Monday, March 14, 2011

Initial post - copied from cb site

Thursday, March 10, 2011 10:22 PM CST
Was my post last week with the question wondering what this year would hold prophetic?? If the year is anything like today or like the past few weeks have been with providers im not sure I want to go fwd! (kidding of course but seriously, ugh!!)I make this comment really because 2 of my providers in the last month have commented how little time they have and that they dont neccessarily have the time to be effective members of my team - ie one has said (and I dont think it was to be mean it was just being honest which is soemthing I really appreciate alot) that she doesnt have the time to really be a point person but that she would try and the other made the comment that she could really only focus on one area not on multiple areas related to my care and that this would only get worse and she would have even less time soon. Then today while seeing my GC which i'll talk about the appt in a bit she told me that she is passing my care on to a different GC (due to re-organizing of the metabolic clinic and my GC not being a part of that clinic better overall flow) which is really crappy - as much as it sometimes has been really up and down with this GC she has been a part of my care since the beginning (05') and we pretty much agree that we butt heads at times only bc we are equally stubborn, committed and passionate about finding answers and about care. We've always eventually been able to agree to disagree or come around to one or the others side in time and we've made it work. I for one really appreciated her and would give just about anything to keep her on my team. I cant express the disapointment and discouragement I feel about this - change is always (ALWAYS) hard but this probably even more so bc she's so familiar with my care and really the only provider I have besides my PM dr who really takes the time to listen and is ok with not always agreeing. it makes it even worse that the new GC will be a male GC (which I have no problem with male drs actually) but in some areas females are much easier to talk to simply bc they tend to get the female stuff, listen and patience for figuring things out.. I just have this incredibly empty feeling right now and like I wrote in a summary to another person maybe my ability to rationalize this will return and hopefully soon and i'll figure out why this may be good but for now I just am feeling sad about it. Who knew in relation to ones healthcare you'd become attached to some providers - I dont even think in some cases it's attached it's more the being comfortable w/a provider, knowing how they work, and working fairly well together and being able to effectively communicate bc your not uncomfortable. Comfort is definitely a good thing especially in care where everything changes so much and these providers are really an integral part of your life simply due to the nature of the disease and the nature of the treatment you receive through them. I just pray to God this works out better than how I feel about it now. =/ Im sure it will but like anything it's never very easy!Here essentially is a summary of the appt which was long but very useful and I think w/the GC's help I have been able to identify quite a few things I need to work on related to who to see and what to get done as well as possible things to look at.I had talked in the past w/my PM dr (pain mngmt) about the blood sugar and blood pressure issues and she in turn had talked to my endocrine dr. So my GC is going to call my Insur CM and ask about ordering a blood pressure and blood sugar monitors and what she needs to do to get these approved. I then would have to use these daily for some time in conjunction with symptoms and keeptrack in the H/A log.Other recommendations GC had where to do the sleep study and then follow up with Pulmonary to see what their opinion of the breathing issues is – ie are we missing the ‘elephant’ in the room by focusing on Cardiac or cardio-pulmonary causes to this symptoms. Otherwise if Pulmonary had no recommendations then pulmonary and cardiology perhaps work together. I am to use an xopenex inhaler nightly to see if these may improve the breathing symptoms as this was a reccomendation my cardiologist had previously given. My cardiologist nurse is also talking about re-doing the ECHO sooner than may though she is talking to my cardiologist and will get back to me. I talked to her about maybe finding a new PCP and after talking about it and back and forth she agreed that a new PCP is probably a good idea - not bc my current one isnt good but bc she isnt available/have the time to help manage the care team really and decisions. – we talked about the role my former PCP played and this really brought it into perspective for the two of us what has been missing – ie someone who keeps up on the MPS literature and who is engaged with providers guiding the care and decision making. NOT that my current PCP isnt extremely nice and quite lovely really just that she herself has kind of identified she doesnt feel she really has the time to adequately manage my care and has given me the option to choose a different PCP if I ever wanted. I hate to do it bc I like the staff at this clinic to and am still somewhat undecided but feel like maybe I need to switch? Regardless I probably would interview a PCP who one of my providers gave me the name of and go from there talk to my current PCP about it all again.Probably the most surprising (besides the shock and dismay of my GC not being my GC anymore =( ) was that my GC had also talked to the 3 infusion nurses and agreed that it probably is time to be evaluated for a Port a Cath/access device and get an opinion on this. – ie does the access team think the benefits out weight the small but very real risks and also will talk to Cardiologist to get his opinion since Ports directly impact cardiac issues if they become problematic. **(update 3/14 --I talked to FMLH last fri and Interventional Radiology does these there so I have an appt this coming fri to go over the different types/risks/pros and see what they think. We dont think it will be a problem just have to see first and get all the eggs in the basket first)***She also talked to a dietician in her clinic about the headache log/food log and having the dietician come talk to me during infusion clinic about potential ways to improve diet despite the nausea and lack of appetite. Also advised I should talk to the nutritionist at the health store I go to about her suggestions. (this is where I get supplements I take) given I really have a pretty terrible day to day food intake. Sort of funny she brought this up as it is something I have thought of before but there has been so much going on both medical wise and in other ways that I just havent done anything with the thought. Great minds think alike?! :)One of the other things she recommended talking to my Physical Therapist to see if he had any recommendations to try and improve sleep – given I sleep propped up and do have a good bed (pillow top) but could the being propped up be causing more pressure on hips thus part of the reason for waking up.. and another thing was various types of juices she knows of which we will try since it cant hurt and dont seem to have the side effect to them like orange juice and some really sugary juices do for GI issues.Pain Mngmt appt today was fine nothing new really just refills and much talk about the budget bill in Madison of which I feel absolutely sick over (this week has been a week to make my stomach roll as far as emotions go :( ). All I can say is people ough to wake up and stop making it about themselves and realize it IS about everyone and how this WILL impact everyone in a negative way except the top 1Ugh just absolute ugh and disgust.I will end on the note of being happy it is Lent and knowing the knowledge my savior lives and so thus may I! Erica1 Peter 1:3 ESV / 5 helpful votes Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead

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