Home health concerns

    • Anonymous
      March 17, 2009 at 12:38 am

      So I haven’t been on in a while but I’ve had some good news. I was approved for 2 gr/kg starting in February and This month got approval for home health. I was so excited about not having to be in a “closet” at the hospital. I finally got my ankle reflexes back, the last of my reflexes!

      The bummer is today did not go as well as I had hoped.

      I’m a difficult stick and I warned them but it took her 5 tries before she finally got the line in and that one was on the inside of my wrist…not very comfortable.

      I hadn’t thought about taking the IVIG out of the fridge a couple of hours before so it was ICE cold going in….again, not very comfortable.

      But I got thru that, I just hope tomorrow goes better…But I have a question for those of you who get IVIG at home.

      When I was at the hospital they checked my vitals every 1/2 hour for a while and then every hour. They then would ramp me up based on my vitals being okay. At home the pump is preprogrammed to run 3 hours and she only checked my vitals at the beginning and one other time when I questioned her. Is this normal? Do your home health care nurses check your vitals along the way or not?

      This nurse said since I’ve gotten these infusions for so long the chance of a reaction is small, but the Outpatient nurse at the hospital had told me it could come up at any time.

      I guess I’m just concerned. I’m going to put a call into my doctor’s nurse first thing in the morning, but I thought I’d get your input!

      Pray for me that my line from today is still good tomorrow and she doesn’t have to start all over!!!! ARGH!


    • Anonymous
      March 17, 2009 at 2:39 am

      Home health care nurses may not be as experienced giving IVIG. Mine sometimes forget to check my vitals and I learned to remind them.

      Call your doctor with your concerns. If this one nurse can’t find a decent vein to stick then I’d ask about getting another one. Try putting a warm wet wash cloth over your hand 20 minutes before the IV is put in. This helps the veins raise up closer to the surface.

      One reason I finally got a chest port was I’d run out of hand veins and the clinic nurses where going to have to start using my wrist-no, no, no.

    • Anonymous
      March 17, 2009 at 3:51 am

      If you aren’t comfortable with the ‘nursing’ part of the infusion then you should definately talk to the nurse about it. It’s OK to ask for more frequent vitals – you can even whip up your own chart with a page for each day of infusion. If your nurse is just sitting there during your infusion then she can be sitting there listening to your heart etc if that makes you more comfortable. By now I know my vitals will drop throughout the infusion but they have done that for the last two years so its no worry to me. And then there is that rate – I don’t know how much you are getting but when I was getting infused 40g in 3 hours I was ending up with all kinds of nasty side effects like meningitis, kidney problems, wicked cramps etc. If you have side effects this is the first thing you should consider changing. My rate is 25mL/hr for 1 hour, then 50mL/hour for 1 hour then 100mL/hour for 3.5 hours (more or less, we sometimes spend more time at the slower rates depending on how I feel.)

      The machine may come preprogrammed but the nurse should know how to change the settings. My machine WAS preprogrammed but we scrubbed the program and he makes the changes manually. Also, my nurse has taught me enough about the pump that I could (and have) reprogrammed it myself. It’s just a computer and you already know how to use one of those. Yes, reactions can happen at any time even after years of infusions as each batch may be different. My nurse takes my vitals two or three times during the 6 hour infusion as opposed to the hospital who followed the same schedule yours did. He does keep an eye on me though and will pop up and take the vitals if he sees me shiver or wince. Don’t be afraid to ask for what you need – its your body, everybody is different and they can’t just decide on your treatment and hope your body cooperates. It doesn’t work that way. If you feel that the nurse isn’t listening to you then you need to ask for someone else – this is your LIFE here. Before I got my current nurse whom I’ve had for a year and a half I had a string of nurses who were more interested in the television than me. If the TV was on they were watching the TV and would forget about my vitals etc. If this is the case with you then turn off the TV and read a book, some people are just mesmerized by the TV and their brains turn off when the TV is on. :rolleyes:

      I forgot to take my IVIg out of the fridge once earlier this year – the first time I’ve forgotten – and the last. WOW talk about compounding misery! 😮 Now I stick the bottles in my infusion belt pouch and wear them around for a couple of hours to try to bring them closer to my body temp.

      I should also add that if you are a difficult stick it makes a whole lot of sense for you to get a port. I’d suggest this to your doc next time you see him, getting irritated veins from bad sticks causes inflammation which makes your CIDP worse as well as causes side effects from the IVIg. You want nice easy sticks with no vein irritation from the needle scratching the inside of your vein because you are moving around and jostling the needle.

    • Anonymous
      March 17, 2009 at 8:23 am

      My nurse takes my vitals all the way thru it. Blood pressure, pulse and temp.
      If my blood pressure is up, she slows down the drip. I do not agree with the nurse you had…she should definitely be watching you very close !

      Also, my nurse brings my ivig so I dont have to worry about it. I never knew that we,the patient, could have it in our possession anyway. I learn something here all the time.

      I am so happy for you but at the same time worried about this nurse they sent to you.
      I agree with Julie about the port. Or, can you warm pack yourself before they show up, would that help ? I guess I’m pretty lucky that they can usually get me the second time…but lately it hurts like heck !

      Call the dr.

      yeah for the reflexes ! good luck today Marjie…take care.


    • Anonymous
      March 17, 2009 at 8:57 am

      What kind of IVIG do you use? Emily gets Gammaguard & we’ve never refrigerated it. This is something you should discuss with your home care company.

      Emily gets 20 grams of IVIG & her infusion lasts 2 hours & 45 minutes. Her nurse takes her vitals in this order:

      Take vitals before infusion is started
      Start infusion
      15 minutes later take vitals
      30 minutes later take vitals
      30 minutes later take vitals
      60 minutes later take vitals

      If you are not comfortable with this nurse then call the home care agency & let them know you want someone else to come out. Also express your concerns with her not taking your vitals. If this was your 1st home care IVIG then that is a HUGE no-no on the nurses part. Home care agencies (like any other business) want to cover their butts & taking vitals is a way to ensure they won’t be sued. If she couldn’t be bothered with taking your vitals when that is part of her job & this was your first infusion then I’d say she’s not a great nurse & you should move on.

      Emily’s home care company specializes in infusion therapy. You should make sure your company does as well. This ensures the nurses you get know what they are doing & are familiar with IVIG because that’s pretty much what they do all day long.

      Don’t get discouraged. Sometimes it takes awhile to find the right nurse and/or home care company. We use Critical Care Systems, I believe they are a nationwide company. I know there are a few others in your area. Dawn, Kevie’s mom, could probably give you some numbers if you wanted.

      How much IVIG do you get?


    • Anonymous
      March 17, 2009 at 9:49 am

      Thanks for all your input. This is Pearl Healthcare, I wanted to use Corum – what Dawn uses, but my insurance didn’t cover it.

      Hopefully today will be better


    • Anonymous
      March 17, 2009 at 12:25 pm

      Marjie – I hope today is much better! Ask about having the IV stay in overnight if you are going to continue to have treatment on consecutive days like this.

      Remember to speak up if you want something done differently. It’s your home & you get to call the shots!


    • Anonymous
      March 17, 2009 at 5:35 pm

      Today went better, I guess, but I’m still not sure this is the way to go.

      She left yesterdays line in but it wasn’t good this morning so she had to try again. She only tried once and couldn’t get it so she called another nurse and we waited 45 minutes for her to get here. She got it in on the second try. Other than that I called my doctor’s nurse and she talked to her about the ramping schedule my doctor prefers and emphasized taking my vitals throughout…which she did. I think it was a little slower than she wanted, as we started late and she had somewhere to go at a certain time, but I really didn’t care.

      She did say when she left that she would understand if I didn’t want to continue getting my infusions at home, since I had such difficult veins and all. I do have to note that the OPIC always got my line in on the first try, but hey I guess they do that all day long!

      So, I have to think this thru and decide because I’ll have to get new approval to go back to the OPIC at the hospital. I’m considering just asking for that second nurse next time and see how it goes with her.

      Well, at least its sunny and warm, 73! I think I’ll go sit out side a little and enjoy it since it will be gone tomorrow!

      thanks again for all your support


    • Anonymous
      March 17, 2009 at 9:54 pm

      Some nurse give up too quickly if they can’t get a good vein. Are there not just home health who only do infusions?? We have them in my city.

      I really love not having to drive to the clinic, deal with feeling bad and trying to sit in a recliner.Some of the folks had their TV’s on too loud and of course the general confusion.

      It can be hard to have someone in your home but you’ll get used to it. I go take a nap. I rarely turn the TV on and they might if I’m napping.Do what makes YOU feel good. Don’t try to entertain the nurse-if you’re tired then go lay down. Mine have their laptops with earplugs but sometimes the cellphones drive me nuts. I consider giving an infusion being at work.

    • Anonymous
      March 17, 2009 at 11:58 pm

      I agree with all the above, but have a few other suggests/comments.
      First, several people have said that hydrating well the day before and am of an infusion can help a lot with getting the IV started as well as the side effects of infusion. This and warmth to the site of where the IV will be started can help a lot. After the infusion, make sure that the IV is secured well with tape and perhaps wrapped or covered to make sure that the IV is not bumped or moved so that the plastic tubing catheter “needle” is not bent.
      Second, no one at the Children’s hospital where I work and where we give lots of IV IgG infusions is a fan of home infusions because a person CAN react at any time. It is only less likely if you have been getting infusions for a long time before. In this world with economics and availability driving a lot the choices of IV IgG, sometimes the brand of IV IgG is changed or has to be changed and you are more likely to react when this occurs. Keep track of what brands you get. The nurse should always have a reaction kit available. This should include IV benadryl, IV hydrocortisone (or perhaps other steroid), and epinephrine to use under the skin if there were to be a severe reaction. None of this has to be “drawn up” to administer, but it should be available.
      Third, our hospital has a definite standard for infusions of IV IgG that includes ramping up the rate and taking vitals before the start, before every rate change, and every thirty minutes for the first two hours, and then at least every 2 hours when the infusion is at the maximum rate. There are defined maximum rates of infusion in the PDR and ramping schedules to decrease the risk of reactions or of kidney problems. You should not go faster than that. there should be defined actions for the nurse to take if you get a fever, low blood pressure, high blood pressure, hives, chills, headache, etc. When I got my infusion the first time in the adult hospital, the nurses did not do vitals except the typical once every eight hours. Since this is the same system as the Children’s hospital, they should have been using the infusion “standards” at this institution, but just did not infuse IV IgG enough to know that they ought to do that or that there was a preprinted infusion administration orderset.
      Finally, people with neurological reasons for needing IV IgG seem to be a lot more sensitive to the rates of infusion than people getting it because of low immunoglobulin levels or blood reasons. I do not know the exact reason for this, but I explain that the immunoglobulin is being used to alter an immune reaction along the nerves and, even if it is a GOOD reaction, it is still a reaction along the nerves that are primed for immune reactions because of the immune attack on them. This makes sense to me as a reason that many of us feel so bad with infusions.

    • Anonymous
      March 18, 2009 at 9:10 am

      Marjie – I think you should call your home care company & request a different nurse. Sometimes it takes awhile to get the right fit – it happens to the best of us & it VERY common in home care.

      I would also let them know you need a nurse who is an excellent stick as your veins can be tricky. Tell them you want someone who has years of experience doing home infusions.

      One thing that is really bothering me about this nurse is that she had somewhere to go after seeing you. That should NEVER be a concern of yours. While the nurse is there she needs to take care of YOU & not worry about what she needs to do afterwards.

      I hope you do give home care another try.


    • Anonymous
      March 18, 2009 at 9:52 am

      I wish I could send my nurse to you. They are only in KC and Nebraska so far that I know of. They are called ARJ and they are TRULY all about the patient. My nurse always works around my schedule…no matter what. I can ask her to come over any time, day or night, and she will be there and be there for as long as it takes. I have never felt rushed and if I did, I’d be on the phone with a complaint. She is an expert with what she does and I think these nurses that come out to do this type of thing-should be.

      I agree with Kelly with all that she said and in that maybe you should ask for another nurse and give it another try.

      It should be a good thing. You should be all that matters to the nurse.

      let us know.

    • Anonymous
      March 21, 2009 at 2:28 am

      Connor’s Mom,
      Can I have 1 or 2 of your nurses?? Mine come at the crack of dawn and I’m a night owl. Since they’re my neuro own infusion staff nurses I can’t change having them unless I changed doctors. He’s the best in my city too. I don’t like how whatever happens in my home repeated and they sure share it all. It seems all too “in the family” so to speak. No autonomy at all. They use their cell phones like there’s no tomorrow and text back and forth-very disconcerning.
      It would be nice to have a new one come. Something different.

      I have all the necessary emergency kits on hand and IV medicines for nausea, drug reactions, ect. One room has a huge storage cabinet when all the infusion items are kept. Lately I had a few reactions and needed lots more nausea meds and fluids. I’ve had almost 240 infusions.

    • Anonymous
      March 22, 2009 at 12:31 am

      Limekat, that is very wrong. My nurse is very professional in keeping names and personal business of other patients to herself. Yes, she will share some of her stories with me…but no names and no specifics. My infusion company has a very open policy that if there is a problem, go straight to the owner.
      I would not tolerate my nurse on her cell or texting while she is there taking care of ME. I am paying for it…and we all know, it isnt cheap. By no means should you have to tolerate that.

      I would hope you could call the owner of the infusion co. The only fear I have is reprecussions. They wont show it to you b/c they’ll get in trouble but the talk will still happen, you just wont know about it. However, maybe the nurses will be replaced. That isnt right. Just not right.

      I would definitely call the owner. It’s worth a try. That’s a bunch of crap.

      please let me know what happens ok….

      best wishes and good luck.

    • Anonymous
      March 22, 2009 at 12:34 am

      sorry, i misread your post…ok, they are the dr’s nurses…then definitely tell the Dr. I dont think you should have to work around them,either. Like I say, we are the ones paying the bill.

      Tell the Dr. If you dont get anywhere, I’d look for an infusion company and see if they are covered under whatever health care plan you have….and then TELL you dr you are switching b/c you cant get anywhere but would still like to see him ?

      The dr can call the orders to the infusion company.

      I still think it’s nuts that my nurse drives around with my ivig in her van.

      anyway..do let me know.