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  • Fatigue & Vent & Oxygen

    My Dad, C3-C4 incomplete on a vent, suffers from fatigue. I've read that over 60% of SCI will suffer from fatigue.

    Please share with me some of your own experience and 'solutions':


    1) It seems that he'll be alert for one day -- and then, he's less alert the next day.


    2) Does anyone use additional oxygen to help with fatigue?

    My Dad is currently on room air. When he was "clean" (after finishing antibiotics and a clean bill of health), his O sats were 97-98 and he could reach 99 and 100 when exercising.

    But since he's been bedridden (bad news - over 4.5 months), his O sats have dropped -- and the fatigue is worse.

    I've found that after exercising, he's more alert.

    However, a sibling wants to give oxygen and claims that when she gave him oxygen -- this made my Dad more alert.


    3) An RT told me that getting the excess O is toxic. The pulmonologist said that this wasn't true -- depending on the excess.


    4) the Home Health agency pushes the oxygen


    Any thoughts?

  • #2
    What are his o2 sats? wha tis his hemoglobin and other electrolytes? has he had glucose and labs tested? I favor oxygen 1-2 liters only-if he is fatigued and o2 sats could use some improvement.
    CWO
    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


    • #3
      My Dad's sats were 97-98 when he just recuperated from pneumonia. It dropped to 97-96, and recently, dropped to 96-95.

      Just two days ago, it started dropping to 94-93-92-91. He's very congested now, and I'm giving him about O 1 liter at night.

      I think that a major harm to his body: he has been bedridden for over 4.5 months -- so, I think that the fatigue may be worsened by being in bed. Is this logical?

      His hemoglobin is a bit over 11. He has a potassium problem (I think it was caused by the frequent lasix) 3.5 - so he's on potassium chloride. He also is slightly anemic (his only major previous condition) and getting iron. At one point, his glucose looked low (in the 40's) but they retested and it was over 100.

      I have been exercising, turning, moving him as often as possible since I've noted that each time he's bedridden, he'll catch pneumonia. I'm a bit exhausted.

      After a lot of frustration, I got used slings, lift, and wheelchair for my Dad. The home health OT says only 3 min per day for one week and then twice @ 3 min per day for the 2nd week. He's been up 3 times now -- and now, the crackling in "all four quadrants" (according to the nurse)... there's no temp yet.

      Is this too slow to do just a few minutes?

      Yesterday - they upped his oxygen via the O tank and found that he was more alert. The odd thing is that there's little focus on exercising and getting him out of bed... the home health people think that if the O makes my Dad more alert, do it.

      Comment


      • #4
        He needs to see a doctor and not wait for temperature to rise- especialy in elderly you cannot rely on increased temperature. How often is he suctioned? Call his doctor!
        CWO
        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
          Sounds like he might be developing a pneumonia. Or I don't know why you are using lasix (or if you stopped using it), but it is also possible that he is backing up fluid in the lungs and that is a reason for the drop in oxygen.

          Do you have a ?good doctor experienced with SCI overseeing his care and giving orders to the Home Health? Unfortunately, the Home Care nurses will not reliably know what to do with your father.

          Yes, you should call the doctor (I am assuming this doctor ordered the lasix?), and maybe call the pulmonologist you just saw to ask your questions as well.

          Hang in there.

          It sounds like another trip to the hospital is in your near future. I would strongly suggest you take him to the best hospital in your area for SCI, and one that can send him to a SCI rehab after the hospitalization.

          Comment


          • #6
            I just called the backup for his primary doctor -- this doc rec that I take my Dad to the ER.

            Is it possible to ask the ambulance to take him outside of the City? Unfortunately, there isn't a good SCI rehab in the City. The last time I asked the ambulance to go to an ER which was a bit farther away, they had to double check if they could do it.

            The drop in O started on Sun - the home health nurse checked on Mon and Tues, and said that there's noises in "all four quadrants" -- she contacted the housecall doc and said that we have to be aggressive or my Dad will contract pneumonia. The housecall doc will come on Thurs. On Mon nite, we did x-rays and it showed negative for pneumonia.

            As a warning to others - the backup doc told me not to trust the x-ray teams which do home visits because the x-ray is usually not accurate.

            Gotta get ready to go - I'll check back b4 I go.
            Last edited by Joey_SF; 09-26-2012, 01:45 PM. Reason: typo

            Comment


            • #7
              Originally posted by Joey_SF View Post
              I just called the backup for his primary doctor -- this doc rec that I take my Dad to the ER.

              Is it possible to ask the ambulance to take him outside of the City? Unfortunately, there isn't a good SCI rehab in the City. The last time I asked the ambulance to go to an ER which was a bit farther away, they had to double check if they could do it.

              The drop in O started on Sun - the home health nurse checked on Mon and Tues, and said that there's noises in "all four quadrants" -- she contacted the housecall doc and said that we have to be aggressive or my Dad will contract pneumonia. The housecall doc will come on Thurs. On Mon nite, we did x-rays and it showed negative for pneumonia.

              As a warning to others - the backup doc told me not to trust the x-ray teams which do home visits because the x-ray is usually not accurate.

              Heavens, I feel very alone since my Dad is surrounded by health professionals who lack familiarity with SCI. They are ticked off at me (euphemism).

              Gotta get ready to go - I'll check back b4 I go.

              The rules about where ambulances can take you vary from city to city, and by the type of patient you are. It is good to get familiar with the rules for your city. It is true that some emergency ambulances may only be allowed to take you to a near hospital that has the level of care he requires. I would continue to emphasize his complexity of care, and push like crazy if there is a place you want him to go.

              I'm not sure where you are, but perhaps if you tell us what city you are in or the closest hospitals to you, the nurses may be able to advise a little.

              If you were happy with the care you got at the last admission, or if any doctor you respect (who is helping....) is associated with one hospital, it is reasonable to go there. At least they will start to get to know him a bit better, and maybe the pulmonologist you saw is there as well (?) and could come to help give recommendations.

              For now, just focus on getting him care for his lung issues.

              For the future, it would be good to have a clear plan ahead of time for who to call, where to be admitted, and where to go to rehab afterwards. Whenever you get re-admitted ALWAYS talk to the social workers and case managers about all of your discharge options and ask for at least a short term rehab placement if possible. Always re-address whether you should be changing the insurance options for your father to get the care he needs.

              This is a constantly evolving process, and keep bringing up old issues every time a change/crisis happens.... you never know when you will meet a person who will be able to help.

              Comment


              • #8
                I know that this member & his father are in the SF Bay area. He does not have a SCI physician, nor did he get any inpatient SCI rehab after his injury.

                In most areas, if you call 911 this gets you paramedics or EMTs (and not just an ambulance), and as part of the local EMS (emergency medical systems) plan and regulations, they are usually required to transport you to the closest emergency room. There are additional requirements if you have a local trauma system and the reason for the 911 call is for a traumatic injury.

                Otherwise, for non-emergent ambulance or medical wheelchair transport, you can designate which hospital or other facility you are taken to, but it is unlikely that your insurance will cover this at all, except by prior authorization, so private pay is the most likely funding. This can be VERY expensive!

                (KLD)
                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


                • #9
                  My Dad came home from the hospital about two weeks ago (this time, he completed the full round of antibiotics) - O sats are 98 (fluc 99, 97, and even 100) on room air.

                  When bringing him home, the ambulance folks again left him outside in the cold. His temp dropped -- but he was still very alert for a few days and then, he felt like he had a cold.
                  His O sats dropped -- with some cold medicine and sleep and some O, he was fine in a few days.

                  Then.... yesterday, his O sats dropped below 90 - no temp, lungs sound fine (checked by nurse) -- my Dad says that he feels fine and then, suddenly he's having a difficult time breathing.

                  Here's the wierd thing... I'll give him O and his O sats recover, hitting 99-100 -- and I'll lower or disconnect the O... then his O will drop again. In other words, it's not a gradual decline, he'll have great O sats and then, the O sats dip below 90.

                  My Dad now says that he feels congested.

                  The nurse says to just keep him on oxygen until she gets back in a few days to do a blood draw... which I asked the doctor to order.

                  I don't really like the idea of 'keeping him on oxygen' -- since I'd rather figure out what's wrong. The nurse has encouraged the frequent administering of oxygen and says that there's nothing harmful in giving O -- I've preferred to do percussion, turning, exercising... more natural healthier ways to get my Dad's O up... the O is very 'cold' and my guess is that this cannot be good form my Dad.

                  Any feedback ? I'd appreciate it.
                  Last edited by Joey_SF; 10-19-2012, 08:28 PM.

                  Comment


                  • #10
                    There's no harm to being on the oxygen, lots of people are.
                    My husband gets O2 overnight through his bipap every night. The idea being that then he doesn't have to work so hard to breathe and gets good O2 overnight w/o effort. During the day he doesn't usually use it, but its available if needed. We've been told if he gets short of breath, difficult, light headed, whatever we can give O2.
                    Rebecca
                    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
                    Mother of 2 active boys!

                    Comment


                    • #11
                      My Dad has had strong O sats, without being on oxygen.

                      1) Previously, his sats would drop (with the accompanying temp change and/or noisy lungs) -- and, this was indicative of pneumonia.

                      Thank goodness for the SCI nurse on the CareCure Forum.

                      2) Earlier in the month, his sats dropped for less than 24 hrs or so due to a cold.

                      3) Now, it's been for three days -- so, the sudden drop from strong sats is a new phenomena. His temp has changed for the past 24 hrs.

                      Reason for my concern -- the drop is usually indicative of something being wrong... and I'm really worried about another round of pneumonia.

                      No offense to nurses (they're definitely not all equal) -- but, my Dad has had a bunch of health professionals who don't give good advice (euphemism).
                      Last edited by Joey_SF; 10-21-2012, 10:00 PM.

                      Comment


                      • #12
                        Ashleigh,

                        I am dismally sad that it's not as easy as it seems.

                        Unfortunately, my Dad's insurance "locks" him into a certain set of doctors and though they are not "experts," they "pretend" to be and the insurance company will support them (and there are other issues as well). In other words, my Dad does not have easy access to SCI specialists unless I pay out of pocket.

                        But, I'm hoping to change this.

                        Comment


                        • #13
                          Joey, how is your dad doing?

                          Comment


                          • #14
                            Joey, were you able to acquire a CoughAssist for your Dad?

                            That can help significantly. Vitamin D3 gels also help with my energy. I take THESE.

                            (If you already mentioned before that you got a CoughAssist, I apologize, I haven't kept up with all your threads.)
                            Wheelchair users -- even high-level quads... WANNA BOWL?

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

                            Comment


                            • #15
                              Hey Bill,

                              Last week, we finally got a cough assist for my Dad. But, I'm a bit nervous since the RT mentioned that Medicare may not cover it.

                              Btw, what are your settings?

                              I also ordered the Vitamin D3 gels -- my Dad found them very helpful.

                              Any other great tips for supplements?

                              Comment

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