Sunfish

carinara - there is by no means any reason for you (or anyone else who might be reading) to not fly solely b/c of a diagnosis, particularly when you have done so in the past without any problem. while some people with POTS/ dysautonomia have difficulties with flying many others do not. while i haven't flown in awhile now due to the complexity of my current health situation, i flew quite often for many dysautonomia-filled years and the biggest problem i ever had wasn't related to flying or the plane at all but rather involved standing in security lines in the airport itself (a problem that over time led me to having to use a wheelchair within the airport but which, for years, i remedied by having a carry-on roll-on with me at all times which in practice doubled as a portable seat/ stool for me on which to sit). things that everyone should do are all the more important for most of us, i.e. staying well-hydrated, but don't let yourself worry unnecessarily just based on experiences of SOME (not all) others when your own experiences have been largely positive. if you're interested in further thoughts/ discussion a search will bring up a LOT of previous posts/ discussions on the topic wherein the bottom line is that some of us have trouble & some don't at all. and some who have trouble are able to minimize or even prevent said trouble with proper planning such as good hydration, salty snacks, compression hose, etc. while it's not the case for everyone, it's likely that the reason behind some people having difficulty lies more with factors that surround travel than with flying itself; it's often not something that's a conscious decision but flying is often surrounded by other physical stressors ranging from less sleep/ rest than normal (early mornings &/or late nights) to more time on one's feet to skipping meals (&/or eating much differently than the norm) to skimping on hydration and any not to mention all of these things could easily throw anyone's health/ body for a loop. that said, if one pays particular attention to limiting the extent to which these stressors get out of control then "flying" is often much less of a problem. there are certainly still some individuals for whom flying is really rough regardless of how overly conscious they might try to be to limit controllable stressors; who these people are is not at all predictable by specific diagnosis nor by severity of symptoms/ illness b/c, as with much in the land of dysautonomia, many things are very much unique to each individual. hope this helps, and hope that you are able to continue to fly without difficulty, melissa p.s. to lizzy - i don't mean to ignore the original question of your post but don't have much wisdom to add as i've never been lucky enough to go on one myself! generally speaking though i agree with what others have said. it doesn't hurt to ask your doctor of course but i don't see any reason why s/he wouldn't be supportive. as with anything in the land of chronic illness a bit of proper planning will go a long way to save on stress down the road but aside from that the only "issues" that would be wise to plan for (in addition to your typical day-to-day planning) would be the possibility of increased nausea - something that can hit even the healthiest person when away from land, but which might be more likely if its an issue for you already - and warmer temperatures, though i wouldn't be surprised if being on the ocean might be cooler than much of the weather you encounter regularly living where you do. re: the nausea if you think you are more prone you could always talk with your doc about taking meds along "just in case" so that you'd be prepared rather than having to track down the doc on the ship. last but not least, if you haven't already you might want to peruse my reply to carinara above as you might be interested in her question (& my reponse) re: the issue of flying. guess i ended up rambling on after all, eh? hope it helps! melissa

i was prescribed CoQ10 in pretty hefty doses - upwards of 900-1200mg daily (no, not a typo) - when the possibility of my having a mitochondrial disease first surfaced. my dosing was based on blood work showing CoQ10 levels in my blood, something i've since found out from a more expert source (aka top mito doc in the country) is a diagnostic tool that can certainly be helpful as PART of the diagnostic/ prescriptive puzzle but is not always a direct/ concrete indication for specific dosing (something my prescribing doctor at the time, however well-intended, seemed to prescribe to a bit too concretely in his forays with mitochondrial disease suspicion/ diagnosis). so i by no means think that those of you interested in the discussion should necessarily run to your docs asking for blood levels to be drawn b/c, as an independent entity, the resulting info won't be particularly helpful. but with that said i'll get back to my experience(s)..... based on severely deficient blood work i was started on 600mg daily & during a period of about a year topped out at either 900 or 1200mg (memory failing me here with specifics & not relevant enough to matter); at one point i was in fact told to increase my dose even higher - again based on blood work, as the already high dose i had taken for months hadn't seemed to correct my apparent deficiency - but for various reasons (including but not limited to the exorbitant cost as well as my increasing difficulty with keeping any food/ liquid/ meds down) i didn't end up doing so. some of you may be shocked by the high doses i was on but it is not at all uncommon for many of those with suspected or confirmed mitochondrial disease to be placed on similar or even higher doses as part of what's known as the "mito cocktail". at first i thought that the CoQ10 might have been helping me a bit cognitively in a way that could perhaps be described as mental energy, specifically in that i could focus/ read/ pay attention better so that during "better" minutes/ hours/ days i could lay down & read a book, could watch an hour TV show &/or entire movie without repeatedly losing focus &/or falling asleep, etc. i thought this b/c after months of intense struggle in this arena (the final though certainly not only straw in my being forced out of grad school ) about a month after starting the CoQ10 i did see some improvement in this realm. that said, more comprehensive hindsight leaves me relatively sure that the CoQ10 was not the key factor in my improvement but rather it was a result of the fact that i was finally receiving sufficient nutrition & hydration after months of increasing malnutrition (as i started on total IV nutrition & hydration a few weeks prior to starting on the CoQ10); while i obviously can't prove that the CoQ10 didn't support &/or in my body & mind's "recovery" of sorts from its nutritionally deficient/ malnourished/ starved state - there's a chance that it provided a welcome boost - i can say with relative confidence that it wasn't the sole factor in my cognitive improvement. realizing that, in addition with the rest of my meds, the severity & chronicity of my nausea & vomiting (due to gastroparesis & intestinal pseudo-obstruction) i wasn't absorbing the full amount of CoQ10 i'd been taking, once i got my J tube i started taking it that way which in practice was likely the equivalent of increasing my dose (as i had likely not been actually absorbing the dose i'd been taking up until then, at least not on a consistent basis). after doing that for several months, however (wherein i was shelling out even more $$ for hefty doses of the top research-grade liquid CoQ10 than i had already been for the similarly top-grade tablets) i pow-wowed with any/ all of my involved docs (which for various reasons no longer included the doc who had originally prescribed the supplement) and while they had never opposed my trying it nor doubted the possibility of it doing some good, none of them had any issue with my stopping it. with the support of my assorted doctors i did just that (stopped it) and in no way have noticed any negative(s) in doing so. taking it certainly never did me any harm physically, but whether a prescription med, supplement, or anything else for that matter, i prefer not to put things in my body that i'm not convinced to be necessary in some way (be it symptomatic benefit, reliable/ standardized blood work &/or testing, etc).....not to mention that for something that didn't seem to be offering me physical benefit it was certainly taking up a notable chunk of my already tight budget! some time after i stopped taking the CoQ10 i saw one of the top mito specialists in the country/ world - my initial prescribing doc was a neuro who mostly works in the realm of dysautonomia but who has some interest/ knowledge in mito disease as well (perhaps one of those "knows just enough to be dangerous" scenerios?! ) - and my initial appointment/ evaluation with this "top doc" did include a brief discussion of my trial(s) with CoQ10. without delving into the issue too deeply he seemed to think my dosing had been reasonable but also agreed that, without symptomatic improvement on the supplement nor negative symptomatology upon cessation, there was - at least for the time being - no real reason for me to continue to taking it. i have met &/or talked with some who are quite certain that CoQ10 is a key positive factor in their own ongoing regimen &/or that of their child(ren) and i don't doubt that this might be the case in some situations - mitochondrial diagnosis &/or otherwise - as i know that there has been & continues to be some suggestive research in the realm of CoQ10's use within a wide variety of etiologies/ diagnoses. with a good argument i certainly wouldn't be opposed to giving it another try in the future, but i would need a GOOD reason to do so as my experience thus far has proven unconvincing as far as it pertains to at least my own situation. hope this helps, melissa p.s. amongst many/most of those very involved in research &/or prescription of CoQ10 in mito patients (amongst others) it is fairly well agreed upon that not all CoQ10 is created equal &/or in other words not everything you see labeled as such at the grocery/ drug store &/or sold online is what it says it is in the amount that it says it is. while the more highly regarded varieties are a tad bit pricier, in reality ALL CoQ10 is relatively pricey with the argument being that it's much better to spend a tad bit more for a more guaranteed product (rather than spend just a bit "less" of a lot of money & not be as certain of quality &/or quantity/ dosage). this is NOT a push for a certain brand/ manufacturer as there are several that are considered more reliable/ trustworthy amongst the "CoQ10 elite" so to speak but just figured i'd include the info to round out my comments/ experience.

maxine - my mom had her routine colonoscopy a year or two back with no sedation of any sort. she doesn't have any underlying/ chronic health issues but just didn't want to deal with being at all out of it afterward, didn't want to have to wait for a follow-up appt for right-minded discussion with the doc, etc. my dad was the only one who she felt comfortable with having with her post-procedure/ sedation for conversation with the doc so after having to reschedule her appt several times due to my dad having to go out-of-town for work she decided to instead push for skipping the sedation all together so that she could drive herself to & from, have her own conversation with the doc afterward, etc. she doesn't have any underlying GI issues - colon or otherwise - so i don't know if the fact that you do would make it more difficult or even impossible to forgo anesthesia/ sedation &/OR if it would make the "awake & alert" (aka no sedation) approach more uncomfortable/ painful. i've been told that i have a pretty decent pain tolerance & i know that with the colitis i have there's no way i could tolerate a full scope without sedation (& doubt i would find a doc to proceed without sedation for me anyway). also, if i remember correctly my mom was told that if certain abnormalities were found she would have to have the sedation...not sure if that would have been right then & there or if it would have meant coming back for a repeat scope at a later date, but no one could promise her 100% in advance that sedation wouldn't be a must somewhere down the line. that said, she ended up doing just fine without sedation & says - much like those who do have sedation - that the worst part by far was still the prep (though i'm not sure which variety of the prep it was she had). all in all her overall experience didn't seem to be any worse than anyone else who gets scoped and - at least in some regards - it may have been a bit better. of course the whole ordeal is still not the most enjoyable so that, combined with her general aversion to all appointments/ procedures medical, she claims she won't be doing it again any time soon (aka as there's no problematic family or personal history she isn't likely to stay on top of the "recommended schedule") BUT she says that, if there were to be a pressing need, she would definitely go for the no sedation approach again. hope this helps, melissa p.s. since we're in the same geographical area i can find out which doc did her scope if the info would be helpful. just let me know...

hi all - thanks, as always, for your prayers, good thoughts, well-wishes, & other assorted goodies . i'm sorry that i haven't managed to get online with more of an update before now but i'm happy to report that i'm actually making my escape (aka getting discharged) this afternoon. yippee! of course after december's unsuccessful discharge wherein i got home only to get another fever that night & be readmitted the next day has slightly hampered my confidence not only getting home but STAYING there, but in reality i'm doing pretty okay. my fevers this go around, while still infection related, were wonderfully NOT due to an infection in my bloodstream. yippee!!! this while many people may get fevers here & there for an assortment of annoying but not particularly super serious reasons, this is actually the first/ only time in YEARS that i have had any type of fever/ chills wherein i didn't end up having positive blood cultures (sepsis or septic shock) &/or a central line infection, both of which always mean my central line has to be removed & a new one then placed (regardless of whether the line was the original source of the infection). but anyway... this go around, though i was initially started on a plethora of IV antibiotics upon admission due to my symptoms & history, my blood cultures ended up negative so i'm no longer on the IV antibiotics. in one of those good/ bad scenarios - good b/c it's always nice to have an answer, bad b/c it's never good to add diagnoses/ problems - the culprit for this round of fever/ chills ended up being a "C. Diff" infection, the colloquial verbage for Clostridium Difficile Colitis. rather than my rambling on further for anyone interested in more detail it's easy to find decent info on the infection online, but in short some of the risk factors for the infection are recent inpatient hospitalization, use of hard-hitting antibiotics (especially for longer periods), & invasive GI procedures (i.e. tube placements/ changes), all things i "qualify" for per my two weeks in the hospital in december & the IV antibiotics i was then on until the first week of january. in reality it's almost a surprise that i haven't had the infection before (as i've been tested for it many times)..i was actually treated for it based on symptoms only in december (i.e. based on symptoms rather than a positive stool culture) so this bout MAY have been a recurrence rather than a new infection but that's sort of here nor there at this point.... i'm now fever-free & the increased diarrhea (& related incontinance ) & extra/ increased abdominal cramping/ pain has improved, though all but the fever aspect was hard to identify as abnormal when it started b/c IV antibiotics almost always give me nasty diarrhea (as they do many, if not most people) & i live with varying extremes of obstruction-like abdominal pain on a daily basis (due to chronic intestinal pseudo-obstruction) such that i wouldn't notice c.diff related pain in the same way as others might, instead assuming that i was just having a string of bad days related to my chronic issues, something that isn't unusual in the least. thankfully though i didn't/ don't have any of the really serious dangerous complications that can at times accompany c. diff such that the first-line treatment for c. diff, "oral" (for me "oral"= via my j tube) flagyl, has definitely already helped & will likely (& hopefully!) continue to do over the next week that i'll continue to be on it. while it of course stinks to ever have to return to hospital-land, it is of course wonderful to not have had lost the central line that i had placed only a month ago & it's good that we caught the c. diff before it caused more serious problems. and - amongst other things - it is SO nice to be leaving the hospital without having to mess with one or more IV antibiotics on top of my already crazy routine of IVs, tubes, & other assorted equipment. i live in a world of things being relative such that things that are a huge pain to many don't even hit my radar of inconvenience such that an extra crushed pill via my J tube every 8 hours is "nothing". until later, melissa

suzy - studded tires are very different than the common winter tires used by many. ernie - regulations on studded tires vary by state. i'm not sure what your route would be but very quickly i was able to find the following: What are the national developments on studded tires? Much of the research on studded tires comes from Finland and Sweden where studded tire use is heavy in the winter months. U.S. studies concentrate on states like Alaska, where lightweight studs have been advocated, and Minnesota and Michigan where all studs have been banned since the early 1970?s. These studies all agree on one finding: pavement wear and rutting due to studded tire use is substantial and costly. Nationwide, 36 states (including the District of Columbia) allow studded tires but restrict their use seasonally, geographically, or through equipment specifications. Six states (Colorado, Kentucky, New Hampshire, New Mexico, Vermont, and Wyoming) allow virtually unrestricted use of studded tires on state roads and highways. Seven states (Alabama, Florida, Hawaii, Illinois, Louisiana, Mississippi, and Texas) currently prohibit the use of studded tires under any circumstances; however, out of these states only Illinois has significant amount of ice and snow. it sounds a bit random, but it's actually from a site from washington state. the link is http://www.wsdot.wa.gov/winter/studtire.htm. the only state that looks like it "might" be an issue for you would be illinois, though i'm not sure as i don't know the route you would take. while i'm not sure it seems like other states you would need to consider at least have provisions for temporary use/ travellers. hope this helps, melissa

i'll try to get back later with a more thorough answer, but for now wanted to chime in with the quick answer to your medicare/ SSDI question. in short, the way it works (at least for now) is that you qualify to receive medicare 2 yrs after your SSDI benefits begin, which - at the very soonest - is 6 months after your determined disability onset date. so....essentially your medicare will/ can start 2 & a half years after the date determined by the social security folks to be the start/ onset of your disability. in the midst of a complicated situation (don't let anyone try to convince you otherwise ) hope this helps clarify at least one little detail, melissa

as a bit of a convenience factor, i will warn you that you will have a MUCH more difficult time getting provigil approved. so perhaps it would be worth giving others a try before going down that road. it's also a bit of a different animal where others are more similar to one another, which may or may not be a good/ bad thing. over the years i've taken concerta (with a good amount of success....it's was a huge part of how/ why i was able to graduate from college), tried adderall (without much luck....had untolerable & continuing side effects at a small dose wherein i wasn't getting any benefit), & currently use daytrana. it's a patch & without it i wouldn't be able to read hardly at all, would sleep a good deal more than i already do, would be much less likely to ever be able to make it through a movie without falling asleep, etc; it also seems to help a bit with my BP/ OH as it's a vasoconstrictor as well (as are all of the ritalin-derived meds). all three of these meds (concerta, adderall, & daytrana) are in the same family as ritalin but are, in differing ways, extended-release varieties. i never had any problem with concerta affecting my appetite & think that adderall may have affected it a tiny bit physically but not psychologically (i.e. food still sounded good) & that had nothing to do with my stopping taking it. for me the problem was continuous headaches (not usually an issue for me) & an odd visual blurriness that was quite problematic. as for daytrana & its affect on my appetite i can't really comment b/c by the time i started using it i was unable to eat in any sort of normal fashion anyway due to the severity of my motility issues (GP, pseudo-obstruction, etc). i haven't been physically hungry in years but the daytrana has certainly never done anything to diminish my mental/ psychological desire for &/or interest in food, aka if i could eat i would gladly do so (& would most likely soon be expanding rapidly as i would want to make up for lost time....there are SO many things i dream of eating!!!) that said, without trying to minimize the trouble the adderall is causing mack (&, in turn, you), is the decreased appetite something that is truly insurmountable? what would happen if he were to eat anyway? i know that many with a variety of GI &/or other health issues have little to no appetite, either due to meds &/or an underlying condition, such that they have to remind themselves to eat, keep a fairly strict meal schedule, etc. essentially they CAN eat....they're just lacking the signals/ motivation that reminds them to do so such that they have to set up ways to make sure they don't forget. is this what's going on for mack or does he actually get ill if he proceeds to eat in a manner that's more typical for him? i'm only asking b/c if it's a matter of "just" losing the signals/ reminders & since the adderal is helping in other ways (how exciting!!!) then there are ways around the appetite issue. of course if pushing to eat ends up making him feel ill then that's another story altogether. and/or if there is another med option that would eliminate the issue altogether then it certainly seems reasonable to pursue that option. hope this helps, melissa

CONGRATULATIONS!!!!! i wasn't able to chime in before your date since i've been in the hospital most of the past 2 weeks, & shouldn't write much now as i really need to get to sleep, but just saw your post & couldn't sign off without congratulating you on what sounds like a highly successful first date!!! you asked what a woman would think of a guy in his late 30s who hadn't been married. these days that is NOT AT ALL unusual so i am very certain that it is NOTHING to worry about!!! in fact i would tend to think that a woman might think more highly of a guy who hadn't been married than of a guy who had already been in & out of one or more failed marriages (though of course it always depends on the individuals & the situations specifically involved....i am NOT trying to say that women can't &/or wouldn't be interested in divorced guys). regardless of whether it goes anywhere further &/or how far that might be (one additional date or more of a relationship) you can now rest assured that you are dating material. at least for tonight & tomorrow try not to worry about the "what next" & appreciate your enjoyable evening. it sounds like you didn't end up mentioning anything about your health issues & you're right that, at some point, the subject will come up, but for now no need to worry. i'll try to get back & write a more thoughtful post re: when & how to tell in the next day or two but for now simply wanted to congratulate you. i am truly very happy & excited for you....from what you've shared you have truly cleared a hurdle & accomplished something that you should be proud of. congrats!! melissa

hi all- sorry for the delayed post....i seriously thought that i had posted (and sent a PM to the other mods) on wednesday night when i got home but evidently not. very strange, eh? sorry for any undue worry my lack-of-posting/ updating caused. i suppose i can blame whatever i did to goof up my "posting" on the fact that i ended up having heavy sedation (general anesthesia according to some, but no intubation) only several hours prior to my discharge. at the last minute my G tube started causing trouble, or rather escalated in terms of the degree of problems it was causing, & as such needed changing. originally everyone (docs & myself) thought this would be an uncomfortable yet quick bedside procedure that would take no more than 10 minutes, but in the end the type of tube i'd previously had made that approach impossible & it had to be changed endoscopically, which for various reasons requires heavy sedation for me (which, according to the anesthesiologist i had this time, is technically general anesthesia but without intubation; he said that technically the "sedation" i'd had two other times in the past several weeks was also general but that b/c may patients/ families consider general to mean intubation some of the anesthesiologists go along with the family/ patient definitions, despite the fact that, technically, they aren't correct. but anyway....i guess i just found this "battle of definitions" interesting). i use my G tube exclusively for drainage &, without it, i have greatly increased nausea/ vomiting 24/7; an added bonus is that having it is what allows me to "eat" liquids & some soft foods (i.e. ice cream, smooth applesauce) as they drain out of the tube as well. having problems with it wouldn't have been a reason for hospitalization but since i was there the docs were leery to send me home knowing i'd have to get it replaced soon & would be symptomatically much worse in the meantime, and i couldn't have agreed more! but anyway....the procedure delayed my discharge by a few hours but thankfully didn't require another overnight stay so other than my mom having to drive (again) in the dark, something we'd hoped to avoid, we got home around 8pm wednesday evening. i'm on 3 antibiotics - 2 IV & one "oral" (via my J tube) for varying lengths of time (the longest being IV vanco for the MRSA infection through january 5th) & then have to head back for an infectious disease appt in early january (with the doc that i REALLY like). i have home nursing daily too, largely for the wound packing/ care as i do all the abx stuff myself, but the wound is healing well so my nurse thinks it will only need packing for perhaps a week or so more. i'm understandably a bit wiped out, not only from being ill but also "just" from the less-than-ideal sleep one gets in hospital land, but other than that i'm doing light years better than i have been at many times in the past. if i'd been allowed i would have been up for a shower yesterday but b/c of the hickman insertion i'm not allowed to shower until tuesday, though depending on how the open wound is i may or may not have to hold off a bit longer than that. BUT....i was actually okay enough to go get my hair done yesterday, something that was a push & that was motivated more by wanting a great hair wash than anything else. obviously this would have been impossible many/most other times the day after i'd been discharge, so while i've paid for it by being in bed since it was great to get out. otherwise i've pretty much been catching up on rest in between taking care of all the "medical stuff" and the nurse visits but all in all am doing relatively well. and am thankful that we got back before the snow/ storm hit northern ohio. thanks again for all of your prayers & good thoughts....i'm now of course planning on seeing how long i can stay out of the hospital & will try to break my previous record (in recent years) of staying out from may until early december. at the very least i'll hopefully be able to stay away through the rest of the christmas/ holiday season. love to all, melissa

hi all! sorry for yet again not making it online for an update until late, though i will say that i'm much more awake than i was last night at this hour! yesterday i had actually signed on around 10:30pm then fell asleep with my laptop on top of me & didn't wake up until just before 1am, which is when i then wrote my quick little post. in all honesty i'm surprised that it made any sense at all! so...for a bit more of an update.... going back to last monday, they successfully placed my new central line (called a hickman, a type of tunneled catheter) & all was going as well as could be. despite what i had been told up on the floor once in the OR the anesthesiologists decided that they could at least start with deep sedation rather that general anesthesia & it worked like a charm & without problems...yippee! i was then discharged tuesday around 4pm - not a bad birthday gift to escape - & other than localized pain/ soreness from my open wound & the new line placement, i was feeling as "well" as i ever do, had some time of birthday cards/ gifts/ phone calls from friends & families, & got my delivery of my needed medical goodies new & old (antibiotics, saline, TPN/ nutrition, IV pumps, etc). so by the time i was in bed & trying to figure out the new IV pump they'd sent (without directions) so that i could get my antibiotics hooked up, prepare my TPN for the night, & do the other bare minimum before going asleep i understandably blamed the fact that i started feeling cruddy on being exhausted, blamed my nausea/ vomiting flare-up on my gastroparesis, & blamed my being extra chilly on still being dressed for the room i had been sharing with my former roommate (a teeny tiny extra cold old lady). but in hindsight i was getting sick & starting to get the chills (just not violent shaking ones that i have had in the past, so easier to "excuse" in the moment). once i ran my IV antibiotics & got my TPN started i managed to get to sleep though, b/c despite feeling sick i was still tired enough that i was able to have a good night's sleep, but unfortunately when i woke up the next "morning" - really early afternoon - i woke up with a fever & could obviously no longer fool myself that things (me, infection, how i was feeling) were far from where they should have been at anytime, much less just having gotten discharged from the hospital with my infection under control & on pretty much the heaviest hitting antibiotics in the book. so with my home health nurse arriving just about that time (mostly for my wound care/ packing & dressing change) & discovering that in addition to the fever my BP WITH high doses of midodrine on board was 70-something over 40-something lying down, we paged the TPN Management Team in cleveland (who manage my TPN & line care & who arranged my initial admission last week & who i'm supposed to call with any fever, line problem, etc.) we all tried to wait it out for a while & started with the home care nurse doing blood cultures but as the day progressed the fever & associated symptoms started to increase rather than moving in the other (more desired) direction & i/ we were pretty much told to stop using my new IV line & most importantly to get to a local (toledo) ER or get to cleveland for admission ASAP. we made the gamble to head to cleveland, knowing that we were taking a bit of a risk b/c if i had gotten as ill as i have been in the past while we were in the car it would have NOT been good, but with a lot of prayer we were blessed with good weather & my fever/"health" status holding steady & arrived in cleveland without incident. & the wonderful TPN management team folks had already filled in all of my doctors here so that i pretty much had them waiting for me & a bed ready with no need to go through the ER, always a welcome avoidance. i was restarted on an additional antibiotic, they took extra blood cultures, & after an uncomfortable but still NEVER dangerously critical night of fevers, chills & nausea i finally got to sleep around 5am & was THRILLED to wake up (or rather be awakened) a few hours later with NO FEVER....YIPPEE!!! i still felt pretty cruddy that day, if only from the previous 30+ hours of fevers, chills, etc, but it was loads better than the fevers/ chills themselves so the next issue was of course to figure out what had happened. no need to give you the ongoing discussions/ conversations for the last several days but the working theory at this point, though not a definite answer, is that during my first admission the testing/ cultures somehow missed detecting an additional bug somewhere in my body, whether in the same infected area around my port, in my blood, somewhere else, etc. b/c when i was admitted initially (on thursday 12/4) i was started on 2/3 IV antibiotics until the cultures came back (for the most inquiring minds vanco & zosyn, the second of which is actually 2 antibiotics in combination). once the cultures did come back, however, the only one that grew was the MRSA on the port that was removed, & the sensitivity testing done on those cultures showed/ shows that the vanco was fully sufficient for treatment; understandably & expectedly at that point, probably a day or so before i was discharged, they stopped the other antibiotic(s) (the zosyn). but since i got sick not long after, & since when they restarted the zosyn right away when i was readmitted, despite not having "proof" of a specific bug that requires it for treatment the empirical evidence of how my body has responded has the infectious disease docs feeling relatively confident that it's at least part of the picture, & the fact that i had been put on 2 "oral" (via my J tube) antibiotics prior to my initial admission may have been the reason for never pinpointing the bug in the cultures (& while my being on those antibiotics wasn't enough to cure the infection(s) entirely & may have complicated diagnosis &/or treatment, they may have also kept me from getting much more ill & perhaps even been the reason i was able to get to cleveland, avoid the ICU, etc so they weren't all bad). with wednesday evening's & thursday early morning's blood cultures thus far negative -both from the lines & peripherally - things are at this point looking good for my new central line (the hickman) NOT being infected & not needing to be removed, which is of course an EXCELLENT thing, though not entirely certain yet (aka at least for now keep up the prayers & good thoughts rather than switching to celebratory dance ). b/c of the possibility of it having been infected we haven't used the line since wednesday (just before we had to head back to cleveland) so the ultimate "line keeper" test, in addition to the cultures continuing/ finishing as negative is using both ports (sides) of the line successfully, a process that i believe we'll at least being starting tomorrow, probably initially with something less than TPN until we know it's okay to use without incident (aka chills/ fevers). since we haven't been using my central line i've been on a bit of a "diet" as we decided not to beat up my veins &/or additional factors to the already complicated situation by putting in another PICC line, especially since i' just had one taken out. for anyone not dependent on IV nutrition regularly though it's not uncommon to be without much nutrition for several days when ill, so it's not really a concern as long as i'm getting sufficient fluids & electrolytes, which i'm getting plenty of via a simple peripheral line, which is also sufficient for the IV antibiotics for these few days. so....i'll be here at least until monday, & more realistically until tuesday or maybe wednesday? as of now i'd maybe guess wednesday but obviously don't really know as it's contingent on more than one unknown at this point. if all goes well we'll have no problems when we start using my hickman (central line) again at which point they'll work on getting me restarted on TPN & may or may not try to switch the one IV antibiotic (zosyn) to a related but not identical "oral" (again, for me via my J tube) antibiotic, though if they do this i'll have to stay here for at least a day (maybe two?) to make sure that it doesn't cause problems (aka return of fevers); there are pros & cons to both approaches so i'll go with whatever they docs think makes most sense & try to rationalize the advantage of that decision accordingly (i.e. home perhaps a day sooner with more IV antibiotics vs. a day or two more in lock-up but less hassle once i escape). ultimately whatever has to happen to keep me as healthy & infection-free as possible is worth any added inconvenience, so whether i end up at home on only the IV vanco (2hrs every 12 hrs) or that and the IV zosyn (20-30 min every 6 hrs), which makes it hard to get a good night's sleep, i'll be glad to be home, something i may have to remind myself a few times if i end up having set my alarm for middle-of-the-night times for every 6 hrs antibiotics. i digress..... i think that's about it aside from a few other loose ends... 1.the dressing changes with accompanying packing still aren't my favorite part of the day but aren't half as bad as they were initially. 2.b/c of the nasty diarrhea combined with my "normal" GI issues i'm on one other "oral" (J tube) antibiotic, flagyl, to help deal with bacterial overgrowth & balance in my intestines themselves. 3.my roommate before my short-lived escape was a sweet elderly lady but my current roomie is a bit more of, shall we say a challenge? i'll show restraint & leave it at that, but suffice it to say that if i were to write an article on my top ten "challenging" hospital roomies she'd make the cut. ah well....at least i was only feeling real ill for a day or so of the week which is when that's toughest to handle. now it's just a test of my patience i suppose? something like that.... 4. i've had some pretty neat extra conversations with some folks here at the clinic that aren't directly a part of my care team but that have been really beneficial for me, & which may continue to be a good thing. not trying to be cryptic but it's hard to explain without LOTS of detail & for now it's time to move on so perhaps at another time. in a related vein one of my doctors, who was a part of some of these other conversations, encouraged me to get writing on a book so as that's something that's a dream of mine anyway perhaps her encouragement was/ is the extra push i need to get myself writing in a more organized/ purposeful fashion. oh! and how could i forget? one of the benefits of the readmission is that i've had visits from two of my dinet buddies! and even better at times when i've been plenty well enough to really enjoy the visits. friday i had the pleasure of meeting Angelika_23/ Angela (& her hubby) for the first time as she was at the clinic for an appointment (from out of town herself) & saturday i got to see JaneEyre/Kristen, a close friend who lives much closer to the clinic than to Toledo & who, while we've now met/ hung out a handful of times over the years, hadn't seen each other for almost two years now. and while getting to see them was in & of itself wonderful, they were also both extra sweet & thoughtful to bring me different variations of one of the few things i can eat - frozen goodies that can melt & drain out of my G tube - so i've been indulging on Graeter's ice cream & delicious fruity gelato. yummy yummy yummy. we did take pictures so i'll try to get around to posting them one of these days (if they give me the okay of course!) along those lines i should really gather all of my pictures of those i've met from DINET & put them somewhere together....i'll have to count & see if anyone can top me as my home locales have allowed me to meet a good number of people over the years. and...i may be getting another DINET visitor or two in the next few days, especially nice since one downside of being in the hospital lin cleveland is that i miss out on some friends, my pastor, etc that would visit if i were in the hospital locally. but anyway.... but i now REALLY need to get to sleep as this took way longer to write than i had anticipated & IS way longer than i had planned (which i'm sure will not surprise any of you who have known me for more than two seconds ). i figured that more details up front though would eliminate confusion, follow-up questions, etc. ? which isn't to say that if you still have a question that you can't ask b/c you can! and there's been so much activity/noise on the other side of my room until a few minutes ago that even with my deep sleeping i don't think i could have been sleeping anyway. but anywho..... i'll of course stay in touch with updates as i can. while i definitely feel well enough to be online it's still tougher at the hospital than at home so i'm still on a lot less than normal but am trying to get myself a bit caught up on forum posts, PMs, emails, etc. as i'm able many thanks again for your continued prayers, good thoughts, etc & do keep them coming. i'm doing great (in the language of how things are defined in the life of melissa) but there are still some unknowns, things to be figured out, etc. so prayers & good thoughts are certainly not a bad thing! (not that they ever are in my opinion...) along those lines i have of course been glad to hear that miss flop is also heading in the right direction but i'm sure that continued prayers & good thoughts for her continued recovery would not be misdirected either. it's it's quite the mess of a moderating group we have here at the moment, eh?? my goodness! signing off from the antibiotic-ridden (but hopefully NOW infection-free) fishbowl, melissa

so glad to hear that you're well on your way to recovery, that your kidneys are well on their way back from vacation, & that you're at least heading in the right direction in terms of moving around. i'm continuing to send prayers & good thoughts across the pond for continued recovery so that you're soon back to the best you can be! hang in there & stay strong! melissa p.s. i've been in kidney failure twice & have been lucky that my kidneys have been as stubborn as i am & come back with only a bit of residual damage - none that requires treatment - so i'll ask my kidneys to send their positive healing powers & strength to your kidneys!!!

many thanks to all. i'll get on with a bit more thorough reply tomorrow (er....today, i.e. saturday), but for now, despite obviously being abit unpleased (understatement?!) to end up readmitted the day after i was discharged, i'm otherwise doing pretty okey dokey, meaning that the fevers have stayed settled down since yesterday/ thursday morning. thought to be related to my b eing restarted on an addition IV antibiotic. at this point we know i'm here until at least monday & it could be any number of days beyond that (though hopefully not!) since i'm falling asleep while typing i'll save anything else for later but the prayers, good thoughts, etc are of course appreciated. i'll try to get on to post a bit more info soon but wanted folks to at least know that i'm hanging in relatively well. g'night! melissa

hiya folks - for today's update, obviously i haven't had surgery yet (as i would most certainly not be online if that were the case), but i did get word not too long ago that i'm scheduled for 2pm so i'll be carted off sometime in the next hour/ hour & a half or so for the placement of the new line (hickman/ tunneled catheter). for better or for worse the anesthesiology team has decided that they need to use general anesthesia...mostly b/c with any degree of sedation they're less able to control/ monitor my breathing which has at times been an issue due to my apnea &/or who knows what. essentially they've gone through my file so between that & i guess (though i didn't know at the time) some issues during sedation the other day (when the port was removed) they feel that i need to be intubated; it's not a decision i'm thrilled about but at the same time i trust them immensely & thus don't question the decision, but it will mean that recovery will likely be a bit more drawn out in the short term (aka it will take me longer to "perk up" so to speak). for other news the sensitivity testing (aka which antibiotics will kill the bugs best & which specific type of staph it was) has come back on the cultures from my port & while it did end up being MRSA, the vanco is sufficient (& even good) for treatment - good news as i'll only have to mess with one antibiotic at home over the next few weeks rather than two. for other good news the dressing changes/ debridements of my wound aren't nearly as bad as the first day. still not fun, but between our treating with extra IV morphine just before (yea drugs!) & the fact that the wound is much further healing along in the healing process yesterday & today i made it through the process with only making faces & clenching fists rather than the tears & screaming of the first day. so definitely headed in the right direction, and probably not too many days left of it needing to be packed/ debrided at all (after which it will just be a simpler dressing change). so....that's the scoop. the current word is that i'll likely be discharge wednesday, though tomorrow afternoon isn't an impossibility so perhaps i'll get that early birthday present. again, while i'm obviously not thrilled to be here on my b-day, i'm largely just thankful still that we caught/ treated this infection without things elevating to the severity of illness (septic shock, ICU, etc) that i've dealt with in the past, & on i'll hopefully/ likely be able to be at home for christmas which, if i had to choose, would be my preference since that has so much more effect on the family (& on me!)in terms of routines/ traditions & is the one holiday that i've never not been home for, as well as one of the few that i've never been in the hospital for. so...while i'd obviously rather celebrate my b-day at home, don't worry too much about my being locked up for my special day. such is life, i've spent birthdays in l'hopital before & managed fine & will do so again, will at least not be knocked out (i.e. surgery/ anesthesia) tomorrow & will request some birthday spoiling by having my mom make a trip to the cafeteria for a smoothie or milkshake (i can drink liquids as long as they're able to drain out of my G tube), & in some ways will be able to "double up" on the celebrating as i'll have a mini-celebration here (some cards, etc) & then the rest of my birthday whenever i get home. so not all bad. thanks of course for the continued prayers, good thoughts, etc. i s know i sound like a broken record but they are continually appreciated. and for anyone reading this in time you can add extras around 2pm. love to all, melissa

hiya all- thanks for the continued prayers, good thoughts, messages, etc. and thanks for the music links sophia. the hospital wireless/ internet is a bit goofy so it unfortunately blocks a handful of websites, including youtube, facebook, etc; it's the same one used by employees so i suppose it's an effort to keep them on task while at work, though as a patient it is a bit annoying. obviously not a huge deal though & all in all i can get to most places that i need/ want to be, most importantly my email & of course here on DINET . not too much new to update on, which of course isn't particularly surprising since it's the weekend. the one added bit of info is that my port itself did start to grow bugs in the cultures, specifically staph of some sort, so that just affirms further (not that there was any doubt) the fact that it was very good we got the port out when we did. depending on what type of staph it ends up being (which will be known tomorrow as it takes longer for that degree of specificity to be determined) i may still be able to head to the OR for the new line placement tomorrow &/or it may have to wait until tuesday as the ID docs may feel the need to do a few tests to make sure there's no infection hiding out anywhere else in my body (heart, titanium plates in my neck, etc), though my symptoms - or rather lack there of - point toward that being pretty unlikely. if they do feel the need to run those extra tests though the line placement will get pushed back until after they're done, most likely tuesday or perhaps wednesday. and then most likely i'll be able to make my escape the day after the surgery/ line placement, whether it ends up being tomorrow or tuesday or wednesday. so...i'm obviously hoping that it's tomorrow so that my escape can most likely be tuesday, but as i've said previously i trust the treatment team here immensely so whatever they feel has to happen will be met by some of my questions but probably not too much opposition. so that's about it. if i end up having surgery tomorrow (hopefully!) it's pretty unlikely that i'll be online at all but will get on or leave someone a message as i'm able. if it's not tomorrow i'll update with anything new i find out, i.e. when it is going to be, but regardless no worrying if you don't hear from me for a day or two as that's not necessarily an indication that anything's "wrong"....just perhaps that i'm zonked out for a day or so post-surgery, testing, etc. as always, continued thanks for any & all of your prayers, good thoughts, etc. they continue to be much appreciated. and i won't be bashful in asking right out to keep 'em comin! love to all, :-)melissa

miss flop - i'm here hanging in with you in hospital land across the ocean...have my own painful packed wound but i do NOT envy your hip situation (& the accompanying pain). while hospitals here in the US definitely do slow down to a large extent on the weekends as well it sounds like yours do so even more so as i cannot imagine that you & your poor hip are being left as they are for days! you certainly have my prayers, good wishes, hospital-land empathy, gentle hugs, etc. & i hope that the worst of things is soon over for you, that you're being kept as comfortable as possible in the meantime (bring on the drugs!!!), & that you'll soon be back to your good ol' floppy self (without TOO much flopping of course?!...as that seems to be part of how you ended up in your current situation, eh?) and while i know our times-of-day aren't the same, i'll especially think of you monday when i'm headed to the surgery since you should be as well, & will hope that the anesthesia as well as the hip maneuvering is problem-free. too bad we aren't a bit...er, a lot....closer so that we could share a hospital room . but anyway, i feel a bit badly for the rest of our poor moderating gang as we've seemingly managed to upstage anything they're dealing with (which is plenty in & of itself) by landing ourselves in the big H (term borrowed form miss mouse i do believe). i added a note to my own post/ update for everyone to behave (board members) since we moderators do seem to be dropping like flies, so hopefully all will comply . shall we have a race though? try to see who can escape our respective lock-ups first?! it sounds like you may be in for a bit longer of a haul at the moment though hopefully it won't be too long for either of us, & perhaps a bit of competition will urge your body to cooperate sooner . hang in there the best you can & thanks to your sis for keeping us updated. love, hugs, smiles, sunshine, & prayers, melissa, the fishy in hospital-land across the pond

hi all! thanks so much for your prayers, good thoughts, crossed fingers, messages, etc thus far. all are - as always - much appreciated, though if you don't mind i'd rather you not stop quite yet . this is the first i've been able to get on the computer since my admission thursday evening (so sorry for not updating anyone sooner.) here's the current scoop (so that you can tailor your prayers, good thoughts, etc. accordingly!): upon admission i was started immediately on several IV antibiotics (the big guns...vanco & zosyn for particularly curious minds) & then did have surgery friday morning to remove my port as the "pocket" it was in in my chest had become infected. this is different than my previous infections as they didn't start in/ around the lines/ ports but rather started by way of bacterial overgrowth in my intestines which then spread to the lines/ ports after-the-fact. in some ways this infection is a bit more "typical" in the world of line infections, and while the worst of the infection was/ is localized (around the port), the fact that i had a fever & other systemic symptoms earlier in the week is pretty clear indication that it had spread to some degree as well, though obviously no where near to the degree/ severity that i've dealt with in the past. at the moment i'm relatively "status quo", & while sore from the port removal/ infection in many ways i'm actually doing better now than the week before my admission since the infection is on its way to being controlled via the plethora of antibiotics i'm on as well as merely by way of the port being removed. the worst thing i'm dealing with is the daily dressing changes/ wound care as they entail pretty aggressive cleaning/debridement/ packing of the wound (where the port was) which is probably one of the most painful things i've ever encountered though, thankfully, is only once a day & relatively short lived (though that was little comfort for those 20 minutes!). other than the wound care & antibiotics though we're pretty much just waiting on blood cultures which, due to my having already been on two antibiotics several days prior to admission (via J tube), are fairly unlikely to actually show anything definitive. for the time being i have a PICC line - yes the "impossible to place" PICC line! - which they placed while i was "out" during the port removal and, allegedly, it wasn't even too tough for them to place, which is just another testament to the reason that most all of my care is now managed here at the clinic rather than my more local hospitals (as only one of many examples, the last time they tried for a PICC at my local hospital the head of radiology & the head PICC line nurse spent almost 3 hrs & tried 6 or 7 times - unsuccessfully - before i was labeled an "impossible" placement.) while certainly no place is perfect, all in all the clinic is just SO much better able to handle someone with my level of complexity & i feel SO much safer being taken care of here...almost to the extent that i would feel better being left here alone than being in one of my local hospitals with my parents around 24/7. but anyhoo..... the PICC line, as wonderful as it was/ is to be able to get one afterall, is only something they're using as a temporary line for my IV antibiotics, fluids/ electrolytes, & minimal nutrition (as they don't want to "encourage" bacterial growth with infection in the body) until they can ensure that my blood is entirely clear of infection. once my blood cultures are definitively clear, though, & the localized infection/ wound is at least headed in the right direction, i will have surgery again to have a new central IV line placed, probably a hickman, which is a type of tunneled catheter that, for someone on TPN &/or saline pretty much around the clock, is - at least here at the clinic - actually the preferred line type (as opposed to a port). for instance the type of "pocket infection" that put me in the hospital as we speak can't happen with a hickman, & since i'm accessed & infusing almost all the time i'm rarely able to enjoy the advantages that ports bring to many anyway, so those things taken into consideration combined with the extent to which i feel good about & trust the treatment team(s) here i'm totally on board with not getting another port and, if all goes according to plan(s), i should have the hickman placed in the OR on monday. they were able to take out the port under heavy sedation rather than general anesthesia so hopefully the same will be doable for the placement too as that takes SO much less out of me than general (and knocks me out for so much less time). that said i am long over any pride i used to have in terms of showing i was/ am tough enough to have procedures without sedation/ pain meds so whatever they have to do to make sure i'm not feeling the cutting & the like is fine by me!! at that point, if all goes well & the hickman is placed on monday, i may be able (hopefully!) to head home on tuesday & continue the IV antibiotics from home (though i certainly know better than to fully count on a proposed departure date entirely until i am actually wheeling out the door!) doing multiple antibiotics in addition to my "normal" TPN & saline routines is never fun but i've done it more times than i can count & it's far superior to staying in the hospital or any other sort of facility (as i've had to at times when my body has been more severely ravaged by infections.) it's obviously never enjoyable to be fighting infections, have to be in the hospital, have surgery, etc. particularly around the holidays. in addition to the advent/ christmas season my birthday is tuesday. some of you who have been around a bit longer will remember that this isn't the first year i've been in the hospital with infection/ sepsis in early december; this is actually the third year that i've had some sort of sepsis over my birthday but last year i was lucky to be home, while two years ago i was in the hospital as i likely will be this year. ah well. but at the same time i am still INCREDIBLY thankful for the fact that, while certainly sick earlier in the week, we were able to catch & treat this infection without my getting NEARLY ill enough to end up in ICU, on life support, etc which has been the case for me many times in the past. so all in all i'm a thankful & lucky fish who was glad to be able to get my bags packed, have the time to safely get to cleveland by car, & avoid all semblances of EMS, ERs, & ICUs along the way . so, as always, thanks again - so very much - for your prayers, good thoughts, etc thus far & i certainly continue to appreciate & covet them over the next days as well, particularly for the infection to clear up entirely & for the surgery monday morning. due to all the lines i have already had, i have a lot of scar tissue that makes the placement especially difficult. placement is usually about a 30-45 minute procedure/ operation &, as some of you again may remember, my last placement (last january) took over 3 hours, though i am hopefully optimistic that the fact that i'm here at the clinic will, as it did with the PICC line placement, make a difference with the other line placement as well so that it won't be nearly the ordeal/ trauma. love to all. and seeing that we moderators seem to be dropping left & right everyone behave!!! (i thought hospitals here "shut down" to a large extent on the weekends but i cannot believe our poor miss flop is being left with her hip dislocated the entire weekend!!!) i'll be in touch as i'm able... melissa

well, lucky for all of you i don't have the time or the wherewithal at the moment for a long note, so here's the short version: 1-sorry for my being relatively mia the last few days, including following up on some posts that very much demanded & deserved my specific attention (i.e. the work-related post that took a direction i certainly NEVER intended as i NEVER EVER wanted or meant to anything i said to make others feel badly, to keep anyone from posting-most certainly NOT!!!- and/or to come across as bitter?!) but anyway....i'd still like to get back to it in a more thorough manner but have been pretty sick this week & simply not able to be online at all...so for now please accept that no offense was ever in any way meant toward anyone. i was simply trying to use the forum as a safe place to vent in the way so many of us value.... 2-ironically i feel "better" at the moment than i have all week & yet despite much resistance am in the end headed to cleveland clinic - where my TPN (IV nutrition/ hydration) is managed - partially by our choice & partially b/c the local docs (the good ones at least) won't touch me. i should be packing now rather than posting but am a bit overwhelmed so suppose i'm doing a bit of procrastinating?! nonetheless i am obviously not NEAR as ill as many have you have "seen" me in the past, but i have been battling a localized infection in the skin over my port site since early last week & then started this week with some sort of systemic bug that had me with nausea/ vomiting virtually non-stop for 36+hrs earlier in the week, low fevers (for me, i.e.101), increased GI pain, etc. so while the systemic crud in some ways seems to be heading in the right direction, the localized infection is looking worse despite the antibiotics so i'm not allowed to re-access my port which means, since i have no ability for any oral intake & am completely dependent on IV hydration/ nutrition, can only last a short while. 3-so.....on doctors' orders (yes, multiple doctors) we're headed to cleveland clinic with an almost definite admission...whether there's someway to clear up the localized infection & have me on other IVs in the interim or whether i'll need a new central line we're not sure but i've been told to come planning on staying. i'm hoping it won't be yet another hospital birthday but on the other hand am continually grateful to have made it this long out of hospital land & even still away from ICUs. there is internet at the clinic so i'll try to stay in touch but depending on how things proceed i may or may not be well enough to log on. if i'm MIA for too long i'll try to have my mom check in with someone who can touch base. 4-as always, prayers, good thoughts, etc are coveted & much appreciated. the DINET gang has always been great at that so don't fail me now!!! well, not so short after all, eh? i just can't help myself no matter how cruddy i feel & how little time i have, eh? ah well.... love to all from a slightly frustrated yet still thankful fishbowl, melissa

sorry that it's a few days late (says me, realizing that remembering your birthday as just after thanksgiving doesn't work since thanksgiving has a funny way of changing dates from year to year....) but HAPPY (belated) BIRTHDAY just the same!!! i know you have a lot going on these days but hope you were still able to enjoy your day at least a bit. thanks for all you do here on DINET, & just for being the all around great mouse that you are! HAPPY BIRTHDAY!!! :-)melissa

what the heck....i decided to be extra nice so i found my post for you (though i still HIGHLY recommend that you learn to use the search function as it is hugely helpful in tracking down endless info from past posts). here's my original post "the vanderbilt chronicles": http://dinet.ipbhost.com/index.php?showtop...hronicles\ and some follow-up comments i made (mine's the last post in the discussion thread): http://dinet.ipbhost.com/index.php?showtop...hronicles\ here's another post with various folks' comments on vanderbilt:http://dinet.ipbhost.com/index.php?showtop...hronicles\ but there are MANY more so for the full range of discussions so definitely DO A SEARCH!!! hope this helps, melissa

hi ken - i did this as have several other forum members. i've posted to you previously mentioning my experiences as a research patient at vanderbilt. here's what i wrote to you in the earlier post: "for my experience as a research patient several years ago do a search for "vanderbilt chronicles". i wrote a good amount about what it was like to be a patient there. some details of the specific tests might change as the research protocols are different at different times but it will still give you some relevant info. if you have trouble finding it, or other info on vandy that others have posted via a search on "vanderbilt" or "vandy" let us know. for some basic help on searching check out "helpful hints for forum participation" at the top of the forum. (direct link is http://dinet.ipbhost.com/index.php?showtopic=5555). " overall i was glad that i went & had a good experience while there. that does NOT mean that vandy has/ had answers/ solutions to everything so if your expectations are too high you may set yourself up for disappointment. while i have heard people who have had more negative experiences at vanderbilt for the most part over the years i have heard positive things from others who have gone as research patients (&/or as outpatients for that matter). hope this helps...let me me know if you have trouble finding my "vanderbilt chronicles" via the search function... melissa

p.s. due to a particular situation in my life recently that brought some "old junk" back up, i actually just joined a survivors' support forum. i looked through several before deciding which to join (though you can't see most of the discussion on most without in fact joining) & decided on one that seemed to be well-moderated, quite active & well-used, well-secured/ private, etc.). since i'm new there myself i can't particularly recommend it yet but in case you're interested it's called pandora's aquarium & can be found at www.pandys.org. and if you do join & i ever do get around to posting there, i signed up as "sunfish" there as well .

dearest ernie - first & foremost, i am SO SO SORRY. ultimately there is nothing better than that to be said b/c words just don't suffice. i first read your post just after you had entered it, before anyone else had even replied, & had been meaning & wanting to offer my words of support ever since. you're right, though, when you say that it's a hard thing to know the right words. that's no excuse for not saying anything, but true non the less. part of my delay in responding, however, probably had/ has a lot more to do with me & my own history than it did/ does with you. your post brought a lot up for me b/c i have my own history of being sexually assaulted, and while i would never dare to compare experiences, mine too was in a situation where i was faced with continuing to encounter my attackers (yes plural...mine was a gang-rape type situation). they were in fact people in charge of giving me reviews that were directly related to my being able to keep my college scholarship, so also in a position of power over me, so i know how horribly awful that can be. and while i regret it to this day, my fear of losing my scholarship, combined with fearing additional retribution due to threats that had been made, kept me from reporting the crime when it happened. i coped in ways that were less-than-ideal, and while i don't beat myself up for doing my best to survive at the time, i commend you wholeheartedly for doing what you have to report what happened, & will continue to support you to whatever extent you choose to fight, understanding that figuring out the best way to proceed can be a delicate balance in a world that operates in ways that can be ridiculously unjust. while it is obviously only your decision to make, i would encourage you to find a safe way to continue working with the researcher that you have been happy to work with in other ways. while i know that it is easier said that done, & while you obviously want & need to feel safe, i would hate for the jerk (putting it mildly) to take even more from you by cutting off your ties to the research you have been so glad to get your family involved with in the name of learning about & battling the illness that has affected so many in your family. the idea of always having a trusted friend with you - either male or female - is a good one, & while i'm sure it still can't & won't be easy to return to that hospital, perhaps looking at it as a way to stick your strength in the face ofthe injustice might help you to do what many would find impossible. others have already offered a plethera of wonderful words, such that i doubt i can add much that hasn't already been said. but know that my heart goes out to you, & that if you were any closer i'd find my way there to offer a hug & some empathetic tears. b/c to the extent that someone else can know how you feel, i do "get it" at least a bit. i too know what it's like to not be believed, as is the case for more people than anyone likes to realize. for me my unhealthy "coping mechanisms" soon after my assault included a lot of dishonesty, such that when i finally tried to deal with what had really happened many around me, including my family, thought i was lying. while i could/ can easily blame myself for others' not being able to trust me, it was still a terrible position to be in, and one i would never wish on anyone. to this day my parents, despite their support of me in many other ways & their acknowledgment that something did happen, have not "let me" tell them everything that happened to me. i know how rotten it is to be reaching out for help & support as well, i.e. via a group, & hitting dead ends. the difficultly i had in finding good support was truly ridiculous, but i urge you keep pushing & hope that the individual sessions prove to be helpful & healing for you. if the person you are set up with isn't a good fit, though, realize that you deserve to find someone to work with you IS, and keep searching. YOU DESERVE IT. i can also tell you that, years later, i am not consumed by what happened to me. it is & always will be a part of me, but unlike the period of my life just after it happened, when i felt utterly consumed by the terror & humiliation of the event, it is a part of me that occupies a small part of me, one that is easily tucked away on a day-to-day basis. certain things do & will bring it up, whether it be reading/ hearing about another person's experience or being reminded that i still owe tens of thousands of dollars to the organization related to my assault, & there are times when i myself will bring it up if/ when it is relevant to a conversation with a friend/ family member, but 99% of the time it is something that i have control over as opposed to visa versa. so despite how far from that you may be feeling know, how that you CAN & WILL get to that point yourself. it may get worse before it gets better, meaning only that i encourage you to work through the icky stuff rather than simply try to hide it away (b/c that doesn't work...i tried!), but it WILL GET BETTER. i wish that i could do or say something more, & hope that my post doesn't take away from what you're dealing with by bringing up my own history, but i wanted to reply & simply couldn't do so without sharing at least a bit of how much i truly can & do empathize with what you're dealing with. while i obviously cannot substitute for therapeutic support (group, individual, etc), if there is any way i can help &/or if you just want to chat feel free to send me a PM. much love & strength, melissa

i've greatly debated whether or not to post this as it's something i've mentioned/ written in the midst of some past discussions & it has at times been met with some unhappy responses. it's something i need to do though & i'm hoping that by posting it separately it will be more benign in that it will be a general statement & not directed at any one person. i do NOT mean it to be directed to anyone individually but rather as a general FYI to anyone who may not realize how certain phrases/ statements may come across to others in slightly different situations than themselves. so with that mess of a disclaimer .... as someone who is no longer able to work it is very painful for me to continuously read/ hear references on the forum to those who "don't have a choice but to work", "must work", etc. while i do NOT want to minimize the difficult position of those who are pushing beyond pushing to keep working despite health struggles, the phrases that are used often imply that those of us not working made a CHOICE to do so. in reality, at least for some of us, that couldn't be further from the truth. and since the forum is supposed to be a place for support from others who "get it" i had to say something b/c i'm 100% sure that no one means to be hurtful. while i realize that some people's financial situation may allow them to stop working more easily &/or take some time off with hopes of improving health, etc, this is NOT the case for everyone not working. some of us who are not working aren't working b/c it is IMPOSSIBLE. not hard. not terribly difficult. not painful or exhausting or anything else that comes with working despite illness. simply impossible b/c we are way too ill. finances &/or anything else doesn't factor in to the extent that if it meant we would end up in a cardboard box on the street with no clothes, food, or health care we STILL wouldn't be able to work. again i am NOT minimizing the difficulties of working with illness &/or the frustration of wishing one was in a situation that would allow for a different choice. i have been in the position of working when i was in pretty rough shape health-wise, when working meant i could do little else (including taking care of my apartment, fixing myself meals, having any social life, being able to attend church, etc), & when i pushed to get to the office when i "shouldn't" have....throwing up between meetings, lying down under my desk or in my car to make it through the day, using any/ all time off for health-related craziness, etc. it was VERY difficult. and yet i was still light years better then health-wise then than i am now & would love to be at that place again. being FORCED to stop working is horrible & something that a good number of people on the forum have had to face, regardless of circumstances/ finances. for most having to stop work is entirely about declining health rather than in any way related to the financial ability to not work. needing to work to support one's self &/or one's family doesn't make a bit of difference if it is physically impossible for someone to work. so...while my heart does go out to those struggling to work (i have been there & it is INCREDIBLY DIFFICULT), PLEASE don't think that those of us not working are in our current situation out of choice as that's simply not true for the majority of people. many (if not most) of us have had to give up a LOT b/c of our inability to work b/c it was a reality thrust upon us by our ill health rather than something we were able to choose as a convenience. people have lost homes, cars, health care, financial independence, etc. while it is true that i was/am luckier than many in that i had/ have (minimal) long term disability insurance from my former employer, i wouldn't have been able to work one hour longer even if i would have ended up living on the side of the road. there may be a select few on the forum who were/ are able to easily take some time off "for their health" by choice; in an ideal world there would be some sort of medical leave program so that this would be available to everyone, as well as a cushion so that no one would have to worry about bare essentials if health makes working impossible (though that's another topic for another day, & may come close to crossing the line into discussion of political topics.) this doesn't mean that the forum can't be a place for people doing their darndest to keep working to vent about those difficulties....it can be, should be, & is, as that is a VERY tough place to be. but for myself & others who have had to give up that part of our life, either for a period of time or for forever, references to "not having the luxury to stop working," "having no choice but to work" and similar such things can really hurt b/c, for us, being FORCED to stop working was & is far from a choice, a convenience or a luxury. thanks for hearing me out & trying to understand another perspective. i hope & pray that it's one you will never have to live yourself, & thank you for bearing with my post, one which is far from one of my most articulate &/or organized! i wouldn't have posted if this situation was something that was specific to only me and it is NOT directed toward any individual(s) so i FORBID anyone from feeling badly about anything that might have been written in previous posts. my intent was/ is simply to give "the other side of the story" as i'm pretty sure that i'm not the only one who has cringed &/or gotten a bit weepy when posts in any way imply that my not working is/ was in any way related to choice. hugs to all - working or not - as either situation downright stinks when it's being dictated by an uncooperative body, melissa

well....i'm technically an hour & 38 minutes late but this is the first time i've been able to get on the computer since thursday night as i seem to either be fighting a GI bug or a nasty flare-up of my "normal" GI-issues. that's my excuse at least . but....i'm hoping that you had a great day of celebrating, that your health/ body cooperated as much as possible for your special day, that your boys spoiled you a bit & that you felt as surrounded by love & friendship as you truly are. thanks for all you do on DINET & for the wonderful friend you are. i know that i am thankful to have you in my life & am certain that many others feel the same. happy birthday! melissa

well....while i'm sorry that you were feeling particularly cruddy & don't want to minimize that or your concern, for many of us a heart rate of 200 for a short period of time while in the midst of activity &/or with "stressors" on board (no meds, rushed, stressed, low on fluids, etc) would hardly even catch our attention or, for that matter, the attention of the doctors treating us. perhaps a bit hard to believe but true non the less. it's simply part of the territory that comes with POTS/ dysautonomia for a lot of people. chances are you have had a heart rate that high yourself on occasion too, but it was before you had a monitor so weren't aware that it was happening so most likely you just instinctively did what you needed to do to take care of yourself (i.e. sit/ lay down, have something to drink, etc) &, while you knew you had a rough day or period of time, you didn't have something concrete (the high heartrate) to be worried about so in some ways it was less of an issue. if a heart rate that is significantly higher than what is typical for you AND you feel significantly worse than anything that's "normal" for you AND it lasts for an extended period of time in a way that doesn't respond to intervention (taking your regular meds, making sure you're hydrated, lying down, etc), then it's definitely worth mentioning to your doctor at your next visit. if you're especially concerned, if it's something that starts to happen more often, etc & you don't have an appointment in a time that you're comfortable with then it's not unreasonable to call the office for a sooner appointment &/or, depending on how your doctor's office & communication w/ him/her is set up try to talk with your doctor &/or his/ her nurse in the interim. nothing you've said so far gives any indication that it's anything that can't generally be dealt with at an office visit &, even as you explained yourself, you had several stressors that contributed to what happened & how you were feeling so, if i had to make a guess, most doctors (at least those who understand dysautonomia/ POTS) would "treat" you by telling you to do all you can to avoid those triggers. i'm not saying this to sound flippant &/or to minimize how you feel/ felt but rather am just trying to point out to you that even in your post where you expressed concern & asking a question you were, in fact, at the same time giving yourself answer(s) as to why you felt the way you did. only you know your body & how you feel/ felt in regard to when it's time to touch base with your doctor, but sometimes when people get a heart rate &/or blood pressure monitor seeing certain numbers can make something seem like more than it would otherwise be without the accompanying data. if you're wondering about when/ if the ER is something that needs to be considered, that is a decision that ultimately can only be made by you &, ideally, your doctor. many times, though, due to liability concerns, doctors are "required" to send patients even when there is little need; this is even more likely to happen when there is anything happening that is even slightly related to the heart &/or if/ when a patient talks to &/or sees a physician that isn't their standard treating physician, i.e. after-hours or on a day that one's standard treating physician isn't available. over many years of personal experience, hearing from others on DINET & in other venues, i can honestly say that i've never heard of someone not going to the ER when s/he should have but have heard of LOTS of instances of people going when it really wasn't necessary. this doesn't mean that going was/ is always wrong....it can provide reassurance &/or ensure than things really are okay when there's no way to know otherwise, & i would obviously never want to be the one responsible for keeping someone away from an ER trip that is really needed, but truly unnecessary visits are, as many people know, costly in a myriad of ways...physically, emotionally, etc. so while i'm far from someone who is anti-ER - i wouldn't be here today without the life-saving interventions an ER can provide - i do consider myself to be pretty conservative in regard to what dictates a decision to go. getting back to the high heart rate issue, though, and away from my ER soapbox of sorts, how long a higher heart rate lasts, in combination with what one is doing at the time, definitely plays a role in what it does/ doesn't mean. if a person's HR is 200 & that person is climbing multiple flights of stairs the entire time then that is obviously vastly different than if the same person's is sitting in a chair & their heart rate jumps from 80 to 200 for "no reason" & stays at 200 or even gets higher for an extended period & that person has trouble breathing & lays down & the heart rate keeps getting higher & there is chest pain; the second scenario is understandably more concerning. i realize than many/ most scenarios aren't quite as extreme - in either direction - but none the less i'm sure you see the point i'm trying to make. in "real life" things more often fall in a gray area and, as such, aren't quite as clear, but the same logic follows. so.....are there situations when a high heart rate could - in theory - dictate emergency intervention? of course. but, on the balance, in those with POTS/ dysautonomia who, most likely, have had pretty extensive cardiac work-ups in the process of diagnosis and, as such, know that their hearts are, despite all else, quite healthy, it's fairly unlikely, especially if/when the unpleasant signs/symptoms subside with appropriate intervention (sitting or lying down, resting, fluids, getting to an appropriately cooler/ warmer place, taking prescribed meds, having a snack, etc.) i seem to be in a wordy mood of sorts this evening & think that i could have said what i intended in about half the space/ time/ words (or less), but hopefully you'll still be able to figure out what i was/ am trying to get at! i hope it helps you feel at least a bit more at ease. take care & hope this evening finds you feeling better.... melissa