Thursday, April 14, 2011

Various Appts

Hello, busy week here so a few updates with all that is going on although mostly appt updates as the rest is status quo and just working on various projects for the MPS Society and for APFAN. I saw Pulonary this morning which went quite well and pulmonary tests actually turned out really well - there is still the mild restrictive lung disease but otherwise no change so as far as the breathing issues I experience my pulmonary dr does also believe they are cardio-pulmonary related and that the choices my cardiologist has made are good ones. Yay good news! :) Otherwise my Pulmonary dr is looking into seeing if I can do the sleep study at home as she and I to feel this might give us more accurate results and we dont neccessarily need the actual leg and sleep level portions of the test just the parts that look at breathing and oxygen and hours of sleep. I also followed up w/Pain Management which is usually always a good appt and always informative - not only for my own care but bc my PM dr really is awesome about sharing her knowledge and what she learns/hears going on in the background in the pain world. In this case it was alot of what changes are coming down the pipeline w/the govt and with some more pharmaceutical change overs (this would make the 3rd or 4th one that I can think of this year alone in this case Cephalon in a hostile take over and some of the others have been King being taken over by Pfizer and of course Genzyme by Sanofi. Must be something in the Pharma blood lately. =/ In some of these cases these are really good pharma companies that are really commited to pain management and improvements and in the case of cephalon it is expected to be broken up and sold off by various divisions which is a shame. We just talked alot about some of what needs to be done, what we each are working on and what we would like to see change/happen. As far as medical stuff we talked about GI affects of opioids and are going to do a trial run of a medication called remeron which is typically known for it's use in depression but because it affects both norephineprine and serotonin (a tetracyclic) it also falls into a class of drugs called neuromodulators which can help cervicogenic and cerntral nervous system headaches. In this case it is a disolvable medication taken at night and we will try it for a few weeks pending side effects. (im a big believer in not taking a med if it has significant negative side effects except in certain instances where the medication truly has a big impact on my quality of life in which case I will weight the side effects vs the good effects. She was a little concerned w/the Port bc of my thin body type and the very apparent nature of the port ie meanin the skin is very stretched but we all will just watch it to make sure the skin does not erode over time and it really should be fine. I do also wish the port was less visible as ive not seen anyone whose port is quite this apparent - it is just a very apparent bump but still not all that appealing! Lastly I see Orthopedics tomorrow for follow up to the hip injection several weeks ago. Next week I am meeting with the Insur Plan provider - err the middle company manager to go over the different plan policy changes that the school district/union are looking at and considering - my Dad being union president has told me some but this will give me a chance to get more indepth information. I also was able to find out from talking to my insur case manager that as long as we stay w/Dean which we are expecting to do she will stay as my CM which takes away some stress as she has actually been very good and very helpful at getting information and getting providers to communicate with each other! Another piece of good news! Really looking fwd to the weekend, to seeing my nephew whom ive not seen now for almost 2 weeks which just about kills me I miss him to pieces (he has been by his Dad) and also will see my youngest neice and brother + sister in law - fun!! God Bless and take care, Erica

1 comment:

  1. Ugh lost my short, can't wait to hear about new med and if it helps!
    Enjoy your weekend with your nephew!!!
    Thinking of you,