My Experience With Dr. Kaufman at the Open Medicine Institute

[jeff_w]

Becareful, you dont want all the travel to undo the good work of the saline.

I wouldnt worry about veins bursting, abit of direct pressure, maybe an ice pack. you will expend less energy getting it done at home.

I agree, @heapsreal

 

[Gingergrrl]

Becareful, you dont want all the travel to undo the good work of the saline.

I wouldnt worry about veins bursting, abit of direct pressure, maybe an ice pack. you will expend less energy getting it done at home.

@heapsreal It is so good to see you (I love your posts and feedback and glad you are still on PR!) I hope you are doing well and wanted to ask without sidetracking Jeff's thread too much!

As far as my prescription, my cardio did not order home health for the IV's and don't think my new insurance would cover it anyway. He specifically wanted me to go to an infusion center 1x/wk to see how it goes and if I benefit from it. If I do, and the IV's become more frequent, I will inquire about home health. Right now I am not well enough to leave my home so I totally understand your point. I am going to try to find a closer place vs. traveling all the way to where my cardio is which is quite far.

As far as my veins, they are really bad and if someone came to my home and set it up and then left, I would not know what to do if the vein burst or the IV slipped out of my vein and got infiltrated and wouldn't know how to remove or fix it! I had a lot of problems in the hospital where it would take 3-4 different nurses to get the IV into my arm. I feel safer at an infusion center where there are multiple people around the entire time if something goes wrong.

 

[heapsreal]

@heapsreal It is so good to see you (I love your posts and feedback and glad you are still on PR!) I hope you are doing well and wanted to ask without sidetracking Jeff's thread too much!

As far as my prescription, my cardio did not order home health for the IV's and don't think my new insurance would cover it anyway. He specifically wanted me to go to an infusion center 1x/wk to see how it goes and if I benefit from it. If I do, and the IV's become more frequent, I will inquire about home health. Right now I am not well enough to leave my home so I totally understand your point. I am going to try to find a closer place vs. traveling all the way to where my cardio is which is quite far.

As far as my veins, they are really bad and if someone came to my home and set it up and then left, I would not know what to do if the vein burst or the IV slipped out of my vein and got infiltrated and wouldn't know how to remove or fix it! I had a lot of problems in the hospital where it would take 3-4 different nurses to get the IV into my arm. I feel safer at an infusion center where there are multiple people around the entire time if something goes wrong.

understand your concern, im sure they would teach you. it would be easy to learn how to turn off the infusion and as for the iv coming out, just treat it like any other cut, pressure etc?

Im suprised at the big deal medicine makes of IVs and the cost of them, they should be alot cheaper for patients and its a simple skill after some practice, some people are harder than others too i guess.

Once did a transfer from one private hospital to another and had to wait for a doctor to put an IV in, i asked the nurse why they couldnt put one in, they said they werent allowed only doctors in the hospital can, this seemed very strange to me. Then she said but you guys can? i said yeah, thinking there was some catch or it was going to be difficult. I agreed because we were in a rush and i wasnt going to wait all day for a doctor. It was one of the easiest iv's i had put in and after i did it i asked the nurse what the doctors got payed for this, she said to me that i just made that doctor $50, i nearly fainted, i felt like taking the dam thing out, thats almost double what i earn in an hour. SO when i see iv treatments being so expensive i just think that doctor is charging $50 for a couple of minutes work, rediculous and saline is a bag of salty water and is cheap, although helpful for your situation. its not rocket science but rocket science prices. But if one doesnt have a choice than thats the way it is.

If im lived near by i would do it for nothing, maybe a pepsi max and chat to ya for a couple of hours??
Enough of my rant, i could go on for hours, lol.

 

[Gingergrrl]

If im lived near by i would do it for nothing, maybe a pepsi max and chat to ya for a couple of hours?? Enough of my rant, i could go on for hours, lol.

@heapsreal I loved your post & rant and if you lived nearby I would invite you over to set up my IV's in a heartbeat and promise to have unlimited Pepsi Max for you LOL .

 

[Gingergrrl]

@jeff_w @heapsreal @Sushi @NK17 I wanted to let you guys know that I finally will start my IV saline tomorrow! I was unable to find an infusion center near me that did saline (I thought it would be easy but wasn't!) so I will be doing it at the new infusion center at the same hospital where my cardio works and recommended. It is a bit of a drive but my husband will take me and it is just once a week.

It is one liter of saline over a three hour period. I really want to see how I feel after the saline b/c my first attempt at OMI did not work (b/c of my bad veins.) I had saline twice in the hospital but it was a super slow drip (once 6 hrs and once 10 hrs) and I was lying in hospital bed entire time so I never got to see how it would feel to have saline and then try to walk around.

I am hoping it helps me but you never know! Just another experiment in a long course of trial and error... Wish me luck!

 

[Sushi]

@Gingergrrl

Do you have a choice on the number of liters of saline? From what I've heard, most autonomic specialists give at least 2 at a time.

Best,
Sushi

 

[Gingergrrl]

@Sushi, At the moment, I do not have a choice and this is the prescription that my cardiologist wrote. I see him again the first week of Nov so I can discuss it with him then. I am happy just to try it at all right now! Just curious, why do they recommend two liters vs. one?

 

[jeff_w]

@Gingergrrl

I started out needing two liters, then went down to needing a liter and a half each day. We're all different, so you might feel a difference after 1 liter. If not, maybe have your cardiologist authorize two liters.

Good luck with your saline!

 

[Sushi]

@Sushi, At the moment, I do not have a choice and this is the prescription that my cardiologist wrote. I see him again the first week of Nov so I can discuss it with him then. I am happy just to try it at all right now! Just curious, why do they recommend two liters vs. one?

As Jeff said, we are all different. My autonomic specialist found that--for most--1 liter was not enough to have much effect. So if you don't feel anything after one, you can always try 2! For some of his most symptomatic patients, he split the IVs between 2 days, so that they could get 2 each day. This seemed to be helpful when someone was in crisis or when they would need an extra boost before something they had to do.

Sushi

 

[NK17]

Good luck @Gingergrrl!
Since I don't have any personal experience with saline IV, still in the limbo of those waiting for their PCP to talk to their ME doctor, there isn't much I can add.
I cross my fingers that this will give you a little boost, some extra mileage .

 

[Gingergrrl]

I will do a full report tomorrow and let you guys know how it goes!

 

[Ruthie24]

Good luck tomorrow Gingergrrl. I've had good experiences with getting 1 L saline infusions 3x a week at the local infusion center. They help a lot with my OI symptoms. Wish the effects lasted longer than 24 hours or so but they do seem to help a lot. Mine are usually infused over 2 hours. I have also found having a warmer on the IV helpful as well so the fluid goes in warm and not cold. Triggers less autonomic symptoms for me.

 

[Kati]

Good luck tomorrow Gingergrrl. I've had good experiences with getting 1 L saline infusions 3x a week at the local infusion center. They help a lot with my OI symptoms. Wish the effects lasted longer than 24 hours or so but they do seem to help a lot. Mine are usually infused over 2 hours. I have also found having a warmer on the IV helpful as well so the fluid goes in warm and not cold. Triggers less autonomic symptoms for me.

This triggers me to suggest for @Gingergrrl to bring a heating pad to wrap your IV arm in case they don't have a warmer, because indeed, at a rate of 333 ml/hour, it gets a bit cold.

Best of luck with the IV. Drink lots before your appointment to 'juice up' the veins and make sure your extremities are warm.

 

[Gingergrrl]

Thank you @Ruthie24 and @Kati for the feedback and I do wish the IV was for two hours vs three but this is how my cardio wrote the prescription so for now I have no choice.

Do most places have a warmer? They did not do this when I was in the hospital and I did not know to ask for it. What does it look like? I have a heating pad at home but it is huge and not something you could wrap around your arm!

@jeff_w Do you do that for your IV's? Also, how many hours do yours take? Sorry if I already asked you this!

 

[Kati]

@Gingergrrl I was a chemo RN before I got sick. Our outpatient unit had 4 heating pads per room, 1 for each chair so chances are that infusion unit will have at least 1 heating pad to keep your arm warm. The IV warmer would look like a bulky at the top IV pole. They are expensive units. By wrapping your arm in the heating pad, and also wrapping some of the IV line in it, you are achieving something similar. Otherwise, having a hot drink on hand will warm up your insides.

 

[jeff_w]

Do most places have a warmer? They did not do this when I was in the hospital and I did not know to ask for it. What does it look like? I have a heating pad at home but it is huge and not something you could wrap around your arm!

@jeff_w Do you do that for your IV's? Also, how many hours do yours take? Sorry if I already asked you this!

@Gingergrrl

I actually love the feeling of a cold IV shooting into my arm. Your mileage may vary, and I seem to be in the minority here!

As for the heating pads, the infusion center I go to uses them to prep my arm in order to find a vein. The heat causes veins to expand, making it easier for them to insert the line successfully. So, they wrap my arm in a VERY warm pad for about 5 minutes before the insert.

I've heard from others that faster lines work better for OI symptoms, and that has been my experience. I do 1.5 hours per liter. Two hours per liter also works for me, and I will do that sometimes to better preserve the vein.

 

[Gingergrrl]

Best of luck with the IV. Drink lots before your appointment to 'juice up' the veins and make sure your extremities are warm.

@Kati, Thank you and I am drinking my morning Pedialyte now and getting ready to leave for the appt in about 45 min.

@Gingergrrl As for the heating pads, the infusion center I go to uses them to prep my arm in order to find a vein. The heat causes veins to expand, making it easier for them to insert the line successfully. So, they wrap my arm in a VERY warm pad for about 5 minutes before the insert.

I've heard from others that faster lines work better for OI symptoms, and that has been my experience. I do 1.5 hours per liter. Two hours per liter also works for me, and I will do that sometimes to better preserve the vein.

@jeff_w Are you going to an infusion center now instead of having the IV's at home? I will see how I feel after the three hours per liter IV today but thinking that two hours would be better logistically. Hopefully they have very comfortable chairs! And hoping I will be able to text and use internet from the room while having my IV!

 

[Gingergrrl]

I am about half way through IV and the nurse got it in my arm on first try which was good. She said I was dehydrated but I had drank water & Pedialyte this morning! Plus my BP was really low in spite of the Midodrine.

It was freezing in here but they turned up the temp and brought me two blankets so much better now. The nurse said that cardiologists write the saline for a slower drip so it doesn't go in too fast so I doubt my cardio will change it from three hours to two but I will ask him.

Can't really tell how I will feel afterwards but glad I am trying this as an experiment and feel that it can't hurt.

 

[jeff_w]

@jeff_w Are you going to an infusion center now instead of having the IV's at home? I will see how I feel after the three hours per liter IV today but thinking that two hours would be better logistically. Hopefully they have very comfortable chairs! And hoping I will be able to text and use internet from the room while having my IV!

My insurance stopped paying for home health visits, so I now have to go to the infusion center.

 

[jeff_w]

The nurse said that cardiologists write the saline for a slower drip so it doesn't go in too fast so I doubt my cardio will change it from three hours to two but I will ask him.

If your cardiologist won't write in for a faster drip, Dr. Kaufman will.