Diary From A Research Patient At Vanderbilt

[Kellysavedbygrace]

Thought some of you who have thought about coming to be a Research patient at Vanderbilt, or are already planning a future visit might like to know about my experience. I'll try to post again to give you an update later this week.

MONDAY

I was admitted Monday morning to the Clinical Research Center as an inpatient for an 8 day research stay where I was put on a special diet- caffeine free, moderate balanced diet of sodium and potassium. I also tapered off most of my meds.

On Monday following admission I had a QSART, lab work and met with the Clinical Research coordinator, nurses and dietitian. I also had a lot of paperwork to complete including medical histories,

several orthostatic vitals and late in the day I got to meet one of the other POTS patients on the floor. I felt tired but pretty good.

TUESDAY

Yesterday they awakened me early (5:30 am) to insert an IV. It only took two sticks (good for me) to get

it going. At 8:00 am they had me do a posture study where they drew the blood before standing and then after being upright a half hour. I sat in the chair for the majority of my "upright" time. Then after a little break and rounds I met Dr. Biaggioni, my assigned doctor, who not only has researched POTS for many years but has also done studies on Mast Cell Activation- how rare is that? Later they had me do a battery of autonomic reflex tests and a Short Tilt Table test (supposed to be 10 mins- I didn't quite make it but I was close. After that time I crashed for the rest of the day and felt physically horrible. But I am so glad to be around people who know so much about what is happening to me and understand this reaction is normal in POTS. I also decided I liked having my own quiet private room with a nurse who regularly checks on me and brings me food.

WEDNESDAY

Today has been an easy day. I had a medicine and abdominal binder study where I basically sat in a chair for 2.5 hours and they periodically took BPs or Orthostatic BPs. Not sure if I received the real

medicine or the placebo. I've had all afternoon to rest, I got some exercise and spent time this afternoon visiting with my new POTS friend who flies home tommorrow after her own battery of tests. I feel pretty good tonight.

So far this has been an outstanding experience. The nurses and clinical researchers are wonderful,

attentive and caring. It is so nice to be in a place where most of the people around me know more

about POTS than me. 3 days down, 5 to go.

[HopeSprings]

Thanks for the post! I'm very interested in knowing what types of things Vandy is looking at. It must be such a great feeling to be surrounded by people who get it. Any chance they'll clue you into your personal results? Please post with updates if you're able.

[sue1234]

Thanks for posting!! Really enjoyed reading that. Man, I already see that I could not do the binder----any pressure on my abdomen makes my chest and head very "stuffy" and very uncomfortable.

[kitt]

Thanks for sharing Kelly!

Didn't realize you were there already.

Be well, and I hope you learn lots and meet some interesting people who will share their dysautonomia experiences.

[Rachel]

Thanks for sharing about your time so far at Vanderbilt! I'm so glad you are having a good experience. I hope that your time there will be worthwhile and will provide some answers and better direction for treatment.

Rachel

[Chaos]

Thanks for sharing. Very interesting. Hope you can keep updating us as you go along.

[looneymom]

Thanks for sharing. Our cardioloist has visited with some of those doctors about our son. Our son may be going out to see them this year, if we can't get his levels of seratoine and dopamine up. Please keep us posted.

[Gerrik1]

Thanks for sharing. it sounds so interesting. Vanderbilt is a Great place.

[Kellysavedbygrace]

THURSDAY

I didn't sleep well last night and awakened in my typical POTS crash state- bad brain fog, fatigue, parasthesias throughout. I was awakened early for breakfast (6:30 am) and went back to sleep before the medicine study. One of the docs was out so at the last minute they changed my study from a 2 hour with abdominal binder to a 4 hour medicine only trial.

During the study Dr. Biaggioni came in to check on me. We discussed a number of things about my case and the studies going on. He also told me that I had a very exaggerated sympathetic reaction to some of the tests earlier this week. He asked me if I had any questions. His bedside manner is delightful.

Because of my symptoms I had a hard time sitting up for 4+ hours - even though they let me put my feet up for most of it. At the end I went right to bed. Spent the rest of the day napping and resting.

The other POTS patient went home today. I will miss her company. 4 days down, 4 to go.

[heathmcev]

Kelly,

Sorry you had a rougher day today... I suppose with everything being thrown at your body it's not surprising. I'm so glad you are enjoying working with the staff & doctors. Its nice that Dr Biaggioni is giving you clues as to your results as you go along. Reading about your experience is getting me prepped & looking forward to my Vandy stay next week! Too bad we'll only overlap by one day but it will be nice to meet you regardless. Thanks for posting your experience...

[corina]

Thanks so much for sharing your experiences Kelly, and for participating in this study which might be of great value!!!

[k&ajsmom]

wow, Im very excited to see the results of this study and of course I hope your doing well and find great benefits from it, take care and look forward to reading more of your experience.

[Kellysavedbygrace]

FRIDAY

Feeling much better today even though they took lots of blood. This morning I was awakened early by Dr. Raj for the Total Blood Volume test which involved an early morning IV insertion and lying flat for a couple of hours while they drew blood and injected me with 1cc of radioactive substance which binds to the red blood cells. This was followed by a time of sitting/standing upright for 30 mins. After that I had a late breakfast and had to fast before lunch for my 2pm endothelial studies. They began by inserting a little metal coil on the inside of my vein and scraped a few cells from the endothelial wall of my vein. (Sounds really bad but I couldn't feel it, the thought was worse than reality.). Then they looked at my veins under the ultrasound and measured my circulation with peripheral monitors. After the test I had a late lunch, rested and got a little exercise on the recumbent bike here on the unit. Now I'm resting in my room about ready to watch a movie on my laptop.

I am amazed by this department. It is so nice to be in a place where most everyone knows more about POTS than me.

[kitt]

Thanks for sharing about this exceptional experience Kelly, I hope you'll keep posting, but more importantly enjoy the experience while you're there! Am guessing that you are.

Think it must be wonderful to meet people with dysautonomia. Hope you get to touch base with dizzyde who posted above.

And meeting Dr. Raj...That's got to feel pretty amazing.

Every time you read a research paper from Vandy, you'll see the authors names, and think 'my old friends'...

Thanks for sharing.

[Kellysavedbygrace]

SATURDAY

I was awakened early (6:15 a.m.) to prepare for a 4 hour medicine trial. You know that feeling of waking up and feeling like you have had little to no rest? So after preparations such as vitals and breakfast I went back to bed. After two hours I was awakened and still felt bad with headache, lightheadedness and this persistent chemical tingling feeling throughout. The medicine trial involves a 30 minute baseline seated time after which they take you blood pressure seated and then standing after 1 min, 3 mins, 5 mins and 10 mins then they ask you to rate your symptoms on a scale of 1-10. Along with this is a urine collection. I am so impressed with how consciencious the staff is in keeping detailed accounts of my vitals, symptoms and study protocols.

With the help of a couple of full length feature movies and a nurse who kept my spirits up despite my symptoms I made it through the four hour trial with increasing brain fog and fatigue. Lunch of chicken, peas, potatoes and fruit was my reward. After lunch I fell asleep and was in dire need of recovery.

To my delight, I was awakened by Dr. Robertson, founder and medical director of the Autonomic Dysfunction Center ( who is covering my case while Dr. Biaggioni is out of town.). Warm, kind, patient and brilliant describe my impression of him after a 20 min visit. I am so thankful for the work he is doing here. Without the work of this center and a handful of others around the world we would all still be trying to convince our doctors that we have something else wrong other than anxiety disorder. Dr. Robertson took a genuine interest and concern in me and my particular case. But what is striking is that I later learned he came all the way to the hospital just

to visit me, his only patient. I am humbled and honored by his attention to me.

SUNDAY

I was awakened this morning by Sachin, one of the researchers here, who put on my 24 HR holter monitor. Thank goodness I feel better today. I streamed church in on my laptop in the morning and exercised for fun and took a walk outddors with one of the nurses for the first time since Monday this afternoon. At about 4pm Dr. Robertson came again to check in on me. Again, I am his only patient. He left his home this weekend and came just to visit me.

How blessed I am to be here surrounded by people who care and know so much more than me about POTS. A refreshing change in the doctor patient relationship.

[SeattleRain]

Sounds great. Is tomorrow your last day? Are you allowed to talk about the medicine trial you were on?

Thanks for the update!

[peregrine]

Thanks so much - this is awesome stuff! How does one volunteer to be an inpatient person - do you have to live locally or have a specific set of POTS symptoms/subtype?

[Kellysavedbygrace]

It is a double blind trial so thus far I don't know which drugs have been tried. I've had 3 days of med trials and today is my fourth. So I don't know and the nurses don't know whether I have the placebo or the medicine. The medicine comes to the nurses in a special sealed little envelope. Prior to starting the trials I had to read and sign consent forms which gave me a list of about 8-10 different drugs that might be tested during my stay. I think at the end they will tell me which ones I tried. I'll post about the ending consultation later this week.

My last day is Tuesday. I am scheduled to leave at noon. I believe I will get an IV of saline fluids before I go.

To volunteer you go online to Vanderbilt's Autonomic Dysfunction Center site and complete the application to be a research patient. They may also ask for additional medical records. The first 23 hours you are admitted "for observation.". This is the final screening. Basically they are looking to see if you clinically demonstrate autonomic dysfunction. Any autonomic disorder may qualify. They are doing ongoing trials on POTS, while here, I'm involved in 5-6 different studies. They also do studies on OH, NCS, MSA and PAF.

I began the application process in early fall last year. By November I was invited to participate. We scheduled the visit for mid January when the kids were already back to school. So far all the patients I know of have come from out of town (Florida, Arizona and Delaware) so I don't think it matters where you live. They only take adults 18 or older.

[HopeSprings]

So glad you're having a positive experience there. The Doctors you've been dealing with sound amazing! Faith restored.

[Kellysavedbygrace]

MONDAY

Although I slept very poorly with the 24 HR holter monitor on I felt pretty good. They awakened me at 6:15 to take my vitals and give me breakfast. At 9:00 my 2.5 hour med trial began. This time it also involved the use of an abdominal binder which Dr. Luis Okamoto placed. This is the second time he has placed the abdominal binder on me during my stay here. We've had some interesting discussion about the type of binder and proper placement. This is of interest to me because I wear the heavy duty version of Spanx almost daily. (I never leave home without them.). 40mmHg pressure of abdominal binder has been proven effective in improving BP and symptoms in PAF so Dr. Okamoto is testing this same protocol in POTS. After lunch I received some preliminary results from Bonnie, the Clinical Research Coordinator who is absolutely lovely. I learned that my total blood volume was normal - which is a bit of a surprise and my sympathetic reactions are quite exaggerated- further confirmation of my hyperadrenergic state. And after another brief visit with Dr. Robertson I got to meet my DINET friend Dizzyde. What a delight it is to meet face to face. We visited a couple of times sharing our experiences and lessons learned so far on this journey. I feel so blessed to get to meet her in person.

(by the way- she PM'd me after I posted a few weeks ago asking advice for my upcoming visit. Surprisingly she was scheduled to come in mid- Jan too. Our visits overlap by 1 day.

After a blood draw, saline IV and a consult w Dr. Biaggioni I get to leave. Can't wait for a cup of real coffee.

[HopeSprings]

How cool that you and Dizzyde got to meet in person! Interesting about the blood volume. It's commonly assumed that we have low blood volume, but mine was normal too when tested. I'm really interested in your response to the new abdominal binder. I have intense pressure in the abdominal and pelvic area when I get up in the morning which I assume is from pooling. It literally feels like everything is dropping - then comes the tachycardia. Please let us know if it helps.

[sue1234]

Thanks so much for posting this whole journey!! I am curious...does everyone have to wear a binder? As I mentioned earlier, I don't do well with anything pressing on my abdomen, but wouldn't mind the rest of the study.

[SeattleRain]

Thanks for the updates. How does one get their total blood volume tested?

Thank you

[Gerrik1]

Thanks for all your updated. It's been very interesting. It's Dr. Robertson wonderful? He was the one who tested and diagnosed me with POTS all those years ago. I really liked him and am glad you got to meet him. Enjoy that cup of coffee.

[Kellysavedbygrace]

TUESDAY

I was awakened at 6:30 for another IV insert. Lori, my nurse, got it in on the first try. Normally I'm a really tough stick but in the four times they made it in on the first try 3 of 4 times. Lori told me the nurses on the unit do at least one a day which is why they are so good at it. At 7 they took a final blood sample and then started a 1.5 ltr saline drip to prepare me for going home. Yeah!

After breakfast I packed up. By 10:30 my hubby arrived and Bonnie came in. She went over more results and answered several of my questions. Just after 11 Dr. Biaggioni came in and he's reviewed the findings and answered all our questions. He spent almost an hour with us. Here are some key things I learned:

- the likely reason I benefit from the saline IV treatments is not fluid, but salt. ie: in the drip I had this Morning I got 9 gms!

- the meds I was on before coming are really helpful. There are some additional meds I might try including: Methyldopa and Provigil

- my hyperadrenergic response is quite exaggerated. On testing stimuli (Valsalva) increased my SBP to 175 mmHg. This is a huge jump for me when my baseline is about 100.

- BBs help my tachy only temporarily but don't appear to help my symptoms

- my abdominal binder, SPANX, raises my BP about 20/10. - when standing after 5 mins I consistently have a significant BP drop. Into the 80s /50s

- although stress does make me more symptomatic it is not the cause of my crashing

- of course there is no cure for POTS. So, my job now is to continue trial and error of treatments and keep a positive attitude, trying to live as normal a life as possible.

Thanks to all of you for your positive feedback!

Here are answers to some of the questions above:

- The abdominal binder used during the study was different, less effective (in improving symptoms and improving hemodynamics) and

more uncomfortable than what I regularly wear (Super Duper mid thigh to chest Body shaper by SPANX). This is part of what Dr.

Okamoto and I discussed. I think mine has more give but creates a degree of pressure that prevents some splanchnic pooling- this is just my guess. And I think the abdominal binder would just be helpful for those of us with hypotension. I would not recommend for those with hypertension as it increases BP.

- Prior to participating in the studies I had to read and sign the patient consent forms for each of the studies. During this time they reviewed all the studies with me. You can choose which studies you want to be involved in. So, for instance, if I wanted to do it all but the abdominal binder I could have. You can say, "no" at any time during the studies. In fact, many times during the experience the nurses reminded me that I could stop or sit down if I felt like I couldn't stand anymore. Or if I wanted to change my mind. I didn't change my mind but I did sit down many times when I felt I could no longer stand.

- the Total blood volume testing is done at most of the major autonomic testing centers. (Vandy, Cleveland Clinic- OH, and Mayo- MN, etc). Interestingly a smaller percentage of POTS patients are found to have low total blood volume.

- yes! Dr. Robertson is a delight. Dr. Biaggioni, Dr. Raj and the other researchers are equally delightful and generous with their time. I had hoped to meet Dr. Robertson, Dr. Biaggioni or Dr. Raj. Can barely believe I got to meet all 3!

Dizzyde- hope you had a good day yesterday. Can't wait to hear about your experience.

Today my hubby and I making our way home to FL. So nice to eat salt and drink coffee!