"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

December 11, 2007

Details from Vanderbilt

Here I am in the Nashville Airport!
It's Gibson country with the factory nearby.
I took this picture for Chris!

So I promised a full rundown of my Vanderbilt trip. But I must admit to you all… I procrastinated, but for a good reason!! I have had a wonderful couple of weeks with a reprieve from nagging, constant tiredness I usually face.

This seems to be a pattern, though I don’t know how much I can really count on it. But in the past two years, I get 4-8 weeks of a reprieve on the fatigue and then 4-6 months of fatigue.

But that’s beside the point. My real point is – I’ve been enjoying doing a few things!! I can’t tell you what ‘cause some things are Christmas surprises for family. But I can tell you I had a wonderful day with my little family when we cut down our Christmas Tree. We even had a few snowflakes! I’ve been to church, and I’ve been to a Nutcracker rehearsal.

I did have one really bad day – but that was kind of my fault. I ate a snowball cookie – a family favorite. It has pecans in it. I ate one and chewed the nut really good… but my stomach didn’t seem to appreciate that effort. I was in horrible pain and nausea for a day and spent another day recovering.

So… after that whole update – if you’re still interested… here’s a run down of my time at Vanderbilt:

7:45 Monday night: A symptom flare up begins. Heart rate, nausea, jitters, tenseness, shivers, sweats. I slept for one hour, then 2 hours then a 20min.

TUES: Finally got up at 3:30 AM

On the way to the airport I was extremely nauseous. I made it onto the plane without throwing up. A good friend from church, who is a Pilot, stopped by our gate to say goodbye and tell us he was praying for us. It really meant a lot to me, and I knew at that point that people were remembering to pray for me and I would make it to Nashville. By the second flight – the flare had calmed down. (These symptom flares hit unexpectedly and last 6-18 hours for me. But I have friends who have them last for days!)

We arrived at Vandy at 3:00PM. We sat a long time waiting for registration. Bill took my luggage over and we finally got checked in. I saw Bonnie, the research Director just before she left for the day. We rested, and had dinner. I slept so-so, but better than the night before.

WED: After looking over my arms and a couple of pokes, they decided I had to have a PICC line placed for all the blood draws and IV meds that would be needed. So Wed was pretty much a rest day, and PICC placement day. I’m allergic to Lidocaine – the normal numbing agent used for many of these procedures. But it all went quickly and smoothly.

THURS: Thursday started with a Posture Study. Before anything (including getting out of bed) I had to lay flat for 30 min. They drew blood and then had me try to stand for 30 min. At the end of the stand they drew blood again. This test is looking at the amount of catecholamines released while standing. Many POTS patients have abnormal catecholamine measurements, myself included.

After this test, they brought me breakfast, but after standing, I was very nauseous so it was hard to eat.

A few hours later I had standard Autonomic Reflex Testing. This included a 24 hour Holter Monitor (EKG and Blood Pressure). During the Reflex Testing, they watched my Heart Rate and Blood Pressure during different stressors. I did Steady Breathing, Fast Paced Breathing, Blowing against pressure, Hard Hand Grip, and Hand in Ice Water.

After these two tests, Bill had to head home. I rested and then in the evening, I had another flare of symptoms including a low grade fever. This, too, is common during these symptom flares.

FRI: I was supposed to have the first of a two day test with an investigational drug in combination with drugs that completely block my Autonomic System.

But with the flare, the fever and how horrible I felt, they were concerned for my comfort. By mid morning, I was feeling better, so they did the second day of the test where they only gave me the investigational drug.

I actually felt really good after this test. Unfortunately, the investigational drug is only useful for them to understand POTS. There is no chance that it will become FDA approved because there just is very little call or financial incentive to develop a drug that increases blood pressure!

I enjoyed my afternoon and evening. I even took a walk over to the main hospital gift shop!

SAT/SUN: Both of these days were calm and quiet. I had medication trials on both days.

A medication trial goes like this-
6:00am awaken to have BP taken and 10 min stand
6:30 Breakfast arrives – try to finish before 7:00
7:00- 9:00 rest and wait
9:00 Med trial starts. I sit in a chair and am not allowed to put my feet up. I arrange my computer, and art supplies so that I have something to do during the 4.5 hours. The first 30 min I just sit there with a Blood Pressure cuff on my arm. It takes my BP every 10 min. At 30 min I stand for 10 min (I can sit if I have to). At the end of the 10 min. they drew blood and gave me the medication. I don’t know what it is. Then, I sit for an hour and stand for 10 min for the next 4 hours! As soon as it’s over, they bring me lunch and I’m free for the rest of the day.

I was able to get a shower on Saturday, and I did my laundry on Sunday.

MON: I had the second day of the two day investigational medication trial. I really did feel weird afterwards. I couldn’t stand up for several hours because I would immediately pass out. But that was OK, because my bladder wasn’t working either – so no need to get up!

TUES: Another Med trial just like the weekend

WED: I had a Bicycle Exercise Test. At Vanderbilt they are concerned with helping their patients exercise in a safe way. Not exercising leads to an unhealthy heart and bones, but exercise exacerbates all the symptoms!

So I was put on a recumbent Bike – completely lying down. I had an EKG and Blood Pressure cuff on and I had to breathe through a tube that measured my oxygen use and Co2 release. I began pedaling and they increased the resistance at regular intervals. I pushed as long as I could and when I couldn’t go any longer I gave them the signal. Then I was to sprint as hard as I could for one min.

I was sooooo worn out from this test, but it was also very valuable. My heart rate, as expected goes way too high, but they gave me great guidelines to continuing my approach to exercise.

THURS: Another Med Trial

And Bill came back! I was so glad to see him, but we only had a little time together because I had a Sleep Study that night. I was taken to another room and hooked up to a huge number of wires with patches all over my face and head (the goop in my hair was really disgusting)

FRI: I had my last med trial – IV Saline. We already know that this helps me feel so much better – that’s why it’s the last thing they do. But it also helps record the difference it makes.

After the IV Saline test, we met with the doctor, got all our release instructions and headed out to a hotel for the night. Our flight left very early Saturday morning and we arrived home by 11:30 am.

Whew…. Well… there it is! A full run down of my time at Vanderbilt!

I had a great time making friends with nurses, laughing with the doctors during testing and I even had a nurse bake me my own fudge pie! They don’t react strongly to symptoms that scare me (I think because they see them all the time), but at the same time, they are very sensitive to how I am feeling and how they can help me be more comfortable.

The other really special thing is that they have a patient who lives in Nashville and likes to come and visit all the patients, when she is able. She was able to make it while I was there and we had a great talk.

If you read this whole thing – thank you! If you skimmed – thank you! If you just checked in – thank you!

And thank you for all your prayers and support for this trip. They would like to see me again in a year or two. I don’t know about that – but I sure am glad someone is studying this illness!

This the view from my bed. It's about all I saw of Nashville!

Here's my bed. We put a cot next to my bed for Bill.
He said it felt like he was sleeping on Walnuts!
When I had my sleep study, he got to sleep in my hospital bed!

I had a double room - but never had a room mate.

1 comment:

  1. Thank you so much for sharing, I love hearing all the details!