spoke with do use state funding for services.

                    KLD, my insurance is very unique, I have to have an LPN/RN if they are through an agency, but I'm allowed to private hire anyone, medical training or not, and get their pay reimbursed. I do live with my parents, they cover about 5 hours in the evenings and days on weekend. However, they work quite a bit and are getting older. My mother was also severely injured in the MVA that left me quad. There's unfortunately several physical items she can't do and her ability to walk and function normally are quickly decreasing.

                    I don't have a turning mattress or any environmental controls. I tried a turning mattress several years ago at Craig, but it didn't turn me my normal 90 degrees to the bed. After a few nights of little sleep and partial turns, I ended up with a collapsed lung. My insurance is very difficult with DME, I'm still working on a chair, so I would be very doubtful that any of it would be covered.

                    My daily skilled care would be pacemaker monitoring, suctioning PRN, trach care, cathing, dig stim and a few infrequent items. Convincing insurance that these require supervision is the hard part.
                    Last edited by trainman; 07-13-2009, 11:41 AM. Reason: Appointment change, more time to answer.
                    C2/3 quad since February 20, 1985.