Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Hi Barbara, Sorry to hear that you continue to have problems with your new J tube. I am in the same boat as you are. I have a PICC line too, but mine has been placed before I even got my first J tube. I am now in the process of getting a Hickman placed in the very near future. Something I have been putting off. A Hickman seems so much more permanent than a PICC line. But I was told that I am now a Long Term TPN consumer. I will be on TPN for the rest of my life. So many emotions are attached to my medical devices and the changes in my disease. It is so hard to accept that this is what my life is going to be. I keep hoping that something will become available or my health will change for the better so that I can get my old life back. I am surprised to hear that your pharmacist is making up your TPN bags. Is it your local Pharmacy's Pharmacist that is making up your bags of TPN or is it your home infusion company's Pharmacist that is doing it?? Mine is made by the Pharmacist at my Home Infusion Company. I do know that I had a problem with Thiamine when it was first added to my TPN. My muscles were shot, burned like crazy and were very weak. I don't know if it is directly related to the Thiamine, b/c it still happens off and on. I do hope they are testing your blood once a week (at least for the first few months) to determine if the TPN formula is correct. Our blood levels can change every week so our TPN has to change with us. Best of Luck with the TPN. And I do hope that you don't have to go through any more surgery for your J tube. Love and Hugs, Ann-Marie Barbara Seaman wrote: Not good right now. Pretty wretched, actually. Long story.........my j-tube feedings have gotten all messed up because gut hasn't healed from the Feb 2 tube pulling. I am now on TPN via PICC line until we can get the j-tube back up to speed, though the TPN formula in turn messed up my hyperinsulinism big time. We have tried to adjust the formula several times, but muscle is still shot to pot, feels pulverized and everything burns like crazy. Worst case on the tube problem might involve more surgery, but I am trying like everything to avoid that. My PCP is lost and does whatever I suggest, which is scary. Oh for a mito expert!! Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 My TPN is made by the full-time pharmacist in my doctor's large internal medicine practice, part of their comprehensive IV infusion center. We could have gone with Apria or Option Care for the TPN, but this arrangement is more flexible for several reasons. Yep, they are checking blood weekly when I get the dressing change and adjusting the TPN accordingly. Thks for the response, Ann-Marie. Much appreciated. Hugs, B > Barbara's J tube and TPN > > > Hi Barbara, > > Sorry to hear that you continue to have problems with your new J tube. I am in the > same boat as you are. > > I have a PICC line too, but mine has been placed before I even got my first J tube. I > am now in the process of getting a Hickman placed in the very near future. > Something I have been putting off. A Hickman seems so much more permanent > than a PICC line. But I was told that I am now a Long Term TPN consumer. I will be > on TPN for the rest of my life. So many emotions are attached to my medical > devices and the changes in my disease. It is so hard to accept that this is what my > life is going to be. I keep hoping that something will become available or my health > will change for the better so that I can get my old life back. > > I am surprised to hear that your pharmacist is making up your TPN bags. Is it your > local Pharmacy's Pharmacist that is making up your bags of TPN or is it your home > infusion company's Pharmacist that is doing it?? Mine is made by the Pharmacist at > my Home Infusion Company. > > I do know that I had a problem with Thiamine when it was first added to my TPN. > My muscles were shot, burned like crazy and were very weak. I don't know if it is > directly related to the Thiamine, b/c it still happens off and on. I do hope they are > testing your blood once a week (at least for the first few months) to determine if the > TPN formula is correct. Our blood levels can change every week so our TPN has to > change with us. > > Best of Luck with the TPN. And I do hope that you don't have to go through any > more surgery for your J tube. > > Love and Hugs, > Ann-Marie > > > Barbara Seaman wrote: > > > Not good right now. Pretty wretched, actually. Long story.........my j-tube > feedings have gotten all messed up because gut hasn't healed from the Feb 2 > tube pulling. I am now on TPN via PICC line until we can get the j-tube back > up to speed, though the TPN formula in turn messed up my hyperinsulinism big > time. We have tried to adjust the formula several times, but muscle is still > shot to pot, feels pulverized and everything burns like crazy. Worst case on > the tube problem might involve more surgery, but I am trying like everything > to avoid that. My PCP is lost and does whatever I suggest, which is scary. > Oh for a mito expert!! > > Barbara > > > > > > Quote Link to comment Share on other sites More sharing options...
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