Wow, tomorrow will be surgery #14since the end of last May and #17over-all not including a few in-pt procedures that preceeded surgeries.. Yikes!
This is another of my multi-day updates so I apologise, I think ive dated each section appropriately. :)
Today I had a Pain Mngmt appt (normal fup) in Milw so I went and before that had worked out with one of my infusion nurses who is on the CHW Access Team to have her re-access my Port so I didnt have to leave that in all week. She and I met in Radiology and from there another of her access team nurses met us - this nurse it turns out is one my nurse talks about often and is married to the Director of CHW's Pediatric Neurosurgery dept and President of the Academy of Pediatric Neurosurgery (one of the top groups). My nurse had been telling this other nurse about my on-going issues and apprently talks about me alot and the other nurse was curious what was going on given the on-going shunt issues. As ive said in the past shunts alone are not a black and white business and then add in MPS with its typically small ventircles, non-expanding ventricles and of course the actual glycogen (GAG) storage and shunt issues tend to be a problem. Many people of course who have no background in shunts dont realize this and then if they have no knowledge of MPS they are going to be even more lost to why the issues are so complex. In a way this other nurse and my nurse I think thought my neurosurgeon just wasnt doing a good enough job at first and that maybe I needed to get a 2nd opinion (my neurosurgeon has continually talked to the former neurosurgeons she worked under/trained under in Utah as well as talks to and works with her partner - a highly respected person in the Hydro community on my case.) She is personable, down to earth, funny, smart and thinks outside the box which is something I didnt have on my team for to long as far as my shunt goes. She also works with and has no issue with my other providers giving their in-put on the endocrine, cardiac and other issues that play in to her surgeries and she when needed, when we've had issues has always gotten outside help, from other providers/specialists regarding new or on-going issues such as the bladder problems and talking to her Neurologist about my case as well as referring me to a Neuro-Opthalm to keep tabs on the optic nerve and eye issues. I also have heard nothing but great things about her from the people ive worked with at UW for APFAN advocacy as well as the floor nurses and another friend who incidentally saw my neurosurgeon without our each realizing the other was seeing the same provider and this friend also thought she was great to her daughter.
I appreciate actually that my infusion nurse apparently likes me well enough to talk my case over with her friend and fellow nurse whom is married to the neurosurgeon and I think this other nurse realized by the end of our meeting that I probably was in good hands and that my case just isnt cut and dry. As I say from time to time it's good to be surrounded by people who are concerned and care and whom we trust in many different facets. I realize more and more how much of an impact I apparently have made on people and how little things like this blog and my just trying to not be snide but also be informed makes many providers and many families appreciate that I am just trying to do my best too.
Earlier this week I got an email from a Dad in the MPS community who is doing MPS fundraising and big behind some of the most recent research in to MPS I and he was laying out some of the newest things going on and asking if I would be willing to be a part of advocating and getting families involved. His child is affected by MPS I as well and he commented that he thought I was someone in the MPS community that alot of families respected and whose story alot of families and individuals follow and so he felt like I could really rally troops to help get people involved. I agreed to help and while I dont know that I am a leader in this MPS I community I do appreciate that people like him and so many others ive heard from recently think I am doing a good enough job that they want me to help them and/or they just want to be able to keep reading things like this and have someone they can kind of in a sense look at for what the future might be like. There is absolutely nothing better than in-directly and directly helping others!
verb (used with object), val·i·dat·ed, val·i·dat·ing.
1.
I think and have found that provider trust comes more easily between those providers who take me seriously, who consider me a part of the team (imagine that, a patient as a part of the team?) and who listen to me from the get-go. Not that I think I am always right and not that providers need even to always acknowledge everything I might think but instead that they are willing to either 1. admit they may not know or 2. admit they may not know and will try to find out but still may not get an answer. or 3. They realize that sometimes patients do know what they are talking about and we arent all dis-illusioned, ill-informed and not willing to take responsibility for our own issues and learn about what we are dealing with.
I was thinking about this earlier today while I think I was driving and I just couldnt help but think that I have 2 groups of providers 1. the group that I feel like I could trust and although still not easy ask their help from and group 2. those few providers who are either very good but I dont know well and have never been close to (sometimes thats an ok thing) likely bc I dont see them often and thus they arent in the 'core' group or a very slim few providers that I have little say in seeing them (usually bc of what they manage) and thus I likely dont actually see them outside of the actual thing they manage and wouldnt put them in the core group of providers either. To me the core group, which I know may sound a little funny is just those 4 or 5 providers who manage the bigger issues and who when there are big issues such as a surgery going on or new issue going on I then will send a group email update to all and these are the ones who I try to get records for plus if they asked me for info for something I would really try to help. The whole reason I feel like I trust these providers is 1 simple (atleast it seems simple to me!) reason - they offer validation and they admit when they dont know. All I think most complex chronic disease patients need is a provider(s) who will listen and who will validate that yes, sometimes patients do know what they are asking about and providers who take just an extra minute to agree when they think something the patient brings up might be right or concerning (vs deny or ignore it which are the things that make me not trust a person) or that they, the provider as I said above may not have an answer for the patient but still letting the patient know they are a part of a provider-patient team and the provider isnt going to give up. Just letting the patient know the provider isnt going to abandon the patient (happens way to often) as far as finding an answer or solution if no easy answer is available or if an issue continues to occur, letting the patient know that the provider cares I tihnk is a big part of trust and creates a better partnership in which patients are more likely to try or do what the provider thinks and the provider in turn is going to generally, probably have an easier time working with the patient.
Pre-Op went well and not to much to go over since we just did this same pre-op just shy of a month ago and a month before that and before that.... Good thing this is one of the providers I do like :) Labs where the only thing that had to be done and we talked about some just recent tests + a relatively new med (beta blocker) and otherwise just the actual logistics of the surgery itself ie where the 2nd shunt will go, more about last weeks external drain, etc. That was the only thing I had going on medical wise today and so was nice to be done and headed home and even nicer to be here at home writing this. :) I was definitely exhausted today so while I got a few things done errands wise before and some cleaning done before leaving home I think bed will feel nice tonight if I can fall asleep reasonably well. Thurs., I have something else going on (fup with Pain Mngmt)and so one of my infusion nurses at CHW who is also on the Interventional Radiol.-Access Team at CHW is going to re-access my Port then which worked well so then I didnt have to leave it accessed from mondays infusion to fri's surgery and especially after having had it accessed from last week mon's infusion through to this past sat. when I got the drain out and got discharged.
This is about all I know, other things to write about but will do that at another time. Will update on fb fri night and on here fri night or sometime sat.
Stay tuned -
All for now,
Erica
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