I'd like to reiterate that I do drink a lot of water. I average 64 ounces of water per day, I also have a cup or two of coffee, and sometimes I drink coconut water or juice (rarely), or Pedialyte when needed and I can afford it (stuff is expensive!). I would not account this drastic change to something I could do by just drinking more water. I drink A LOT of water. It never makes me feel this good, nor does it lower my heart rate like the IV Saline.
Right now, we have upped my visits to 3x a week. I have a nurse come out and hook up my IV Saline three days each week. I notice that the earlier I have it done, the better. If I have the Saline hydration in the morning, it helps me to feel better throughout the day; if I do it in the evening, it is almost wasted, as I end up sleeping not long after and the effects don't carry over to the following day. Some days, the nurses can't make it early, so I will gladly take the hydration at night; any is better than none. Once I have my port in place, I will be able to run my own fluids in the morning.
I tend to run about 250ml per hour, so it takes me about 4 hours to run a one liter bag. If I need to be somewhere, I can run it on "open" and be done in a little over 2 hours, or if I want to be lazy and lay around, sometimes I will run it at 200ml per hour, so it takes me 5 hours. It all depends on how I am feeling, how the IV feels (sometimes running it at open or even 250ml is uncomfortable, depending on IV location; it hurts more in my hand than my arm), how I am tolerating the fluids/pressure, and what my schedule is. I have so many doctors' appointments that I have to adjust my infusion schedule accordingly.
My doctor is in search of a general surgeon to install the port. Amazing PCP tends to take a while to do things, so I may have a bit of waiting on my hands, but he does come through. He is teaching me patience! Ha!
Just to get an idea, here are some numbers from random days I got fluids:
Day "A" - Nighttime Run of Fluids
Time: Heart rate: Activity:
9:37a 138 Just got up - feeling very POTSy today, HR stayed this way all day
4:35p 93 At rest - heart rate is too high, keeps jumping between 90 and 140
6:39p 89 At rest - heart rate is still too high
7:18p 93 Starting fluids - let's see if we can get the heart rate to drop!
7:36p 95 Running fluids
7:52p 86 Running fluids - heart rate starting to drop
8:09p 83 Running fluids
8:56p 80 Running fluids
9:18p 82 Running fluids
9:52p 76 Running fluids - still dropping
10:23p 78 Running fluids - I am feeling much better at this point
10:32p 73 Fluids done - So, I dropped 20 points. If I could have run these
earlier in the day, I could have had my heart rate reduced and
felt better all day.
Day "B" - Early Morning Run of Fluids
Time: Heart rate: Activity:
6:19a 102 Just got up - resting heart rate of 102, too high
6:46a 78 Been running fluids for about 20 mins, heart rate drastically dropped
7:04a 83 Running fluids
7:50a 76 Running fluids - big drop
8:13a 69 Running fluids - keeps dropping!
8:39a 67 Running fluids - feeling great
8:51a 68 Fluids done - Here's the amazing part: After this run, I left and went
to the doctor's. Afterward, I stopped and got groceries, then
came home and had enough energy to put them away.
Whoa! That is HUGE for me - I never have enough energy
to do multiple things in a day, nor am I able to sort through
my groceries when I get home. This was profound.
I continued to feel good until the late afternoon, then my
heart rate went back to its normal high. So, the effects lasted
many, many hours.
Hope this helps some of you - maybe you will decide to give IV Saline a try. It never hurts to talk to your doctor. I am so thrilled I decided to push for this, and I couldn't be happier with the results! Don't forget to read my guide on talking to your doctor about IV fluids.
Love and gentle hugs!