How did you get saline iv infusions approved with port?

[CallieAndToby]

I asked my local cardio for the saline iv's religiously over the years b/c I've had them in the hospital and elsewhere but she always refused. My PCP will send me to some place one every 2 months but it only helps that day and I'm back to crazy sick but the saline iv fluids seem to be the only way I can retain. I just don't know how to get any medical professional to agree to it..... What was your process? I have terrible syncope and seizures every week so it seems like at this point it would be good idea. A friend of mine had a very difficult time making this happen for herself but it helps her a lot, she does infusions daily. 

[Pistol]

Hi @CallieAndToby22 - I have a port and get infusions up to 3 times a week, depending on how I am. I used to have to drive 1 hour to a infusion clinic and stay there for 4 hours to get infusions, meaning my husband had to kill 4 hours in town while I was getting the IV. For me too the infusions would only help for a few days and then the effect would go away. Back then I was in the ER every 6-8 weeks for autonomic seizures and syncope. I - like you - have IC and could not drink enough fluid, plus for some reason oral salt and fluids were not as effective. I seemed to pee them all out, whereas IV fluids stay in the blood vessels. ---- My local cardiologist was the only one who felt a port would be good for me but did not want to go against my PCP. I begged my PCP and my autonomic specialist for years to let me have a port for home infusions but they always felt the risks outweighed the benefits. Until one time I was in the ER for seizures and high BP and they admitted me and the hospitalist refused to give me IV fluids b/c he believed that if I can drink I don;t need them. I ended up crying and begging, saying I did not have to be in hospital for that. He said I can sign out anytime. I ended up having 2 more seizures before he finally agreed to give me a half bag of IV fluids - just enough to send me home. That was the final straw for my PCP and he agreed to the port. I never looked back since then. I have a nurse come once a week to change the needle and other than that I do everything myself. If I feel bad ( and as you know this can come on very suddenly ) I give myself a bag of fluids and improve instantly. I have not had a seizure other than from surgery or from a triggered flare in years. I have not been in hospital for seizures or POTS in 3 years and - although still being disabled, housebound and limited - have a much better quality of life. 

The best thing you can do is to print as much info about the benefits of ports as you can and bring them to your appointments. I even printed out success stories ( like mine ) or other's and gave them to my PCP. Remind your doc that in your case you are not able to take in orally the amount of fluids that you need and therefore are a good candidate for IV fluids. If you are not able to get fluids as an outpatient in an infusion clinic on a weekly basis then that is also a reason for a port and home infusions. He could try a PICC line first to see how much you benefit if he is not comfortable with a port right away. Both my sisters have POTS and they both get IV fluids at their doc's office preventatively, he inserts a needle each time and takes it out before they leave. But for outpatient infusions like that you would have to be well enough to go to an infusion center or clinic every week. 

Your doc might change his mind if eh sees how you respond to IV fluids. Demand that he orders them weekly for one month, even if you have to travel to a clinic for it. Then show him how much you improved while getting the fluids - this can be proof that you benefit from them. Best of Luck!!!!!

 

[CallieAndToby]

2 minutes ago, Pistol said:

Hi @CallieAndToby22 - I have a port and get infusions up to 3 times a week, depending on how I am. I used to have to drive 1 hour to a infusion clinic and stay there for 4 hours to get infusions, meaning my husband had to kill 4 hours in town while I was getting the IV. For me too the infusions would only help for a few days and then the effect would go away. Back then I was in the ER every 6-8 weeks for autonomic seizures and syncope. I - like you - have IC and could not drink enough fluid, plus for some reason oral salt and fluids were not as effective. I seemed to pee them all out, whereas IV fluids stay in the blood vessels. ---- My local cardiologist was the only one who felt a port would be good for me but did not want to go against my PCP. I begged my PCP and my autonomic specialist for years to let me have a port for home infusions but they always felt the risks outweighed the benefits. Until one time I was in the ER for seizures and high BP and they admitted me and the hospitalist refused to give me IV fluids b/c he believed that if I can drink I don;t need them. I ended up crying and begging, saying I did not have to be in hospital for that. He said I can sign out anytime. I ended up having 2 more seizures before he finally agreed to give me a half bag of IV fluids - just enough to send me home. That was the final straw for my PCP and he agreed to the port. I never looked back since then. I have a nurse come once a week to change the needle and other than that I do everything myself. If I feel bad ( and as you know this can come on very suddenly ) I give myself a bag of fluids and improve instantly. I have not had a seizure other than from surgery or from a triggered flare in years. I have not been in hospital for seizures or POTS in 3 years and - although still being disabled, housebound and limited - have a much better quality of life. 

The best thing you can do is to print as much info about the benefits of ports as you can and bring them to your appointments. I even printed out success stories ( like mine ) or other's and gave them to my PCP. Remind your doc that in your case you are not able to take in orally the amount of fluids that you need and therefore are a good candidate for IV fluids. If you are not able to get fluids as an outpatient in an infusion clinic on a weekly basis then that is also a reason for a port and home infusions. He could try a PICC line first to see how much you benefit if he is not comfortable with a port right away. Both my sisters have POTS and they both get IV fluids at their doc's office preventatively, he inserts a needle each time and takes it out before they leave. But for outpatient infusions like that you would have to be well enough to go to an infusion center or clinic every week. 

Your doc might change his mind if eh sees how you respond to IV fluids. Demand that he orders them weekly for one month, even if you have to travel to a clinic for it. Then show him how much you improved while getting the fluids - this can be proof that you benefit from them. Best of Luck!!!!!

 

Thank you so much this is very helpful. I'm sorry you had to drive 4 hours! And I am the same with you, I don't retain fluids and it just makes me go to the bathroom more which makes me worse but my body does retain the saline iv's.