I started writing this entry the other day, before today's Appt with Dr.Bragg, to have some CSF (spinal fluid, what the shunt drains) taken off. I saw the above quote on a page I sometimes visit and thought it was pretty appropriate (AND true)!
Anyways so I did see Dr.Bragg today; after chatting some about the dates she'll be out, about setting up a few more appts to have her take off some more CSF (intermittently, gives short term therapeutic relief) to get by till we have surgery to put back in the VP Shunt. She tapped the LP Shunt reservoir which is not painful and pulled off the amount of fluid she is able. It isn't a lot but it does help, almost like a 'parting of the clouds' temporarily.
I didn't feel terrible while seeing her but it's still a noticeable difference on my part after I get up from the table - truly like my head clears and best of all, weirdest probably of all, despite there being some nerve irritation in my low back as fluid is being pulled off (nothing that would make me respond in a way to make the pulling discomfort noticeable to anyone else I don't think) the residual back discomfort that I get (much improved nerve irritation since we went back to a Codman Hakim valve but not as good w this mini Codman version of the valve as it was w the full sized valve which perhaps that sounds weird but for whatever reason it's true).
In any case the residual discomfort that is there, worst with sitting was completely gone on my drive home and has cont'd to be good tonight! The headache relief wont last as long as the back relief but it's as if it all combined gives my body a mini break, a break i'll gladly take given the shunt taps themselves minus that nerve-pulling sensation don't hurt.
Surgery itself was switched to the 12th instead of the 10th, her Secretary called today to ask about switching the day, and explain why they needed to. Originally it was going to have to be the following wk, the 18th (or 1 of those days) as I didn't want to do the 1st wk of Nov. given Dr.Bragg will be back for a few days and then out for a few days again. This 2 day change does mean having to re-arrange a few things but being perfectly honest I feel like this is what I do constantly so what's a few more calls, right? I'll survive, I just can't wait for the shunt to be back in!
On a totally different note, I wrote this earlier in the wk, a friend had written something related to her daughters surgery and I was overly tired which is when I tend to reflect on the shittier side of all we (MPS pts., rare disease pts., chronic dx pts.) deal with. -
Honestly I don't know what made me think about this, perhaps reading a friend's post about her daughter, w MPS I facing more surgery and the uncertainty at times of what decisions to make. Thinking some lately about the heart stuff, the shunt stuff but especially about the heart/lung stuff and although I don't let it stop me how it does sort of hang over every other aspect of my medical care...
I kept thinking about that night, it's shitty we have to sign these consent forms pointing out the risks of our surgeries. Crappy we have to sit in our drs. offices and hear the risks and how high risk we are for surgeries but how these surgeries are needed for better quality of life. We consent to these surgeries and procedures, yet we know they may not always work.
We spend so much time on the phone scheduling, coordinating, dealing with insurance and many people, who have no clue assume our lives are so easy b/c they have no idea the amount of time all of these things take on top of the amount of time we spend driving to, sitting in and talking to/working with our Providers.
How despite this all many of us still try to be involved in things that have nothing to do with our care (or in my case a combination of advocacy, my work w Gene Spotlight and outside interests in-related to MPS). How sometimes we're so exhausted it's literally a fight to pull ourselves out of bed, in to the shower and through the task/activity/mtng at hand b/c we just want to sit down in the chair or crawl under the covers and sleep and yet we (I atleast) feel guilty if I don't go to whatever it is I have going on so I go.
How we often deal with nausea and headaches and pain while we go about the 'normal' things we do. How cracking open a med bottle, opening up a thing or 2 or more of nausea med to prevent from throwing up while trying to focus on the Church service or Sunday School class or whatever your doing with family or friends that day and yet most have no clue (and sometimes that's ok).
How many people assume your abusing that handicap parking spot "because you look so normal", "do you know that's a handicap spot " and all you want to say is 'no shit asshole' but you don't, instead educating (lecturing sometimes) the person on not assuming, on what MPS is, etc.
We know chances are if we do opt for a surgery it may or may not work and if it does work, initially we may come out feeling worse or more discomfort on 1 hand (although if goes as planned we may also experience relief on the original problem) until our bodies heal.
Some surgeries are easier than others, the ones that seem like they should be the hardest (OHS?) albeit difficult at 1st tend, at least for me ultimately to have a quicker recovery than others.
How you feel guilty when you don't feel like your recovery is going as quick as those around you seem to think it should? Still on that pain machine? It's not my Providers who I feel guilt from about this but oh do I feel guilt sometimes when in-pt, as if I am supposed to heal according to someone else's well set plan.
I don't think people always get, while some surgeries are pretty straight fwd and small, the surgery itself wreaks havoc often on an entire MPS pts body due to positioning and other factors.. I don't think family or friends or Providers mean to make pts. feel guilty but sometimes unintentionally it happens. Believe me, as pts. we wish we could heal faster to and feel more normal faster to!
When it comes to surgeries we hope by signing these consent forms, sitting through 1 more pre-op physical, 1 more "these are the risks, this is what we're going to do" that we make the right treatment choice. We hope (pray!) we get the right Anesthesia 'Team' (if we're lucky as difficult airway Pts. it's someone who has had our case before) and who takes the time to work w the whole "Team" to make the best decisions for surgeries or procedures that bring us through safely w the least amount of issues or hopefully no issues.
We hope the entire "Team" works together, truly as a Team for our care to make surgery/procedure or even just care the best it can be.
As medically complex, complicated Pts. we just want Providers that care and when really lucky albeit no pt. (including myself!) really ever wants to need a Provider or Providers time so often they become as familiar w you as some of your own friends are, if or when this DOES occur you want the type of Providers that truly do care enough to care about you as more than just a diagnosis they have to treat. They know you as a person with outside interests and likes and want to help you succeed in life...
In reading some more about the Ivabradine (Corlanor) I was curious about some things to do with it. I learned a little bit, some things I knew, some things I knew where my own Cardiology Teams wishes for the drug and other info I read was just interesting.
Ideal Heart rate is between 50-60bpm. On average, recording HR via an app on my phone daily the #'s have been low 80s to low 100s w an occasional mid-70-80s heart rate.
So far, at least thankfully no side effects on this new 7.5mgs dose adjustment. Thankfully also the med when I picked up the new script came as a 7.5mg pill so while I'll split my old pills to use them up in the future will be nice to not need to use the pull splitter on these!
The only others med I have to split some days is Coumadin (I have multiple different strengths of the med) but those are easily split by hand even w limited hand/thumb strength!
From reading the Ivabradine (Corlanor) website they list 7.5mgs as the maximum suggested dose though apparently my Team has seen 10mgs used in some HR resistant pts.
Lastly, last wk Dr.Kovach had said I guess to let him know if there where any issues or no changes in 2wks (would be next wk) and the website also suggests any dose adjustments be done at 2wk periods.
I love the 'super hero' shape >
Sunday School Class
Just b/c he's so cute =)
Kinked catheter from prior to 2nd LP Shunt revision 9/24 -