momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Ok... so Monday was my last home health care visit that was covered by insurance.
My son's nurse mailed out the income assistance paperwork and all they ask is household income. No consideration for medical expenses...
Our income is too high for a break on the home health care and the supervisor I talked to thought it would be $100 - $180 per visit based on our income. She can't tell me without seeing the paperwork... but really, that's too much.
I would like to hear from anyone who has learned to do the dressing changes themselves?
Also, if you do the dressing changes, who does the blood draw?
I called my local health center and they won't touch a picc line... not to do blood draw, not to change dressing.
I sent an email to the nurse who did our dressing changes to see if she will do it - but not through the office she works for. Not sure if this is legal or ethical... but figured I would give it a shot.
Any other ideas are welcome. I am at my wit's end. Need ideas... resources... what have you done?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Perhaps they could teach you or s family member how to do the dressing change and blood draws. Do you have any friends or family members in the medical profession.?
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
From the get go I had the nurse teach my husband how to do the dsg. changes. He had to be approved.
By the second month my hubby was doing all the dsg changes and the nurse was only coming in to do the 2wk blood draw.
When we exhausted our visits, my Dr. wrote a standing order for blood draws and I went to my usual place to have blood drawn,(not through the PICC line), they were not allowed to access PICC line.
I exhausted my visits early on because I was allergic to the chloroprep and tegaderm, so dsg. change every three days.
I was able to go three months payed fully by insurance that way.
Through Infuserveamerica I continued the 28days for $647 for all supplies and 2g. Rocephin all included.
Hope this makes sense.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I do have a friend who is an LPN... I asked her about helping-- she has never done a dressing change on a picc line. She calls an RN if something looks like it needs to be done to the picc line or the dressing.
I don't think I could do the blood draws? I would have no clue how to do that, where to get the vials or where to bring them. Probably wouldn't be accepted by the lab if mom brings the blood in... am I right on this?
I have watched the nurse for 4 weeks. I think I can do the dressing changes... I'm a bit nervous about it... especially since the supplies from infuserve are bound to be different than what our local company supplied.
I will do it if I have to.
TS96 - what do you mean by, he had to be approved? Who had to approve him?
I am getting the same deal you did on the 28day supply. My current supplier swears this is not OK - that it can only be kept refrigerated for 9 days, not 30... but infuserve says they have done extensive testing and it lasts 30 days mixed.
You must have done the pump? That is what we are doing too. Should be here tomorrow. I am a little nervous on that too. We have been doing the gravity drip... but they say this pump is safer and they recommend it.
So much to learn. Makes me think my mother was right and I should have gone to medical school.
Everything makes sense except how you went 3 months totally paid by insurance. (Good for you!!!) My insurance is digging their heels in and won't even talk to me... they only treat for 28 days... PERIOD!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
No, you would not be doing blood draws! You will have to get a standing order, as was suggested above, and go to a lab where they will stick you with a needle, not use the PICC line.
Posts: 8430 | From Not available | Registered: Oct 2000
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MOMlyme, The Nursing Agency told us that my husband could not do dsg. changes unless he demonstrated in front of her that he could do them with a sterile technique.
Mind you this is while it was being covered under insurance.
Once the Agency in not involved I suppose you could just do it.
I talked personally to the owner of Infuserve and he said he strongly agrees that the person doing the dsg. changes are approved to do so.
If a nurse who knows how can teach you or approve you I don't see a problem.
Yes, I had the syringe pump. It was super easy. Took about 40 min. to infuse.
My 28 day supply was fine. The color turned a little darker but as long as you keep them in the dark bag and in a dark refrigerator they are fine.
They can even be frozen, tho I never did this.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Ohhh and blood draws. The Agency nurse said she could approve husband to do bld. draws too but it just was easier to get a standing order and have the lab do it.
You just can't use the PICC access site to do it.
Remember you will need to learn how to flush and change extension tubing as well. It's not hard to do just takes practice. My extension tube was changed every 2 weeks.
I ended up having to order non-latex gloves due to allergy but Infuserve should be able to accomodate you in whatever you need. They were great.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Pay to have the nursing agency come to your house another time to teach you how to do the dressing change. You've watched many times so have the nurse talk you through it this time.
Then have the nurse come again for the next dressing change to watch you do the procedure (with minimal reminders). This will help you feel more confident in knowing that you are able to do it properly.
You will need to change the extension tubing and endcaps at least every 7 days. 2 weeks is too long, you risk infection waiting that long.
When you order supplies from Infuserve be sure to order some extras. Sometimes the dressing may become wet or dirty and you will need to change it early. Sometimes you drop a flush syringe (that makes it dirty and unusable). These kind of things happen so it's good to be prepared.
Be sure to order biopatches to use with the dressing change kits. They don't come in the kits. These are extremely important in helping to prevent catheter related blood stream infections. Everyone with a PICC should be using a biopatch (brand name and silver type are both good).
Infuserve is a great resource. I purchase my IV meds and supplies from them. I usually order my meds in the eclipse home pumps (they look like balls that collapse in on themselves while the med infuses). Once connected to the PICC line you can put the eclipse in your pocket and walk around. It is so much easier than using a syringe push or IV drip.
I also go to the local lab for routine blood work. They are not legally allowed to draw blood from PICCs (must be an RN to do this) so they have to stick you each time.
Hang in there momlyme. All of this learning and difficulty will be so worthwhile when your son is well again!
Posts: 5237 | From here | Registered: Nov 2007
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Could you explain how the eclipse home pumps work? When I googled this, it looked like the med is supplied in the pump, you use it and then throw it away. Right? And it looks expensive, like $10 each.
Posts: 8430 | From Not available | Registered: Oct 2000
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I didn't order bio-patches or extra supplies. And they shipped out the meds today.
I will see what comes in the shipment tomorrow and go from there. I have one bio-patch and dressing change here so I am all set for another week.
Still waiting to hear back from the nurse. She will be in the office tomorrow so if I don't have an email by morning I will call her.
Thanks for all the help! I really appreciate it.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
YOu can certainly learn how to do the dressing changes. Just do what sammy said, and pay the nurse to come and teach you.
The other alternative (although the above should work) is to see if you can get the dressing changes done at an Infusion Center at a Cancer Center in a local hospital, and see if that can be covered.
YOu should know how to do it anyway, because, as sammy said, sometimes you need to do a dressing change right away, if it gets wet, dirty, the dressing comes loose, you sweat too much there, etc.
Posts: 3771 | From around | Registered: Mar 2008
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posted
We go through InfuServe for my husband for IV rocephin. The large syringes of rocephin we were told can be frozen by InfuServe. That is how we use it when we get a 28 day supply. We keep a weeks supply in the refrigerator and the rest in the freezer until we are ready to use it. This is how we were told to use it. You might want to check with them too about freezing it.
Posts: 140 | From Illinois | Registered: Jul 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thanks everybody for all your help. Transition is tough for me to handle... every day is a new challenge.
Heleneh- we get the syringes and they are OK to freeze-- according to Infuserve.
Update on the dressing change:
Friday, I called the nurse who has been coming to the house for the first 28 days. I left a message on her voicemail.
Then, I called a couple of other home health care agencies in the area. Seemed like as soon as they heard lyme... they didn't have any RNs available.
I felt as if I was hitting brick walls, so I called a local support group to see if they had any suggestions. I talked to a wonderful lady who said one of the members might be able to help...
She took my email... and had some good suggestions: 1. Notify my LLMD and maybe one of her nurses can change it. I did this and LLMD said no problem... if all else fails, come to the office. 2. The hospital that put the picc line in will service the picc (ie. change the dressing) _ not sure this is true - I never called because LLMD said OK.
All weekend, I prayed. That's what I do when I don't know what to do...
Monday morning the nurse that has been doing his dressing changes called and asked what was going on. I relayed everything in full detail and made it clear that we could get it changed - it was just an hour and a half ride...
She said, "no, that's not acceptable. He's too sick. I'll call you back."
When she called back she said she talked to 'the big boss' and had us switched to a "no charge"-- indefinitely! All she needed was a script from the doc saying change dressing and endcap... and a standing order for the blood tests.
She changed the dressing on Monday and will continue to come on Mondays. And I watched and will continue to watch & learn.
She also gave us the bio-patches...
I am so grateful that she and her agency is willing to do this!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I guess I am one of the few that justs uses hydrogen peroxide on a cotton ball and rub alcohol swabs and bandaids for dressing changes. Have been doing this for the 7 plus years hubby has had a PICC line with no problem.
I use one medium bandaid and one large bandaid and tape it all around with cloth tape. Usually have to replace a strip or two of tape every couple of days and do a complete change every 5 - 7 days as needed.
Since hubby went back on IV meds one of the docs wanted him to have his PCP change the bandage every week and fax a note saying the PICC line was ok. We did this for a month and the nurse just used my supplies.
And then the PCP said why didn't we just continue doing the changes ourselves and skip the nurse. That was fine with us since the PCP was willing to write the IV scrips and the other doc didn't have to worry about any liability insurance issues that way.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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