In home infusion

I get my infusions at home too. When I was first diagnosed and started to get IVIG I went to an infusion center. That way they could monitor me closely since it was a new drug. But I have been getting IVIG now for about 5 years and love getting it at home instead of a depressing infusion center. My supplies and Gamunex come via UPS two days before my infusion date. I get everything set up (I call my kitchen my mini hospital on infusion days). The nurse arrives and takes over. It is quicker (no travel and checking in) and cleaner (less chance of getting infection from germs). Also so much nicer relaxing on MY couch in front of MY TV. I will keep getting infusions at home as long as my insurance continues to cover in-home infusions. I think they are the way to go if you do not have problems or reactions. Good luck.

I’ve been getting home infusion (Gammagard) since 2008 for my CIDP. My nurses have been great. This is typical out here on the West Coast. The insurance providers have found that it costs less than having to go to an infusion clinic.

My daughter (13) was just diagnosed w/ CIDP, has had two courses of IVIg in the hospital and we follow up with neuro next week for future treatment plan. In home infusions were mentioned, and seem to be the preferable plan. I’m concerned about the costs (hospital bills from her first stay were over $150k), and the logistics (nurse puts in an IV and then comes back and removes it when the infusion is done? What happens if there is a problem?!) any help you guys can provide would ease this worries momma’s mind.

Thanks!

I was diagnosed with CIDP in early 2008. My treatments from the beginning have been three a week on consecutive days for two weeks and then one week off. Then repeat. My nurse comes to my house around 8 in the morning and hooks me up. The treatment (30 grams of Gammagard) takes four hours. My nurse stays with me throughout in case I should have an adverse reaction. We watch TV I have gone through two ports (one went bad and now I am on a new one). After I ran out of veins, the port has been a godsend. This is not particularly fun to go through but what is the alternative. Fortunately, these infusions, over the years, have prevented my CIDP from spreading. That is a win. I hope this has been a help.

I had home IVIg using a PICC line (central catheter). The infusion rate is far faster than using a slow IV line. A Port is another option for an even faster infusion rate, if you can handle faster. The nurse stayed for the whole treatment. I’ve not heard of them leaving after they get things started, I think that would be illegal, at least in California.

An even lower cost in-home treatment would be via SCIg. Many people can give this shot to themselves without the need for any on-site nurse (after the first 1-2 treatments). The fluid is injected under the skin (slowly) and does not go directly into the blood stream. It “leaks” into the blood stream over a longer duration avoiding a too fast infusion rate. You can also go out and about while it is working on you. This approach has many benefits for those that can give themselves (or a spouse, friend, parent) a shot. More info here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

In my case, my doctor believes that the infusion rate should be slow. I start at 35 and after 15 minutes go up to 75 for the remainder. This takes about four hours. His reasons are that a slower infusion rate helps to insure there is no bad reaction (there haven’t been any problems) and that it is better for IVig to go in slower to have a better result.

I was getting in home infusions for 4 years, then my insurance switched RX’s now they won’t cover my nurse and want me to pay 1300 dollars for my treatment. I already received my meds and supplies 3 weeks ago and I’m at a lose of what to do

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I started infusions recently and will soon have my second set of 5 in a row. The infusion nurse stays at the house the entire time. He seems to have a lot of paperwork to do on his laptop, and I think he may be working on further education (we don’t know him well yet) so he stays busy and just checks my BP and other vitals each hour. I had a problem one day when I started bleeding around the puncture site (my skin is thin and fragile and has trouble holding an IV in place) so I was very glad he was present.

I get my infusions at home too, but I don’t have to pay for my nurse anymore. The place my neuro doc sent my new prescription to doesn’t charge me or the insurance for my nurse and she stays at my house the entire time. Shes nice, I was real use to my old nurse because I had her so long, but couldn’t pay out of pocket for it anymore. Overall I’m real happy to have the nurse at home and not have to drive all the way to the hospital for the infusion or pay out of pocket for the nurse. Hope everyone with the insurance out of pocket problems finds a solution.

Home health care is changing the dynamics of the patient-provider relationship, but many home infusion providers are still using traditional and inefficient patient support and communication methods. The result is an unacceptable trend: increased costs for decreased patient satisfaction. Citus Health brings modern technological solutions that eliminate the need for costly and ineffective methods of servicing patients.

Today we introduce this new technology to the home infusion industry with Call Bell.

contact 646-300-1340

I was starting to get infusions at home and it was awesome. The nurse came to my house very early (as I am an early riser!) and brought her bag of supplies. The supplies for the infusion itself were sent to my house a few days prior via a courier, I’m not sure how they do it in your state. Everything was sent to me in boxes; IV pole, dressings, Epi-pen in case I had an allergic reaction, benadryl for pre-loading medication, etc. They even sent me the gauze to wrap my IV hand with so I could use it for multiple days, as that would have been my loading dose.

The medication was also sent to me via courier in a cooler a day prior. We don’t have the biggest fridge, and it takes up a lot of room! Five days worth of IVIG in those glass boxes/containers is a lot. (P.S. I still have one that I have to give back because I forgot to give a box when they picked it up!)

Anyway, the nurse came to my house, dressed in her scrubs, and actually brought a vein finder machine. She was very cordial, though I think it is essential that you find a good nurse somehow. I wish we could screen for our nurses because this nurse and I had NOTHING to talk about and she was at my house for a good 5 hours. She was very affluent and had a $500,000 house that she was selling and kept talking about it, etc. I am a poor Philly guy so we had nothing in common.

Overall, I feel like it was more comfortable. They sent a backpack for me so I could put the bag into it once it was transferred from the bottle. I carried it outside, upstairs, etc. We sat in all different places. I eventually ended up laying upstairs one day because I was so tired. But, we did get to sit outside for a while, too.

I did end up stopping IVIG because my blood pressure dropped so low both days.

I have Medicare and Medicaid in Pennsylvania, and as far as I know, they covered IVIG 100%. (If I get a bill, I will let you guys know! :P!)

My diagnoses are former Guillain Barre, age 8, and CIDP, current. I have both axonal and demylinating neuropathy.

I have been receiving IVIG in the hospital which works out fine for me .i am concerned that I might be required by insurence to get future treatments in my home… I’d like to hear from those receiving in home care… how safe is it? How is the drug prepared? Any problems? How are nurses trained and how much experience do they need…..this change is stressing me out and I would like to hear from those who are receiving ivig in the home both pros and cons…..thanks so very much!

I think you’re reasonably safe since you have had it before and have a sense for any prior reactions. AFAIK, almost all now come premixed so its a matter of inserting IV and hanging the bottle, monitoring you and changing bottles as needed.

I get mine at infusion center. I know a couple of people getting it at home. They don’t always get the same nurse and get along better with some than others. Of course they are in your home for a few hours and Im not one to have a stranger around in my home unobserved. And it also feels like I perhaps would have the need to be a host while they are there.

Although more convenient for napping, reading, or just wandering around, it is not for me at this time.