pirouette port advice

bump

bluelyme said...
Hi pirouette, i just got this smart port and am kinda dumb on it , maintenance and all...my llnp wanted me to get picc but another duc ordered and i opted for port ...
i was thinking of home care and maybe doing a lot on my own ..how long can yoj leave hubor needles in? ...how did you fare on the rocephin? How are you doing on the vanco...?..is it hard to maintain ,sash etc with out a nurse ?..thanks in advance

Hi bluelyme -

Yes, it takes us awhile to become as smart as the smart port ;)

I think you'll be happy with it--less fussy and less risk than the PICC and allows you to infuse more than just abx.

First, did you pay for the port out of pocket or through insurance? If insurance had anything to do with your installation, they'll likely want to control how meds are administered and the way they do this is through home health care visit by a nurse to help access you with the IV needle, give you a once-over and keep tabs on your progress.

If you have some other arrangement, that's great. You can also hire home care (my home care is about $200 per infusion and $200 per visit--expensive but I'd say my out of pocket expense is about $200/mo total). You can choose to do it all yourself but more responsibility is on you to keep it from getting infected, clogged, etc. But this is pretty straightforward. And also you'll have to buy meds from a pharmacy directly.

- you'll want to switch out your needle once a week - don't try to stretch this

- the SASH process is simple and will become automatic after awhile (saline, abx, saline, heparin) ALWAYS follow this order and don't skip anything--it's critical to keep the port and catheter flushed and clean

- I have had issues with infusions because I didn't allow my port to heal properly and it shifted out of place before tissues could form a pocket around it--and the lyme might have also prevented proper healing. So give yourself at least 2 wks going very easy not lifting anything or stretching your arm/chest muscles. My port shifted up towards my shoulder over an inch, and therefore the catheter shifted down into my heart too far agitating the heart (I thought I was having heart attacks) and also clogging up the catheter opening so please avoid this!

- Rocephin was very tough at first - it crosses the blood-brain barrier and my initial reactions were very VERY difficult "psycho-neuro" responses that lasted for about a month then finally calmed down, but the Rocephin did allow me to walk again after about a week.

- Vancomycin has been a huge relief after the very first dose. I'm thrilled with it--surprised by how quick and impactful it's been. But I can't stay on it long so I just hope it wipes out the bacteria by the time I have to stop.

- In general, abx should be pulsed although it's been tough to get my insurance-required home health care pharmacy to go along with that regarding the vanco - still working on it. This helps give the body a break but also tricks the microbes into coming out from hiding so you can zap them.

- I'm also taking herbal abx - just resumed so will let you know how that goes. I'm hoping to eventually go off the abx and will stay on the herbals for a transitional phase after that.

- Anyone who is on Rocephin should also be on Actual (Ursodiol) to protect that gallbladder. Most LLMDs know this and prescribe both.

- ALWYAS take probiotics with ANY herbal or Rx abx. There was a great discussion about various protocols - you should be on at least 100 billion of a wide variety of strains.

- if you have been living a healthy lifestyle, don't eat sugar, don't crave carbs, don't drink a lot you can start out with natural antifungals (there are lots of them but choose a couple and rotate them to new ones every month). But if not and if you are prone to yeast/fungal infections you should be on an anti fungal (my best recommendation is PURE Nystatin powder 500,000 units --ask you LLMD for an Rx - can be filled at most compounding pharmacies). It's much more effective than the overly expensive Nystatin pills that are filled with fillers. Unless a y/f overgrowth gets out of hand and requires a strong systemic anti fungal, the local pure Nystatin powder will keep the gut y/f in check while you're on abx.

- I also believe that detoxing with these abx protocols is as important as the abx - you need to flush dead debris and toxins out of your body as quickly as you are killing the infection or the latent debris may cause the same symptoms as the live infection. A binder is key for this kind of detox.

- schedule is key - people usually infuse once a day - I do mine in late afternoon because sometimes it can literally knock me out and also I have an early dinner while I'm infusing; an hour after I've ingested everything I do my anti fungal; I then wait an hour and do my binders (wait 1 hr after you ingest ANYTHING before taking a binder and wait another 3 hrs after the binder before ingesting anything); then after 3 hrs I do my probiotic.

Hope this helps - be sure to ask any other questions you may have. I'll try to find other recent conversations about IV infusions for you.

-p

Dr. J (Under Our skin) often uses IV protocols. He is extremely knowledgeable and has a lot of experience, and success.
I trust that if it wasn't worth the risks, he wouldn't use it.

I know that with other infections, IV antibiotics are sometimes required. Several years ago, my husband had an infection - either Staph or Strep - in his forearm. He did oral antibiotics prescribed by a Dr. in the E.R. dept. for a few days...we kept drawing a new line around the growing area....
When he went to his Dr....he immediately sent him to the hospital for IV antibiotics. He sternly said...that it was imperative he do this...if he didn't want to lose his arm...and worse. This was a Dr. who was usually quite stingy with the medical care coffers.

He had to do several IV infusions...but very first one stopped the infection from growing...within a few days...the redness was gone, and the swelling had gone down considerably.

I believe that it is the same with lyme and co's. Most of us don't require them, and may not have access to them.

But in certain cases...I think they are warranted.

" --terrifying. So glad you went to your GP!"


I had to put a noose around his neck and drag him there...

lol, Bluelyme!