Dehydration and hypovalemia plus surgery number 5 (or 6 if you count wisdom teeth out)

Hi all, so I have been emailing with my neurologist all week working some things out. We switched around the times I take a few of my medications which led to a rough week because my body was so confused getting off of the normal medication system. I am doing better now, but I haven't noticed a great difference from before. My resting heart rate is a little higher which is nice because it causes less fatigue, but other than that we will just have to wait and see if it makes a difference.

I am not sure yet if the Strattera is helping my brain fog. He said it will probably be a week to notice and it has been about a week plus a couple of days now, but I haven't noticed a huge difference. Hopefully I will start to notice a difference shortly!

The biggest thing that has happened this week is that my neurologist and I decided to go ahead and administer IV saline fluids on a semi-regular basis. Patients with dysautonomia benefit greatly from IV fluids because even though we drink so much, I drink 1 liter of electrolyte fluids a day and at least 2 liters of water, we are still dehydrated. For some reason my body just simply is in a state of chronic dehydration. The other issue with this is that many dysautonomia patients have low blood volume, or hypovalemia. This is very hard to test for because the ratios of platelets in the blood to red blood cells is normal, but the over all blood volume is often very low. Multiple studies at Vanderbilt University, which is one of the leading research hospitals for POTS, have found that POTS patients have an average of  betwee a 12-20% deficiency in total blood volume.

We are looking into me administering the fluids myself at home. This would give me the convenience of doing them when I needed and wherever I needed. I would be able to take them on vacations or to my parents house whenever I needed. This may sound scary to some of you, but honestly I am hoping that it will help to increase the amount of time I am able to go out and do things: give me a better quality of life.

In order to administer the fluids easier and safer my family and I decided that I am going to get a port installed. This is a line that will go into a vein near my heart and have a small rubber and metal device sitting bellow my collar bone underneath the skin. This will allow me to access it at home with far less pain and difficulties. I have small veins that like to roll, blow, and hide. This means it is difficult to start an IV in me and I get bruises that last for weeks with a significant amount of pain. It will look something like this after it is installed:

And this is what it looks like from the inside:

I have an appointment with the general surgeon on November 5 to discuss the procedure and get all of the details that go along with the port and the procedure. I requested to have it done at Rush even though it can be done closer to my home because we felt more comfortable having a surgeon who has done this procedure literally hundreds or more times perform the operation. This doctor will also be able to communicate with my neurologist so they can decide on the best model to be used. It will take a very short surgery to install the port and we should be able to access it shortly after it is put in. Surgery right now is scheduled for November 21, but it can be moved up if a sooner date arises. I doubt this, however, because I wanted to do it on a Thursday because that is the best day with my school schedule and my fiance's work schedule.

I will update with more details after I meet with the surgeon on November 5.

Oh and I still haven't heard from The Chiari Institute yet :( I am hoping and praying it will be very soon that I hear from them!!!