Saline infusions

My infusions are going really well!!!! I have done 2.5 bags so far (I am currently running a bag). It is so easy to do and they help so much! I have more energy, don't feel as foggy, and my heart rate and blood pressure stay a little more stable. I was going to do infusions 2x a week, but that was just not often enough. I did my first one on Tuesday and then the next one on Friday, but Thursday was very difficult for me. I just was not nearly as alert and my heart rate was not as stable. I decided to go up to 3x a week on Monday's, Wednesday's, and Friday's, but after talking to some other POTS patients decided this wasn't quite right either because then every Sunday my body would crash because of the extended time without fluids. So, for the next week I am going to try every other day. I think this might be the right frequency to keep me hydrated and stable. I am so thankful that my neurologist put in my orders as PRN (as needed) because this gives me the freedom to adjust the amount of fluids I get to fit with my body and my schedule.

My home nurse is coming back on Tuesday because the needle and dressing that are in/on my port need to be changed once a week and I have not learned how to do that yet. I am hoping to learn to access (put a needle in) my own port after I get back from NY and start to recover from my spinal fusion. I now have to figure out how many fluid bags and supplies to bring with to NY for before and after I get out of the hospital as well as bring extra port supplies just in case something goes wrong and I need to change the dressing or anything else. I also need to count out and make sure I have enough of my normal oral medications and supplements to make it through the trip plus extra for if we end up needing to stay longer than expected. I will also need to bring my medications that I take on an as needed basis (muscle relaxers, pain killers, nausea medications, stool softeners, allergy meds etc.) so that I have them if I need them.

I got another delivery of supplies Friday night since I changed the frequency of infusions. When I talked to the woman at the supply company she informed me that they do not have any other lines that have dials to set the rate of infusion. My only other options at this point are to let it infuse by gravity only or to get an electronic pump to set the rate of infusion. I am not sure how fast (how many ml/hr) it would go in by gravity alone or if my insurance company would cover a pump, so I need to talk to the home nurse on Tuesday when she comes and see what she thinks. She is also going to help me figure out if I can fly with my port accessed (a needle in my port like it is right now). I am not sure what the security measures are for that, so we will have to figure that out before we leave.

I heard back from my neurologist about my blood work from a couple of weeks ago and it all came back normal. This means that my potassium and sodium levels are within normal limits so I do not need a potassium supplement as of right now.

I still have my pre-op appointment with my general physician tomorrow. She will order a bunch of blood work and a new echo-cardiogram (pictures of my heart). I decided to just get a new echo done instead of getting the results from my old one since I will need a new one soon anyways as I need one done once a year with my EDS (connective tissue disorder). I also scheduled a follow up with my general surgeon who put the port in for Thursday just to check the incision and make sure that everything looks good before we leave for NY.

Finally, (I know this is long already) I got put on the waiting list for a geneticist name Dr. Brad Tinkle that specializes in Ehlers-Danlos Syndrome (EDS). He is one of the leading experts in the country and just relocated to Chicago! This list is currently 6-7 months long, but at least I am on it and will hopefully get to meet with him next summer. He will be able to help determine for sure which type of EDS I have, discuss implications this will have on family planning for the future, what to expect for me in the future, and recommend any specialists or therapies he thinks I need or will need. 

I will update again later this week before we leave for NY next Sunday!