So this whole basic blog is more or less a vent; bc I am tired of people thinking my venting means either A. All I think about is medical stuff/I have no life outside of MPS or B. That my working for the rare disease foundation/family is somehow a bad thing bc I am doing yet more around medical stuff. To point B I say, really? If those who say or think these things really knew me they would know I have always wanted to work in the healthcare field as a Nurse or something related since I was a little girl! This job is a perfect blend of being able to make some extra income while working part time and still be able to deal with all the of the often very never-ending medical issues (having to manage all the paperwork, insurance issues, appt scheduling/trying to coordinate and the family I work for who runs this foundation completely gets MPS on a personal level so they are sooo flexible!
Does it really matter what a patient does for a job as long as they are happy and for that matter the job doesn't stress them out or affect their ability to function? NO! It sure shouldn't! This is what I enjoy so to be perfectly honest it completely baffles me that people who say this stuff probably barely know me but apparently think they do and think they have the right to judge my happiness bc I happen to have a rare disorder that does consume a lot of time but then I also chose to work within this same disorder for multiple reasons including it is what I enjoy and it does make me happy (being able to help others, being able to see/review what is coming down the pipeline for possible treatments for MPS, often communicating with researchers, etc.
Earlier today I am not sure where she got the information of who even told her these things but an OT eval was ordered (which was fine) and she was asking questions though I do think it is curious why drs don't tell their pts what they are thinking or their thoughts behind orders/evals? One of the several things that made me raise an eyebrow was her comment how "my parents are my only or major support system"? I asked what made her say that to which she didn't really have a response other than info that was apparently given to her. Anyways, I explained to her that my parents are who come with me to surgeries and are the main visitors I get but that I have a large and varied support network at home between my church, my fellow few MPS Adults and parents of MPS kiddos as well as I do have provider's who check in with me on a regular basis (Pain Mngmt especially) and perhaps a important detail to me is that I am not one of those people who likes to be surrounded by people all or even most of the time! Instead I prefer either to spend time w my nephews and nieces or at my Apt reading, writing or doing whatever I like in the peace AND quiet! I pointed out that I write about my MPS experience but as I've said all along I had wished often when I was first diagnosed w the MPS that there was some other Adult w MPS writing about their journey/path so I could have followed in order to give me an idea on what I might expect or what I might do differently to make my care back then be more smooth. My blogging now and my main use of facebook is to share what I am experiencing so I can hopefully help someone else in the same or similar shoes I was 9-10 years ago! Judging by the many emails, messages and pm's I get I think I am able to do just this in helping others both with MPS and many times people w Hydro who are also thankful for an honest, open perspective. I just don't think that I have to share EVERY aspect of my non-medical, personal life and that much of my personal (and boring to most I would think) life is in a way or as much as it can be separate from the MPS/medical stuff! It drives me crazy that people "think" they know what I am feeling or thinking or that they assume they know how I feel about procedures/surgeries or issues. If I wanted people to know how I feel about something I would share (and often do, atleast partially) but some things are just mine and not everyone's business.
Friday TPL Shunt revision/Change
Sorry for the delay in updating here regarding Friday's (very!) early but seeming successful Thoracic Pleural Shunt to Thoracic Peritoneal Shunt revision/change. I am actually glad surgery was the first case and although I felt like I was (again, seems the theme of the week) in a daze all week it was good to be done early. I tried napping several times but everytime I would do so i'd end up with nausea, headaches (all intermittent) so taking a nap was never a success. I fell asleep about 10:30 tonight but the IV pump began beeping about 11:30; of course! I am sleeping fully upright so am hopeful I won't end up with a super sore upper/mid-back in the morning. Dr.Bragg had said in pre-op this morning the Reps (or herself?) had the new Codman Hakim valve set at 70 so we had plenty of wiggle room to go up or she felt most likely go down in order to drain more fluid.
Surgery itself went well; haven't had a chance to talk to Dr.Bragg (another surgery; told Dad she would stop by this afternoon) but as planned the TPL shunt valve was changed from the Strata valve to the Codman Hakim (same as VP shunt) and distal end now re-routed via a 'Y' (?) connector back to the abdomen. A-line placement went ok, anesthesia went ok and PCA (pain) line connected.
I asked Dr.Bragg if she thought down the road it would be an potential option to re-replace/convert the current (changed for the cardiac valve surgery) TP shunt back to it's former TPL placement (thoracic pleural) as I had good results with this + stomach spasms subsided to virtually complete improvement (85% improved i'd say) after Dec's change. She said that this was a definite option and one she was not opposed to considering down the road if need be. (so thankful for her open mind and that she doesn't discredit my questions or concerns!!) The blood thinner (coumadin) will make future surgeries more tricky but not impossible so I am grateful she will con't to help down the road and after the CV surgery!
Dr.Bragg's Nurse and I where working on the Aldurazyme order earlier this week for Monday so I believe they have the correct dosing/mixing instructions from CHW (slight change from last in-pt) and I think the plan (which could have changed I imagine) was to order today (?) once I was on the official hospital census.
My Stomach/abdomen and side are somewhat sore (worse w movement) and thoracic (mid-back incision) area is much like a knife digging in/being twisted + do have a on/off headache (we have room to turn down the setting, could partially seem worse due to being so tired) but other than being tired I am glad all went well and glad as usual to have provider's like Dr.Bragg who care/listen and are open to my thoughts.
I'll update again when I know anything; I had emailed Dr.Mitchell the Cardiothoracic Surgeon earlier re a CV surgery and the programmable shunts questions + he responded. I do have to get alittle info from Dr.Bragg as he wasn't to familiar with the programmable shunt valves.
Thanks for stopping by,
Erica
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