Sunfish

this isn't specific to IVF, but here are some links to info re: anesthesia in those with POTS that may be helpful to peruse, pass on to your doctor, etc. depending on your situation: http://www.dinet.org/links.htm#anaesthesia all the best, melissa

thanks all. i just talked with my doc (PCP) and - for good or for bad - my blood work is "beautiful". good of course b/c it all but rules out an infection as well as pancreatitis; bad b/c the fevers aren't gone & we're still not sure what's up. all in all VERY good though b/c it takes away the majority of any concern regarding sepsis sneaking up on us yet again. our one other thought is that i may be having a reaction to the hard-core antibiotic i'm still on post-hospital from the sepsis/ pneumonia. this possibility had crossed my mind but not seriously b/c i'd already been on it for several weeks when the fevers started. i had a similar reaction (fevers) to another med (not an abx though) a year & a half ago but it started within a day or two. upon further discussion, though, a reaction - though unusual - can happen later. my last dose is tomorrow night so if the abx is the culprit the fevers should resolve within a few days. i hope, hope, hope. gelann, thanks for your thoughts. we've explored that issue for me in the past (fevers being related to the ANS dysfunction) and while dr. grubb thinks it may play a role in their severity at times (like when my temp reached 107 in december when i had sepsis) and certainly in my normal body temp fluctuations, this seems to be something different. obviously anything is possible, but my history points toward anything over 100 being something more acute (and many times serious) so that's the first thing we look toward. i do have an appt @ dr. grubb's tomorrow though so it will obviously get brought up again. so sorry your daughter has to deal with fevers though too; though mine have primarily been infection-based, i've had them a LOT this past year & i know they're not fun. (just out of curiousity, how high do they get for your daughter?) yesterday thankfully did end up being a "low" fever day (101.7) so that's the hope for today too (as it's already creeping up so no fever isn't an option). and then hopefully the antibiotic will end up the culprit & i'll soon be fever free again & can come back with some of my other updates... melissa

hi all - i'd been doing pretty darn well (for me at least, though i'm sure many would consider it quite rotten ) and was looking forward to updating everyone on some of the "developments" so to speak. but now i seem to be in a rut of recurrent fevers that - thus far - are quite perplexing but a bit disconcerning to say the least (particularly considering my history of recurrent sepsis). a week ago sunday i had a fever but it didn't get above 102 & responded to some degree to tylenol. a bit of a scare b/c it was my first fever in years wherein it didn't turn into full out sepsis within 24 hours or so, but in the end it was a bit of a relief to know i could get a fever and have it be "just" a fever (with aches, headache, etc). we assumed it was a virus of some sort and by mid-day monday i was pretty good to go (for me). tuesday & wednesday were also good....amazingly good for me in fact as i actually got out to get my haircut & for a trip to the store (via wheelchair, but still more than i've done in a LONG time). but then thursday the fever returned. similar to sunday in that it topped out at 102 & responded to meds to some degree. knocks me flat for the day but not in super scary territory either, especially having made it through it on sunday. okay by friday morning but friday afternoon fever returned. this time meds didn't help, had violent chills, & hit 104.3. not sure what kept us from the hospital but i wasn't losing other bodily functions or my cognition (happens to me when i get septic) so we held fast at home. since then i've had the fevers daily. usually fever-free in the mornings (though wiped from the fevers & accompanying issues of the afternoon/ evening before) and in the afternoon it returns with a vengence. saturday & sunday they topped out around 102 but yesterday back up to 103.7. i've talked with my PCP a few times & she had my home nurse do extra bloodwork yesterday that we're waiting on. we're trying to walk the line between not heading to the hospital if not absolutely necessary yet not being stupid either and making things worse. we know that i'd be admitted if i showed up at the ER but the mere fact that things are so cyclical isn't at all like the other times i've been septic so we're trying to stay home if at all possible. i am still on hard-core antibiotics from the last hospital stay (about 3 days left). and we're worried that if i show up at the hospital they may remove my port even if that's not really necessary/ appropriate and with my not having a lot of central line access left that's a route we want to avoid if possible. the fever's just starting to creep back in for the day so i'm just hoping/ praying that it's a day of "just" 102 which wipes me out but isn't near as high on the pain/ discomfort/ degree of shakes scale as when it gets over 103 (i'll spare you the details ). but this is getting frustrating and - i'll admit - a bit scary too. and oddly enough i'm just as scared as having to deal with "hospital land" yet again as i am of the physical issues themselves. this ended up longer than i'd expected, but most of all i'd just really appreciate any prayers/ good thoughts you could send my way. both for my patience & that whatever is going on in this crazy body of mine becomes clear, hopefully without it having to get to a really dangerous point. and that we (me, my family, & my PCP) have the wisdom to know if & when the hospital is a necessary evil that has to happen. many thanks.... melissa p.s. welcome to so many new members that i've missed welcoming as of late!!

love the name story flop...we had a post re: the story behind folk's names some time ago & it was fun/ interesting to get the "backstories". and yep, yours has taken on multiple meanings now i suppose (in regard to you flopping around a bit too much at times ) mine too started as one thing but has evolved into many over the years. but anyhoo... so sorry to hear about your "encounter" though i too applaud your ability to recount the tale with a sense of humor. regarding injuries from fainting, i've fainted MANY times over the years. mostly my spoils have been assorted bumps, bruises, & scrapes, but i've ended up going head first down flights of stairs a few times (three i believe) and one of them (the last) resulted in my needing cervical spine surgery. i actually don't faint as much any more - at least not fully - as i either get more warning &/or am better at heading/ noticing the warning i get; i think it's probably a combination of both. so while i'm certainly not better/ healthier than i was in years past (far from it) i don't fully crash to the ground much these days (though you will find me crawling). hope the arm/ shoulder is feeling better soon... melissa

not that i'm the authority on the issue, but i'd vote for trying at least one other brand before throwing in the towel so to speak? and/or trying the waist-high or the thigh-highs that need a garter belt (and thus don't have the extra elastic). just my two cents. it's funny, though....i had the SAME experience in noticing that i felt better with a bit of compression in years past...for me long before i ever had a diagnosis. for me it was really thick dance tights (i did a lot of musical theater). others would complain about the tightness and/or buy larger sizes but i LOVED them!!! only later did i put two & two together. i've never noticed much help with anything other than waist-high as far as orthostatic issues go, which (for what it's worth) is what most of the research confirms too as i understand it. though i don't doubt at all that some are helped by knee or thigh high to varying degrees. and obviously you're wearing them (or trying to wear them!) now for different reasons. i really can empathize with the painful blisters. while the hose didn't bring me to that bad of a rash, many adhesives do & ha supposving had central lines continuously now for almost 2 years i had to endure them quite a bit until we found a dressing i could tolerate. i still have scars, and during my recent hospital stay they missed my tegaderm allergy initially in the ICU so i have a few fresh ones as well as the initial dressings on my arterial line & the central line in my neck were something i was allergic. of course i do realize that keeping me alive was more important than a rash at the time, but i was none too thrilled to have the blisters when i became alert enough to realize what had happened. but i digress.... i hope your skin is happier soon & that you're able to find some hose than work for you.... melissa p.s. i'm not suggesting it's something you want to or should proceed with right away, but documented intolerance/ allergy to the conservative methods of treatment should satisfy any insurance requirement (if your doctor writes it up properly). they (insurance) probably would expect you to try at least other brand (or determine that they are all made of the same materials, which i don't think is entirely the case) and/or style. p.p.s. don't quote me on this, but if my memory serves me correctly i recall Sigvarus brand "feeling" a lot different than many of the others i tried over the years. aside from Jobst (which i tried several styles of) others i tried were Juzo & Ames Walker's own brand, though all were waist high.

i've tried the thigh-highs once but for the most part wore waist-high hose for years. if it's only the top portion that seems to be the problem perhaps waist-high could be an option (as they don't need the gripping material to hold them up at the top). i can relate, but i got rashes more so from my knees down or so. i too tend to have sensitive skin, am allergic to several types of adhesives, etc. i actually don't have a problem with latex though. but anyhoo...i have dermatographism too so for me the rash seemed to be pressure-related, somewhat of a catch-22 since pressure is the point of the hose in the first place. i didn't have this problem for the first few years i wore hose but developed it later (or at least it progressed to the point of being more bothersome). my rash didn't blister (as some of my adhesive allergies certainly do) but was more like hives. i tried numerous brands, played with changing sizes (despite having been measured properly), etc. for this and other GI-related issues/ tubes that make the hose problematic i don't wear them any longer. they did wonderful things for me for years but toward the end of my time wearing them they no longer did a lot for me. i've tried them again a few additional times but the slight benefit i may get doesn't override the rashes & increased GI pain & vomiting they bring about. i hope you're able to figure out a way to give them a try though & that they might help you....they helped me a LOT for quite some time. melissa

sweating is under the control of the autonomic nervous system so many with ANS diagnoses have issues with sweating too much or too little. some autonomic testing actually focuses on the body's control of sweating in various capacities. personally my extremities don't sweat at all other than in extreme situations (i.e. when i have a fever over 104). on a day to day basis, with hot weather, etc only my trunk sweats. i've had testing done showing this odd pattern in me...technically called hypohydrosis (reduced sweating) & or anhydrosis (no sweating). and while not sweating may sound appealing, it's not really a good thing as it can cause major problems with body temperature regulation so i wouldn't recommend it. i know others on the forum have discussed problems with sweating too much (hyperhydrosis), whether in the middle of the night or in general. last but not least, though, i do know that sweaty palms aren't an uncommon thing in the general population, so i wouldn't get too worried about it. it may or may not be a part of your ANS issues. hope this helps, melissa

sounds like my fatigue...that i've had to varying degrees/ extremes during all of my years of dysautonomia. i take some meds specifically for this reason though they by no means eliminate the issue. my docs have always attributed it as part of my autonomic dysfunction, as the CFS diagnosis mandates that there are symptoms/ signs not explained by other diagnosis/ illness; for me the fatigue is explained by the dysautonomia. for some with other issues, i.e. sore throat, they may receive a CFS diagnosis b/c autonomic dysfunction wouldn't give reason for a sore throat. and - in general - there are sort of two schools of thought in regard to whether CFS & autonomic dysfunction are mutually exclusive diagnosis. i've written more extensively (and probably more clearly) about this in the past so let me know if you're interested & i'll try to find my posts. all in all though it wouldn't be true to assume that those with a CFS diagnosis have more issues/ struggles with fatigue than those who don't have the diagnosis; though it's not an issue for all, many with various ANS issues struggle with fatigue to varying degrees. i have sleep apnea (thought to be part of my autonomic failure) and while treating it has helped with my sleep quality and - with some recent changes in my treatment - my mornings aren't AS rough as previously, i still never feel entirely rested. as others have described, this doesn't mean i'm always sleepy (though sometimes this is the case) but rather that there is always some level of fatigue. i will also add that my fatigue tends to correspond - to some degree - with my orthostatic intolerance/ hypotension & how well it's controlled/ treated &/or how much i've pushed past my limits in that regard (sitting upright these days, though in previous years it meant standing/ walking). hope this helps, melissa

i took the generic for about a year or so but never took the name brand so can't offer a comparison. sophia i hope the generic does well for you (& that maybe the up all night was a coicidental glitch for you EM)... melissa

for some a combo of a low-dose beta blocker combined with a med intended to raise blood pressure (i.e. midodrine) works best. others find that a med that raises BP indirectly lowers heart rate b/c the body doesn't have as much of a need to compensate for the low BP. hope this helps, melissa

hi dari - i missed your original post when i was in the hospital, but as i'm going back through them just wanted to check in with you to see if you ended up doing the sermon and/or otherwise talking with your congregation. i thought nina/ mightymouse's ideas were great & could envision how you could fit them in with the sermon you were already working on. while certainly not the same situation...largely b/c i wasn't the pastor...i have had less-than-positive experiences (one in particular) at a church wherein i was very involved (leadership positions, music, etc) and my health issues/ limitations were called into question. it was horribly painful and while it was WAY more complicated than my one sentence summary i know how tough it can be to have a place that one would think/ hope to be most supportive become the opposite. i can imagine it is even more so when it is also your place of work. all the best, melissa

linda et al - while it's never a bad idea to ask your doctor about abnormal blood work, i wouldn't worry TOO much about it in the moment. there are a LOT of reasons for elevated liver enzymes, and while it's not something to ignore, more times than not it's not something that is dangerous in the short-term. and it definitely could be part of the pancreatitis issue. i've had high liver enzymes for most of the past two years - ranging from slightly elevated to dangerously so - for various reasons. my reasons have included an adverse reaction to IVIG treatment (this raised my numbers the most dangerously), sepsis (which can wreck havoc on pretty much anything in the body), pancreatitis (in march & in august), & long-term TPN (IV nutrition) use (known for the stress it puts on the liver). the liver can put up with A LOT though, so despite all of my elevations, i actually currently have normal enzyme levels & all in all a healthy liver. i'm not telling you this to keep you from asking your doc about it but just to keep you from stressing about it in the meantime. more times than not elevated liver enzymes are indicative of something going on in the body (& thus the liver's reaction to that something) rather than an isolated problem with the liver itself. but the "something" may or may not be something of great concern. most of the time my high enzymes were simply followed...they really only raised huge alarms when they were over 50 times normal values, but even then they prompted only stopping the suspected instigator of the elevation, additional bloodwork & a watch & wait approach for several weeks wherein if they hadn't started to fall we would have proceeded with a liver biopsy. hope this helps, melissa

thanks for all the cheers/ support! the SSDI wasn't AS huge a crisis as it could have been since my company extended my private insurance until mid-2009, but it's still WONDERFUL to have it over & done with in a positive fashion, if only for my own sanity. pat et al, amazingly enough (for reasons we don't entirely understand!) i'm doing pretty well at the moment (relatively speaking..."well" for me would probably still be considered horrible by many here). i really will get more of an update posted soon...sorry for the delay! melissa (ernie, as a bit of a sidenote, all of my tubes/ wires are actually pretty covered up...relatively speaking. not sure if you saw my pic on the meet the member profile, but i actually had my three things running in/out of me in the pic & without my really trying to cover things up you can't see any of them . for those who pay attention the tubes/ wires/ drainage bags are visable b/c they do all "run out" from under my shirt into the bag on my lap (which holds the machines), but with proper attire much less so than you'd think. though the reclining wheelchair is a bit harder to conceal!)

hello (and welcome to the site...i've been away for a bit so didn't have a chance to welcome you ). i'll be honest that i debated whether or not my answering would be encouraging to you (and your daughter) or not as i'm one of the people who didn't grow out of things and whom i doubt anyone would be hoping to follow the path of medically/ health-wise in terms of my past few years. but bear with me as i think some of my experience during my younger years may still be good for you to hear in regard to your daughter, her love for soccer, etc. though my diagnosis has since changed, i was diagnosed with NCS at 17 after having intermittant problems from the time i was 11. though my health issues were definitely a consideration - to varying degrees at different times - with aggressive & creative treatment as well (as some stubborness on my part) i was all in all still able to be very active for many years. as others have said, there are a large number of teens who outgrow autonomic issues, or at least improve to the point where they are a very minor consideration. of course that would be wonderful if that is the case for your daughter. but whether it is or isn't, with some creativity, proper management, & bumps in the road (i.e. a cold would knock me out in a way that i couldn't just "push through") your daughter very well may be able to stay quite active & engaged in the things that mean the most to her. obviously i can't guarantee this, nor can any doctor, but it definitely isn't out of the question. just as examples, i was able to swim, run, row, & do triathlons competitively for years. i was active in student government, musicals, instrumental & vocal music, mission trips involving construction/ hard manual labor, etc, etc. were there days/ hours that i couldn't do these things? yes. generally when i needed meds adjusted or was fighting an infection of some sort. but all in all, if i got enough rest, had the right meds in my system (generally to raise my BP), & kept my salt & fluid intake VERY high, i was pretty okay for a good long while. i hope that your daughter is able to find the right combo of things - medicine & otherwise - to help her be & do as much as possible. as an aside that you may find interesting, it was explained to me that being very active - for those who can - is actually one way of keeping one's BP up/ preventing syncope. for instance at times i could run for miles but had to be careful when i stopped! something that might be helpful for your daughter such that she may do better walking/ moving around a bit (even if just moving legs) post running during soccer (rather than coming to a dead stop); obviously not a definite but just an idea to throw your way. it's great to hear that she'll be seeing the doc who i've found to be the best with tweaking meds...while i've seen many others over the years he's been my doc since diagnosis. he doesn't have all of the answers &/or magic fixes but he'll do his best to get things to be the best they can be given the situation at hand. and last but not least, your daughter is certainly lucky to have a mom that "gets it". obviously it's not "lucky" that you both have to deal with dysautonomia, but your understanding will mean more to her as she traverses the landscape of ups & downs than you will even realize. so...i do NOT mean to minimize how tough this must be on you (to see your daughter struggle) or on her. not at all. it is hard & to some degree will continue to be. but i did want to let you know that it may be possible for her to stay pretty active. all the best, melissa

awww...thanks for asking mamamorgan i just woke up after crashing from the early outing & was trying to decide whether to post a quick update on the morning or hold off until i get my update from the hospital stay finished for one big update. thanks for making up my mind for me!!! so, in short, it went as well as it could have gone considering that i had to go to the hearing. i was approved within about 30 minutes with no discussion/ interaction other than the judge asking me a handful of questions. in reading her decision she acknowledged that those who previously reviewed my file failed to appreciate the severity of the situation. she didn't even bother to call on the vocational or medical experts nor did she bother with the attorney saying anything as i suppose she realized it wasn't needed. other than the realization that anything can happen when SSDI is concerned, my attorney & i weren't concerned about my being approved currently. we were mostly concerned that there might be an issue with the start date of my disability (aka when i had to stop working). while we knew (& had records to show) that i couldn't work then (starting in dec 2004), b/c i have declined to a point of much more severe illness/ disability we were a bit worried that compared to now i would practically be seen as "healthy" then. this concern was substantiantiated this past spring when i received a pre-hearing offer from SSDI to approve my case beginning in the spring of 2006 (essentially when i had to go on IV nutrition). but in the end the concern wasn't an issue.... the basis of my approval is/ was "autonomic dysfunction so severe that (I) am unable to perform any work". so that's today's update. a HUGE relief to not only have the hearing behind me but to also have the favorable decision in hand. and while getting out was an event as always...i was not feeling well in the least as it was way too early for my body's liking (had to wake up before 7), & reclining wheelchair, IVs, tube feeds all had to be in tow...it was still a dramatic turnaround from exactly a month ago when i was literally fighting for my life (with very little memory of it) in ICU. thanks for all of the thoughts & prayers... melissa

many congrats dawn. i have my hearing on tuesday so hope i'll be joining in the sigh of relief soon myself.... melissa

just a quick hello to let everyone know that i'm back in my own bowl so to speak. i got home late tuesday & the first 24 hours were more than a little exhausting...wrong settings on the breathing machine which meant poor sleep, home care nurse here for almost 3 hours, lots of deliveries, back to doing all my own meds, IVs, tube feeds, dressing changes, etc. but of course good to be home. and had much better sleep last night (machine fixed). today was then filled with trying to get some bills paid & my loads of follow-up appointments made for the upcoming weeks/ months. thanks for the continued good thoughts, wishes, prayers, etc. and yes, i really will get more of an update posted one of these days! melissa

so sorry i haven't gotten back to more of an update. and thank you for all of the continued good thoughts, prayers, wishes, cards, cool pictures, messages, etc. i may sound like a broken record but they really do mean a lot & give me a boost. never a dull moment i suppose. i'm good to go post-port-placement from last weekend, but yikes did it smart for the first 48 hours or so. we then tried various "experiments" of sorts throughout the week, some more successful than others. the positive highlight is that we may have figured out a way for me to be on tube feed (into the middle of my small intestines via my J tube) rather than TPN. it will take a longer time to know for certain whether it will truly work as there are some nutrients i don't seem to be able to readily absorb, but it's something that many of my docs didn't think would ever even be in the realm of possibility so is at least a possible step in the right direction. i still need IVs for fluids/ saline (the experiment to try without that was pretty bad & made for 2 really unpleasant days, but we can't say we didn't try). i will post a more comprehensive update one of these days from the past 3+ weeks, but wanted to at least check in. flop's right that i often read even if not up to posting so i've been spying on & off as able . this morning's excitement included a clogged catheter such that my bladder got PAINFULLY full by the time they believed me & replaced it with a new one (wherein over 2000cc drained immediately...gee, who was right?!) tonight's excitement includes the doc just having come in to tell me i need a blood transfusion. fun fun. hopefully it will happen soon rather than in the middle night. i'm hoping to escape in the next few days but there are a few things i have to pass muster on &/or have happen first so we'll see. love, smiles, & sunshine to all, melissa

thanks folks...longer update isn't happening tonight so thought i'd give a super short update re: some plans in hospital land for tomorrow to ask for specific prayer/ good thoughts. i'm having a port-a-cath put in tomorrow b/c i no longer have any PICC line access possibility (5 tries over 2 hours yesterday but too much scar tissue from the number of lines i've already had...it was not pleasant to say the least and i've been deemed to officially no longer have central line access via my arms). so....prayers/ good thoughts that the surgery gets the access i need for my ongoing nutrition/ hydration/ antibiotic needs would be much appreciated. i have a triple lumen central line in my jugular vein at the moment (neck) but that can't be used for more than a month, and generally not out of a hospital setting. melissa

thank you all so much for all the good thoughts & prayers. i'll try for a more thorough update in the next few days but wanted to at least say hi & let you know i'm up to some computer time a l'hopital. (and to let nina know that she can save her printer ink/ stamps! ) i'm going to start on an update now but not sure if i'll get it written in one swoop so wanted to at least say a great big thank you rather than waiting to finish the lengthier post. love to all from the fighting fishbowl, melissa

morgan, i am SO right with you. i suppose it's a matter of laughing to keep from crying, but i honestly can't even speak to having a lessened sex drive b/c i genuinely don't think i've ever had one? i probably sound nuts, or asexual, or a host of other descriptors, but it's the truth. i can find people attractive, have dated a bit in past years (quite distant past now), theoretically would love to be in place health-wise where dating/ serious relationship/ marriage would be an option, etc. but don't think i've ever really had a sex drive. so heck...maybe i do have one & i just don't know what it is in the first place? who knows. i don't think it has anything to do with meds for me though. i've been on different ones at different times over the years and this issue has never really changed at all. i suppose that b/c i'm not in a relationship it's low on my list of concerns these days, or rather not really on my radar screen, but i can imagine that for those in a relationship it could be really tough. melissa

i would LOVE to have children but realistically don't expect this will be my reality. if by some miracle my health were to improve greatly i still very much doubt that i would ever choose to conceive for several reasons. these are MY reasons which i would never impose on anyone else as our situations are all different. but if i were to improve to the point of even being able to consider caring responsibly for a child, i wouldn't want to risk pregnancy in regard to my own health nor would i want to risk the chance of a genetic connection to my health issues over the years. i'm pretty sure that my docs will all concur on both fronts. i would, however, adopt in a heartbeat if my health were to allow it. realistically, though, i grieve the fact that parenting isn't likely in the cards for me, so i try to vicariously enjoy little ones that i'm lucky enough to have visit at times. melissa

hi cathy - glad that things turned out well in the end. people have varied experiences such that some have no trouble at all & some have severe issues, but all in all autonomic dysfunction should be a consideration with any type of general anesthesia, sedation, etc. by no means should people feel that it's a danger that must be avoided but it's something that can require some different/ addition precautions or protocols, even if just more time to recover, additional monitoring, extra fluids, etc. i've had general anesthesia 4 times & sedation of various types more times than i can now count and have never had anything particularly scary happen but, as others have referenced, generally take longer to come around. knowing this in advance has helped it to be an expectation rather than something that induces panic. i also know that my dysautonomia has been taken into consideration by anesthesiologist in deciding which types of anesthesia are best for my situaion, and the first time i had general the docs had extensive discussion with my autonomic doc in advance. there have been a handful of prior discussions on the forum re: surgery/ anesthesia so you can do a search if you're interested. there are also some articles listed on the main DINET site re: anesthesia in POTS/ OI/ dysautonomia. they are listed toward the top of the following page: http://www.dinet.org/links.htm#anaesthesia hope this helps & that your foot is on its way to feeling much much better (and that you're not hurting too much in the meantime!) melissa

congrats on taking some steps that sound like they'll be great for your body & mind. good luck with the new adjustments; i hope the changes will turn out even better than you could expect! melissa

just wanted to chime in (again) that showers at night (seated) worked well for me in past years as well, i.e. when i was still able to work. though i'd previously been a morning shower gal i "converted" & thus would take my showers just before bed for night. i'd essentially just crash for the night post-shower, perhaps watching a bit of TV or movie before sleeping. melissa