Re: Autopsy results - Picc lines and i.v abx delivery

[Guest guest]

I think they misled you on the picc line. I had mine inserted in a matter of minutes and was back home the same afternoon. It's a good thing to discuss here, though, in case anyone does decide to get one in the future. One of my friends has had multiple picc lines and one time they did get the line too close to her heart, causing her a lot of discomfort. They backed it out a bit and she was fine, so just like anything, you get good and bad breaks with this stuff. It's really important that people research the various lines. I believe, and was told by many medical professionals, that the Grosshon Picc Line is the best and longest lasting, and needs the least maintenance, but since it's also more expensive, isn't used as often. I was fortunate that my doc insisted on a Grosshon Picc line (and my surgeon was impressed too) and I had it for 9 months without

any problems, except for sensitivity to the bandages. For cost purposes, many docs put in short lived picc lines for short courses of treatment. Those lines need daily flushing with heparin and still have problems with clogging, etc, and are only meant to last for weeks, not months. The Grosshon Picc line only needs to be flushed once a week with saline (although I liked the feeling of the saline and did it more often). All in all, the Grosshon picc doesn't seem to be hampered with the issues the other piccs are. I also believe that plastics sensitivity can become a big problem for pwcs. My biggest problem with the picc line was severe sensitivity to the bandaging material they used to cover the insertion spot (piccs need to be kept dry). I developed nasty, itching, raw rashes to almost all of the bandage materials. Eventually, after much experimentation, they found a very

expensive, super lightweight, second-skin type bandage that was difficult to obtain, but really helped with the skin irritation. Unfortunately, I couldn't get it on my own after my home health care company bailed on me because of a dispute with my insurance company so I was left trying to scramble to find bandages that didn't cause problems. Not easy and I eventually just had the line removed. But other people I know never had any problems with the bandaging. I guess my skin is just super sensitive to adhesives and not getting air. My friend resorted to getting a port, which is under the skin, so no bandaging is necessary. She prefers it to the piccs as she can go on and off the abx as needed without having to hassle with care of the line. Ports have risks but I don't recall what they are. It's a bit more of an invasive procedure, but some people who know long term abx is in their future have ports in for

years. Once you've got your picc line or port figured out, then you need to carefully research the abx delivery methods and the correct timing of delivery. Of course your insurance company will push the cheapest delivery methods, but these are often the most time consuming and keep you tied to your chair for hours a day. There are portable delivery methods, which have self dosing capabilities, but that requires an expensive little machine that regulates the delivery. But usually you can convince your insurance company to provide it and it's pretty easy to transport around in a small little clutch. The most expensive of all are the little balls of drug which each have their own little motor in them to pulse the meds over the right amount of time. I had these and found they were critical for me to be able to drive my kids to school etc. Being tied to a chair for 4 hours while getting an i.v. drip doesn't work so well when you've got

kids. The portable pack and the small balls are probably the easiest and most accurate ways of getting your drugs. If you can't make a case for needing mobility when getting your i.v., then be sure they calculate the time of delivery correctly and the amount of fluids you need. Many drugs need a slow delivery and a lot of fluid, and the health care people don't follow that. They just try to get the job done as quickly as possible. This can make you very sick (as I learned with the drug imipenim) and can also cause inconsistent concentrations of the drug in your body, which is a vitally important aspect of i.v. medications. To be effective, many drugs need to maintain certain tissue concentration levels in your body. Not paying carefull attention to that can mean that your drugs won't work for you nearly as well as they could. Unfortunately, it is complicated. Especially if you're sick and brain fogged. That's why

it's so important to have a really good i.d. doc working for you and making sure everything is being administered correctly. If you just can't get that, but have the ability to figure all this out on your own, then it can work for you as well, but it takes a lot of work. I didn't have an i.d. doc, so basically had to figure a lot out myself, which was stressful, but honestly the i.v. abx brought me back from the brink at one point. As much as I sometimes hate the hassle and side effects of all these agressive treatments, I much prefer that to my life before abx when I couldn't put a sentence together, or sit upright in a chair for long without feeling like passing out. penny Bob Grommes <bob@...> wrote: Some people react to plastic tubing or, more commonly, the soft plastic bags that a lot of IVs are dispensed in. Famously, when the IV drug for CFIDS/ME, Ampligen, was undergoing clinical trials, the whole thing was buggered up because plastic bags were used rather than glass bottles to mix this very unstable substance -- contrary to detailed instructions provided by the company that developed the drug.Glass bottles are available for dispensing IV fluids and a few clinics and hospitals have them on hand for use on request. I don't know for a fact it was the cause of the problem but since I don't have reason to

believe she was infected and she was being infused with preservative-free Mg Sulfate she had been using IM without difficulty, and since she was ridiculously reactive to almost everything, that's the theory I'll have to go with. The other thing that makes me lean that way is that repeated IVs increase the chance of reacting to the pthalates leaching out of the plastic, and she was fine the first couple of times and got progressively worse after that.The whole IV thing happened very late in the game, and we didn't have a chance before she died to figure out what was causing the problem for sure. Magnesium sulfate can burn veins if dispensed too quickly, and in one instance there was some leakage at the puncture site that complicated matters. It was like everything else, too many suspects. Was it the maid, the butler, or ...?Yes, we looked into a picc line, not only for general IV use but to get her some better nutrition

since she was having difficulty getting enough via food. But those are fairly invasive procedures, would have required an overnight hospital stay to install, we were told, and complications with long term use including infection is fairly common, especially in someone as ill as that. One has to have local anesthesia and that is always dicey for the severely sensitive. One has to run a needle into a major artery close to the heart, and she was having tremendous discomfort in that area as it was, etc etc.--Bobjill1313 wrote: Do you really think she was reacting to plastic tubing? It seemsunusual to me (not denying it).Artist Di got a picc line--obviously couldn't have?--so shecould be infused at the hospital twice a week (20 mg IV doxy), or elsedo her glutathione etc at home.The other lady--the bedridden nurse--whose

husband said she was slowlydying--and last I heard took a trip to Florida for a week (they're inArizona I believe)--had a Groshong, I think?That allows for infusing at home.But your wife might have reacted to those.Sounds like a typical holistic doc's office actually. I learned I haveto think for myself.