I'm Back From Vanderbilt!

[Roselover]

Hi everyone! I am home from my two weeks at Vanderbilt. I know there are constantly questions here on the forum about visiting Vanderbilt and Mayo and Dr. Grubb. So I thought I'd try to share my expereince for those who want to know more about Vanderbilt.

First of all, I went as a research patient. If you go to their website - I've posted the link here - Vanderbilt - you can dowload an application for acceptance as an inpatient.

In talking to the Director, I was told that she is unable to answer most phone calls of inquiry, but if you mail this application in, you will hear from her in 2-6 weeks.

So, after mailing my application, I received an email inviting me to come as an inpatient. I sent my medical records and we set a date for my arrival and departure.

If you go as an inpatient research patient, anything that falls under their research protocol is free (covered by their grants.) If you require or request tests or treatments that are not within their protocol, they will charge your insurance.

After my two weeks stay, I now see that it's very important that you go with the right expectations. We must understand that they are still learning about us. They don't have magic answers, but they are very interested in understanding our symptoms and very committed to finding things that will help us. I found that their main focus with me was on HR and BP issues. They had little information about the bladder and stomach problems I also have, but were very interested in learning and possibly expanding their research in these directions in the future. I had a great discussion with Dr. Roberston about the stomach problems. They are also just begining to develp research in the area of sleep disturbance.

Their research protocol changes periodically. As they learn and get the grants, they focus on different meds and procedures so someone visiting six months from now, may have a slightly different slant in their prcedures than what I have. They also said they may like to have me come back in a year or two or three as they understand our symptoms can change and their protocol will change.

So... here's what I experienced in this visit.

First of all, they treat you extremely well. They really understand and care about the patients symptoms and comfort. I had a nice private room. I am so glad I brought my computer. They have wireless internet in all the rooms so I was able to keep in contact with my family on a regular basis. There is a strict diet, but the dietician was wonderful. They adapted to my low fiber diet very well. She checked in with me daily to see how the food was and were very willing to make changes as I needed. The food was very good and always hot! (I've never had hot food in a hospital!) The nurses are fantastic and take the time to really know you and I found that they really helped me not feel too lonely! Once a nurse took me on a short walking tour of the building and another time when I was feeling really cooped up, a nurse took me outside for a bit in my wheelchair.

As is normal for me, they had a hard time getting an IV placed. So I ended up with a PICC line. They put it in at the main hospital and were very quick and professional and able to deal with my Lidocaine intolerance.

I had several days that involved different types of autonomic testing, blood volume testing etc. But most of my days were medication trials. On these days, I was awoken at 6:00 for Orthostatic vital signs. (They take your BP lying twice, 5 min. apart. Then you sit with BP and then stand for 5 min if you can.) Then I had breakfast at 6:30 and then I had to wait two hours after I finished breakfast to start the med trials. So these usually started about 9:00, sometimes a little later.

For the med trial I had to sit in a comfortable chair for 30 min and stand for 10min. Anytime I had to stand they were very understanding and supportive of the fact that I might not be able to stand that long. Then I took the medication and for the next four hours, I would sit for an hour and then stand for 10 min. Throughout this whole time they had a machine taking and recording my BP. At the Baseline stand and the 2hr and 4hr stand I filled out a symptom list and rated each symptom. I also kept track of this in my journal along with anything else I was feeling.

After all the med trials, they gave me a list of the meds I had tried and on which day. I was able to compare this to my journal of how I felt and then I discussed these meds with the Doctor. They were willing to send me home with prescriptions for the meds that worked best and I can email for more help if needed in the future.

I had the priveledge of meeting all three of the specialists. I met Dr. Biagionni the second day I was there and there wasn't much he could tell me yet. Dr. Robertson also came by and talking quite a while with me. Mostly I saw Dr. Raj who I liked very much!

This long visit is not a cure all. It did, however, help me understand more specifically what is happening in my body and how I might be able to find a little reduction in my symptoms. I also believe their research and work in understanding dysautomias is going to be very valuable to all of us in the future, so I am glad to have been a part of moving that forward.

If you have questions, I'll try to answer them, but I'm back on dial-up so it might take me some time to get back to you. I am also exhausted from the travel and extremely glad to be home and back with my family!!

Thank you to all of you who wrote to me! I felt so loved! I was told that I won the award for receiving the most mail!!!!!

~Roselover

[AJVDK]

Glad to hear it went well. It sound like you learned alot about whats going with your systoms. I hope that the meds that worked better may help with the systoms. Glad to hear you won for the most mail! It great to get mail in a hospital away from home!

Amy

[mom4cem]

Glad to hear it was a positive experience. Rest up and enjoy being home

[Jacquie802]

"They are also just begining to develp research in the area of sleep disturbance. "

Boy I can't wait until they look into that! I have alot of sleep probs lately with the tachy, palps, etc...Glad you had a positive stay! Hope some of the meds you tried there help you if you end up taking them on a regular basis!

Jacquie

[nadine]

Welcome home and thanks for the post regarding your experience.

[Dizzy Dame]

Glad it went well, and that they found some different treatments for you! Rest up I know how draining those two weeks can be!

Hugs,

Lauren

[DancingLight]

Roselover!

I am so glad to hear you are safe and sound and that, even though you are EXHAUSTED, you were able to post!

I haven't gotten to read it yet, and am heading to bed, but I just HAD to say HIIIIIIIIIIIIIII and welcome home. I am so glad that you are home safe and sound, back with your family, and in your own bed.

Do you realize how very brave you are? You did it! All by yourself! I am so glad that you got so much mail...what a blessing (I'm sorry I wasn't one of those who helped you break the mail record!) Aren't people on this site amazing?

The comment you made about sleep disturbance did catch my eye....and I am going to post a separate topic on it b/c I cannot get Ambien approved b/c they can't seem to 'get' that sleep problems are part of the illness...anyways, that's beside the point.

Thank you so much for checking in with us and letting us know you are home and that you found the trip worthwhile...I will read the details of your 'chronicles' when I get a little more 'focus'!

Take care and rest up...

Love and hugs,

Em

[Roselover]

Oh Em, I know what you mean about the Ambien. My insurance won't give me more than 14 a month!!! Frustrating! But I now alternate it with clonazepam and that is working out great for me. I didn't have any withdrawl symptoms from either one when I stopped them for Vanderbilt. But, my sleep disturbance did come back!

You may not have added to the snail mail count, but all those beautiful e-cards you sent me were very appreciated! I loved getting those from you. You are such a sweetie!

Thank you everyone for your support and welcomes back "home". I'll try to use what I've learned in the things I post in the coming months.

I figured out I was awake for 24 hours yesterday. Can hardly keep my eyes open now.

TTFN

Melanie

[Sophia3]

Roselover

Thanks for the play by play of Vanderbillt.

WOW, my sleep and circadiun rythms are SO OFF, I could NEVER get up so early. W/o meds or with.

I can literally go 36-48 hrs if in a bad insomnia mode. I can't WAIT for Vanderbilt to do a sleep study. I have been in several including a GHB study (Stuff guaranteed to KNOCK ME OUT but didn't and I took it for months, some times it helped, other tiimes, just help pain issues)

Anyway, I have had great success (well, for ME anyway but I am an oddball 'not in the text book case' ) with Klonopin since 1990 (generic clonazepam) and I just need to remember to take it earlier. Now that I am in hormonal city in recent years and perimenopause, the monthly PMS insomnia can make the med work not at all and I am awake until 5 AM!

Exercise can make insomnia worse and still keep me awake but I digress.

Thanks again for the update of what is going on at Vandy. Glad you liked all the people and the doctors! Always nice to read positive experiences.

[ellen]

Thankyou Roselover for that very informative report! I hope you get some improvement from the meds they prescribed. -Ellen

[nantynannie]

Hi Roselover,

Thanks for the information on your visit. I was wondering if you could tell me more about your bladder/urinary problems and any possible solutions or things/medications you have tried. I am going to a nephrologist tomorrow, but I am pretty sure my problems are related to the dysautonomia. Thank you.

Ann

[Roselover]

Hi Ann,

At this point, I'm not doing very much about it. Vanderbilt had no info or advice in this area. Some people do need to self cath. I had a urological study to make sure I'm not holding in urine and hurting my bladder. At this point though, it's mostly just discomfort. Sometimes I have difficulty urinating and have to go to the bathroom several times in a row. Sometimes I am just having spasms that cause a little drip. When this is most uncomfortable I take Levsin. I hope it doesn't get worse, but I know it does for many.

I would sugget you do a search for bladder or urodynamic study. You might find some good info from the past as I know many here do have to self-cath.

~Melanie