Questions regarding in home infusions for non homebound pt.

[curleysue]

Hey all you Home health nurses and aides-

Just wondered about a few question regarding my own health. Currently and over the last year and a half I have had severe hypomagnesiumia. I require two 5 hour infusions of mag sulphate just to survive. As of now, I have seen a total of 12 specialist regarding this condition and we now know that my kidneys are to blame for this and that doctors don't know how to treat it. I have tried oral magnesium (just about every kind) which gives me really bad diarrhea and nausea with vomiting so I think I loose more electrolytes than gain with taking it orally. So I have resorted to IV mag sulphate 5grams twice a week. The infusion makes me feel not that good so they run it slow, about 1gram an hour and I require pre-medication IV phenergan and IV benedryl just to keep me comfortable. After the infusion I am tired but by the next morning I feel so good! And my symptoms are usually gone for about 2.5-3 days.

Let me tell you about my symptoms when I am low and needing an infusion. About 2.5 days after an infusion I start getting very fatigue, and my muscles start to spasm, ache really bad, and cramp. You know when you get a cramp in the arch of your foot? Hurts bad?! I get those about every hour in my extremities when I am low. After about 8 hours of that my muscles get so tender from the contractions that its hard for me to move around. Some other symptoms that come are sinus tachycardia, sometimes SVT but I just got an ablation for that, and PVC's. My blood pressure goes up, heart rate up and then I start to get severe headaches. Amazingly enough migraine headaches are now being treated with mag sulphate so there is a connection there somehow. Those are the main symptoms that can also become life threatening especially the heart.

My cardiologist wants my mag level to be above 2.0. My average mag level is 1.4-1.7 with the highest its ever been at 1.8. So its an endless struggle to get it at a level that is non symptomatic. I guess if my magnesium levels stay low like this for long periods of time I can end up with some drastic health conditions later in life including renal failure and heart failure. So needless to say this is a serious condition and seems to be rather rare.

So I have seen a nephrologist, cardiologist, rhematologist, endocrinologist, hematologist, pulmonologist, immunologist and the list goes on. So either I get these infusions of life or I guess my next step is to go to the Mayo Clinic or somewhere I don't know. No one seems to know what to do and there is not a whole lot of information on the internet about it.

But anyways I have posted on the main nurses forum to see if anyone had any ideas and most of them had said I should try to get my insurance to cover home infusions. But the thing is, is that I am not homebound, I may have a real hard time getting out of the home when I am low but I am only 25 years old and have a part time job so I don't know how hard it would be to get this to work.

I have a chest port and it is not accessed all the time and only is accessed when I go in for infusions so be being a nursing student I think I would be totally capable of accessing and/or maintaining the port if I got home infusions. And I don't know if I would be able to get my pre-medications of IV benadryl and phenergan at home or would I have to be in a hospital setting for those. So, if you guys have any information about how all of this stuff works about asking the insurance company or how easy it would be for me to have them at home. I definetely think its more cost effective to have them at home caues each time I go into the short stay center to get infused its $700 per infusion so at least I think it would be cheaper to have them at home but maybe I am wrong.

So any of y'all have info let me know. Thanks, Curleysue

[Traveler]

I am sorry you are going through all of this. It must be very difficult but you seem to be emotionally handling it well. As far as home health infusion... We have done private insurance visits for infusion for non-homebound patients. It does cost the insurance company less most of the time. Some insurance companies are more willing than others. I would imagine that you may have to make more than several phone calls and be put on hold multiple times, but I don't see why they wouldn't approve it.

[hoolahan, ASN, RN]

If it is cheaper for your insurance to have you do this at home, they will be agreeable. We have taught people to be independent in their home infusions. The pjarmacy delivers supplies to your home, and you manage it. They would just send a nurse once or twice to teach, then watch you do it yourself.

I'd call the insurance company and check it out. Ask for a case manager.

[pengwen]

I am so sorry you have to go through all of this......

This question is right up my ally. I got my CRNI (certified registered nurse of infusion) about 6 months ago. I mostly deal with home health infusion needs of all kinds. I help staff a home health ambulatory infusion clinic.

I'm not sure what insurance you have but I am sure they would have a home health benefit. Home health would be such a better option for you in many aspects.

1. More convienient. The fact that you know how to access your own port is great! I know that my home health pharmacy sends out port-a-cath supplies all of the time to pt's that manage their own ports. You would access your own port and hook up to your infusion. My reccommendation would be an ambulatory infusion pump (they are about the size of a small foot ball) with a continuous infusion over 24-48 hours. It sounds like you might be reacting to the mg going too fast. Additionally - if you could do this at home/work then your life would be much better. The kind of pump I am telling you about can be put in a small pack around your waist and you can live a normal life....

2. Less cost. Because you would be managing your own port you would not be charged a nursing visit and the extra costs of monitoring you during your infusion for such a long period of time.

Oh yeah - the IV benadryl and phenegran you can give at home. You don't have to be monitored. We teach people all of the time to go home on these kinds of infusions. You would be taught to give it at the proper speed and proper strength.

Anyway.... I hope that helps. Home health would be the best option for you!!