Vanderbilt Cancelled!

[Dizzy Dame]

"UGH!" is the word. I called yesterday to recheck the time of my appointment at Vandy and the nurse told me it has been cancelled! I was supposed to go down on the third, but it's been moved back to the 17th.

I know that's only a two week difference, but I've been so sick lately that turning over in my sleep will send me into a two-hour tachy episode! I can't believe how sick I am. I mean I can't even wash myself at this point, my boyrfriend has to bathe me because I'm too weak. And now I'm looking at at least another two weeks of this ****. I woke up this morning, and for the first time, was dissapointed. I don't want to keep living if this is my life.

I know (at least I tell myself) that things are going to get better, but I'm beginning to wonder. I was doing so well the past few months, and BOOM, I'm sicker than ever before. And I'm kidding myself if I think I can do school in three weeks! If I don't improve fast, I'll have to cancel the semester, which means four months of sitting in bed all day, every day, again.

Okay, I'm done whining, I just needed to vent. Any thoughts, advice, or similar rants are welcome. Thanks for listening

Cheers,

Lauren

[corina]

Lauren,

I'm so sorry that your appointment is cancelled. I can imagine how much you were looking forward to go to vanderbilt. I know (and I think a lot of us know) how it feels to be cancelled at the last minute and it feels sooooo awful.

Have you tried betablockers for the tachy, it's just a thought to try and help you, the bb's helped me a lot.

I really hope these two weeks will go very fast for you, I will be thinking of you (maybe that will help),

Corina

[morgan617]

Sorry you got cancelled. My doctor and I tried to get me in for 3 months and I couldn't even get an appt, so I do understand your frustration.

Try to hang in there and just go one day at a time. I hope you get the help you need when you get there...morgan

[Jacquie802]

Hi, it's good to hear from you, but I'm sorry it was through the bad news that your apptmt was cancelled. When you aren't feeling good 2 weeks literally seems like 2 years. I have read alot of your posts and I know you are going to get through all of this you seem like a really strong person. When dr's reschedule, it's usually when we are feeling our worst. I hope you find some treatment when you get to Vandy, and keep us updated. Hope your feeling better soon.

[DancingLight]

Lauren,

I could have written your exact words...I really hear your frustration and grief. I want to be positive and 'up', but man, it is soooo awful to feel sick every moment of every day. I cannot engage in any activities that I enjoy, even if I am reclining or lying down.

I know two weeks seems like ages...I am sorry that the appt. was cancelled. Were they even going to call you to tell you??? I feel like the 'waiting game' is the hardest part...waiting for the next appt., the next possible answer. The most we can do is try our best to be in the moment...but I'm not so hot at that!

I work every day to keep my hope alive...but I do wonder sometimes if I'm just an idiot! I said to my best friend the other day that I wonder if I'm just hitting my head against a wall every day?! Ya know? And, yet, somehow I get up every day and do it again.

I just wish I knew the right words. I don't know the right words...but I do hear your pain, and I feel it a lot on my end too these days. I hope every day for answers and for better days...b/c, like you, I believe that this is not a 'life'. I believe in making the very best of what we are given, but some days it is so hard. And I hate that people like you and Stacey and Morgan and Ernie and others have had it just so darn bad.

I am very grateful that your boyfriend is so helpful and you have him to help you care for you...I am used to incompetent men who can't figure out how to heat a can of soup in the microwave. They may love me a lot, but when it comes to the caregiving needs...look out!

Many hugs your way...

Emily

[JaneEyre9]

Lauren,

it's so frustrating that they cancelled on you at the last minute. I know the feeling of being frustrated and discouraged. it actually made me feel a lot better to read your post and emily's and to know i'm not alone in my feelings of discouragement. Thanks for just being there and being honest and sharing. i don't know what i'd do without this place.

kristen

[Dizzy Dame]

Thanks for the support guys. Things seem to be getting worse and better. I had an unusual episode last night and my boyfriend had to call 911 again (violent shaking, supine tachy, chest pain), however, the hospital they took me to was very helpful, albeit clueless. The doctor was willing to listen, and they gave me some fluids to make me feel better, and eventually my heartrate went down, and bp went up.

Oh, and Corina, I can't do the beta-blockers because of my brady and hypotension...my body likes to swing like a pendulum so any drugs just do damage on one end or another...I'm too polar right now But thanks for the suggestion.

Again, thanks guys for your support and thoughts. Happy New Year!!!

Cheers,

Lauren

[Guest Julia59]

Hi Lauren,

I wish I had some great words of wisdom for you. Something that might encourage you is that some of these spells seem to come in cycles----and then some of us get a remission of sorts.

But Emily and some others seem to have endless cycles and can't seem to get a rest from it. There are many of us that have the same symptoms but the degree of severity is different. Mine seem relatively minor compared to some of you, but in the beginning I was pretty bad and it didn't take much to have those runs of tachy. Now i'm kind of going through the same thing only it's a little differnt this time. My symptoms suddenly got much worse after exerting myself too much over a period of time. Now I do very little and my symptoms get pretty bad---enough to stay put on the couch---or BED----if I don't listen to my body i'll end up in the ER. The good old hyper adrengic attacks---------(AKA GEORGE).

I'm sorry you can't tolerate beta blockers as this would help you feel more comfortable by lowering your tachy episodes. I'll still get tachy even on the BBs-----they have seen it on the reading when they download my implantable cardiac loop recorder. This stuff can be so confusing----and it can really mess with our minds. So you are definately not alone as a lot of us feel like just throwing in the towel.

I have jumped from doctor to doctor regarding my upper spinal--and lower brain stem compression ----having many tests confirming abnormalities that are so obvious---and some NSG's take it very seriously to the point of saying I need surgery---and some dismiss it altogether---or dimiss it as having anything to do with my symptoms---even if I tell them my legs are having trouble working and can see muscle wasting in my legs. This is where I want to throw in the towel.

We can't give up---we have to keep helping ourselves so we can feel better. I can so understand how frustrated you are as there are so few medical professionals who truly know what they are doing when it comes to dealing with dysautonomia. I'm not usually one to defend the medical community----but I can definately see the challange they have in trying to help us, and also in trying to control these symptoms.

One example-----the Doc tells you a beta blocker will help control one of your symptoms--(the tachycardia)----but your BP is too low to tolerate them---so there is one symptom they can not help you with already. Many people with POTS can't tolerate BBs. I feel VERY fortunate that I can.........

Then you finally get an appointment with the experts---and then it gets cancelled for a later date. TWO WEEKS would seem like an eternity to me.

Hang in there a little while longer-------and just keep yourself hydrated------------V-8 juice has 800mgs of salt------------That and a bowel of high sodium soup with some saltines does the trick.

I hope you feel better soon.

Take care,

Julie :0)

[Ernie]

Hi,

I am sorry you got postponed with 4 days notice. I wonder if they would have told you if you did not call!

I hope you are able to re-schedule the transportation and different accomodation.

[yogini]

That's awful that your appointment got canceled. Two weeks can certainly feel like an eternity when you are waiting for tests, treatment, etc. I've been there. But I am glad that you are making it to Vandy in January. Hopefully they will have some answers for you!

Sorry you are feeling so bad lately. I remember that you have traveled quite a bit, and maybe the that has taken its toll? Sometimes I have a delayed reaction and maybe you will feel better after a little more rest.

In terms of school, that is really hard that you might have to take a semester off. I had to take a few months off of work last year. It was a horrible period for me. But the one good thing was that I got some rest and I slowly started walking, doing Yaz exercises, etc. and was able to build up my strength. Back then I was so anxious to get back to work, but looking back now, I wish I had taken more time off, LOL! So if you do wind up taking time off, maybe you can regain some strength and it will turn out to be something positive...

Anyway, hang in there---happy new year!

[blackbirdsings]

I am sorry to hear about Vanderbilt and you having to wait to go, when you need help days ago. That has got to be very frustrating and upsetting to you. I hope things get better soon and you get some improvement. School...can you take a semester off OR do a class from home via independent study or online, etc? That is how I ended up doing college, and it helped to be able to work from bed on bad days. I got to decide when I would do the work and for how long. The school was understanding if I was sick and needed extensions. That might be a good option, so you at least have something going on and don't have the pressure of having to go to a campus.

My next comment may not be appreciated, but I believe it is important to be honest about medial experiences. I got in at NIH and Vanderbilt a few years ago. I went to NIH first and had a good experience and decided to go to Vanderbilt for a week in house. I had a truly horrible experience, and there is ALOT that went on that was not positive. I did have a very nice nurse on one shift, people were okay to deal with, some were not (you can always request a different nurse-you have that right!). There were things I was not told up front, stuff they wanted me to do to stay in the study that wasn't told to me until after I was admitted. I have multiple food allergies and wasn't able to adhere to their diet and they wouldn't accomendate. I cried most of my stay, was in great physical pain, and they were not willing to work with me or do anything further. I left far worse than I arrived.

I know several others that had bad experiences there, BUT I also know lots of people that have had very positive experiences there. I am aware that from complaints my family made about my stay, etc. that the program has been evaluated and things are supposed to be a bit different now. I hope yours is a very positive visit, try to find out everything before you get there, and don't put all of your hopes into getting all better there. That's not reality though they should be able to help you.

We have since found out my POTS is so different because it is caused by lyme disease and should improve and go away when my lyme disease is completely treated. That wasn't know when I was there, and I presented much differently than the other patients, despite positive tilts and sycope. The other patients on the floor did nothing but stay in bed all day, watch tv and eat. That's not how I am, and it wasn't a good match. I went back to NIH several more times and was very happy with everything there. So if Vanderbilt goes great, hooray! Otherwise, know there are other options out there, and keep your hope going!

Good luck!

[vemee]

Were you scheduled as an outpatient or research inpatient? I go in Feb. as a research patient and am wondering if my appointment might get moved.

[Ernie]

Hi Blackbirdsings,

I had a horrible experience over there. So far, I don't speak out publicly about it because like you I am afraid that people will not like it.

I appreciate that you have the courage the speak up and I wish I was able to do the same.

I can say that I will never go back even if they give me a million dollar.

I hope Lauren that you are one of the lucky who will have a positive experience.

[blackbirdsings]

Hi Ernie,

Thanks for your comment. It would have been nice when I went there that not everybody has a positive experience. I remember talking to you about your time there, and it was worse than mine. I also, wouldn't go back there even if I was paid. If people are even in that area and need medical help, the other two hospitals are wonderful and even know about POTS.

I do hope Lauren has a really good experience there and gets the helps she needs. I just think people should know both sides going into a situation, especially when they already feel bad.

[Dizzy Dame]

Hi guys,

Thanks again for all the support. To answer Blackbird's question, I'm going as an outpatient. I'm nervous about being hospitalized again, so I declined to do the study (my last hospital stay was horrific and I've sort of developed a phobia of hospitals).

I am beginning to improve, I even bathed myself yesterday! I think this recent crash had everything to do with the travel. I had a horrendous plane trip and I suppose this recent bad health was a delayed result. I'm not out of the woods yet by any means but as long as I'm getting slightly better each day I can handle anything.

I hope everyone had a happy New Year!

Cheers,

Lauren

[blackbirdsings]

Lauren,

I am glad to hear you are having small improvements each day. That certainly makes it a little easier on you and a little less stressfull. I hope they continue! Going outpatient should make it easier on you. Some of the tests may still be tough. For me being able to leave places and go to a different environment helps, so hopefully you will do really well. Are you going to have somebody come to all the appointments and testing with you?

I don't know where you are staying while you are there. One of my favorite hotels is in Nashville and has outstanding service. I was so sick and felt so horrible one of the first times I was there. Their room serivce goes 24/7 and was great about fixing me special meals, since I was on a limited diet for several days. If you need info on the hotel let me know. Good luck and let us all know how it goes! I so hope they find something to help you :-)

[Dizzy Dame]

Blackbird,

Yes, I'd love the name of that hotel you like. Is it expensive? Is it close to the University?

Thanks so much,

Lauren

[blackbirdsings]

Hi, I just sent you a PM with the name of two really good hotels. They are located in West End and MEGA close to the hospital-within five minutes. One of the hotels is across the street from the campus. The other hotel is even closer...think a block or two down the street, and you can see the hospital from the back part of the hotel. I also included two names of other hotels that might be a good alternative.

The first two are top notch, so they can be pricy, but are worth it, and with AAA the room rates can actually be really low. Let me know if you have other questions!

[DancingLight]

hey, we have our own travel agent on board! i like it! it makes such a difference to have tips on places to stay and not have to figure that all out on your own...

emily