Sunfish

thanks for your kind words sophia (and others of course) and while i'd never thought about it as such, you are SO right in that personal updates take an entirely different kind of energy than replying to other posts. (thus at least part of why my website is embarrassingly not up-to-date...) and no, it's definitely not sepsis. sorry if i'd given the impression that there was a concern about that in the moment, but we all knew i'd be WAY sicker if that were the case. there was the underlying concern of if there were a small infection lurking somewhere it could become sepsis, but now that's simply shifted to the fact that if fevers are my new "norm" we won't have as good of a first warning sign if/ when infection is an issue at any given time (which, obviously, will happen sometime...not necessarily something big but i doubt i'll make it through life without something little creeping in at some point) which thus will make it harder to catch things earlier. three of the four times i've had sepsis though there hasn't been any warning until it's at a point of critical illness (which fits with the theorized etiology of my sepsis) so we'll still know if that is the case, it's just smaller things that may be harder to decifer. so we'll see...it's always hard for us to catch "little stuff" anyway b/c i don't tend to get specific symptoms for various reasons (i.e. i don't get any urinary/ bladder symptoms with a UTI b/c of loss of sensation so unless it gets to the point of kidney pain i only have generalized symptoms). so yep, it stinks & is frustrating but particularly if the regular tylenol pushing helps it is far from the craziest thing that's come my way. i just think it's a really good thing that we don't know what's in store ahead of time b/c if someone had told me what was to come years ago i may have keeled over in shock. thankfully, however, that's not how things work so as things we never could have fathomed happen along the way we're able to deal with them as they come, bit by bit (though sometimes the bits do come to come quite rapidly in succession!). melissa

well, for better or for worse, the current thought is that the fevers are "just" an autonomic issue. i'm finished with my antibiotic tomorrow and have a follow-up CT scan on monday but after seeing my PCP today we both agree that after almost six weeks i'd be a lot sicker if it were an infection of any sort. i see dr. grubb in mid-november so combined with the pulmonary follow-up that will obviously round out the discussion but nothing else makes a lot of sense at this point. the fact that i haven't had anything over 102.7 may very well be b/c i'm treating the fevers sooner and thus possibly keeping them from spiking higher. i'm obviously not thrilled about the prospect of this being my new norm and am not totally settled on or accepting of this yet but if i haven't learned by now that i'm not the one in control of what goes on (or doesn't go on) in my body (nevermind anything else) then i'm a REALLY slow learner! so, if this ends up being the case i'll learn to deal with it the best i can. in this regard we're actually going to try pre-treating, i.e. taking tylenol constantly while awake rather than once i get the fevers. and if i need/ want to go out she gave me the okay to take motrin & tylenol together as needed as well. so we'll see. thankfully my liver is happy these days which gives us more room to play with this. at some point we'd obviously stop the meds and see if the fevers return (if they seem to subside) but if it brings a bit of relief i'll be glad to have it for now. though i think i may start crushing tylenol b/c i'm going to go broke with the liquid...it's almost a dollar a dose for an adult dose!! of course that's the least of my worries but i can certainly find better things to spend money on if it's not necessary. so...that's the scoop. i'm still curious to see what the chest CT shows but based on the report only (not the actual film) my PCP doesn't seem to think it's anything significant. and of course what dr. grubb has to add next month will be interesting as well but i'm starting to feel that this (my autonomic dysregulation) might be the issue. sigh... melissa

unless you have a policy with only catastrophic coverage, it's hard to imagine an insurance company without coverage for TPN IF one has met their criteria. the criteria can be quite rigid though (for good reason as TPN & related expenses cost hundreds of thousand a year) and very often (if not always) require proof of inability to use tube feeding. and - as backward as it may sound - there are policies out there that don't cover tube feed as this can be considered a replacement food product and is available without a prescription. TPN, however, is a prescription IV item so falls under infusion therapy in regard to insurance coverage rather than nutritional support. it sounds like somewhere along the way some information may have been lost/ confused in regard to the information you received b/c, at the very least, it sounds incomplete. i'm not implying that anyone meant for that to happen but unfortunately it's still a common occurance. while i know it takes a lot of time & energy, at this point i would call your insurance company yourself to try to find out more directly what the situation actually is as it's hard to problem solve without a crystal clear understanding of the problem. if the initial customer service rep doesn't seem knowledgeable (which is VERY likely in regard to this more specialized issue) insist on speaking with someone who CAN give you an answer. realize that they can't give you info regarding what your doc has planned specifically for you (aka they can't tell you it will be covered) but they CAN and MUST give you info regarding what the policy states. i would also recommend (to everyone for that matter) that you work on getting a hold of your COMPLETE explanation of benefits for you policy as the one or two page summary consumers are readily given doesn't help much in situations beyond basic appointments. unless you purchased the policy yourself (privately) this usually has to be obtained through the insurance carrier rather than the insurance company (i.e. the company who bought the policy...for me it's my former employer) but you are entitled to a copy. it may take several phone calls but its well worth it as i can't tell you how many times i've been glad to have it as a reference; in short it's saved me a lot of time/ energy/ stress in the long run. all the best, melissa

while the drugs are closely related they're obviously not identical so i'm wondering if you could have been experiencing a withdrawal effect. having incurred that once myself i know it was HORRIFIC (i was told to stop lexapro before testing but was incorrectly told i could just stop cold turkey). other than that instance i never had a problem with either med (celexa or lexapro) but honestly don't know if either ever benefited me either. i had some mild increased nausea when starting/ increasing dose/ switching but other than that they didn't do much for me in any direction. i hope that your insurance will allow you to have the med that works best for you without too much hassle, melissa

without trying to sound short, there's not a drug out there without side effects. that said, i tried wellbutrin years back (sometime in the spring of 2005) and it didn't do a thing for me good or bad. for all i knew i could have been taking a placebo. just as with everything else we're all different. i'm pretty sure there have been other discussions re: wellbutrin though so you may want to do a search of past posts. last but not least, if you're considering starting on a smaller dose & working up, make sure that the pill you have can be safely split. anything that is extended release or enteric coated generally can't be altered. it sounds like your prescription is for a slow release (SR) form of wellbutrin so you'd likely have to get a different script in order to start with a lower dose. good luck, melissa

lol....flop & i were evidently posting simultaneously too! sorry for the repetition

hi maggy - of course your daughter is MORE than welcome here but i did want to let you know that i'm 99% sure that DYNA isn't limited to those in the US. while the name does imply such (dysautonomia youth network of america) i used to be involved with them and there were members from other countries. there is also an organization in the related to syncope/ dysautonomia that may be a helpful resource for you to have; it's not geared toward youth but if there are any such groups in the UK (for youth) they would likely know about it. the link is: http://www.stars.org.uk/. hope this helps, melissa

hello again - i'm glad to hear that you have talked about the different options with your docs so that it's a thought-out decision. i've heard of more than one person whose doc made a unilateral decision without any decision so just wanted to make sure that wasn't the case for you. it sounds like your docs definitely have your best interests in mind though which is a HUGE help in the midst of what is a tough situation. i'll definitely keep you in my thoughts & prayers as you move forward and am certain that your past onc experience will be very helpful. you're right that it's different when it's you, but being familiar & comfortable with medical jargon, procedures, etc is a great advantage. even just having spent a lot of time volunteering in hospitals & studying in the health field were/ are helpful for me b/c while i never thought i'd be dealing with my own lines, tubes, etc b/c i didn't have to get over the hump of being intimidated/ scared of doing things (which is the case for many). its interesting to hear your doc's opinions on PICC lines/ tunneled catheters. in the past few years i've come to realize that different docs have very strong leanings in certain directions so in the end it seems to be very much a personal preference, with of course there being individual considerations for each patient as well. oddly enough the only time i've ever had a problem with clots was when i had my broviac line (different brand but essentially the same as a hickman). this is NOT the norm but it's what happened to me; the broviac which was intended to be longer-lasting ended up being my shortest lasting line of all (3 wks). i've now lost all central line access in my arms & on the left side of my chest but am currently REALLY liking my port (though my former GI doc, who i loved, wasn't a fan of ports for those who needed continuous access such as me). regarding the home nursing situation, i should add that for the most part the home care nurses i've encountered over the past few years have been some of the best nurses i've ever met or worked with. i've dealt primarily with 7 people (with additional fill-ins/ subs on occasion) and all but one of them have been very good with two of them being absolutely amazing. but one REALLY wasn't so if that happens to you don't be shy about speaking up b/c there ARE good ones. last but not least, i do want to put a bug in your ear for moving forward. i'm NOT trying to tell you to change the plans for this week and hope i'm not overstepping or overwhelming you by going on like i am but as much of your situation (at least GI-wise) sounds so similar to mine i'd feel remiss in not sharing a bit more about my experience. i too have intestinal dysmotility and was told by numerous docs that there was no way i'd tolerate tube feeds so there was no point in trying. we ended up placing the J tube (initially G/J but now i have separate G & J) for meds & an attempt at trophic feeding (VERY small amount of feeding without any meaningful nutritional value) to try to help maintain the small amount of intestinal activity i had and to attempt to quell the severe bacterial overgrowth. bacterial overgrowth has been & continues to be an ongoing issue for me to the degree that the bacteria have - on four occasions - translocated to my blood streams and caused truly life-threatening septic shock. a few months ago i was actually in the process of pursuing a multi-organ transplant b/c things were NOT good but, much to everyone's surprise, a stubborn doc was determined to give the jejunal feeds one more time at the end of my last hospital stay and we managed to find a formula that i can tolerate. it's very dense so the quantity needed is much less and while the bacterial overgrowth is still expected to be an issue for me the expectation is that it will be less of an issue than when my intestines weren't being used hardly at all (meds with flushes & a small amount of "feeding", i.e. 100 calories every 24/hrs). i am still dependent on IV hydration via 3L of saline daily b/c my intestines can't tolerate/ process enough volume to keep me hydrated. with higher volume my intestinal contents actually move backward unto my stomach & i can drain them from my G tube! i also found the G tube to be a HUGE relief in regard to nausea & vomiting issues. for most of this year i was on continuous drainage/ suction and while i'm currently managing with intermittant drainage (due to a med change) not vomiting bile on a regular basis is WONDERFUL (something that was my "norm" even without ANY oral intake). and getting my meds via J tube was something i wish we'd done much sooner as i was hardly getting them at all when i was trying to take them orally. so...in short i just want to encourage you to realize that there MAY be other options moving forward. obviously i can't guarantee it as we're all different but even with fairly severe intestinal issues there is a possibility of tube feeding. and/or a j tube can be great for meds and/or the g tube great for drainage/ decompression. often NJ tubes are used for a trial before a surgical placement in order to try out the feeding without anything invasive though sometimes they tend to migrate into the stomach and thus aren't a good test. one good thing about being on TPN when trying to start tube feeding is that you have more room to try to work into tube feeding tolerance, trying different formulas, etc without there being a concern about malnutrition in the mean time. having only been off of TPN for about 6 wks we know that i'm absorbing sufficiently for now but there are still doubts about how it will be long-term. other than electrolyte issues that are requiring some supplementation (as well as the hydration) i'm maintaining & have even managed to gain back the weight i lost during my last bout of sepsis. at some point i very well may have to return to TPN but if nothing else my liver is getting a break & i have one less thing increasing my chance of infection. i'm sending lots of hugs & prayers & good thoughts your way. melissa p.s. do you know if your docs are planning on cycled TPN (12 hours) as opposed to continuous (24hrs)? you always have to start on 24 hrs but unless there is a specific reason that the cyclical isn't an option it's generally preferred in the long-term/ home setting. not only more convenient but also better on the liver as it gives it a "rest" so to speak.

based on the mechanisms of how each med works, i would tend to think midodrine/ proamatine would be less of a concern in regard to possible issues with cranial pressure. there's also the advantage that it's short-acting whereas florinef is longer acting & thus takes longer to build up but also to fully leave your system should there be a problem with the med. obviously it's a decision that has to be made by you and your doc but just thought i'd add those bits of info to factor into the equation. hang in there, melissa

hi sheridan - well, i can certainly say "been there, done that" in regard to the gastroparesis/ TPN. i was on TPN continuously for a year & a half & very well may have to return to it at some point (currently managing on calorically dense J tube feedings with IV hydration) so don't hesitate if you have any questions; i'll be happy to help out in any way i can. i currently have a port but have had numerous central lines (PICC, tunnelled aka hickman/ broviac, etc) and did all of my own TPN administration at home. it's a bit overwhelming at first but it didn't take long for me to be very comfortable with the daily routine. you'll likely be assigned a home care nurse upon discharge and i can't emphasize enough the importance of this being someone you're comfortable with; if you're not it is your right to request someone else. a good nurse truly makes all the difference, particularly when you're new to the process. i don't want to bog you down with questions but i am curious as to why the decision was made to proceed with TPN before trying tube feeding (into your intestine so stomach is bypassed)? do you have known intestinal dysmotility as well? just asking b/c there are far fewer risks of serious complications with enteral feeding than intravenous. and is there a reason that you're having the hickman placed rather than a PICC line initially? i'm only asking b/c i've "been there, done that", read a lot, talked with numerous people who have been on TPN/ tube feeds due to motility issues, etc. it's a bit unusual to immediately have a tunnelled central line placed (b/c more invasive than a PICC) and usually tube feeding is tried or at least discussed before TPN. if you're not familiar with it already i would also recommend the Oley Foundation (www.oley.org). they're a nonprofit with the mission of support/ education/ etc of those on hope enteral or parenteral nutrition. they have a newletter as well as numerous other resources that you may find helpful, interesting, encouraging, etc. hang in there, melissa

just an FYI re: the ejection fraction (the percent functioning shown by HIDA scan testing) as otherwise the numbers can be very misleading. anything above 30-35% is considered normal, so while a number such as 28% might sound really bad it's really just below normal as far as gallbladder functioning is concerned. i had my gallbladder removed several years ago and am glad that i did as it took care of one specific problem but it certainly did nothing for the rest of my GI issues; for me my gallbladder dysfunction was thought to be part & parcel of my systemic neuropathy, GI & otherwise. my HIDA scan results were 6%. i have heard many stories good & bad re: gallbladder removal (it is often discussed on a gastroparesis list i belong to) but proceeding with a hyda scan is definitely a good first step. for me (and my docs) the decision to proceed with surgery would have been tougher if my numbers had been in the 20s but with a single digit result there wasn't a lot of discussion to be had. there are some meds that you are required to stop for the hyda scan so make sure to ask about that if/when you are scheduled. the test wasn't pleasant for me but wouldn't make my top ten list of least favorite tests i've endured either. melissa p.s. i too would highly recommend a search as there have been a LOT of topics re: gallbladder testing/ removal over the years.

while it's definitely true that meds can affect mood as a secondary effect/ action, when it comes to narcotics and related pain meds (ultram isn't a narcotic but has some similarities & can still be addictive) i doubt it would be an effect that any doc/ health care professional would support as the reason for taking them. while obviously someone can be in a better mood b/c of pain relief (i.e. someone in a lot of pain may not be very pleasant b/c of the pain) that doesn't seem to be what you're talking about as you've said that ultram doesn't help your pain. so while i don't doubt that the effect you're experiencing is very real it's probably not a good idea to take it for that reason. i have tried ultram/ toradol (generic name) twice and it's done nothing for me in regard to pain (or anything else in that matter). at 50mg i couldn't even tell i'd taken anything. at 100mg i felt a bit odd...woozy perhaps & not anything pleasant, but not scary or horrible either. something i could certain tolerate if it helped with the pain but would have no desire to since it didn't touch the pain. generally speaking ultram wouldn't be expected to help with neuropathic pain. b/c of the mechanism of nerve pain the more standard pain meds don't generally help much. when i have been on pretty high doses of morphine and/or dilaudid (probably considered in the realm of the strongest narcotics out there) for acute surgical or sepsis-related pain my neuropathic pain still wasn't really helped much. perhaps it was a bit less noticable but probably just b/c i was so drugged that most things were less noticable! i also had a lot going on at that time that made my neuropathic pain pretty much a non-issue, but nurses still always ask about it during assessments so it was brought to my awareness intermittently. but all in all still proof that narcotics aren't really much use for neuropathic pain. melissa

in general elevated B12 levels aren't a big concern up to a point, though i'm not sure at what point it becomes something that should be paid attention to. i do know that, while unlikely, there can be such thing as too high a level. or perhaps more accurately that a really high level can be indicative of another issue. i do know of one diagnosis that can involve elevated B12 b/c of knowing someone with the diagnosis. i'm guessing there are other possibilities, including that it means nothing at all, but the one i'm familiar with is called Polycythemia Vera, or PV. the diagnosis is made based on a constellation of abnormal blood work/ testing though, NOT just elevated B12. i think the very simplified idea of PV is that it's an overproduction of red blood cells (amongst other things) but for more info i'm sure it would be easy do a search for the full set of diagnostic criteria, etc. i do know that my doctors - many of them in various specialties - as well as dieticians i've encountered have no concern about my B12 levels getting too high. i started out very deficient but they don't monitor me on any sort of regular basis and one autonomic neuro actually told me that he'd like my levels to be higher than normal ranges. my primary didn't entirely understand his reasoning but also didn't have any concern about it causing problems. so in short i don't think elevated B12 is nearly as concerning as some other elevated blood levels could potentially be but the fact that you don't take any supplements and - if anything - would perhaps be expected to be deficient b/c of GI issues COULD have meaning in regard to something else going on. and i'm almost 100% certain there is nothing related to gastroparesis/ slow motility that could cause elevated levels. if i were you i wouldn't worry but would figure out a way to pursue more of an answer than your PCP was able to provide. there is nothin let us know if/ when you find out more! melissa

it's obviously not the same thing as what you're referring to, but i was entirely dependent on IV nutrition (TPN, or total parenteral nutrition) for over a year and a half, so i suppose i have had a LOT of "nutritional IVs". they contained everything needed by the body (sugars, proteins, fats, vitamins, etc) including thiamin on a daily basis. i've also been given numerous things on their own during hospitalizations but other than the comprehensive the only things i've received intravenously on an outpatient/ non-critical basis are saline, potassium, magnesium, & antibiotics. (i get B12 injections weekly but IM injections are very different from IVs.) the only thing i've ever had a problem with was iron & one specific antibiotic. other issues associated with TPN (liver damage) but they are very specific to TPN, largely the fat. i hope your infusion goes well, melissa

melanie et al - i'm not rachel (though am sure you could figure that out on your own ) but while my sleep issues (apnea) aren't the same as those primarily being discussed on this thread i thought i'd still chime in briefly re: my experience with sleep docs. in short i agree that the individual doc matters much more than whether s/he is a neurologist or pulmonologist. so while it's obviously your decision to make i'd probably lean toward a doc that has been recommended to you rather than a neuro that you know nothing about. anyone you see should be certified as a sleep doc as well, though obviously that's just the starting point & not the only issue at hand. my original sleep doc (after my autonomic neuro sent me for the sleep study) was a neurologist. i only saw him a few times but had fairly neutral experiences with him. and the clinic/ center was great so all it was a positive. all in all he was fine & dealt fine with treating my apnea, though i was a fairly easy patient in that regard (as opposed to in many other regards!) diagnosing/ treating my apnea was such a positive for me that, other than working with the tech to find a mask that didn't give me a rash, i didn't provide much of a challenge. he "got" my autonomic issues to some degree but also made some comments on occassion that indicated his level of understanding in that regard was pretty limited; i'm used to letting those sorts of things roll of my back though when they're not damaging to the issue at hand, which they weren't. but i can't say he'd be someone i'd go to or recommend if creativity and/or out-of-the-box thinking were required. when i moved from where my first doc i actually didn't seek out a new doc as, in relation to my other health issues, my apnea seemed to be managed well and my PCP had no problems writing a script for a new mask, etc. if i'd had problems and/or in several years time (as re-evaluation is recommend periodically) i would have found a doc then; i'm generally a big advocate of finding/ having a connection with a doc before problems arise but once diagnosed properly (which took a LONG time) my sleep issues have been fairly boring. during my last hospital stay, however, i ended up getting hooked up with a new sleep doc as - and this is what you may find interesting - in my case they were one in the same as the critical care docs (who were pulmonologists.) i never had reason to be aware of this previously but it ends up that many critical care specialists (the docs that generally the attendings for ICU patients) are also pulmonologists; because, as you know, some pulmonologists are also sleep docs, it thus follows that some sleep docs are also critical care docs. the reason i'm going on & on about this is that critical care medicine very often deals with autonomic issues. obviously it's in an acute context rather than that of a chronic illness, but i still found that it meant most of the pulmonary/ critical care/ sleep docs i encoutered were pretty in the know about my autonomic issues, meds i was on, etc. there was one exception who couldn't seem to get past the fact that there was something he couldn't fix (my chronic issues) but the others i encountered (and the one i'm following up with, both for sleep & other lung issues) seem to be fairly high up on the learning curve as far as autonomic issues are concerned. we learned during the stay that my apnea was no longer being controlled entirely with my current treatment i'll be heading for another sleep study soon myself...fun fun. they're going to have a hard time competing with the nice locale of my first two studies & they already gave me a new machine/ settings (based on oxygen levels) which is making a difference for me already so i could do without another study but ah well. i rambled much more than intended, primarily to say that i wouldn't get too hung up on the specialty of the doc beyond him/ her being a sleep doc. i think it's great that - while i know it's not an easy feat on many levels - you're going to be able to participate in the studies at vanderbilt. i think i've mentioned it before but i participated in several sleep-related studies for them that were solely questionnaire-based just over a year ago & had extensive conversation with one of the docs on the phone about the inpatient sleep studies that they were, at the time, trying to get started. i'm not eligible to participate for various reasons but think it's great that they're doing the studies. i will look forward to hearing about your experience & of course hope that it will provide info that is helpful for you moving forward as well. melissa

so sorry for all of your frustration. not sure if any of it will be helpful, but i just wanted to let you know that i did (finally) respond to your questions under my fever post. hang in there. i hope you get some answers and/or feel better soon... melissa

aj - sorry if my post seemed to imply your not knowing about the different neuropathy classifications/ diagnoses. i didn't/ don't think that at all; my mentioning the terminology was simply b/c over the years on the forum when neuropathy is discussed someone almost always ends up asking for clarification regarding what's what. essentially i was trying to pre-empt the question! unfortunately i was half asleep watching baseball (go cleveland!) when i posted above so did a rotten job doing so. when i just reread my post i realized that i wasn't at all clear b/c, as you mentioned, small fiber neuropathy is only one of the types of peripheral neuropathy. what i had MEANT to say was that if someone is told they have small fiber neuropathy it means they have peripheral neuropathy; the opposite is not necessarily true, though, as a diagnosis of peripheral neuropathy may or may not mean there is small fiber neuropathy. sorry for any confusion i might have caused anyone! i'll chime in with my B12 experience later as well; i'm fighting a fever/ headache at the moment but did want to clear up my not-so-clear last post. melissa

gggggggggggrrrrrrrrrrrrrrrrrrr. time to rev the prayers & good thoughts back up. the fevers - though thankfully none of the higher ones - are back. yesterday & today. to say the least i'm a bit frustrated. i have an appt with my PCP next week & then my assortment of specialists in the coming weeks/ months that may or may not be pertinant to the fever (pulmonologist to follow up re: the pneumonia/ lung collapse issues, grubb wherein we can discuss the possibility of the fevers "just" being an autonomic issue, & infectious disease doc for MRSA follow-up, though unfortunately that one isn't until mid december). i will be honest that with all the MRSA headlines these past few days i'm wondering if there's any way that has flared back up in my system, though i would think i'd be sicker if that were the case. i've heard/ read/ been told a lot of conflicting info re: MRSA in general though so don't feel that i have a good understanding on certain aspects of it. and while some docs during my hospital stay mentioned doing follow-up blood cultures when my antibiotic course was completed (from the hospital stay, not those i'm on now) at discharge the decision was made that it wasn't necessary. (i had clean cultures in the hospital prior to discharge but was still on abx at that point). pooh - unfortunately i can relate to the nasty lung stuff you went through as both of lungs were partially collapsed, i had pneumonia in every lobe, pleural effusions on both sides, etc. i was pretty out of it at the time but the few things i do recall were the unpleasant procedures (drainage, tubes, scopes, etc). so sorry that you've had to deal with much of the same & you're certainly right that i would much prefer to avoid any more of the same moving forward. regarding the port access, in all honesty it hasn't happened yet for a variety of reasons, though barring any craziness i'll be giving it a go when my nurse comes tomorrow. at this point i need access continuously so the nurse has done the access weekly; my regular nurse was away my first few weeks home & the fill-in was skeptical of my being able to do it so rather than convincing her i opted to wait for my regular nurse to be back who, as i expected, is all for my accessing on my own. the past two weeks though i've been spiking high fevers &/or been in the midst of the pre-fever chills (with accompanying shakes) so haven't been in any shape to give it a try. i do have a double port which makes access a bit trickier but we're still sure i'll be able to do it; i theorectically already know how but up until now things just haven't worked out for me to start the self-stabbing. by this time tomorrow i'll should be a pro . friday - i'm sorry that you're dealing with some fevers yourself. though i don't have a set "normal" temp i too tend to run below 98.6, generally between 97-98. in reality a lot of people have temps that are a bit lower/ higher than the textbook norm; you're right that it can change what constitutes a fever, though in general most docs still won't be too concerned until someone's in triple digits, especially if there isn't official documentation (not just from the patient) of lower norms. low fevers are often a wait & watch situation if there aren't other presenting symptoms &/ or obvious risk factors (urinary catheterization, central line, etc.). but anyhoo...'ll try to answer your questions but feel free to let me know if i don't do so fully. in regard to the bloodwork i had done, my PCP first ran only CBC (complete blood count), metabolic panel (electrolytes, proteins, liver & kidney functions, etc) & pancreatic functions (as i've had several bouts of pancreatitis in past months). she actually chose not to do blood cultures initially but rather wait on the white cell count; if it had been up or down (either of which can indicate infection) we would have done them then. the results were essentially all "beautiful" though, with the exception of my chronic anemia, so at that point we thought the fevers were a reaction to a particular antibiotic i was on & were relieved that there didn't seem to be an infection brewing. when i see her next week though i'm guessing we'll be repeating all of that & then some, likely including cultures, since we've now established that the suspected antibiotic wasn't the culprit. my pulmonologist then unexpectedly found the partially collapsed lung/ pneumonia when i had my follow-up x-ray/ appointment from my last hospitalization (wherein i had severe pneumonia/ pleural effusions/ collapses). she then got me in for an immediate CT scan and after seeing the results started me back on antibiotics, though was honest with me that she wasn't confident the fevers were b/c of the lung issues. there's a chance that the lung findings aren't infectious, particularly with a normal white cell count, but with the recurrent fevers & my history of sepsis she didn't want to take any chances and is in fact hoping that it IS an infection b/c if not it will mean further invasive testing to determine what is in fact going on in my lungs. i'm not sure if you read this entire thread, but one thing that may be a possibility for you (and is still on the table for me) is temperature dysregulation due to autonomic dysfunction. from what i've been told this is more likely with lower fevers (such as you're having) than higher, but it's always a possibility. it's not common though & thus would never be settled on until any/ all other causes are ruled out (infection, inflammation, autoimmune, med reaction, etc). corina - the pond (and your garden) sound beautiful! i would love to spend time there & have no doubt that you & your family would take EXCELLENT care of me! now we'd just need to figure out how to get me from here to there, right? i used to be a long-distance swimmer but even then don't think i could have quite made it across the ocean!seriously, though, it would be wonderful to be able to meet you someday, whether in here or there. but until then i'd love to see pictures of the new garden & pond, as i'm sure others would. i hope that it brings you a lot of enjoyment. so while i'm far from happy about it, that's the current scoop.... melissa

just to clarify a bit in regard to types of neuropathy, both sensory and autonomic neuropathy are considered types of peripheral neuropathy. my understanding is that peripheral neuropathy & small fiber neuropathy are largely synonymous. regardless of the terminology used, i have all of the above per a wide assortment of testing (and of course symptoms) over the years. my sensory issues are far less troublesome, disabling, etc than the autonomic ones; they're bothersome/ annoying but would rarely keep me from being active if they were "all" i had going on. i don't like it but i've largely gotten used to it over the years & it hasn't progressed to the degree that many of my autonomic issues have. i have been given the option of meds (neurontin or lyrica i believe) but with a large chance that they would add to my fatigue i've opted against them as that is a much more problematic issue for me. if there was something i could take occassionally when the burning/ tingling/ stinging is worse than my norm i would certainly be game but the available meds are such that you pretty much have to take them all of the time for any effectiveness. melissa

in the years that i was wearing the hose i've had three different insurers and they have all covered the hose under durable medical. there has always been a limit of two a year, which, when i was quite active & wearing them all day every day didn't quite make it through the year (in regard to maintaining the compression) so i'd usually end up buying at least one additional pair out of pocket but obviously coverage for two pair was/ is still better than nothing. the coverage was always either 80 or 90% (depending on the policy i had at the time) unless i hadn't met my deductable yet (in which case i had to pay all) or unless i'd already met my out of pocket maximum (in which case i didn't have to pay anything). all i ever needed for coverage was a properly written script. it generally needs to include the strength, style, AND the diagnosis. i have been very blessed though with good insurance coverage over the years through my employer/ former employer. with all my health issues i still pay an arm & a leg out of pocket with co-pays, deductibles, co-insurance, but my insurance has still largely been pretty amazing. in general, though, i would expect that if you have durable medical coverage there should be at least some coverage (unless there is a specific exclusion) as they are considered a durable medical item. melissa

super quick update as i have a 1pm appointment.... three days fever free. yippee!!! a bad tummy day yesterday, but still fever free. i knew they were wearing me out but didn't even realize how badly until a day or two without. so the abx are doing their stuff, whether in the lungs or in some other hidden locale. the pathetic thing is that this whole fever ordeal was pretty much the least exciting medical event of my past year. i'll come back to answer the few questions later but wanted to quickly share the good news... melissa

for A LOT of discussion about this i'd highly recommend a search. it's come up & been batted around at length on the forum at least yearly (right about now...) in short, though, it's a pretty devisive issue. both from the patient perspective & that of the ANS docs (& docs in general). ultimately it's a personal decision & there isn't any official guideline/ recommendation for those with ANS issues. my docs (including dr. grubb) have all highly encouraged me to get the shot for years as well as the pneumonia shot, but this doesn't mean they'd recommend the same for everyone. and i know at least one of the top/ highly respected ANS docs recommends the opposite. i've never had a problem with the shots other than localized irritation/ soreness, though i'll add the disclaimer that while i'm in the extreme category as far as the degree of ANS dysfunction i don't tend to have AS many issues with reactions/ meds/ etc as some others (though still more than the general population). in regard to your just being ill, though, in most situations docs would want you to be rid of any acute illness before getting the shot (though if there's an flue outbreak already happening they sometimes feel otherwise). last but not least, without wanting to be a downer, the flu shot isn't a guarantee against getting the flu (nevermind a myriad of other viruses floating around that aren't the flu but are often called such by those who have them). on a yearly basis it's formulated to protect against the strains predicted to be most prevalant. i don't say this to imply that it's not worth getting (like i said i've gotten them for years & will contunue to do so) but just to emphasize that - without being paranoid - it's still important to wash hands, etc. hope you're feeling better, melissa

UPDATE TIME continued thanks for all of the prayers, good wishes, hugs, & - last but NOT least - humor. (i love the steamed fish analogy nina ) i finally heard from my pulmonologist yesterday afternoon who did at least apologize for the delay in calling. apparantly she wasn't in the office with access to the actual CT films themselves until yesterday and though she did have the report earlier didn't want to make decisions on that alone. ah well. evidently it appears that, in correlation with the partially collapsed (or as she likes to say "not fully expanded") lung i have some pneumonia going on. the presentation radiologically is a bit atypical as far as the shape but she started me on a two week course of antibiotics (different than those i'd stopped a week ago). while i don't have obvious pulmonary symptoms, the fact that my lungs/ breathing were SO bad not long ago would make it possible that i wouldn't even realize a slight shortness of breath. and i'm now wondering if some nasty upper left "abdominal" pain i've been having (a bit different locale than my "normal" abdominal pains & bad enough for me to take narcotics at times to at least take the edge off) could in fact be from the lung issues which are in my lower left lobe. hmmmmm...... she's not confident the lung issues are the cause of the fevers but we're using a broad-spectrum abx that would be likely to nab other bugs as well that could be hiding elsewhere. regardless though i'll have to have an additional CT of my lungs after the abx course is finished and if all isn't well then (aside from expected scar tissue) may have to proceed with some further testing/ investigation. thus i'm REALLY hoping/ praying that the abx take care of the fever & the lungs....otherwise there will be two rather pressing issues to be pursued. after a rough afternoon/ evening yesterday (not the highest fevers but 102.7 for a long time with a horrific headache) i'm still fever-free today at 5:30....later than when i've ever had a fever start in these past weeks of daily fevers. i still have a bit of a headache from yesterday but am hoping that the abx are already killing off the hidden bugs, lungs or elsewhere. adding to my "never a dull moment" day-to-day happenings was my port getting clogged yesterday so that an on-call nurse had to come out and reaccess it in the other side so that i could keep my IVs going. another reason i REALLY want to get to the point where i can access the port myself. so that's the current scoop from the fishbowl. granted i realize i never did post my post-hospital update but well, the fevers took over. it will happen one of these days...but for the moment i'm cautiously hopeful that the fevers may finally be on their way out. fingers crossed, prayers said, etc, etc... melissa

unfortunately the fevers are still making their daily appearance with the higher version dropping in on occasion, i.e.. monday afternoon i hit 104.3 which brings with it horrible proceeding shakes, bad headache (lower fevers just bring small headache, etc.). it's really frustrating and as they're still occurring the chances of it being the abx that i stopped last thursday is pretty low. they're really knocking me to the ground and on many days i'm lucky to get my basic medical stuff done and get a quick check in on the computer. so sorry that i've thus been so quiet on the forum...i just haven't been able to keep up with replying much at all. my appt on thursday wasn't with dr. grubb but with his NP; she doesn't generally make any decisions with me without dr. grubb chiming in but he's out of the country at the moment so it was largely just a check in after my recent hospitalization. she was/ is pretty concerned about the fevers despite my bloodwork looking good. at that point she was hopeful that it might be the suspected med reaction. i do have an appointment with dr. grubb himself in another month. i then saw my pulmonologist on monday (from recent hospital stay) and expected to pretty much be told i was good to go in that regard as, before my recent hospitalization, i've never had any pulmonary issues aside from sleep apnea. i had no reason to think my x-ray wouldn't look good, was planning to ask if i really needed to bother with the scheduled CT scan in another 3 wks, etc. of course i was going to ask about the fevers but didn't expect anything exciting from the appointment. not quite the case. i had a small fever while in the office but was also told that my chest x-ray "wasn't at all normal" and ended up getting sent for a stat CT scan right after the appointment. evidently i have a partially collapsed lung (atelectasis) per the x-ray & will hopefully hear back about the CT scan today. the only positive in that regard is the hope that whatever is going on with my lungs could be connected to the fevers. the pulmonologist didn't think that the abx was likely the cause of the fevers. while listening to my chest the doc also asked me "how long have you had this rash??" uh...i could only respond "what rash?!" i had no idea that i had a rash. i always get red cheeks with my fevers (the only time i'm not pale!) but had no idea that my back & chest were all splochy as well....sort of hive-like but the rash isn't raised. so i went into the office thinking i had one acute issue (fevers) & left with three (fevers, rash, partially collapsed lung). just can't win, eh? hopefully some answers will surface sooner than later as the fevers are getting old (more than two weeks now). it's great that i'm at home & not in the hospital but not knowing is still disconcerning. we haven't ruled out the possibility that it's "just" a progression of my autonomic issues but that's not where the docs are leaning, particularly with the lung abnormality &/ or until anything/ everything else is ruled out. we may redo the bloodwork & urinalysis of a week & a half ago just to make sure nothing shows up there but for now i'm hoping to hear back from the pulmonologist..... love to all, melissa

hang in there amy....i know it's easier said than done at times. it really is NOT a good idea though to try to catch up with me in terms of amount of time in the hospital in one year !!! rehab has never been something i've "qualified" for b/c my body couldn't tolerate being up enough, but i've been in rehab-type settings for other treatment (when i was on multiple IV antibiotics that were too much for home) at times so while i know it's not where you want to be, there is a time & place for it such that hopefully it can help get you to a better place before heading home. and i definitely vote for decorating any "helps" you might need that are yours to keep (cane, walker, etc.). my wheelchairs are both blue - one sparkly blue, my IV/ tube feed pole at home is VERY decorated, & i have a wide variety of decorative bags for my portable IV/ tube feed pumps as the medical bags they came with just don't cut it. even if i'm the only one who sees the decorations at times they're much cheerier. love, prayers, & good wishes, melissa