It is always sobering reading specialists reports - I doubt they intend it but what they tell their patients and what they write in their reports is often different. My former GC once explained it as maybe drs have more time to think about what they are seeing and so unintentionally change or add to their opinions in these reports forgetting that they've told their patients something different. Once I heard that logic it didnt bother me much but it still doesnt make it any less sobering some of the time! One of the comments while my Cardiologist and I have talked about it, to see it in his most recent report was just one of those sobering moments. I wont worry about it endlessly but like I told my Cardiologist im human and that doesnt mean these things dont bother a patient at some point! Here are some of the comments from the report amd above are the cont'd and new findings:"Not an ifeal surgical candidate- continue to monitor and watch until symptoms continue to progress and no longer manageable or stenosis and related issues worsen. Maintained on current medications until then" - diltiazem long acting and lasix for cardio-pulmonary symptoms management. I had asked if we needed to change the cardiac meds I am on to slow this down not really thinking about the fact that it is the MPS storage causing these cont'd issues not otherwise 'normal' cardiac changes. Some of the changes are listed below - these are a combination of the MPS damage and further progression (ERT has not halted this area) and the congenital aortic valve issues.
Moderate Left ventricle hypertrophy
Severely dilated left atrium
Moderate aortic stenosis and Moderate Mitral Stenosis
Moderate Aortic insufficiency
Heart rate typically mid 90's to 105' range most of the time while blood pressure quite low at typically 90's/60's and often 80's/50's.
Abnormally skipping rythms but not more than a couple extra or skipped beats and mostly controlled yet. Increased heart rate is really the annoying one but even that is a 'more my normal' bc it has been years now so not as noticeable as it once was.
A theme of the past several year ends and new years; i'll never be the 'perfect' patient as I know full well I am too stubborn and want to be involved in my care (I dont see that as bad) and admittedly I can be kind of opinionated. I dont intentionally try to be but sometimes realize it or not I just am.. This year has definitely brought alot of new changes and some answers to things I long suspected but none of my drs or I could not really get answers to. The biggest issues have been the shunt (but im so grateful to be able to write this with definite noted improvement in my headaches other than the 1/2 a dozen times a day where the pinching-searing type sensation occurs and despite the vision stuff. ) and having found a neurosurgeon who really listens, really seems to care and goes out of her way to make me realize she isnt leaving. Related to the headaches and shunt of course have been the parade of surgeries but noteable during most of these including now is the periods short and longer where I did have much symptom relief including mid-back pain completely went away when LP shunt was tied off and subsequently taken out last month and constipation is so remarkably improved as is the headaches themselves. Low back pain has cont'd to be a pain literally whether related to not quite enough pressure/fluid being drained (Dr.Bragg's thought) or due to something else remains to be seen but on the other hand with the unexpected lumbar spine lamiectomy (bone removal) during the initial LP shnt revision in May and nerve bundle repair and the resulting side effects but continued healing of those said side effects has been while not lovely I can and do atleast appreciate that the symptoms ahove cont'd to improve! Id of course have rather not have had the complications in the first place but know and recognize in MPS much worse could have occured. Ive said it before but if that area needed to be decompressed im almost glad it was unexpected as then I had none of the pre-surgery spine stress to deal with and I know Dr.Bragg can manage these issues for me.
Other changes included to my Neurologist leaving my team and consolidating this care w Dr.Bragg managing all neurologic care and if needed she will consult the neurologist she works with on her complex shunt pts and whom I met previously prior to the VP shunt placement a couple months ago. And as well change in my Genetic Counseor of which has had the most impact in care and for which I now have a new GC but mostly dont have alot of contact with this group other than for infusions weekly and that is limited contact. Sometimes it does honestly feel like the more you do as a patient for your own care the less particular providers do in general be it to try and help find an answer or to a specialist, etc. That is the one thing I miss about my old GC she and I sure may have had our differences but she was ingenious at finding the good drs and getting things done. I have not one single idea how to remedy this.
I tihnk what I most hope for the new year is to continue to have opportunities like with Genzyme project (which we are modifying but cont to work on) and with what I do with APF. Both are so patient in my less than perfect ability (especially with APF) to be as involved as some leaders are in APFAN's outreach. I love what I do with this organization and pray in the new year I can cont to have the energy and time and strength to give and pray even that I may do more than I sometimes was able this year. I pray for good decision making in my care and the ability to cont to make decisions for myself regarding who I see and where. Related to medical care I especially pray I make good choices on who is and who is not involved in my care team and who if anyone of my providers I should make changes to.
I dont know what this year will bring but I do know I can decide how I react to whatever these things will be when they occur and I am going to try to cont to react in a cool=headed way that allows me to make good decisions, receive good care and not be a barrier to my own in-put. I dont knwo if that really makes sense but I guess really I just hope to keep being calm under fire and do a better job of caring less what others think and doing more to soeak up for myself or ask the quesitons I sometimes want to ask but dont.
I hope the New Year brings new blessings for your families and I pray it brings memories big and small!
God Bless,
Erica
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