June Chit Chat

[agate]

Maybe the home health person hasn't run out of it yet but the hospital has?

[Virginia]

Where do home health nurses get their supplies of medicines like infusions? Forgive me for being stupid on these things but I have just never dealt with this. I always thought they worked through a doctor’s office and got their supplies by ordering them through the doctor.

If that was true how could the doctor get this if an infusion center can not?

[Sunshine]

Someone said that the HH orders from a pharmacy that has the ability to scour all the pharmacies nationally and to stockpile it. That hospitals don’t stock up on that...how can that be?

[Jeanie Z]

:) I wish I were getting IVIG again. I had it years ago when I had silicone poisoning from the reconstruction after cancer. It made me feel a lot better.

Yesterday I stood for one minute and ten seconds and I took four steps! I really am improving even though it is a slow pace. Doing meals is hard but so far I have been able to. Last might I ordered pizza. I won't do that again as it was not tasty.

I can't sit up much longer so will have to come back later or tomorrow. Take care everyone. Jeanie :)

[stillstANNding]

Great news, Jeanie. So happy you are home.

Sunshine, that is puzzling isn’t it? I do want you to get the IVIG but am a little worried about reactions. I’d feel better if you were at the infusion center. Hospitals often “borrow” when something like this happens or they used to. Why can’t they borrow from the home care folk.

ANN

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Sunshine ~

Our home health agency has a pharmacy, which like all pharmacies, must order supplies, medication, and infusions, like IVIg. They have various sources from which to draw, but they typically deal with a corporation for most orders.

For example, Jonathan's feeding formula wasn't used by any other patients in the agency, so it had to be special ordered. When there were problems obtaining the formula, the pharmacy went straight to the manufacturer. Our Savon pharmacy did the same thing for Jon's seizure meds to get brand instead of generic.

In your situation, I would call the infusion center and ask to speak to one of the nurses, who has served you. I'd ask the nurse for specifics on why IVIg isn't available at the hospital but is at the home health agency. We can speculate all day, but I'd bet that the infusion nurses know the reason.

As for IVIg at home, your nurse will stay with you for the full infusion. I highly recommend that you tell the agency what your requirements are for the infusion, such as length of time its given, any pre-meds you need, rate of the infusion, etc. All of the details. Have it written out to give to your nurse, before the infusion. Perhaps your home RN could call your hospital infusion nurse for pointers.

Our nursing service is connected to the hospital system, so they have all of this information on computers. Every 60 days, they have to re-certify a patient with lengthy documentation.

Our nurse gives IVIg to a young man, with a rare disorder, who lives with his mom. He's also on TPN for feeding. She stays with him for 4 hours, which is the length of his infusion.

She is also prepared to give Jim any kind of infusion at home should he need one. She taught us how to use a computerized pump to administer an antibiotic to Jon at home through his PICC line in 2012.

She was formerly an infusion nurse at the hospital, so she knows her stuff. That's the kind of RN you need. I wish I could fly her to Florida for you!

By the way, I've done some internet searches about the IVIg shortage, but I couldn't find anything current. Is the shortage nationwide, or just in Florida?

Prayers for this to be resolved to your benefit.

Jeanie ~

I'm so glad that you are improving and able to be independent. Healing prayers always on the way for you!

Love & Light,



Rose

[Lazarus]

Where do home health nurses get their supplies of medicines like infusions? Forgive me for being stupid on these things but I have just never dealt with this. I always thought they worked through a doctor’s office and got their supplies by ordering them through the doctor.

If that was true how could the doctor get this if an infusion center can not?

I am not sure where the supplies came from...I did solumedrol infusions at home for years. I think they were connected to a hospital.

[Virginia]

Jeanie, that is good news from you. Yes, you are getting stronger and it might be slower than you would like, but as long as it is happening then just keep going.

[Virginia]

Linda, I did my solumedrol in my Doctor's office. His Nurse gave me mine. So I didn't even have that background with Home Health.

I am Cherie would know the protocol for this.

[Jeanie Z]

:) Andy is here mowing the yard. I am mainly resting today. Having some lousy MS days so I need to rest. I am not great at listening to my body. Jeanie:)

[Sunshine]

Thank you so much Rose for all this good information.
It is a national shortage that started last year.

[Lazarus]

Thank you so much Rose for all this good information.
It is a national shortage that started last year.

In my first response to this thread I was guessing that there was a shortage in the blood supply. There are often blood drives and constant reminders that there is a shortage in supply.

[Sunshine]

In my first response to this thread I was guessing that there was a shortage in the blood supply. There are often blood drives and constant reminders that there is a shortage in supply.

That is just part of the problem Home health care is able to get the Gammaguard. It has to do with how it is ordered.

And also, many more dx are using IVIG now for off label treatment.

And the pharmas seize the opportunity to increase price , which was already sky high.

[Sunshine]

My eldest will be here for much of the weekend, So I might not be posting much. I am ok. My hearing came back after my right ear stopped hearing for 12 hours yesterday and all night until 3 am.

[Cherie]

Linda, I did my solumedrol in my Doctor's office. His Nurse gave me mine. So I didn't even have that background with Home Health.

I am Cherie would know the protocol for this.

It does entirely depend on the contract that the infusion center or the home infusion service has with the company that provides the IVIg or Gammagard. And it is true that the shortage of donors currently is impacting the supply. David used to donate every 8 weeks but now that he is in a clinical trial and we do not know if he is on real med or placebo, he cannot donate till the trial is unblinded in June of 2020. There are reasons that the supplies are down. Many donors are older and have to stop donating for health reasons or because they are on a specific medication. Oddly, there is some difficulty getting younger folks to donate.