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Thread: Opinions rewarded for SCI vent users...

  1. #11
    I had the surgery done last year. Implanting the pacer itself when very well. However the weaning process from the vent was very difficult for me physically and emotionally. Also for my family who were supporting me through the process. At some points there were times when I questioned if it had been worth it. Although my understanding is that many who have the surgery fly through the weaning with no problems at all. Ultimately I wasn't able to get off the vent 24/7. Which was initially absolutely devastating as I had very high expectations of that going in. But the emotional turmoil over that passed when I started to realize what a signficiant impact the pacer was having during the hours of the day I was able to be off the vent. Which right now is usually between 6 and 8 hours every day. I could go longer if needed but once fatigue sets in I need to get back on the vent or I run into problems. Other than maybe my ability to use a laptop, nothing else in the 4 years I have been injured has done so much to improve my quality of life. There are the practical things like mobility indoors and outside is made easier. It's a relative term because I still can't go out anywhere alone, but I do feel more like I have more personal independence when its easier to get around. There is also less equipment to worry about when I go out. My care hasn't been simplified as much as I hoped and the pacer itself brings on a different set of care related issues. But things are definately much easier for me and my caregivers when it comes to things like getting dressed, transfers, showers, etc. Then there are things like improvements in my sense of taste and smell and in my speech. Small things that make such a difference. But the biggest has been what being off the vent has done for my sense of self. I don't hate the vent. It is what it is, a necessary part of my life. In reality it is nothing more than a piece of equipment I need to breathe, worthy of no more drama than a wheelchair being a piece of equipment needed to get around. But the most devastating effect being vent dependent has had on my life is how others react to the ventilator and how I feel about myself being ventilator dependent. Being able to go without out being tethered to it, even for just part of the day, has made made immeasureable difference to my overall self-esteem and made me feel more confident about interacting with people when I go out. It still isn't easy but this is a start and an important step in my 4 year battle to rebuild a life for myself. From what I know the procedure to implant the pacer has become available at more places. It would be good if everybody with a high spinal cord injury who could benefit from this could have access. I guess my only caution is to have realistic expectations going in of what a pacer can do and can't do for the person with a high injury.

    Those are my thoughts on it. If anybody is considering the pacer and has questions about my experience I would be happy to answer them. Either by private message or in seperate thread.
    Last edited by orangejello; 02-12-2010 at 04:20 PM.

  2. #12
    Thank you all for the replies & info.

    MarkPals, I'll check those links out, thanks.

    Orangejello, thank you for sharing your experience(s) and thoughts. I'm glad you're now viewing the DPS as a positive for you, and perhaps, over time, your diaphragm will continue to gain strength and you can use the DPS more.

    I'm not sure I have expectations.

    I feel I talk well and am quite comfortable with my current vent-setup, so I look at this as something to increase my options. My hope is that I'll speak as well and be as comfortable, or more, with the DPS at least for my "chair time."

    That would enable me to get a chair without a vent tray, and I think I'll qualify for the Permobil chair that can stand me up. I think that's one of the biggest positives that I can potentially gain. My potential comfort level with the DPS will decide whether I can get that chair, or if I need one with a vent tray. I'm long overdue for a new chair; this one is 12+ years old.

    I also would like to cap my trach, which will make dressing and choice of clothes easier. But I've heard some DPS users prefer to put a speaking valve over their trach -- which do you do?

    I would prefer to cap it because, besides not having the valve stick out similar to the vent circuit (which would reduce the benefit for dressing and clothes), I'm leery of breathing "unfiltered" air straight through the trach. But I have a friend who has used the DPS for over 5 years now, and he uses a speaking valve and says it's rare for him to get a respiratory infection. So that's good to hear.

    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  3. #13
    Yesterday was a consultation to discuss my candidacy. I thought there might be tests, but there weren't. I just met with the surgeon and his "jack of all trades" staff person who handles all the logistics. We talked about the surgery, the reasons I'm pursuing the DPS, my desired outcomes, and what steps are involved.

    Dr. Lottenberg confirmed what Synapse said, that the phrenic nerve cannot truly be assessed until they get inside, i.e. the test that is done, it can yield a false negative. It can yield a positive, which obviously is a good sign that the nerve is intact, but a negative test isn't always accurate.

    He said he would give me the contact info for one young man with the DPS, who actually has had his trach removed. I'm not currently thinking about having my trach removed, even if I'm on the DPS comfortably 24/7 for quite a while, but that's an interesting possibility.

    Anyway, they said they have had success with my insurance company approving other patients, so they don't anticipate too much insurance trouble. I'm certainly lucky / blessed in that regard.

    We're looking to schedule the surgery for mid-April.

    Because I'm on a blood thinner, I'll need to be hospitalized for two nights: one night preceding surgery, and one night after. They need to make sure my blood won't be too thin before surgery, and afterward, they have to start to get it therapeutic again.

    I need to go back and have the cardiovascular people check my heart pacemaker and determine whether we're going to replace the battery, remove the pacemaker, or just leave it in me with the dead battery (my local cardiologist thinks the battery is probably dead, and that I probably don't need the pacemaker anymore, but we're going to try to check all that out). If we're going to replace the battery or remove the heart pacemaker, that should be done when I have the DPS surgery, though I don't know if Dr. Lottenberg or another surgeon would do that.

    But it appears to be a go. I'm optimistic of course, but also trying to keep realistic expectations, and I won't be too disappointed if I'm unable to have success with the DPS, though Dr. Lottenberg thinks I'm a good candidate, being relatively young, healthy, and motivated.

    The worst case scenario is I'll keep using my ventilators, which I've been quite comfortable with the last 12+ years. The best case scenario, I guess would be using the DPS 24/7 and, perhaps, eventually, removing my trach.

    I'm thankful for the opportunity and have no worries either way.

    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  4. #14
    Sorry I didn't see your question until now. I use a passy muir speaking valve, which does also act as an air filter. There may be other types of speaking valves that don't filter, I don't know. This type of valve is the only one I am familiar with. Unfortunately I do tend to have issues with respiratory infections but I haven't noticed an increase since getting the pacer. As for the differences between a speaking valve and a cap, the speaking valve is quite small. I can't think that it sticks out much further than a cap would. Maybe I am just used to the routine but I don't find that it overly complicates my care. But what works for each person is different. It could be that a cap would be a better choice for you.

    As for getting more time off the vent, yes that is something to work on and it would be nice. But right now 8 hours is usually the max I am up in my chair at one given time so for the most part, it works out okay. And as I said, I can go longer if needed on the pacer but limit it at to between 6 and 8 hours with a rest period because of discomfort. The biggest thing for me was increased ease of mobility so I could go to school and do other things away from home. And I have gotten that. I got rid of the vent tray when I switched to a laptop style vent some time ago. But even being able to get rid of the smaller vent has decreased the bulk of my chair considerably.

    As for speech, I can't see why you wouldn't speak as well with a pacer. My speech was pretty good before but it's a lot better now. At least that is what people tell me. Good luck with your progress through the process.
    Last edited by orangejello; 02-17-2010 at 05:55 PM.

  5. #15

    Thank you for the reply. Your description of your Passy Muir Valve was different than how I would describe mine, so I sought more info on PMVs. The one I have is teal colored and is designed for disposable vent circuits, which I use. I see they have purple & clear valves that are much shorter, and appear that they wouldn't extend much more than a cap, like you said. Awesome! I'm going to get a clear one.

    Next I wanted to find what they say about infection control, which is at this link:

    It seems it's similar to breathing through one's mouth, so I shouldn't be too paranoid about using it. It's just that on the vent, I'm breathing through three filters, and I think they have contributed to my respiratory health.

    Regarding respiratory infections, do you suction or use a CoughAssist?

    I can develop quite a bit of secretions in my chest, enough that I don't think suctioning would be able to eliminate the secretions before I developed something like pneumonia or bronchitis.

    If you aren't familiar with the CoughAssist, I wrote a testimonial for it, and also described in detail exactly how we use it. Both posts are on this page:

    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  6. #16
    I was asked to chronicle my efforts to hopefully go from fulltime ventilator user to successful DPS user (success can be defined multiple ways) for the International Ventilator User's Network (IVUN) in a series of articles / blog entries.

    Since this thread has an outdated title, I started a new thread, and also because my first blog entry kind of condenses the info on this thread. Here's the new thread:

    - Bill :-)
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  7. #17
    Bill, I was just thinking about you this week and was wondering where you were with it.
    I have been reading about your cough assist use on your web site and it has been very helpful. We are trying one out.Your information there is well written. Thank-You!
    I was going to mention that Dave has a passey muir valve that is clear with a low profile. He had the big aqua one since he was trached again in June 09. We happened to run into a woman who had the smaller one, so asked the RT from DME company if he could find us one.
    Good Luck!

  8. #18
    Thank you Linda for your thoughts. I recently got one of the clear, smaller Passy-Muir Valves also. I didn't know such a product was an option until reading OrangeJello's info above.

    - Bill :-)
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

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