The Vanderbilt Chronicles

[Sunfish]

Hi all ?

I?ve been working on & am finally posting my ?back from Vanderbilt? report. I don?t know how with the lengthiness, but feel free to ask if you have any other questions or if anything needs clarification. If you don?t want the pre-Vanderbilt lead-in (I added it per Emily?s request so she gets the blame...hehe), skip to the ?Vanderbilt here I come? heading. I cannot believe I wrote so much! Anyone who tackles any or all of it should get an award, but it will give you a true picture of the entire visit?and then some?

melissa

Where I'd been...

Two years ago I filled out paperwork to send to Vanderbilt but never sent it. I likely would have gotten in then too but for me I wasn?t ready to do the cross-country inpatient gig as I was holding down a job, albeit somewhat creatively, and hanging in there okay symptom-wise. Things were not great but I was holding steady. Without going into the detail of my up & down history (literally & figuratively), I was originally diagnosed with NCS in 1997 with POTS added during a major crash in 2002 that all but kept me out of my last semester of school (I managed by writing papers via laptop). I even had a year plus at one point where I was off meds. In 2003 I had a cervical fusion due to injury from a black-out & subsequent fall down a flight of stairs (in 2002). Amazingly last summer I was pretty good on meds & as long as I didn?t have to stand for long was pleased with my progress. I was running & swimming & playing rec softball ? even in heat ? and doing pretty darn okay?better than in years?in July Dr. Grubb ?released? me with a ?call if you need to? which was not my typical every 6 months gig. I was pretty psyched. I had a crash in Aug when I caught a bug but rebounded decently after and again did well until November. Over the years I?ve tried various combos of Florinef, salt pills, K-Dur (potassium) & Toprol; most recently (pre-Vanderbilt) midodrine, concerta, lexapro & birth control (to skip periods) with compression hose, fluids, &salt (in addition to various allergy & GI meds).

And then the **** hit the fan?

Literally and figuratively. Early in the fall I started noticing a bit of blood when I went to the bathroom but didn?t think much of it?I figured it was some hemorrhoids/irritation from constipation as I?d had that a few years back so tried a few things that had helped then but to no avail. It was increasing a bit and was a bit painful; I tried for an appointment with my GI doc but couldn?t get one until the end of January. In early Nov I had a regular ?well woman? GYN visit with my primary & mentioned it to her. She looked and saw a few fissures (aka cuts) which she said was a bit odd but was not concerned; it explained the blood & while I needed to see my GI it was nothing to be worried about in the meantime. Two weeks later I went to the bathroom and was pretty taken aback when the toilet was filled with blood. Sorry for the graphics, but there?s no nice way to say it. While I generally must be dragged to a hospital it didn?t take much convincing so off I went, leaving my office while shouting something to the office manager, thankful I was wearing black pants & determined to drive myself. Within 48 hours I received a Dx of Ulcerative Colitis with the bonus of an atypical ovarian cyst. Yippee. Oddly enough I was pleased to have something ?normal? as opposed to my typical autonomic craziness. Is that nuts or what? But of course the dehydration & blood loss & colonoscopy prep and whatnot wacked my system out enough that I also started passing out. And kept doing so even once I was allowed to eat & drink. So I was sent to the telemetry unit, my midodrine was upped & my body allowed to settle for a few days and I thought the fun was over. Little did I know?

Treading water?trying to get back on track...

I had appetite issues & things that I could file under the ulcerative colitis quite nicely, but overall felt pretty wiped out. The holidays allowed me to take it easier work-wise and I already had a long break home for Christmas scheduled which allowed me to rest more. My appetite wasn?t much & I didn?t gain back the 10 pounds I?d lost, but I was holding steady with the help of some Boosts. Then a few days after Christmas I actually threw up. It happened several times over the next few days & during my lunch break on my first day back at work on the 30th ? after not keeping anything down all day ? I blacked out & woke up in the ambulance.

Or not?more than just the HR/BP start to rebel...

Back to the hospital I went, this time admitted b/c I couldn?t even manage to keep down a sip of fluid. And that?s how it went for a few days. The dietician started talking to me about feeding tubes and TPN. I couldn?t even keep down the Boosts/Ensures. And then I started feeling ?pregnant??not really but rather my belly was expanding & I realized I hadn?t gone to the bathroom in a bit despite being pumped with fluids. And thus the discovery that my bladder had decided to shut down too. When I was cathed I was told that if it was more than 600cc it had to stay in; I had over 2200cc in my bladder and couldn?t go at all on my own. After several trials over the next few days I was discharged with a foley cath and a leg bag. Fun fun fun. But at least I was keeping down some food, albeit negligible, and Boost Breezes. I still couldn?t handle regular Boosts/Ensures. But my primary doc knew I needed to get out of the hospital if at all possible for everyone?s sanity & b/c they weren?t really helping anything.

The indwelling catheter was replaced with my learning to cath myself after various trials & testing confirmed my no-longer-working-too-great bladder (neurogenic bladder) within a month or so. I never thought I?d be excited about cathing myself, but I was/am after having the foley & leg bag for almost a month!! I kept myself from passing out largely by not staying up for too long as my HR & BP were pretty moody, particularly high HR. I had more autonomic testing done locally that confirmed things we already knew but also gave me the Autonomic Neuropathy diagnosis. My GI situation was still pretty alarming & my weight was continuing to go down b/c I was throwing up at least every few days with no appetite & lots of nausea & discomfort. And I had to stop the Reglan as it was starting to cause side effects. My primary sent me for a GB scan though & when it was a bit odd sent me to a surgeon who had me get a hyda-scan done which showed that my gallbladder function was pretty minimal (8%). So out came the gallbladder. We didn?t think it would necessarily fix everything but after the initial mess of post-surgery days (major issues with painkillers &/or anesthesia, 5 days in the hospital, etc.) there was an improvement in some of my GI symptoms. I could keep Boosts/Ensures down, a bigger variety (although not amount) of food, and the pain was gone. But I was still throwing up, still loosing weight, & still having overall major motility issues. So?good but not good?and that?s the short version.

Reaching Out?anywhere & everywhere

Dr. Grubb ? my longtime doc ? was out on leave himself, Dr. Calkins at Hopkins told me I was now beyond his scope, & my primary care doc wrote in my records ?we need expert help!? I did appreciate the honesty of all but I still wanted/needed direction! I did have some success with Dr. Khurana in Baltimore but once he knew Vanderbilt was a possibility he also was excited to send me off to the pros He did a lot of testing in the meantime (updated but short tilt, valsalva, deep breathing, sweat test, lots of blood work, etc.) but didn?t want to keep switching meds around only to have them do it again. My GI doc did get me on Zelnorm which after about a month seemed to be helping some?both with upper & lower GI, although not enough to quell. Still, any improvement was exciting. I?d been out of work on disability since the new years? hospital stay so I was up for anything. So many of my docs agreed that things all were connected to the autonomic problems and yet no one person was able to truly connect everything.

Vanderbilt?here I come

After sending my records and filling our some of their paperwork, I was tentatively accepted into a 2-wk inpatient study at Vanderbilt via a phone call in mid-March. The ?tentative? was due to the fact that it would not be official until I was actually there & able to pass the study protocol criteria in person. Thus I would be admitted under my own health insurance for 24-36 hours and then, upon qualifying, would be switched to a research patient. This was by far the most nerve-wracking element of the ordeal; as I?ve mentioned previously I was pretty darn terrified of being ?kicked out? right away. I traveled to Nashville on May 5th & met my mother there as I was okay to travel myself with the help of a wheelchair as I was still on my meds. And then I had to wean off my meds; I had to do this earlier for testing with Dr. Khurana so we knew it wouldn?t be pretty. Those few days are honestly a blur; I think a combo of no meds in addition to withdrawal from some of them, as I was actually better after several days than during the first two, particularly cognitively. I hibernated in the hotel room while mom kept me hydrated & fed the best she could & explored Nashville a bit on foot. My poor mom ? I actually gave her a blank mother?s day card b/c I couldn?t write in it. (I?d had the foresight to buy them super early but then failed to take the next step, so Grandma, Nana & the Aunts never even got theirs. So much for my advanced planning And then on Monday May 9th it was off to Vanderbilt. The actual admission was a bit crazy as we had to go through the regular/main hospital & waited quite awhile; if there hadn?t been a recliner in the lobby I would have been in trouble. But eventually they wheeled me away, through lots of tunnels & whatnot, to the Clinical Research Center, which is in a different building, actually the original Vanderbilt Hospital of many years ago. And my worries about getting kicked out. I had no doubt that my HR/BP would qualify me but was worried about the catecholamine level requirement; if only I?d know that it wasn?t really a requirement b/c the test results take weeks to come back! I wouldn?t have been nearly as concerned. Regardless though I was an overachiever & my HR qualified me in less than 24 hours?not the best thing to excel at but oh well. So then I knew I was there for the long haul with a scheduled discharge date of May 21st, just under 2 weeks total.

Life at the Vanderbilt CRC (Clinical Research Center)

In the beginning:

The first few days included Autonomic Function Testing (Valsalva, Hyperventilation, Cold Pressor, Metronome Breathing & Handgrip) as well as an overnight postural BP/HR study (stay flat from certain time late evening until allowed to get up in morning with lots of particular measurements & blood/urine tests before & after), blood volume study, urine collections (24hrs), and pretty regular orthostatic BP/HR readings?done correctly! It was great to be somewhere where people ?got it? without much explanation. The resident on rotation at the research center was fairly new so was pretty ?raw? in her autonomic knowledge but was interested in learning; the nurses & other docs were all pretty seasoned & knowledgeable. My primary doc was Dr. Biaggioni ? who was wonderful. He & Dr. Raj & Dr. Robertson alternate months for the Autonomic Dysfunction Center; Dr. Robertson was out-of-town the entire time I was there (too bad...the other docs said he would have liked to talk to me too )but Dr. Raj did my blood volume testing (& delivered my mail one day!) There was another doc ? a fellow ? who was actually a pediatric cardiologist getting his masters in clinical research who did my intake interview & was a great help when we had a bit of an issue with one of the nurses one day (no place is perfect . Bonnie Black, who had been the one I?d talked & emailed with prior to my arrival, is the coordinator on the unit & very helpful, although also very busy as someone else is on leave so she?s pretty much doing the work of two these days. All in all though she?s great and even brought in an ?activity box? with exercise bands, handouts, magazines, & books (which I?m now helping her to add to!) One additional doc did a ?pain test? ? something solely for research data & nothing to tell any one individual anything but I was happy to help since I was there. There were also several questionnaires/surveys to fill out which were best to do these first few days. They took a bit of time but were nothing too bothersome; I actually found them to be quite interesting.

Food:

The diet was also regulated in order to control test results & not interfere with bloodwork. Officially this meant a ?150 mEq Sodium, 60-80 mEq Potassium, Low Monoamine, Methylxanthine Free Diet? which translated into no bananas, no tomato products, nothing with preservatives, no chocolate, no cheese, & lots more. Sounds fun, eh? The head dietician came to talk to me right away & I was shown the weekly menu & given extra snacks that I was encouraged to eat b/c of my weight loss/GI issues, but this wasn?t the norm (as it didn?t occur with my roommate). Largely there weren?t menu choices like one usually has in the hospital although there was an alternative menu that had several things you could always request as substitutions for the standard fare. Overall the food was decent ? some quite good - although for someone who is used to a high-salt diet I missed the salt shaker. The odd thing was that some of the foods were quite salty; it?s just that they put the salt on what they felt inclined to put the salt on! There?s a lengthy list of ?not allowed? foods & in general you?re not allowed to eat anything other than what they give you. If there?s something you want though that isn?t on the ?no? list you can get it approved, which I did for some Ben & Jerry?s sorbet when we found that (at the adjoining Children?s Hospital). The food service folk were great though & even started bringing my mom trays! The amount of food was a lot for me & I got sick several times, but everyone tried to work with things the best we could.

Med Trials:

The only meds I was allowed while there were Flonase (nasal spray for allergies) & Levlite (birth control, although I take it to regulate wacky BP changes I get with my period). About 3 days into my stay the ?Med Trials? started, which was the primary study I was accepted for, and these continued on a daily basis for the next 8 days or so. They brought with them their own routine which consisted of the following:

6:30am ? wake up, bathroom, weight & breakfast (b/c had to eat 2hrs prior to start of study); IV in on days that required blood draws (about half of the days, grouped in twos).

Then it was naptime/ back to sleep for me on most days until trial time?

8:45ish ? start medication trial. This consisted of sitting still in a chair, feet on the floor with a BP/HR cuff on. I could (in theory) read, write, talk a bit, etc as long as nothing eliciting too much exertion/ changes in HR/BP. The trial was as follows:

30min ? Seated Baseline; HR/BP every 10min

10min ? Standing Baseline; HR/BP at 1, 3, 5 & 10min (if able)

**Med administered**

60min ? Seated post-med; HR/BP every10 min

10min ? Standing 1hr post-med; HR/BP at 1, 3, 5 & 10min

50min ? Seated; HR/BP every 10min

10min ? Standing 2hr post-med; HR/BP at 1, 3, 5 & 10min

50min ? Seated; HR/BP every 10min

10min ? Standing 3hr post-med; HR/BP at 1, 3, 5 & 10min

50min ? Seated; HR/BP every 10min

10min ? Standing 4hr post-med; HR/BP at 1, 3, 5 & 10min

Fini?time to lay down?get some fluids?eat lunch(about 2pm)

You?re not allowed to eat or drink during the studies (unless water is part of the ?med? being administered). And there?s no getting up unless absolutely necessary (i.e. to desperately go to the bathroom?I had to once). In terms of the 10min stands, they are sometimes stopped earlier depending on one?s vitals; if you?re really not feeling well you?re supposed to tell the nurse if possible so she can take your vital right then before you sit, but if you don?t think you can wait they say to sit. I blacked out on them once & came pretty close one other time. The trial meds are from a pretty big list that you see ahead of time but obviously you don?t know what you?re getting on a given day, with a few exceptions. One of the tests is just 16oz of water (quickly) as the ?med? which is obviously known; it didn?t do me much good but had the advantage of only being about a 3hr hour study (as opposed to the typical almost 5hr study). There?s also a day wherein you don?t take anything (which you know) but still do the same routine, and sometimes a day with a placebo (which you don?t know as you actually do take a pill). There are rating forms to fill out each day either during or after the med trials to rate symptoms & add any additional comments although they?re not turned in until the trials are all over. The tests were rough on me as I was really tachycardic on most days just from sitting, much less from standing. But everyone there ?got it? and cared and realized how un-fun it all was which helped a lot.

On most days you?re then ?free? to do as you please in the afternoons, including leaving if you?re able. I can?t do much off meds so was fairly limited, but on days that I felt better my mom & I (in a wheelchair) took mini ?field trips? just within the hospital?.outside when it wasn?t too warm, to the gift shop & to the children?s hospital (it?s new & beautiful with gardens, a resource center, chapel, artwork, etc)?you simply have to tell you?re nurse that you?re leaving, although if you?re going to leave the Vanderbilt campus you need to get a pass from Bonnie. When my Dad came for the weekend & had a rental car he took us for a drive around the city but we couldn?t fit the wheelchair in the car so it was only a car-tour. There were some days when going out just wasn?t an option for me but it was good to get some fresh air when possible.

Misc.

The resident was in to see me every day, and Dr. B, Bonnie, & a dietician on most days. I had most of my nurses for at least several nights/days which was good for continuity & I really liked most all of them. It was great being in an environment where people were explaining things to me as opposed to the other way around for once?a first for me in a hospital setting. The floor was quite quiet and other than early morning wake-ups I was left alone from right before bedtime (if they hadn?t come yet for my pre-bed orthostatics & I was ready to sleep I could call them so I wouldn?t have to wake up again) until the early morn. There were no more than 6 people on the entire unit at once the whole time I was there and only one or two other autonomic patients. I only met the roommate I had the first 3 days and a young kid (about 12) who was there for a one night study (not autonomic). There were lots of outpatients in and out that the nurses were also working with though they weren?t for autonomic studies.

I had some really good discussions with Dr. Biaggioni about symptoms, treatment options, prognosis, etc. and while there are still a lot of things without answers it was still helpful. Even at an autonomic center I didn?t fit in a box exactly?.in other words, how Bonnie put it was that I fit the OI/POTS diagnosis as well as NCS at times (aka when I faint), but also have other elements that generally are part of a PAF constellation. What can I say; I?m unique. (Interject?a funny Dr. B story. The first time my mom met him, he walked in to find her sorting laundry on my bed as they had a washer/drying on the unit. She was embarrassed and apologizing & he was getting a kick out of it & asked her if he could bring his for her to do to. She was like, sure, I?ll do anything if you?re going to help us out?that?s the least I could do. Of course he didn?t, but it was pretty funny & more so by his cute little smile & rosy cheeks.)

They were fairly interested in my bladder/urology issues and consulted with a urologist who they work with (who specializes in neuro issues & has worked with autonomic patients) but were unable to orchestrate him actually seeing me while I was there. It was not a typical aspect of the study, but they had me keep track of my urine output ? naturally & cathing ? the entire time I was there. In terms of GI issues they didn?t have a lot to offer other than encouraging me to pursue a motility specialist on my own. I was at my lowest weight while there but did manage to at least maintain over the stay rather than keep losing. Although oddly enough, on one of the med trial days I felt much better GI-wise?not nearly as bloated & less nausea. And it ends up that was the day of my best med trial, including a med that often gives people stomach cramps as a side effect. So?the thought it that the side effect may be working to my advantage. Yippee!

I had already okayed them taking blood for DNA/genetic research Dr. Robertson is doing and then they asked my mom too; she okayed it which she gets major props for as she wasn?t too thrilled about the blood draw. Since my dad came in for a long weekend he then gave his as well, and had to give it out of his hand since he?s such a hard draw?how sweet. So both of my parents gave their genetic material to further the cause?thanks mom & dad!

After my realization of how nice it was on one of my ?field trips? to sit at the campus bookstore in the wheelchair as opposed to my typical lying on the floor routine we had the ?wheelchair discussion??something I should have had with a doc long ago probably but wasn?t ready to until now. And so I came home with a prescription for a wheelchair. We talked about how, although hope?s eternal, things aren?t incredibly likely to be completely okay for me again and how I could be worse or improved a year out. The goal and hope, though, was to get meds adjusted to a point where maybe I could at least work towards a bit more of a normal life In my mind that means grad school, which they agreed was a possibility but not a certainty; again nothing new, but from the gurus. Upon my asking, Dr. B was also supportive of my trying a cardiac rehab program.

There was some bloodwork they wanted to send off to Mayo Clinic for me too but ? go Dr. K ? Dr. Khurana had already had me do the exact same thing. I hadn?t gotten any results back yet so didn?t have them in the recent testing records I?d brought with me to Vandy, but Dr. B was impressed when I pulled out the scripts that I?d copied before the tests were done.

Wrapping things up:

The last day and a half we had a lot of the ?closing conversations? about going forward and the trial meds were ?revealed? to me. My official diagnosis remained the same ? Autonomic Neuropathy, Orthostatic Intolerance, Neurogenic Bladder/Retention, & IBS/Slow Motility (gastroparesis & constipation). We discussed the med & treatment options & the last day I was on the meds that were planned for my discharge (in order to try them out up and about a bit ?for real? as opposed to just during a study.) I was discharged on:

NEW Inderal/ Propranolol 10mg TID

NEW Mestinon/ Pyridostigmine 30mg TID

NEW DDAVP .2mg daily (bedtime)

Proamatine/ Midodrine 5-10mg PRN

Zelnorm 6mg BID

Protonix 40mg daily

Clarinex 5mg daily (AM)

Mesalamine (enema) 4g PRN (bedtime)

Levlite daily (evening)

Flonase TID

I was taken off (or rather not put back on) Concerta 54mg daily (AM) & Lexapro 20mg daily (PM) as well as taken off regularly-scheduled Midodrine (at first ? I?ve since been put back on it).

The combination of very-small doses of Inderal (beta-blocker) and Mestinon (cholergenic, usually for myasthenia gravis, increases neurotransmitter transmission) were the best for me from the medication trials. Upon looking at my urine output data it was realized that my body was putting out lots more overnight than during the day; for me this didn?t wake me up b/c of my bladder problems but rather I would be empty upon going to bed (after cathing) and then put out over 1000cc first thing in the early morning (usually about 25-30% on own, the rest cathing). This isn?t normal, isn?t too great on my bladder, and could be part of why I?m so horribly ?washed out? in the mornings. Thus the DDAVP (originally for diabetes insipedis) in the evening before bed to help counteract this.

I left with a recommendation for a cardiac rehab program & referral for a wheelchair. And the standard diet orders of high salt & fluids. And encouragement to continue to wear my compression hose as able (I get a rash from them if it?s too warm.) They also gave me a liter of IV fluids before I left to ?pump me up.? And my discharge orders specify that IV fluids are a good thing for me when having a rough time so that I can take it to an urgent care clinic & just hand it over as opposed to having to explain as I?ve had to do many a time. Bonnie also asked me if I?d be interested in coming back for studies in the future and I gave the affirmative.

By the time I left, I?d officially participated in the following studies:

1. Genetic Basis of Autonomic Dysfunction

2. Dopamine Beta-Hydroxylase in Human Cardiovascular Control, Determination of Genotype & Phenotype

3. Screening for Autonomic Dysfunction

4. The Pathophysiology of Orthostatic Intolerance (Total Blood Volume & Psychometric Testing attachments)

5. Treatment of Orthostatic Intolerance

Although my discharge was scheduled for Saturday the 21st I was actually able to leave the evening of the 20th. Seemingly that?s pretty much the norm but for those traveling home the day of discharge they don?t want to kick people out late in the day & expect them to travel. My mom & I were already planning on not leaving until Sunday & had a place to stay so that wasn?t an issue for us. And pumped up & on my new meds, I was ready for a change of scenery. Never mind a salt shaker

And what a change of scenery. During my stay, my mom had been able to move into the Hospital Hospitality House, a place I?d found out about before we headed south but that you can?t make a reservation for in advance. Think Ronald McDonald House for adults. So that?s where we headed back to, via a shuttle from the hospital, and it was REALLY nice. Although it has been in existence for years, the current building is only about a year old, has a beautiful garden out back, & is just so much nicer than a hotel room (or a hospital!), never mind helping with finances & food logistics greatly. There are 10 rooms with up to 20 people total & it is simply a wonderful place. We were there until our flight back to Baltimore on Sunday afternoon which was uneventful. And mom, traveling with me for the first time since I?ve used wheelchairs at the airport, enjoyed the quick way through security!

Moving Forward:

Upon discharge I had been asked to email Bonnie in about a week to check-in regarding the new med regimen, symptoms, etc. After this, and as I?d been getting light-headed & feeling better the times that I added midodrine, it was okayed for me to add that back into my regular med regime. I hate taking more meds, but it makes me feel tons better which is the goal.

There was quite a bit of mess with my records as it ended up a draft was sent to my primary care doc rather than the final copy. It was before the doc had written his discharge summary & had lots of incorrect/incomplete info in it, including saying that I had no follow-up needs! Pretty wild considering we?d been talking wheelchair use, cardiac rehab, staying on disability for an unknown amount of time, etc. Never mind that it had incorrect meds on it. I?m just glad that I found out & was able to persist, with my mom?s help, in getting it straightened out. It was VERY frustrating to say the least and while it has since been corrected, it was not a pleasant end to the stay that otherwise was a good experience. Once it did get straightened out though, including the doc?s summary notes, I was sent a copy to give to whatever docs need/want it, and my disability has been approved (based on it) through at least the end of August. Lessons learned: we shouldn?t have left Tennessee without the final if at all possible & persistence pays

I am heading back to Vandy for outpatient follow-up in early August with both Dr. Biaggioni as well as the urologist I was not able to see when there for the studies, Dr. Milam. Dr. B had already given him my records but he is going to do further neurologic testing. I?ll hopefully stay at the Hospitality House while there. I tried to get in with a motility specialist there too but to no avail until later in the fall, and unfortunately Bonnie/Dr. B don?t have the connection with them to get me in any earlier.

Luckily though I?m doing MUCH better GI-wise. I?ve gained 12+ pounds since my discharge & while a bit of it is probably from the DDAVP, a lot of it is definitely ?real? too. I have a better appetite & don?t get as nauseated. I don?t look like death warmed over at this weight so am thrilled. We?re thinking it?s a combo of the Zelnorm, which had already been helping some & the Mestinon, which can increase stomach contractions (usually an unwelcome side effect for folks but not me!) And then maybe just things getting a bit better on there own over time. I still get really bloated & am not where I was this time last year, but I?m eating real food and have only gotten sick 3 times since being back from Vandy, the best I?ve been since January. It is wonderful to not be living off of Boosts/Ensures.

I?m by no means where I want to be but am doing better right now than I have been all year. The new med combo seems to be a good thing but of course being able to eat without getting so sick helps too. I just started the Cardiac Rehab last week which was pretty discouraging/frustrating as I could hardly do 10 ?easy? minutes on the recumbent bike & had to lay down on the floor afterward. It?s great to not have my HR up in the triple digits as soon as I sit up & continuing up as I continue to sit or try to stand. My tolerance for standing isn?t tons better b/c although my HR doesn?t get as high my BP drops, but my tolerance for sitting is TONS better. And I have my fitting for the wheelchair this coming week (delayed b/c of insurance craziness) but in the meantime have gotten over myself enough to use a wheelchair at the mall & at Walmart with much success. I?m not a huge shopper but it was so nice to be able to go without getting so ill, having to sit or lay on the floor, and being totally wiped for the rest of the day afterward. So as tough as it is I?m really glad I finally got rid of the pride & ego?or at least quelled them a bit

I?ve continued to stay in touch with Bonnie (from Vanderbilt) via email and am currently ?making the rounds? with all my docs here as I?m looking toward moving back to the Midwest in the next month and a half or so. One bummer about being on the beta blocker now is having to stop my allergy shots?just too risky after discussion with the allergist; I?m hoping to hold onto the positive effect they?ve given me allergy-wise for at least a few seasons!

Dr. Khurana had referred me to an endocrinologist here in Baltimore that some of his patients have had some luck with & whom I couldn?t get in with until post-Vanderbilt. When I asked Dr. B at Vandy what he thought he pretty much said why not, so I?ve since had testing there & found I have some issues with my pituitary gland communicating with my adrenals to release cortisol appropriately. That?s another topic for another time, but the fun continues?maybe another piece of the puzzle. But also another med

[mom4cem]

Hi Sunfish,

Wow you certainly have been through the wringer but sounds like you came out ahead at least with feeling a bit stable. Glad to hear the new meds seem to be working well and that the trip was worth it for you as well as the Drs/nurses being understanding, except of course, there is always one or two who are the exception.

It certainly gives hope that there is help out there.

[Ernie]

Hi Sunfish,

Thanks for sharing your experience. You certainly have a writing talent. I wish I could write as well as you do.

I am glad that they found medication that helps you and that they suggested other specialists to follow-up.

I am presently seeing an endocrinologist in my hometown hoping that he will be able to help me improve further. If you want I can keep you posted on what he finds.

Ernie

[morgan617]

Wow, I'm glad I didn't get accepted, because I never could have remembered all that stuff! I'm glad it was a good experience for you overall, and am glad you are doing better! Thanks for the report. morgan

[funnyfrog]

Hi Melissa - Thank you so much for sharing your experiences at Vanderbilt with all of us - I have been waiting for your post and am impressed with how clearly you write and remember so many details - I am glad that you have started feeling better since you have been home also. Have a great rest of your weekend, I enjoyed reading your story! Beth

[Roselover]

Sunfish,

Thank you for taking the time to write all of this out! I read the whole thing!!! I'll have my husband read it too because we are trying to decide what to pursue for further help. I'd applied to Mayo and Dr. Low but was rejected because of the number of people who want to be seen. My docs are making calls to make sure they can't get me in, but Vanderbilt was someplace else we have seriously considered and I even have the application for the inpatient study that I've considered sending in. It was really helpful to get such a consise rundown of how it wen for you. Thank you!

~Roselover

[DancingLight]

Sunfish!

Ah-ha! I have met my match in verbosity! (look out Ernie!). I hope I'm giving you a laugh, which I'm sure I am...

Anyway, I am so grateful you posted your story, it's worth taking the time to read and well-written.

I had to print it to read it, b/c I cannot read the computer screen that long...and my mom says to me, 'What are you printing? A book?'...I said 'yes, Sunfish's Vandy story!' She got a good laugh.

So, needless to say, I just got my nap, and will read the thing in full tonight.

Thanks!

Emily

[corina]

Hey Emily, that's a good idea. I started on this but I can't make it, but I'm very interested Sunfish, so I'm following Emily's advice and print it. That gives me something to read when I wake up during the night!!! No, to be serious, I can read it in parts, which is easier for me, also I can read back to see if I'm understanding things right (I sometimes have trouble with that, because of brainfog or because of the language). So thanks in advance for sharing your story Sunfish!

Corina

[Ernie]

Hi Emily,

We must be connected somehow because as I was reading Sunfish's chronicles I was thinking how the two of you write similarly! That's fine with me because now I will have 2 teachers!

Ernie

[DancingLight]

Ernie,

thank you so much for that smile! i needed that!

sunfish and i are both a bit goofy...look out!

emily

[sally]

Thank you for sharing your story.

Your insight and effort will help many. You are to be commended on your participation in these studies especially while feeling so poorly. I read that you were dx'd with UC, our daughter also has UC. They finally found a medication that seems to be working well. They put her on Imuran & asacol after a very frightening and severe bout that landed her in the hospital for about 19 days and 20 pounds to the negative. It was a very scary time that lasted over 7 plus months they gave her that lovely drug called prednisone! It took about a year or so for her to get back to somewhat a normal state. Hopefully you are feeling fine now as well with the ulcerative colitis. Thank you again for sharing your information. Here's a pretty good link for forum for UC patients if you would like..

http://www.helpforibs.com/messageboards/ub...hreads.php?Cat=

[Sunfish]

Thank you for all of your responses! I had this horrible fear that b/c I wrote so very much...much more than I had originally intended...that no one would actually take the time to read it. And of course that would have negated the entire purpose of my sharing to write it all to begin with. So...thank you to all you brave souls who embarked upon the project. I'm glad to hear that it's been helpful to even one person...anyone else is a bonus.

Regarding remembering all the details, I definitely would not have been able to except that I made a point to keep LOTS of notes, even when I could hardly see straight to do so. I'm so very glad that I did.

Regarding my verbosity, yep Emily...I do believe that I'm going to give you a run for your money! I'm glad you're up for the challenge And Ernie, thank you for the compliment; it's been awhile since I've been pinned with the "teacher" title & it made my day too. And to my fellow goofy girl, you gave me a smile too:-)

For those of you printing out...good idea...I couldn't read or write it all myself in one sitting. I was blown away by how long it ended up being; it got me truly thinking about writing that book I say I'm going to write someday. I actually wrote it off-line in Microsoft Word & it was over 8 pages, single-spaced with 11pt font. I impressed even myself!

For those of you considering Vanderbilt, I'd say go for it...there's no harm in the application even if you decide not to go. The application itself can be a decision-maker. I didn't seriously consider Mayo recently due to the way things are set up there logisticly. I did also apply to NIH, which I would have thought to be my "first choice" as it's much closer. I was accepted at NIH but the inpatient study was solely diagnosis-based rather than treatment-based & my admission wouldn't be for at least a year from now; for a few outpatient studies they didn't feel it would be safe to have me off all of my meds as would have been necessary. In short my decisions were narrowed down for me & in the end I think it worked out well. It's nothing against NIH & I know many have had good experiences there, but there are benefits to being somewhere that does both research & otherwise, such as my being connected with other specialists that work with the autonomic folks when I return for my follow-up.

Sally, I'm sorry to hear that your daughter has to deal with the UC. Knowing how miserable I was when mine first went nuts in November I can empathize a bit; for me a week in the hospital & 10lbs down was bad enough so I can hardly imagine the bigger scale of things that your daughter has had to deal with. Luckily mine quelled down relatively quickly & is under control with only an enema...not even daily now. The worst part for me was/is the weird interaction with my super-slow motility; it adds extra confusion for the docs b/c my symptoms aren't the "normal" ones. In fact though we think my UC may be triggered, if not caused, by irritation from my motility problems. Regardless though I'm just thankful that mine is pretty much a non-issue for the time being; I have plenty else keeping me busy! I'm glad to hear that your daughter is doing better. And thanks for the link, too.

Any other questions, feel free to ask.

And again, thanks for reading!

:-)melissa

[DancingLight]

whew! amazing! i cannot imagine going through all of that. you are a trooper! i DID read the whole story, and am so glad that you wrote it. THANK YOU for sharing.

and, bring it on goofy girl...i'm ready to have you give me a run for my money in verbosity!

those studies sound so exhausting. how you ever sat up and stood up for that long and tolerated all of that amazes me. i am grateful that you were able to come home with some new options and good follow-up too.

i'm supposed to be sleeping right now.....

emily

[taylortotmom]

Thank you for being so thorough. I have been seriously considering Vanderbuilt but was afraid of a negative experience- you have reassurred me.

Carmen

[Sunfish]

you're welcome:-) like i said, i'm just glad some folks had the fortitude to read through my book! as for how i sat & stood so much i have no clue how i managed myself, other than super-supportive folks there & holding onto the fact that i was hoping to benefit in some way from being there...my body definitely didn't like the process ordeal & i was quite unhappy physically during much of the testing (with the data to prove it!) but i got into the routine & came out okay on the other end...

glad that my ramblings were helpful,

:-)melissa

[Roselover]

Sunfish,

Your journal motivated me to send in my application for the inpatient clinic. I did the measurements for the BP/HR and today at 8 min standing I began to sweat and felt nauseous and very close to passing out, so I measured my BP and it was 64/50 with HR 93... this is on atenolol. Think I will qualify????

Thanks for giving us so much info. I really really appreciate it! I'll let you know if I end up heading to TN too.

~Roselover

[Sunfish]

Hi Rose -

i'm glad that my book was helpful. and congrats on getting the info sent...for me, even if i hadn't gone, there was something to that. just to warn you, they'll soon come asking for your medical records, so you may want to start gathering. i sent them a decent amount...highlights from over the years & pretty much everything from my last crazy year or so...but by no means "everything". that seemed to work well. regarding your readings, i don't think you'd have a problem in terms of them acknowledging that you have an issue, but remember that you have to also qualify for particular studies...i know that the main one i was there for was for POTS (even though i have other diagnosis as well) so it was pretty much based on a dramatic increase in HR upon standing (rather than fall in BP, which i usually have too). i just think it's important to remember that not "qualifying" for a study doesn't mean you don't "qualify" for autonomic craziness...i think that's something i would have had a tough time with had i not been accepted. it's not that i don't think you'll get in, i just thought i'd interject the "research line" as a safety. do let me know how things proceed...if you end up going or being at the point of having to decide we'll have to definitely chat more. the coolest would be if you would be there when i have my outpatient follow-up as i could come & visit you!

:-)melissa

[briarrose]

Your story was well written and very helpful to many I'm sure. It took me a bit to read it all but was well worth it.

It's funny what we endure when forced to. It's horrible that it takes so long to get help from the medical community.

thx for taking the time to write your experience out.

steph

[Roselover]

Sunfish,

Thank you for your input. I think I realized all that in applying, but it is a good reminder. Actually, my BP doesn't usually drop that much and my heart rate does go up 30bpm or more. I was in a drug study last year for mestinon, but it was for pain in fibromyalgia. I've been watching the thread about the mestinon. I have a whole bottle left over from the study and am considering trying it again with my doctors direction of course.

I figured with reading your expereince I wouldn't mind getting on the call list at Vanderbilt in case I do qualify for a study sometime. Thanks for the heads-up about the medical records. I hope we end up there at the same too - it would be fun to meet!!!

Thank you again,

~Roselover

[Sunfish]

oops..i just realized that i never replied to the last few messages...sorry!

steph -

thanks for reading...i'm glad you felt it was worth the read:-) i'm glad it was helpful to others but i think the writing it out was helpful to me as well. and i've since sent it to my parents who have asked me if it's ok for them to pass it on to a few close friends/family...so it was worth the write (and the accompanying sore wrists!) and yes, it certainly is simultaneously funny & horrible what all we put up with from the medical world...

roselover -

that's funny b/c you sound similar to me...the HR up 30 beats as a guarantee & the BP drop as an added bonus at times. at least that's my most consistant profile; it loves to change on a regular basis in every direction imaginable. it was the 30 beat increase that qualified me for the one study in a super-quick fashion; i qualified sitting, much less standing....and to think i was worried about getting sent home!

that's interesting that you were in a study for mestinon for fibro...i hadn't heard of that usage...i think i wrote in the mestinon thread but it was NOT good for me on it's own...only in combo...but obviously we're all different...if you're not doing well now & have a doc's support/back-up i'd say go for it. the good thing is that it's pretty short-acting so even if it's not helpful or even doesn't do well for you it should be out of your system relatively quickly.

have fun gathering your records & let me know if/when you hear anything. i don't know if they "slow down" at all over summer months or not....

:-)melissa

[Lukkychrm42]

Wow that's amazing how much you remembered!

Thanks for posting, I'll find it very useful, because I just got into Vanderbilt, myself. Thaks so much, and I hope you're getting some relief, especially with the UC- it sounds terrible. I'm sorry you have so much to deal with. Good luck with everything, Melissa.

Megan

[Sunfish]

Hi Megan-

Glad to see you back on the board! First, don't give my memory too much credit...I kept notes while I was there & used my discharge paperwork too:-) I'm doing better than before I went, although actually the UC is the least of my problems & has been for awhile now...I have a pretty mild case of it so it was scary at first but is pretty under control. The rest of my body on the other hand...

Second, you said you just got in at Vanderbilt? For research or for the outpatient clinic? Did you talk to Bonnie on the phone? Do you know when you're going to be going? Sorry for all of the questions...I'm just curious?! If you'd rather send me a PM or an email instead of posting that's cool too...I just remember how excited I was when I got in!

:-)melissa

[tinkerbella]

Melissa,

I just got through reading your, "The Vanderbilt Chronicles," and I must say you are one, "super trooper." I'm amazed with all you do!!!! I thought others might like to read or reread this post since there is another post on Vanderbilt Study now.

xxx's

Bellamia~

[Chris]

THANK YOU for the detailed report!! I am set to go into Vanderbilt in 9 days, and your account will help me to know what to expect. I have already had the autonomic function test, blood volume test and sweat test as I am VERY fortunate to live here in the Nashville area. While I do not have it as bad as you, I will be ineterested to know what will help.

Let us know how you're doing, and next time you're at Vandy, let me know -- I'll come and visit!

Chris

[StacyRN]

I want to add my thanks for your thorough account of your experience at Vanderbilt! I have just been scheduled for April 19-30 (this is 2010) for a POTS study. I am very excited about it, but was getting apprehensive, and your account was so good to read so I would know what kind of thing to expect. Thank you again, SO MUCH!!

Stacy