Home Infusions-what to expect???

    • Anonymous
      March 21, 2007 at 1:18 am

      Looks like since my driving is getting rather “off the road”-I’ll hopefully be getting home IVIG infusions.I’ve been so fatigued after the IVIG and Methotrexate that I can’t safety manuver home now (sleeping at the wheel).The clinc nurses will discuss this with the neuro next week.Hard to get-only for very disabled patients.
      What to expect??? I usually get my chest port IV put in at the clinic for my 3 days that week and then have 7-8 hours of daily IVIG infusion.I was told by the clinic that the home health folks do not give Ativan IV and it would be worse than coming to the clinic. I always get painful nerve/muscle spasm from IVIG and really want it to be over. The clinic can’t seem to give me relief-told since I’m driving they can’t give me certain meds. I’m tired of saying I can get a taxi if need be-please do something. “Catch 22”.
      How do you rate your home infusions?? Do the nurses want to hurry it up-crank the the pump rate up??
      Will being in my own bed/house be a plus?? I’m a night person so getting to the clinic by 7:00 AM after 2 hours sleep does make me groggy-especially for 3-4 days of this in a row. I’ll have my 2 year IVIG infusion anniversary came this May.
      Thank you for any suggestions.

    • Anonymous
      March 21, 2007 at 9:51 am

      Home care has been a life saver for us.

      The infusion company will calculate how long they think your treatment should last. You can speak to them & let them know of any problems you’ve had in the past with a quicker infusion & let them know that you do NOT want to go through that again. You’ve been doing this for 2 years now – you know how you are going to react.

      If the dr orders Ativan through the IV then the home care company should be able to give it to you. There’s no reason why they shouldn’t. You can ask your dr for a RX for Emla (or Lidocaine) cream to put on your port 1-2 hours before the nurse arrives. They will leave your port accessed for the duration of your IVIG’s for that week. Each access is good for about 7 days.

      It is SO much nicer to stay home & get your infusion. It’s more relaxing & you can do whatever you want to since it’s your home. You can even sleep during your infusion! You will be given a bag that your IV bag & pump fit into. You can carry the bag around with you if you need to go to the bathroom, get something to eat or just move around. We hang Emi’s bag on the arm of the couch when she’s sitting & it works out great!

      When you first get home care you will get TONS of new medical supplies sent to your house. I HIGHLY recommend getting a Rubbermaid cart – the kind with drawers & wheels. It makes it SO much easier to be organized.

      And remember if you don’t like your nurse DO NOT hesitate to call & request a new one. A good nurse is priceless!

      Good luck.

    • Anonymous
      March 21, 2007 at 9:02 pm

      Thank you. I have IVIG every other week for 3 days. I’m so tired of the drive, the clinic, the noise, not being at home and it’s become overwhelming.The nurses mean well but it’s the other dynamics while I’m there. It’s like working for 72 plus hours straight.
      I have asked for home health before-I wonder why it’s been so hard to get?? Let’s hope I do.
      Didn’t know I would get a baggy without the tall cart pump to drag around. I had named mine at the clinic.
      What does your nurse do when there??? I prefer quiet but need medical help here as I still have reactions.
      My cat will enjoy me being home.

    • Anonymous
      March 21, 2007 at 11:33 pm

      I had home infusions for IVIG & solumedrol from June of 2002-Dec of 2002, then continued with the home solumedrol infusions until Feb of 2004. I was taken off of IVIG the end of 2002 because that is when I started on cytoxan for my CIDP. Anyways, I loved having my infusions at home. I had the same nurse almost the entire time & we bonded very well. I was able to be infused in 2 hours 10 minutes (weighed around 136# at the time), so we would visit a little & then just watch TV together. I never had any kind of reactions to my weekly IVIG infusions, ever.

      I actually ran into my home health care nurse for the first time since Feb of 2004 a few weeks ago at a local restaurant. Since I was basically a quad the entire time she treated me, she said it was so weird to see me walking into the restaurant. When she came over to vist, I was so suprised to realize that I was taller than her, as she had always seemed so tall to me. Anyways, it was really good to see her & to catch up on our families & gossip…

    • Anonymous
      March 22, 2007 at 11:06 am

      Limekat – Our nurse usually does paperwork, reads or uses my computer. We talk & gossip a bit too. She used to play with Emily but hasn’t in a long time, which is kind of disappointing. We’ve had other nurses here too & they usually read, crochet, knit or play with Emily. A good nurse will take cues from you on what you want & need. If they suspect that you want to sit & watch TV quietly then they should have something to keep themselves busy.

      I think the monitoring is better at home too. The nurse monitors Emily every 15 minutes for the 1st hour. Then every 30 minutes for the next hour. Then only once during the last 45 minutes of her infusion. In the hospital we were lucky if we saw the nurse every hour sometimes and Emi’s infusions were MUCH longer at the hospital. At home they are 2 hours 45 minutes at the hospital they were 4-6 hours.

      Good luck. I hope you get approved for the home care. It really is SO much nicer.


    • Anonymous
      March 22, 2007 at 12:50 pm

      I was asking my neuro about having mine done at home and he wasn’t that positive about it. I don’t know why. It sounds like i would love it and my insurance would cover it. I hate going in the hospital for 5 long days for 8 hours a day of treatment each month. It seems to be my second home now and i counted the nurses and pca’s this time, 27. Thats too many people to deal with. And it takes me about 4 days to get caught up on sleep after i get home. When you have it at home does the IV come in one big bag or are there bottles? When i am in the hospital there can be up to 8 bottles that have to be changed, which makes me crazy getting someone to do. I am also stuck so many times that i look like i have been beat up! I am afraid my veins can’t handle much more. I am ready for a change.

    • Anonymous
      March 22, 2007 at 7:53 pm

      Lisa D –

      Emily’s IVIG comes in bottles. Then the nurse pools them all together into 1 big bag called a pooling bag. That bag is put into the black “backpack” along with the pump. It is SO much easier to use the “backpack” than the pole at the hospital. You can put it over your shoulder like a purse and walk around wherever you need to. Some nurses prefer to leave the bag sitting out so they can see it but we have always put it in the “backpack”.

      Some dr’s are afraid of IVIG at home because of the possible side effects. I would talk to him again & let him know that you don’t feel like the hospital is the best place to be. I can’t understand why people would want to go to the hospital in the first place. They are the germiest (is that a word) place around.

      Is it possible for you to get a Port or other central line catheder? Is it SO much easier on Emily. She has extremely “valvey” veins & would sometimes have to be stuck up to 7 times to get a good IV going.

      I hope that helps.

    • Anonymous
      March 22, 2007 at 9:07 pm

      I love the home health care I receive. I have a male nurse, which is good for me, since we talk sports, politics, watch tv and any other current events that comes up. When I couldn’t walk well, he would get me food/drinks/etc. And the pump they use is a billion times nicer than the gravity drip they used in the hospital!! It works, plus I am more mobile.

      I agree with everything everybody said, but wanted to second their opinions. However, I do joke with him that I hope I never have to see him again. But, it’s good to see he brings me my “juice” so I feel better.

    • Anonymous
      March 23, 2007 at 9:33 am

      Thanks for the info..
      I am going to talk to my neuro again about this. I don’t know why he dodged the idea to begin with. I thought maybe because he wanted to see me everyday to monitor me. You are right about the germs. The second time i went in for treatment they put me in a semi-private room, they said they didn’t have my private room ready. I was with someone one was really sick for about 6 hours and on my 4 day of treatment i began to get sick. After i got home I ended up going to see my pcp. I was sick. I try not to be around ppl and family when they are sick and here i am going in for treatment and getting sick.
      The port, It sounds like this is what i need too. I get started with a good vein but it won’t last. It has to be changed almost daily.
      When i am in the hopsital my blood is drawn daily to check levels. Does the nurse at home do that as well?

    • Anonymous
      March 23, 2007 at 10:50 am

      Lisa –

      The nurse can draw blood at home whenever the dr orders it. The dr will fax over his order to the home care company & they let the nurse know what she needs to do. She draws it then will drive it to the nearest lab to drop off. Emily had some genetic testing done & that couldn’t be done at home because the blood had to be frozen immediately.

      I can’t imagine anyone having prolonged IV therapy and not having some sort of central line catheder. I would NOT want to go through all of those IV pokes. NO way!

      Good luck with speaking to your dr on the home care.

    • Anonymous
      March 25, 2007 at 12:31 am

      Thank you for all the information. I called the IVIG supply company and talked to the manager. He said it would be NO problem getting me a home nurse as his company does this too. I would have the dumb cart pole in my house-yucky-will bring up the “baggy” like “Emily’s mom” has used. With the Ativan IV-this can’t be done as it’s considered such a controlled drug-can be abused.Supposively if my neuro writes the prescription for the Ativan pill it will work as well as the IV does-I doubt that.
      I think not having the stress of the clinic will more than help me with the whole thing. I find I’m in this little room and can’t go anywhere. I feel trapped. It’s a very nice state of the art clinic but it’s not home.I try to smile/pretend even when I am not doing well. This is just me and I pay dearly with precious energy not to get upset.
      I get to tired to safely drive back home and that’s the main reason-I wouldn’t want to cause an accident.
      Here’s to hopefully not having to getting dressed up, making lunch/snacks and driving when I can do the pajama thing with my big kitty next to me.
      I got my chest port after 15 months of IVIG-I waited too long and ruined most of my veins-so please go get one if IVIG is working for you. It just makes it so much easier.

    • Anonymous
      April 2, 2007 at 1:33 am

      First day of home health IVIG and it went very well. The clinic nurses are coming since my neuro is adamant using his own staff. I was told it was because he wanted to know exactly how I was doing and his nurses already are familiar with me-been 2 years times 6 IVIG in 24 months…. that’s alot of IVIG and clinic visits.
      I talked in length with the home health coordinator for this region and she was so nice. Even the clinic nurses asked the neuro if he’d just this time let other nurses do the home infusions and he said no.
      I got up early to be ready and when hooked up went back to MY OWN BED. It was great. I was tired but not like driving and being at the clinic with all the various personal dynamics.Listening to loud conversations/noises, emergencies from from new patients and the enormous sad energy drains me.The last few times felt like I was at a funeral.
      Right now I feel calm and relaxed. Tomorrow another lady comes and I’ve ready.I didn’t know what to expect and it’s pretty laid back at home.
      I spent too much energy at the clinic pretending I’m okay when I’m not.
      Here’s to a needed rest from the clinic till I get rides to and from somehow. My cat likes it too.

    • March 17, 2017 at 6:52 am

      Call Bell – Citus Health’s Call Bell is the first mobile solution designed to save time and money while modernizing the home infusion industry. Through this mobile application, patients can directly communicate with clinicians and get answers instantaneously through their mobile devices. 

      Call Bell, a home infusion support solution, increases patient satisfaction while reducing provider costs. Call Bell aims to provide superior remote patient support by incorporating instant communication capabilities with clinicians and providing expert instructions and advice seeking facilities with reduced waiting time and anxiety to the patients.

      Call Bell is ideal for…
      1. Patients – Call Bell equips patients with the guidance and instruction they need to troubleshoot any infusion concern. 

      • Patients can be confident that an answer is just a login away.
      • Patients need not worry that they will never be able to perform processes, related to operating infusion equipment, on their own.
      • Empowers patients go through the infusion process independently from admission to discharge.
      • Provides real time messaging 24/7 with the clinical staff so that patients feel supported and connected all the time.

      2. Healthcare Providers – Call Bell modernizes the way providers and clinical staff connect with their patients.

      • Healthcare providers can submit verbal orders and sign them digitally.
      • Nurses can take accurate inventory counts of patients’ supplies reducing the chronic waste that costs the industry millions.
      • Eliminate hours spent calling patients/physicians and sending/receiving faxes.
      • Reduce call center costs.
      • Decrease in unscheduled nursing visits.
      • Reduction in clinician on-call hours.
      • Reduce hospital re-admissions.
      • Reduction in supply costs.
      • Increase in patient satisfaction.