Thursday, March 31, 2011

Hip procedure

Just a quick post -I had the L hip injections today albeit a mix up initially (earlier this week my endocrine dr had called my pain drs office who was doing this injections for my orthopedic dr and the endocrine dr gave the PM dr the orders for the solu-cortef IV I get 1 hour prior to any procedures/surgeries and when I got to the hospital this morning the nurses initially werent aware that this needed to be done and didnt have the orders - it turns out though that it was written into my chart but hadnt been mentioned so the order was given to Pharmacy, the IV was set and run an hour before (more like 2 hours because it was originally slated for 10:30 and the procedure didnt get done till closer to 12:00 - not unexpected with this particular dr who almost always runs behind but the price to pay for a good doc.) So anyways once that was figured out, the iv set and solu-cortef run (this is the stress dose of cortisol replacement and I additionally then take larger doses of the hydrocortisone for tonight and the next 2 days and then go back to my normal dose - on bigger surgeries I take the increased dose for 5 days not the 2 days for this procedure). The procedure itself went fine - twilight sedation was used so I remember more this time than I do of any other procedure but while I remember the 2 initial injections for numbing/dye I dont remember the actual injections which is so weird - is just like lost time! I dont feel any different good or bad tonight - nothing other than the usual pain in my hip and down to knee as well which is both the inflammation and the hip itself I believe. The injections where focusing on both the hip joint abnormality and reducing inflammation around there to try to reduce the clicking and locking up problems and then also focused on trying to ease up the trocanteric bursitis. It can take anywhere from 3-10 days to see any results if you will have any and I see my ortho dr in 2 weeks. Last weekend myself, my older nephew who spent the weekend and my younger nephew who was also here along w/my sister and her family + my brother and his family took all the kids to the local aquatic center swimming - which this has a kids slide, adult indoor/outdoor slide, lazy river and varying levels of deepness. I did post a couple pictures but between my sister and law and I we took combined over 300 pictures I think in the 4 hours we where there while also watching the 2 youngers kids - Zan and Jordan who had a blast together as always and older Jordan + Quinn also hung around us quite a lot! We plan to do this again in early april - totally was feeling the aching in my hips by sat night but well worth it! Less than a week till the port a cath insertion which will be under nerve block. God bless, Erica

Thursday, March 24, 2011

Some of whats going on

Thought I would update a little of whats coming up and going on medical wise and otherwise for that matter:

-Thurs 3/31 I have the hip Injection Pain Mngmt (PM) dr
-Mondays always ERT
Friday 4/1 Neurosurgeon Appt at UWHC (new Nsg) and lunch w/my regional mngr for APF
-Tuesday 4/5 Port access device placement FMLH
-Thursday 4/7 Sleep Study FMLH
4/21 Ortho fup to hip injection and PT (decide next step)

This weekend my older nephew is spending the weekend and taking him along with sister and her family including my 4 yr old nephew and 2 month old neice, older brother and his family swimming which should be fun no doubt!

Otherwise current things being worked on/and providers working to help organize include pulmonary fup to the sleep study and cardio-pulmonary breathing issues. GC wanted to see the dietician during infusion. Ordering the blood glucose (gluc) and BP monitors to track for a few months and OT/PT. Some of this just takes much wading through to figure out how to get approved and others just finding the time + the current transition between my GC and the new GC. I also saw the NP today at my primary drs office and while ive been trying to figure out what to do do there to better utilize my internal med dr while also not creating a headache for her especially given her limited time in the office I may see if the NP can help manage some of the stuff and if setting up a regularly scheduled appt say every 6 months to go over whats going on and see where we can make improvements in care would work. Not sure..

Otherwise thats about it for now - the collective bargaining bill that was put on hold by the county judge last week has been appealed to the state supreme court which also has a right leaning judge making up what is known/expected to be a majority rule for any of our Gov's wishes/bills that are disputed. This judge those is up for re-election 4/5 and is expected to now be a very tight election with the new judge not weighing in on the issues but expected to be more balanced and fair in her voting if she gets on. We just hope the bill does not get voted on before that 1 1/2 week period in the supreme court now...

Wednesday, March 23, 2011

I exchanged emails with the new GC today and will formally meet her on monday at infusion which should be nice.

It looks also like the Port a Cath placement will be April 5th though I still dont know now if it will be able to be under a nerve block so will update after that.

All otherwise for now - in this 3rd week of Lent may the grace and peace of our savior fill your heart with gladness,


Tuesday, March 22, 2011

ACP-ECP Chronic Disease Management: What will it take to improve care for chronic illness?

Yahoo Contributor Network: Website ive written for on and off which offers payment for articles written on a varied pay scale - a little income and not hard to do + interesting topics (either I chose what I write about which today was personal perspective of living with a chronic disease and life beyond this and also an article on disease case management which is where I found the above article when doing further research. -- Ive not written for the website for quite some time due to my hands but had some time today and not feeling well so wanted to accomplish something!

Another interesting blog on disease case management:

Monday, March 21, 2011

new GC

Just a quick post - my GC emailed today 1 in a series of many over the past couple weeks tying up lose ends from our last appts and before she hands me off to the new GC she works with - not a new counselor to the clinic but new to me. I scheduled the sleep study for the 2nd week of April and GC is going to try and get the script for order from my geneticist over to Interventional Radiology tomorrow to get that scheduled after having met with them last week. The new counselor if my research is right trained at UNC and did research in MPS II and III which is neat and interesting no doubt. :) Im not sure when i'll meet her formally but I think I may know who she is by sight. I pray it works into a good relationship - I really, really do. I could use another great advocate on my side who is willing to work with me. I will update when I know more.

Friday, March 18, 2011

WI Union Law on hold!

First good news in WI around our new Gov in weeks/months! Judge blocked the printing of the union law from going into affect thus school districts still have time to work out new contracts and hopefully democrats and republicans can come back to the table and come up with a better proposal! We can only hope this is prevented from going into law altogether!

In other news I met with the Interventional Radiology NP yesterday and he went over the port a cath, placement, risks, benefits and management and thought despite my cardiac issues and shunt I would be a good candidate with closer monitoring. Due to my underlying issues he would likely he said monitor my port every 3-4 months for any adverse signs and he does have a protocol he uses in patients with more risks when infection/problems do occur. He also mentioned that bc he manages long term this solves the issue that some port patients have when they go through a general surgeon as general surgeon generally place a port and then the patient is done and if a problem comes up their infusion dr generally has to manage the issues. But bc he has the IR dept and expertice (sp?) in the small chance of a problem he can do long term follow up and care of his patients. In patients similar to myself the average infection rate is around 3% and he has been doing these for over a decade. He would place a power port which allows it to be used for MRIs/imaging and other uses besides just infusions and easier feel/needle insertion. When I asked about potential risk to my shunt he stated that bc the shunt ends in the peritoneal cavity and not in the blood stream there would be little to no chance that could become infected even if the port did. My cardiologist weighted in with the concerns he had with endocarditis in addition to port infection and that my chances are greater for this but said it was my choice and if it improved quality of life and I knew the risks he would support it which was nice and good. I feel that if we didnt do a port we'd run out of peripheral iv locations and then not have a spot to do the ERT in which would mean no infusion which would then certainly adversely affect my cardiac issues so with this we are taking a risk but a sort of needed risk which we will manage carefully.

My GC emailed yesterday to say she had spoken with my Insur CM about the PT/OT, gluc monitor, BP monitor, sleep study, etc. so I will get those details and figure out the next steps.
All for now - take care,
God Bless,


Tuesday, March 15, 2011

I should put a note that I am considering moving my website/blog to here - I am not sure yet but trying it out so for a while will probably copy and paste any updates to my cb site and to here..

It has been one tough past few weeks with all of the uncertainty around the WI budget mess and not knowing what is going to happen with my parents insurance and that uncertainty plus knowing how much help my new Case manager at the insur I have had since June has been makes me worry some about what would happen if the insur does change though I will still have insur of course. This CM has been really helpful in getting things approve (thoguh Dean in general has been very good) and in getting my providers talking to each other + helping me to streamline my care a little + in some case see how I could maybe improve it. She has come a long ways in trying to understand the disorder and my other providers have really I think helped her understand that MPS is really very different that most disorders - much more complex and progressive + not always well understood and requires different approaches than alot of problems.
There has been much drama between a former friend and myself and I am learning I need to not care so much what some people think - if someone feels they need to gossip about me behind my back to other MPS families then obviously they are not a friend as I had thought and I have cut the "ties." Bc really as adults is it neccessary to pretend like we are in high school just bc of seeing differently on for instance unions, collective bargaining and MPS it seems to. It seems in the MPS community sometimes if you do not go along the beaten path and have the usual issues + the appearances of MPS that some cannot accept that you truly have the disorder. I am sorry though I wont apologize that my providers and I have chosen with some of my health issues to take different treatment paths and try different approaches - nothing that isnt approved or well known in the medical community but in many cases approaches that havent been tried in the MPS community. I dont see many of the MPS specialists other than the ortho-spine surgeon and Opthalm and so while I do have to do alot to educate some of my providers about the effects MPS has they have often looked outside the box to try and find solutions which has sometimes worked really well and other times we've had to keep trying different approaches but in the end it helps us better understand what is going on with me. I also have issues that are not well studied in MPS and so this has been alot of trial and error. My GC commented at last weeks appt that at pretty much every appt now there is a new issue or issues going on for us to try and tackle and what many dont understand is that MPS IS a progressive disorder which does not stop even with getting the weekly infusions. (these infusions slow down the disease but do not halt it).

Otherwise my GC and I have been exhanging emails in tying up loose ends with the appt and have a few things to be worked out. I also meet with Interventional Radiology thurs and will update after that.

I picked up my 4 yr old nephew this past sat and drove down to my brother and sister in laws to spend the weekend with them and my 4 yr old neice which was a blast and the 2 kids had a good time and where like typical kids on each other like magnets (which is funny bc Zander really does not play with kids otherwise and does not follow kids around probably due to his autism but him and Jordan where like glue and when they did fight they made up within minutes and where back together running around and generally having a ball. Zander slept down by me and Jordan up by her room and within 15mins of Zan waking up Jordan was running down the stairs and they where off. I spoke with my sister in law monday and she said that my neice had done nothing but talk about Zan this and Zan that ever since we left for home! Zan did really well in the car (about an hour drive) and then we stopped at my apt for a bit and off to my parents. Was really nice and really great to just destress after all that was on my mind with the insur stuff, the budget-WI stuff, the drama and with the various appts and all related to that and what I was worried about. I hadnt felt so relaxed in a while and was totally what I needed I think!! We are planning to take the kids swimming 2 weekends from now at Blue Harbor which is an indoor aquatic center at one of the hotels in sheboygan.

I will update soon - go with peace and be filled with joy,


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