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    #61
    Originally posted by rdf View Post
    I agree with Jenn, juras.
    thanks for the input... but i need to be mobile for the next few days starting friday...i'll have to wait 'till wednesday to commit myself to that iv thing....
    };->
    wherever you go there you are...

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      #62
      (You can be mobile with a PICC line ... it's like carrying a walkman from the 1980's around). You're given a little machine with the IV antibiotics in it and the machine is set to go off three times a day no matter where you are. It has to be set up every day ... a visiting nurse did it at first but I took over. It isn't difficult, but you would have to have the manual dexterity of the fingers to pop the new IV bag.

      I went to work the first two times I had one -full-time shift work. It wasn't a big deal.
      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

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        #63
        Yikes, I hope you get that sore of yours under control. Much success in trying to stop smoking.
        A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child

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          #64
          Originally posted by lynnifer View Post
          (You can be mobile with a PICC line ... it's like carrying a walkman from the 1980's around).... It isn't difficult, but you would have to have the manual dexterity of the fingers to pop the new IV bag...
          hehe some of those first walkmans [walkmen?] were quite hefty; especially the non-sony ones....my first one with the cassette player was a sanyo or some similar brand back in 1981, because sony brand was priced much higher [it was also the best for a few years] and it was about 25-30% larger and heavier than the sony's equivalent model...

          regardless, it would still limit my mobility quite a bit...i'm not nearly as mobile/able as i was just a few years ago and i have a hard enough time to try to keep my legs/feet more less on the footrests and in line to worry about some device staying put on my lap...i constantly drop my f..bag....err, almost used an un-pc word hehe...i mean my fanny pack when i'm in a wheelchair, and when i was hooked up to the vac pump which isn't all that significantly bigger than old school walkman [about 2.5 x], i had a real difficult time keeping it with me...

          another problem is transfering, if there's a needle in my vein while i'm doing a transfer, i'd either rip it out or at least it will be pressed deeper into my vein which hurts a bit and sometimes bends the needle [both of those things happen all the time when i have a regular type of an iv hooked up in an er]...

          friday evening i'll be doing a lot of difficult/high transfers and quite a bit of pushing my wheelchair so it's better to wait until next week...
          };->
          Last edited by juras; 17 Jun 2011, 1:38 AM. Reason: un-pc word hehe...
          wherever you go there you are...

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            #65
            Originally posted by wtf View Post
            Yikes, I hope you get that sore of yours under control. Much success in trying to stop smoking.
            thanks wtf [haha, kool nick]...aye, me too....if i won't quit, there apparently won't be any surgery as an option in my nearest future...that's provided i'll even decide to go with the surgery...
            thanks...
            };->
            wherever you go there you are...

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              #66
              Juras, not sure if you don't really see this as a priority or what..But you seem to have a reason for why everyone's advice wont' work for you. Yet you ask for it. Also if you put htis off and put it off you're really digging a grave man? Either make this awful osteomylitis your number 1 priority or it's going to take over.....you choose...sounds like you already have...
              Liza R. McCollum

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                #67
                Originally posted by mcco5543 View Post
                Juras, not sure if you don't really see this as a priority or what..But you seem to have a reason for why everyone's advice wont' work for you. Yet you ask for it. Also if you put htis off and put it off you're really digging a grave man? Either make this awful osteomylitis your number 1 priority or it's going to take over.....you choose...sounds like you already have...
                liza, i appreciate your concern ...really do, as i've said before here, it would be rude to ask for help/advice only to ignore and piss on it...that's not my style and it ain't true what you're saying...not fair...well, you're accusing me of ignoring the advice i've been given, here's the lowdown....i've taken all advice given here to heart and mind...completely revised my whole agenda for the nearest future according to it; or at least willing to give it a serious try despite how tired/sick i might feel of further pain/inconvenience...lord knows i've had my fill of both within the past couple of years...i don't write everything here - just the necessary facts - and not looking for bloody sympathy...just straight down advice....and i've received a lot of great advice here indeed....

                there are, however, previous important engagements i cannot break...i abide by my word when i give it no matter what...it's how i live...i've weighed all the options i've been faced with at the current scenario and had to make some compromises but i'm not going to piss on all of my important previous commitments just because i'm now in a sh#tty state of health; even if it's worse than i thought up to now...today was one of those previous commitments...i don't feel as if i should explain myself or apologize for it...so don't try to make me feel guilty about it...please...ok?...
                cheeers.....
                wherever you go there you are...

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                  #68
                  There was no guilt intended and no apology needed from you, I can tell you were going to take advice (personally i'd be fine if you didnt take advice at all..advice doesnt' ahve to be taken, what i just meant waas I hope you make this a priority. I want you to get better that' all I meant i swear

                  cheers
                  Liza R. McCollum

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                    #69
                    It's Wednesday (officially next week). Any progress?
                    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


                      #70
                      Originally posted by lynnifer View Post
                      It's Wednesday (officially next week). Any progress?
                      well, as promised - also for potential benefit of others who might be dealing with similar problem - i'm updating my status...and alas, i'm still in a type of limbo as far as treatment progress of my wound goes...here's a full [very long but thorough] report on what has happened since my last post...:

                      went to that quitting smoking auriculotherapy dude on monday, june 20th...it's a 5-10 minute procedure of him using some electronic doo-dah substituting for [acupuncture] needles stimulating several spots inside your ear's auricle, combined with a 1.5 hour long seminar precluding the actual procedure....the seminar consists of him telling several dudes in the room [myself included] his own take on what smoking addiction is and what he considers as common misconceptions in perceiving this adddiction by most people...basically you're required to listen and yell out in unison at the top of your lungs a few times, certain things like 'i hate these cigarettes!!!' and other 'affirmations' of one's resolve to quit immediiately...
                      some of it made logical sense but i was not convinced about some of his conceptions regarding the adddiction...to me, either weren't very logical and/or didn't match my own experience or personal observations/perceptions...felt quite silly throughout the whole 'seminar' but resolved myself to fully commit to his method...at the end of the entiire session, and following the actual procedure, everyone was given a page of paper containing a written 'mantra' which one's supposed to repeat aloud everyday 60x continuously at least once/day... the 'mantra' is of his own invention and states:
                      i hate 'em, i quit i know i quit i'm done! i'm free and i'm happy"...

                      well, i struggled mightily against the desire to light up but withstood it for about 26 hours ...had increased spasms, i suspect due to withdrawal symptoms already setting in...i was also increasingly turning fast into a bloody unbearable fuck...everything was setting me off and i went off on my mom about 24 hours post-procedure as i've never done before, couldn't control my friggin' nerves...finally i gave in and lit up after that...back to smoking, the procedure didn't affect me as it apparently does some others for whom it is successful...thus basically i threw away $245 and that hurts....

                      2 days after the auriculotherapy procedure, i had an appointment with the new surgeon assigned to me at englewood hospital, on june 22nd...he saw me and checked out the wound for about 5 minutess and wrote me an rx for a bone scan and i was given a next appointment date for 3 weeks later, i.e. wednesday, july 13th...

                      meanwhile, i've already had a pending appointment for the following monday [june 27th], which was 2 days ago, at the morristown nj 'wound care center' for alternative/second opinion...i figured, they might want a bone scan as well so i'd better havve it done at morristown following that appointment...thus off i went to that appointment next but instead of a surgeon [who was recommended to me by kessler], i was seen by some other doctor, who - i found out to my dismay at the end of my visit - isn't a surgeon at all...he even tried to question whether i'm a paraplegic or quadriplegic by actually checking my level of responses, like hand/wrist function, sensitivity level on my foot, etc...finally, he augustly declared thus to the attending nurse: "yeah he's right, he is a quadriplegic..." apparently they had a talk before he saw me and the nurse must've thought i was pulling her leg or something with regards to my disability level??...
                      wtf???!!!!.....as if i couldn't be sure myself of being one for over 21 years and clearly stated the nature of my injury and that i'm a c5-7 level quad as of 1990 to the nurse who took down my info for their records at my initial outpatient admittance procedure....oh man, this did not start well and my confidence level about this facility's competence has immediately taken a huge dive hehe....

                      after checking out my wound, he stated that they [i.e.. morristown hospital's ' wound care center'] don't like using the 'hydrofera blue' stuff to pack pressure sores/wounds like mine with, instead they prefer to loosely fill the wound with a rolled gauze soaked in saline solution and dressing it with a gauze pad on top of it [to absorb any drainage]...he'd llike that procedure to be done ideally twice daily but since i have a nurse home service visiting me once/day it'll have to do...so out came the blue stuff which has been used to pack my wound by englewood's 'wound healing center' thus far and in went the rolled up gauze, etc...

                      then he sprung up a real duesy on me...he asked me whether he could take an actual bone sample right now for biopsy...at this point, i was still convinced that i'm being seen by a surgeon, albeit not the one recommended by kessler so after momentary hesitation i've agreed...i was only administered a mild anelgesic jelly to my wound by a nurse just prior to this doctor's entrance into the examination room because i was told that he'll likely take a culture sample but there was no plan to take a bone sample...i didn't feel that the jelly wouldd be sufficient to anesthetize me for a bone biopsy but the doctor said it shouldn't hurt too much so i let him go on...
                      oh crap!!... each of his bone taking samples [he took 3 small pieces from within my wound] hurt and burned like a bastard!!...i got quite a dysreflexia as he was performing tthe procedure with some bone cutters inside that hole...won't ever trust this guy's word hehe...

                      afterwards, he said that it'll take 7-10 days for biopsy results to come back and that hopefully it will show what kind of bacteria has infected my bone, so it's better than a bone scan...he wrote me a prescription for cipro antibiotic, highest dose to be taken for a whole month [man, i'll be eating a lot of probiotic yogurts to hopefully keep a diarrhea at bay from such a long antibiotic prescription] and since i've told him that i get frequent and painful mouth infections from antibiotics he also proscribed some stuff i had to use before for it called fluconazole....
                      after i've told him that i've read and heard from several reliable sources that oral antibiotic intake isn't effective for treating bone infection, he agreed that generally that's the truth but in his opinion there's a good chance that in my case it might prove a success...fine with me...

                      at this point i was bleeding quite profusely from the wound and since i was inceasingly feeling the burning pain following the biopsy procedure and thus getting less comfortable by every minute, he asked me what i usually take for my acute neuropathic pain, and when i told him that i avoid pain killers unless i'm at my wits' end from pain, he proscribed something called gabapentin [i think it's a neurontin by a different name which has proved to be useless for my n/p pain in the past already]...well, i asked my mom [she drove me because my car has no a/c and i get heatstrokes at the drop of a hat as i've explaind elsewhere in this thread]to stop at a liquor store immediately after leaving the hosppital and had 3 huge swigs of red johnnie walker [black's my favorite and tastes much better but much more expensive too hehe] which has always proved to be an instant pain assuager when i'd get a painful tooth/root infection...if i didn't i would be very cranky by the time we made it to my apartment...that's an understatement btw...
                      };->

                      but here's what really surprised me, negatively i should add...upon setting up a date for my next appointment [monday,july 11] at morristown, he remarked that i should also rather remain with the englewood 'wound healing center', id est, the facility which has been treating my pressure sore thus far...this despite his opinion that the wound care thus far was done improperly and my own statements to him that i wasn't happy with the wound treatment there nor about my very distant interaction with surgeons there as far as any information on my wound status is concerned....the nurse then explained his remark that they don't like stepping on others' toes professionally...well, i guess that's more important than the well being of the actual patient...perhaps it's my medicare/medicaid only coverage which makes a patient of my kind undesirable to them....
                      upon leaving the place, i asked the nurse who attended this doctor's examination/biopsy procedure, about whether he's an experienced surgeon and that's when i was told that he isn't one...i think she called him a 'rehab physician'....i thought only surgeons are allowed to cut patients' bones??...whether during a full scale surgery or a smaller biopsy procedure like mine...am i incorrect??...

                      well....here i am then, still unsure whether to stick with the englewood center where i've been treated so far, or to switch over the entire treatment to this morristown facility...a sympathetic nurse at englewood, whispered in my ear most recently to not let this newly assigned surgeon at englewood hospital operate on me, which has further convinced me not to stick with them, but neither am i being assured of the level of competence of, and desire to heal my wound by, this morristown place i've just visited for the first time....

                      here's my plan for immediate future:
                      1 - at present, i'll be concentrating on cutting down my smoking by at least half, and since the flap surgery and at least some bone scraping [if not partial femoral head amputation] seems like an inevitable destiny for me, i'll be trying my best to eventually quit...

                      2 - i don't want to burn any bridges at this moment, therefore i won't cancel my next [july 13th] appointment at the 'old' englewood facility with the surgeon there...i'll hear whhat he'll tell me at our next meeting ...unless, the preceding appointment [by 2 days, on july 11th]] at this 'new' morristown facility will result in some significantly new info on further treatment and at which point, to remain with the englewood facility shall seem unnecessary...

                      3 - i'll call the morristown 'wound care center' later today to ensure that this time my next scheduled appointment 2 weeks from now will be in fact with that kessler recommended surgeon, not with whoever the physician was whom i saw 2 days ago...also, i'll inquire why i was not seen by an infectious disease specialist as told i would be when i first made the appointment for this past monday....

                      any suggestions and helpful comments by sci-nurse, et alia, on my current status quo are welcome as i'm not certain myself how to proceed in light of these most recent events...
                      };->
                      Last edited by juras; 29 Jun 2011, 9:23 AM. Reason: typing errors...
                      wherever you go there you are...

                      Comment


                        #71
                        I have no experience with a bone biopsy ... but I wish you had been on IV antibiotics right after that rehab doc disturbed an infectious bone area. Jeezus.

                        Careful with transfers on Cipro ... it can cause tendon ruptures so no awkward or high transfers. I'm on it myself at the moment (along with Clindamycin) and doing the yogurt thing! lol

                        Hope you take multi-vitamins! If not, good time to start! Congrats on making a commitment to at least half your smoking habit - hope you stick with it!
                        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


                          #72
                          Originally posted by lynnifer View Post
                          ....Careful with transfers on Cipro ... it can cause tendon ruptures so no awkward or high transfers. I'm on it myself at the moment (along with Clindamycin) and doing the yogurt thing! lol...Hope you take multi-vitamins!..... Congrats on making a commitment to at least half your smoking habit...
                          damn, didn't know about the 'tendon rupturing' side effect of cipro...that can screw up my world even further...problem is, all my transfers these days are awkward and rather hard...my legs,hips and torso have deformed so much from their previous state, from all this bed dwelling while i was on a 'vac', that currently as soon as i'm in a non-standard reclining position on my side, i spasm violently from my upper back to feet; and there are 2 sorts of spasms which happen simultaneously...
                          one is the typical flaying, flapping and shaking of my extremities...the other type [actually still the same type of a spasm just manifests itself outwardly in a very different way] is the 'locking' up of my body, joints and extremities forcibly in a state of high tension and often stretched out, which usually ends with a huge throw of my body backwards or to the side and i've flipped over in my wheelchair from that already...

                          the spasms are triggered by any smallest stimuli of my body, such as a slight shift of position or even a light touch somewhere upon my body...thus, nearly every transfer, even a very mild one, now results in a violent series of spasms as i transfer into/fro my chair and i'm actually fighting very hard against my own body to simply move in any way....so my transfers now are highly forceful and not fluid at all...i have to often use all my arm/shoulder strength just to make one these days and i have to throw myself over asap, in between those spasms, so i hopefully won't get one in mid-transfer....
                          'guess i'll just have to hope to be lucky and keep my tendons intact....

                          hmm, what if i'd start to regularly but very lightly work out again, with a say light 5 lb wrist weight, and do some arm/shoulder stretching before that?...would that offset the chance of damaging my tendons during transfers??...
                          not too sure it would though and might have just the opposite effect, as i have painfully injured my shoulders a few times due to heavy weight workouts on my smith machine....every bloody thing is a chain reaction....grrrrrr....ya take some drug or action to alleviate one symptom [or a set of] only to set off a bunch of different ones as a side effect....what's the bloody point hehe....

                          i know, should be used to it by now but apart from the acute n/p pain and some broken bones a few times, mainly due to my negligence, overall i think i've been quite lucky as most quadriplegics go [at least when comparing my quad life to some horror stories from sci forum], up until this bloody pressure sore got out of control...hell, up until i've crashed head on into the tree in my pick up back in 2003, i actually still retained my waist size [28-29"] from pre-injury life and it stayed so for over a decade, which made some doctors wonder how that's possible for a quad not to have a buddha belly hehe...i suppose, now's time to finally get really familiar with all those other wonderful things quads [especially higher c level] usually deal with much earlier than i 've been....


                          aye, i've been taking one-a-day since time immemorial...and quitting smoking will be the toughest thing for me...we'll just see....
                          };->
                          wherever you go there you are...

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                            #73
                            hey jenn, what about your own health status quo bambina??...i was only able to glean from your facebook posts that you're kinda in a shitty way yourself and need more surgeries, etc...what is that all about??....you've been helping me out here, along with sci-nurse and others, with my problems but you yourself likely need some good help/advice....perhaps it's time to seek such out for yourself and forget about mine...i feel crappy about perhaps appearing so egotistical here by only concentrating on my situation...even if that's what i've started this thread here for and have already received a lot of very useful help and info...

                            so what about that surgery you'll apparently need soon....how serious is it potentially and factually????....
                            wherever you go there you are...

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                              #74
                              Foot: Not serious, caught early. Bracing will probably fix to take pressure from a pronating foot. My wound care doc and I are all over it.

                              Hysterectomy: No idea. Have currently lost all bowel/bladder control that I had (well never really had but I used crede/valsalva) and am not sure about my future care in that area. I think that surgery will be a bit major as my uterus has to come out, there may be a problem with a left ovary and bladder/bowel need to be suspended. It is really starting to hurt when I wheel and cause some problems catching my breath but I've been preparing for this since the beginning of this year. Uro and Uro-gyne are discussing a surgical date and both are female which is ultra-bonus.

                              Goal: Back to work by November???

                              My only complaint is that I'm completely out of shape and stamina from being sick on/off the past two years and spending a lot of time in bed. I had just returned to work March 2010 and was off again by July (I fell during a car transfer when we switched to 12hr shifts and I could not keep up - I was exhausted!) I went back in November and had to stop by mid-January.

                              After the hysterectomy I'll be in a short-term rehab facility for 3-4 weeks? I hope to see a PT (my first in 26yrs!) before I try going back to work this time so I can build up my stamina and strength.

                              I get more out of helping others when I've been there .. always have.

                              I can't help with the spasms ... I'm completely flaccid. I can't even imagine what that must be like. I can see why the doc and nurse were discussing your para/quad dilemma - your arms are very muscular.

                              I'm not sure I'd participate in heavy exercise right now if I were you ... I made that mistake with my first bone infection and ended up with cellulitis by the end of that week. Gentle stretching maybe like the nurse advised earlier?

                              Full of good news I am! LOL
                              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

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                                #75
                                Hi...just wanted to say I wish you the best! Take care!

                                Teena

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