Reply To: Second try on SubQ
I do still have my port. Of course the timing was just bad. I had a home health nurse not flush it properly and it got a clot in the summer so in August I got a new port. I did not know I would be trying SubQ in a few months – go figure! So I am having the port flushed once a month for now. I hate where this one is placed so I will probably ask to have it out this summer. My last one was deeper and never bothered me and this one just sit awkward.
I am fortunate in this case to have some extra padding on my bones. I gained quite a bit of weight in the beginning with high dose steriods. I could empty the fridge at midnight! So I have no problem with the needles and tissue. I have to say it is actually more comfortable if I infuse in areas that are not overly fatty. The plasma just does not absorb that well. I have read up on this and it does same some folks find that in the fatty areas repeated infusions can build up a scar tissue in the fat which makes sense. I use 4 needles and so the fluid under the skin is not huge. since I have started it seems like my tissues has adjusted and actually see almost no swelling or redness. I shift my areas tracking on a log and try to alter the layout of the needles to keep the sites from being exact each time.
My Neuro who is quite young and was trained at Mayo where my primary CIDP neuro is was not thrilled about the treatment either and never recommended. What turn the corner for me was my specialty pharmacists who had helped me manage my home care for a very long time. After research and talking we just knew this would be a better choice for me. Coram out of Minneapolis is my home health pharmacy. I also have to say that Baxter has been great to work with. They provide tremendous support.
Ironically my husband had started a new job and we had picked up BC/BS but were not impressed with how they were handling care. We made the decision to keep my insurance. I am beyond lucky to be able to work from home for the Washington Post and have Aetna which approved the transition from Gammunex IVIG to Gammagard Subq with no problem at all. All it took was new orders from the Neuro and I had my first month of SubQ before I was even finished with the IVIG.
Hang in there sometimes the medical community will eventually catch up with us all!!