Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I just did my first infusion today and it went well. Just so tired of having to go to the hospital for a day a month and having them dig for a vein.
Now for the info I got from the pharmacist.
I asked her about doing rapid push. She is aware of it but only in small doses. Up to (1GM) per site.
I am doing Hizentra 20% so it requires half the amount of fluid as other IG and is only suitable for subQ.
I am doing 6 Gms per week (30cc) in one infusion and two needles via pump.
I asked if rapid push would be feasible if I choose that method in the future. She said yes as it comes in 1 Gm vials, 2 Gm, ...
(Once it is opened it must be used up.)
I would be able to do 2 Gms three times per week or daily doses of 1 Gm six times per week.
There was discussion here in the past and I just wanted to pass on the information I got.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Poco - glad you got to try SubQ and it went well.
I guess you can envision pushing - take away the infusion pump and the flow rate tubing and all you have left is the needle, short tubing and a syringe. And would obviously only use one needle/one site.
Some folks can push with the 27 infusion set "thumbtack" needles - but I could not - even with 10 pct brands. Too hard to push through the teeny needle and tubing.
Most "pushers" use the RMS 26g sets. Still too hard for me. So I use the other option - 25g butterfly needles with the corresponding "wider" tubing. Easy peasy. Various ways to do this.
I would not ever attempt to push with the 60cc syringes. But I guess some folks can use them. 30's too stiff/difficults for me as well.
Depending on you/dose and Hizentra - maybe you could use 10cc syringes?
Am tired. Can help with ideas when/if you want it.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Thanks Susan.
I appreciate your offer and will surely ask for pointers sometime and probably soon.
Right now it looks like somebody gave me a pink belly. lol Just on one side. It's only been two days so waiting to see how long it'll take to fade and the "pockets" of fluid to absorb.
If it takes close to a week I think I'll be continuing with the pump. At least for now. I'm homebound so it doesn't really bother me. Yet.
I have too much difficulty with the 60cc syringe too. Even drawing it up with the 18 gauge needle is tough.
I saw somewhere about a 12cc syringe. It seems like there is a bit more in the bottles. It must take into account for what is lost in the tubing. A 10cc syringe can hold a bit more so would probably be sufficient.
I only have to do 30cc/week thankfully. 1 GM is 5cc. I do 6 Gm/week.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
They did not give you spikes to draw meds with?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
They did. I just didn't notice them until after I infused. I didn't really look for them as I didn't expect it to be difficult.
The pink has faded so it's looking like I'll be OK to do more frequent dosing via rapid push method.
I will probably ask for that with next month's refill.
Do they take the pump back? It appears that they charge a monthly rental fee?
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
The deal with the pump probably is determined by your insurance company. Are you still "in training"? Who has trained you? And what pharmacy is sending your meds/supplies?
The vented spikes are great - only downside is that they tend to make some of the meds turn into bubbles. The straight needles don't seem to do that - so no wasted product.
If you decide to "push" - you can ask for smaller syringes - the smaller - the easier to draw up meds with - using straight needles.
Syringe size would depend on your dose/cc's etc. One or two grams per infusion - infusing 5 or 10 cc's with Hizentra.
The nurse at my special pharmacy said I needed 20cc syringes when pushing 1g/10cc of Gammagard 10%. I think they are afraid one will accidentally pull the plunger out and spill meds.
Before I ever did any of this - I played around with syringes and water. A 10cc syringe holds a wee bit more than 10cc - which I would have preferred to use. To me the larger the syringe - the "stiffer" they are to draw up meds and push them in.
Then you need to decide on your needles/tubing. What brand did you get to use with your pump?
I was sent EMED 27g 9 mm 36" tubing to use with pump. I don't think those would be the best option to push with - even though the product is great - and the needles sharp. You would have to be fairly strong to push a 20% product through that needle/tubing gauge. More "resistance" due to the smaller needle, the skinnier (less volume) tubing and the 36" of tubing.
Again I think most folks push with the RMS brand 26g 9 mm 20" (or 24"?) tubing. Though folks experience that the needles not as sharp. But the tubing length is the best for pushing. I would think that wherever you have your needle inserted - the syringe could be placed in a pocket if you want to walk around.
Depending on if you want to walk around - that is - or need to get to the restroom. And depending on how fast you push. I am a slow "pusher". I take about an hour - sometimes longer - to push 1g/10cc's. I think that even for SubQ - slower is better.
The 26 and 27 guage are infusion set/"thumbtack" needles/tubing. You would want single needle sets obviously - and set up with Tegaderm covering just like when using the pump.
I opted for the 25g 3/4" Terumo butterfly needles. To me they are the easiest to push with. Different insertion technique though - at least for me. I set up my infusion site that looks almost identical to an IV infusion. Except obviously SubQ. Needle not inserted straight in like the thumbtack needles - but more or less at a slight angle - needle length almost parallel/under the skin. I use my thighs - and the shorter length (12") tubing can be problematic - because if you need to get up/walk around - the syringe won't reach a pocket - you have to basically hold the syringe. But no big deal if you infuse a small amount quickly.
I infuse at night in bed - with book, dog and chocolates. I read a page - push a bit - turn a page - push a bit. Well I got carried away and wrote more than I intended.
I learned some other "tips" as well.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I'll have to ask about the pump. If I do go with rapid push, I'd like to send the pump back. I'd really like to lessen the hospital look of our home.
ha ha I managed to avoid having a nurse come out. I told the pharmacist etc. that having a medical background I could do it myself.
I had received a call trying to set up a nurse for either Tuesday late evening. Not
Friday was the other option. I infused it not long after receiving it on Tuesday so no need for the nurse to travel hours to get here.
I was sent ALL-MED 27G x 9MM 36" by Accredo specialty pharmacy. They also sent 6MM. I chose to do the 9MM. They are nice and sharp.
I could do 10cc 3x/wk. I think I'd prefer that to doing 5cc 6x/wk.
Definitely don't want to spill any of the "liquid diamonds".
It would be much quicker doing it 3 times/week rapid push as now it only takes about an hour with the pump for 30cc.
I would turn the pump up if possible but it's not designed that way. I choose to infuse into the abdomen and wear pjs with a pouch front pocket.
ANY time I start something like this, IV, important phone call,...it immediately triggers a call to the restroom. A syringe would be easier to manage than the pump.
I do like the "thumbtack" needles. Shorter tubing would be more desirable though. Thank you for your input.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Interesting that they allowed you to infuse yourself the first time.
Are you going to continue to be getting your meds/supplies from Accredo? Or does your insurance company have a special pharmacy that will "take over" once you are "trained?
That is how it was for me. Two months "training" with Accredo - billed by Carecentrix. Then after the two months with Accredo and considered "trained" -everything has come from Cigna special pharmacy.
What I was not told was that when farmed out to Accredo - I had a 20% co-insurance on everything. Yikes. The meds etc all came from Accredo. I had not come close to my annual max out of pocket. I only had two nurse visits - but received two months of meds etc from Accredo. Ask about that if you are in a similar situation.
When back with Cigna everything is covered at 100%. Big difference in cost to me. With Cigna and if I used a pump I would be required to pay a monthly pump rental. No pump - no cost to me at all.
I don't know how you could push 20% Hizentra with the 27g 36" tubing infusion set needles. I guess some folks do - they must be strong.
I figured out the larger the syringe the harder everything is. The smaller the needle (with correspondingly skinnier tubing) and the longer the tubing also more difficult.
Combo of large syringe and 27g infusion set needle - I cannot imagine.
I would ask for smaller syringes and 26g 9mm 20/24" tubing to push with.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I guess I didn't give them a chance to disallow me to infuse myself the first time.
Accredo is my insurance company's specialty pharmacy so I'll continue to deal with them. I do like them thus far.
I have a monthly co-pay as it's under the drug plan. If I go to the hospital it's under major medical and 100% is covered.
It, to us, is well worth the co-pay to avoid the hospital.
I thank you for the suggestions as I couldn't push the Hizentra with a large syringe and long tubing either.
There are 12 cc syringes also. When I do make the switch to rapid push, I'll go with that size syringe to avoid any risk of mishap.
Definitely shorter tubing and a slightly larger bore needle. I am going to ask about returning the pump as I believe they are charging the insurance company a rental fee.
Thanks for the info. Susan. It's been of great help. I have a book ordered but must order the chocolates. That's the best tip!
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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A syringe would be easier to manage than the pump.![[lick]](graemlins/facelick.gif)
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