Friday, February 26, 2016

Losing a lifesaver (metaphorically speaking). To accept uncertainty, it's hard.

This is the post I seriously thought about to often in the past and yet tried to not think about and yet admittedly wondered when I'd be writing it. I know this sounds weird but out of any of my Providers if there was anyone I wondered would ever take another position elsewhere it admittedly was Dr.Bragg, she's to good at what she does and yet I just had this sneaking suspicion at times she wasn't entirely happy. I hate even that I was right, I hate that she knew/knows I'd be stressed when she told me she'd accepted a position elsewhere (leaves UW the end of May) and I hate that I'm not going to have her on my Team. I am not absolutely positive about this right offhand but believe I've been seeing her for about 4.5yrs now or may even be 5.5yrs. In that time she's done between 37-40 revisions or shunt procedures which is huge and have spent a huge amount to of time in her care. I don't say it lightly  when I say she is as much like family as is some of my own, I see her more than I do some of my own siblings. She and the D6-4 Nurses  and her Team have made some difficult times a bit easier. I guess her never giving up and never getting upset even when my trust wavered where really big things that made me like her.
 The difference she's made for my care, in not giving up when it often wasn't/hasn't been straight  fwd or easy and just the fact that MPS Hydrocephalus issues are not cut and dry nor present in normal, typical fashion but she believed me right from the start when several before her had not. It didn't matter to her, and she said as much right when I first met her that a colleagues prior opinion that I didn't need the shunt I had at that time (the 1 and only appt I've ever walked out of) wasn't going to influence her care and she was going to try to help me. And she has, she has never given up. I am always grateful to the Nrsgn who referred me to her.

It scares me quite frankly to lose her and to not have someone like her championing my care and helping with the shunts. She got and gets what so few do, that the shunts are finicky and so very rarely straight fwd. That ICP #'s mean very little, as my 'to high' is most people's normal pressure #'s. That I can look mostly if e but she had her ways of knowing  when things weren't the really fine.

I have to admit i've had numerous Providers leave their positions, to take other jobs either in different positions altogether or in different states. 1 in a Biotech setting and some of them where hard, b/c they where great Providers... Eventually I replaced them and my care came together to be the Team it is now, which is nothing short of an amazing Team in my opinion. I've often gotten comments from other MPS/Rare disease families in recent yrs they wished they had a Team like I seemed to have. It took a lot of yrs and ups and downs but the Team I have now kind of always even made me think I was pretty lucky.  Sure it's not perfect, non is but pretty darn close!  
My Providers - the Core ones talk to each other despite being at 4 different Health Systems, if say 1 needs an MRI Dr.Bragg orders it and then resets the shunts + the result gets sent to the appropriate Provider. She's worked incredibly well with my Cardiology Team (Cardiologist and Heart Surgeon), with my Primary dr and with other drs. on my Team as needed.  Overall she's never acted like sine Dr's do and us very human meaning she's the Provider anybody would want on their care b/c she actually does care and tries her best to help, to make things better. She's never given up and is cheering when things do get better but then picks right back up if things get worse again. 
I've said for a long time, she's been like a cheerleader of sorts for my care and overall, advising me, helping me and wanting to help make things better when/where needed. She isn't in it just to do surgery or make a $ but she actually cares about Patients as Patients, about learning what the issue is and making the best decision based off the info.
I have a really great Team of Specialists but how do I replace her, how do I replace the care she's given and championed and never given up on whether simple or more difficult?
 I admit I've been having a bit of a pity part or something over this bc it does stress me out worrying about whose going to take up what she's done? I don't blame her for going and hope she loves her new job but sure am going to miss her here. Not only was/is she amazing but her Secretary and Nurses (NPs, Nurses) have always been kind to work with.
I can remember before the 1st time I saw her how nervous I was, wondering if I was wasting my time given the past experience(s) I'd had there and w other and yet how well the appt went. I was still nervous she'd change her mind but relieved to at the possibility I might start to feel better. It took me a long time to stop questioning was she going to keep trying which admittedly i've felt bad about that but to really trust she wasn't going to give up. I cant say when but it's like it just clicked, she'd done all these surgeries and she hadn't stopped believing me, she wasn't going to stop or abandon me. She was human and it wasn't just a job to her? =)
There where numerous times I came in via the ER in shunt failure and she wasn't actually on call but she'd still be talking to her Residents over the phone advising them on what she felt should be done and how to manage what was going on. Last yr, not a wk after getting back from Boston (or maybe that was Providence Marathon wknd,  not even sure offhand) when it was thought my symptoms weren't a shunt issue but there was a small chance it was (it ended up being shunt infection ) she helped sort out a General Surgeon and admission and oversaw my care to make sure things got done. Once the infection was found then she organized all that to. She was gone for close to a wk during that stay but kept in touch to make sure things where going OK and probably to calm my nerves at her not being there!
She cared and more than she had to. It's scary honestly to be losing that and scary to even need someone who is that dedicated. I prefer to be able to do things on my own and manage my own care which obviously is not all that possible with MPS and so I guess maybe it's been with Dr.Bragg and most of the Providers I have now they work as a Patient/Provider Team not a 'this is what I'm doing or what I think and I don't care what you want' which makes it a little bit easier for me?

I know she's said she plans to stay in touch to and will help how she can from her new job   especially  with sorting a new Neurosurgeon (this part most scares me given her Partner has made it more than clear even after I've seen her for yrs he was glad I wasn't his pt (still amazes me some Dr's don't get that we as Patients make a concerted decision in not choosing them in the 1st place). I don't know who I'll end up following with but sure have prayed if God's will it be someone who actually cares and has a personality like Dr.Bragg (caring, wants to learn, believes me, thinks outside the box) and that  Dr.Bragg can help with this part. 
As I told a friend (and is selfish on my part) I don't want to see anyone else, I don't want to switch I wish she where staying here. I hope UW knows what a huge loss they will have!
I am genuinely  happy for Dr.Bragg's opportunity but I want her to be my Nrsgn and not someone else. I can't even  write that without tearing up which is actually a little bit sad on my part. 
I hate actually how some of these Providers do so much in our lives they are as much like family.
Sure we may keep in touch some but it's never the same as knowing that person will be there when there is an issue and knows the steps to take to make sure anesthesia is sorted and doing the right steps. Or who can step in and make sure the pre-surgery stuff (cortisol, INR, etc) is sorted correctly.
Many Nrsgn are afraid to do anything if pts aren't in outright, full blown shunt failure or want the classic failure presentation and being perfectly honest I do worry am I going to go back to having more bad than good days headache wise (or more of the days where only a small part is good) bc I look fine as I've lived w this so long I can get dressed and present at least semi normally? Those around me know how I am when it's reallllyyy good and Dr.Bragg has gotten to she can mostly figure this out but many Dr's even some of my own have little clue when I'm not feeling good headache wise often bc I see them at the better parts of the day, they don't  see nights or mornings effects.
 Shoot the difference in the couple months leading up to this OHS after we put the 2nd shunt back in even though I was dealing with significant cardiac symptoms, from a  headache standpt  although it wasnt perfect (EVDs are about all that give near or at perfect) but still albeit not perfect was sooooo much better.  I worry about not getting that feeling again now! :/
I know some other MPS Patients get this. It's hard and it SUCKS, from  my selfish part  I can be happy for her and  still feel incredibly basically feel awful about it. Ugh! Again the having to rely on someone is hard. I really like Dr.Bragg and respect her but so hard knowing she'll be gone and not being certain what happens next.

The song 'I am trusting my Lord Jesus' keeps coming to mind - I keep thinking I need to have better faith about this.
I absolutely trust Dr.Bragg will help and will be there from afar just is hard to imagine it all right now I guess. Sort of is like the loss of a lifesaver (literally a lifesaver, the person or thing you hold on to knowing they can help you to feel better )?

Anyways I am having a horrible pity party so I need to sign off and stop.
Sorry this is messy and emotional and not very great, 
Will try to be better and less emotional next update. Just needed to write as writing is a source I can share my feelings and isn't hard unlike sharing emotions in person I guess.

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