I’m wondering if anyone out there has been receiving ivig at home? I have been going to the hospital 2 days a month 4 hours per day for over a year now. My doctor and insurance company want to set me up with my treatment at home and silly as it sounds I’m not sure how this works. Does she bring the Iv pole and pump to the house each time or will I have to store it? Will I be able to lay in bed or is that bad etiquette? I usually fall asleep during treatment as ivig causes intense drowsiness for a few days during and after therapy for me. Should I try to stay sitting in the living room and be awake?
I had mine at home and can't imagine anywhere else. The nurse would have a set appointment and come to my home with the iv and supplies. I did keep a few things at my house like disinfectant soaps, alcohol swabs and the pump and a bag of needles and syringes. There is no pole to hold the iv. It went into a bag like a fanny pack. You can wear it or carry it on shoulder etc. I was in my pj's when she came and after she hooked me up I would often fall asleep. After she hooked me up she would stay awhile and take vitals. She then left as my husband and I were trained to stop the iv upon completion and flush the line and remove it. If there was any problem, we would call her back. If you can do this, I strongly advise it. She comes to your home at a set time, so you are not waiting in a hospital setting while they tend to other people.
I receive IVIG at home.
Call IGG America. They are home infusion specialist and simply a pleasure to speak with.
Where you receive the infusion is up to you and your nurse. My nurse is male, and does not like to infuse in the bedroom for liability reasons he feels more secure in the living room. My nurse stays the entire day as I have severe reactions to the IVIG that require pre, mid and post treatment of benadryl and solumedrol.
If you require any saline as a pre or post treatment the pole is something you keep around. Depending on how often you get IVIG the pump will likely be sent back to the company.
It is so much better at home. I was a little nervous at first but now my nurse is like family. :)
The doctor at the infusion center where I go strongly disagrees with having infusions at home. Although this is convenient for people who have to travel for infusions, what do you do in case of getting a blood clot or have a serious allergic reaction or other surprise and need immediate care? He sees this at times and that is why they have doctors on duty at all times at the infusion center. I have elected to have my infusions there and every three weeks, it's a 400 mile round trip.
I would never be ok with my nurse leaving due to those risks. They supply the nurse with emergency meds for allergic reactions and extra supplies for those crazy instances that you hope never happens. I was surprised to read that the nurse left.
I have mine at home too. I love it. I used to go to an infusion center. I felt it was depressing there and I always worried about getting an infection. My nurse comes every 3-4 weeks. I have a box of supplies I keep here. I order new supplies to replenish the ones I use every week. They are delivered via UPS a few days before my infusion. I also receive the immunoglobin in that shipment. The pump is portable. No IV pole, you can walk around with a little over-the-shoulder bag. It is really nice. I usually sit down and take a nap once I am hooked up. But usually I just gab with my nurse and snack watch stupid TV with her. It is really slick and much quicker. No travel time. I would not go back to the centers. Also, my insurance covers the home infusions 100% which is great. I don't take my own IV out. She stays until it is complete. Taking my vitals a few time during the infusion. I am luck. Never had any issues so it goes very smoothly. Once the IV is out I am usually flying out the door to run around and get my stuff done. Sometimes I rest afterwards. Just depends on how I feel.
Ive been getting it at home every 5 weeks for the past 6 years. The ivig comes a few days before nurse is scheduled. I have a pump and box of other items that i keep home. The nurse fills the bag with the ivig and monitors my blood pressure often.
I go to my room and sleep and she just hangs out downstairs.
This is the 4 th nurse ive had. The previous nurses infused me too fast which would leave me with a bad headache. Just make sure your nurse isnt making it infuse faster than it should.
MY INSURANCE HAS BEEN COVERING IVIG AT HOME SINCE SEPT 2012. EVERY 3 WEEK CYCLE, 2 DAYS X 8 HRS A DAY, WITH RN IN ATTENDANCE. IVIG HAS ENABLED ME TO GET OUT OF BED & LIVE A "NORMAL" AS POSSIBLE LIFE SINCE THEN.
NEUROLOGIST SAID IT WOULD BE A 2-4 YEAR ORDEAL WITH EMG TESTS TO SUBSTANTIATE PROGRESS.
If reactions are a concern, you might try SubQ treatments at home. Nursing teach you how to give them then you can do it yourself. My side effects were remarkedly decreased this way. It also helps keep a steady amount in your system.
My experience with IVIG is similar to those above. I have been getting it at home for over 5 years after having it done in the hospital for 2 years. I have had no complications; my nurse stays around during the entire 3 1/2 hour infusion process. New supplies arrive by UPS once a month. I too use a fanny pack so am free to move around the house at will. I spend most of my infusion time in a reclining chair reading, napping, chatting drinking coffee, etc. I love the convenience and time-saving aspects of the home treatments and would hate to have to return to the hospital for treatments. By the way my CIDP doc says that most of his patients are treated at home.
chirpybirdy said:
I have mine at home too. I love it. I used to go to an infusion center. I felt it was depressing there and I always worried about getting an infection. My nurse comes every 3-4 weeks. I have a box of supplies I keep here. I order new supplies to replenish the ones I use every week. They are delivered via UPS a few days before my infusion. I also receive the immunoglobin in that shipment. The pump is portable. No IV pole, you can walk around with a little over-the-shoulder bag. It is really nice. I usually sit down and take a nap once I am hooked up. But usually I just gab with my nurse and snack watch stupid TV with her. It is really slick and much quicker. No travel time. I would not go back to the centers. Also, my insurance covers the home infusions 100% which is great. I don't take my own IV out. She stays until it is complete. Taking my vitals a few time during the infusion. I am luck. Never had any issues so it goes very smoothly. Once the IV is out I am usually flying out the door to run around and get my stuff done. Sometimes I rest afterwards. Just depends on how I feel.
I had all mine either inpatient or in the day hospital, so I am not sure but honey, you sleep. They come to take care of you, and not to be entertained. I would think that they stay the entire time? If anything went wrong they have to be there, right?
Hello Whyme, I take my IVIG at home. I was going to outpatient services in another city. The staff took great care of me but it was a terrible inconvenience to travel. I asked my neurologist to send orders to the home care service. They brought all of the supplies that I needed well in advance of the treatment day. Since I have infusions every 8 weeks for 5 days straight, the nurse leaves my pump, supplies and ig meds if delivered separately.
You will be allowed to lie in bed if you need to. It is your choice. The nurse will take notes and monitor your vital signs when needed. The objective is to make you as comfortable as possible. The RNs know IVIG make us drowsy. You don't have to worry, they are licensed.
I have a port in my chest which is very convenient. When I went to outpatient services the RNs had a hard time getting access. A PIC nurse would have to use an ultrasound machine to find a vein and then access it. At time I would get stuck at least 3 times before success. Then my vein would blow. So now I have a port. It was not painful getting it. I was under anesthesia. Now, I have a little knot the size of a dime. I just have to get it flushed with heparin every month. A nurse comes to my house. I have supplies already here. The pump is portable and in a bag. I can get on my computer, eat, watch tv. cook or sleep. It is my choice. The pump, IVIG medication/saline, bag all weigh about 3lbs. Just be careful of the iv line. My dog got tangled and almost pulled the needle out of my port/chest. Scared my nurse. lol. Anyway no problems with having my treatments at home.
I hope this helps
Missy
I get mine at home, and want to keep it that way. I have too many BP issues along with the fact that I am finicky about anyone I'm not familiar with in my home. There's no way I'd be able to sleep with them there, but it's too dangerous for them to leave. To the hospital, for me! :)