Tuesday, April 23, 2013

Appts (Urology, Cardiology) and people who get it..

This has been one of those updates written over the past week, my apologies! I'll try to make this make sense and label the appropriate sections which are recent and which are older. The Hand surgery which has been cancelled and re-scheduled numerous times over the past 6 months has been put on hold either indefinitely or atleast until we can get the breathing stable and secondary (primary) heart issues ironed out. In addition to normal (ERT) infusion yesterday I had Urology this morning in Madison and have Cardiology w/Echo before-hand on Thurs back in Milw at Children's.

This morning (Tues) was the Urology Appt which is another appt ive been rescheduling for the past 6+ months due to all the shunt revisions and in-patient stays. This was a new specialist as I had to switch from UW where my former dr was at but today's dr seemed pretty nice and knowledgeable about neurogenic issues. She has ordered repeat testing (urodynamics) and a camera imaging study which is used to visualize the bladder and areas to see if she can get any addt'l ideas of how best to treat my issues which is a combination it has been believed of neurogenic bladder secondary to spine-nerve signal dysfunction (not sure if that's the best way to put it) and thus the signals to the bladder don't always work properly. Right now we are just increasing the one med dose and may add an addt'l med or there are a few other newer options as well she mentioned.

The Cardiology appt I think (but am not certain) we'll discuss the changing breathing issues and fluid retention and maybe start making a decision where to have the valve replacement surgery done at? It is between the 3 and 6 month time frame my Cardiologist had hoped to be able to wait since the last shunt infection and the shunts while neither perfect are atleast working and some symptom relief and far better than it had been for along time which i'll take! So in other words I dont really know what to expect at that appt. Hopefully he will have some suggestion on being able to feel like I can breathe a little easier? I hope! I think my PCP when she had talked to his partner was hoping they could just advise us how best to proceed w/managing the symptoms till we do figure out where the valve replacement(s) will be done and when.

Earlier last week..
I keep thinking about how at ease it is to be around others like this past weekend (a little over a week ago, Boston) who just get it, who either because they work in the field for some reason seem to understand or because they themselves are also deeply involved in rare disease either because of themselves being affected or more often because their child is affected by a rare disease and even then it isnt every parent or every individual in the rare disease community, it is only some. I think after you are home for a while you almost forget how nice it is to be with others who also get the struggles, the frustrations, the time and the effort you deal with related to having a rare disease but as soon as you are back in the midst of people who do get it you feel 'at home, at peace' and the first few weeks home are actually a little lonely in that regard. You miss being in the midst of the people  who do just really get it and who dont take alot for granted. =/ As with anything you adjust and you jump back in to normal, busy, crazy life filled with phone calls, insurance, appts, paperwork and all the other activities one might be involved in but in the back of your mind you wish a little bit you could bring those people to you or you to them more often!
I definitely am so glad I went this past week to Boston though especially considering I was initially uncertian if I wanted to spend the money and I wasnt certain if I would feel up to it and really I was deciding at the last minute whether to go or not, even though I had known for several months that I was paired for the Genzyme running team and had 'met' Jess a couple months or so ago. One of the best decisions ive made! Thank you D6-4 (neurosurgery) nurses for convincing me I should just do it! (I had been talking about this trip a month ago when in-pt after my last shunt revision and about being un-decided if I was going to go or not.  There is just nothing better than being with others who just "get it" and when I am w the folks at Genzyme I often just feel so at peace, in a way I cant explain but it's like you dont have to explain how you feel, what your feeling or be anything except you! And having a rare disorder isnt unusual to them, although they dont have the disorders themselves they still seem to just get it.. Thank you so much Jess, Jenn and to the rest of the team for such a great weekend filled with so many great memories both at Genzyme and around Boston as well as on Marathon monday. I hope to be back next year!



I wonder how many others w MPS I are asked if they ever think about how MPS I will affect them down the road? If they are ever asked "do you think about how MPS or it's affects will likely be what causes your death in the future?" I have been asked this by providers not with ill-intent but because they are concerned I suppose about if I think about that MPS is a chronic and really potentially life-threatening disorder which will likely be what causes my death someday. Honestly though I rarely think about this other than occassionaly in the context of the heart valve replacement surgery which my Cardiologist has said he thinks will be difficult and I admit I am not looking fwd to and frankly scared about..  So those sentiments have been on my mind a little on and off but at the same time I think or atleast I believe I have to put my trust in God, a God who knows his plan and the plan he has for me. I have to trust whichever drs we ultimately decide to have do this surgery and I have to trust that whatever the future holds it will be ok and I will be ok. I admit to worrying at times about losing my ability to be on my own and do my own thing though, I cant imagine if I ever had to rely on someone else. God help me, seriously if that where to ever happen! In God we trust, right?

We had our last sunday school meeting of the year last week, Joan, my co-teacher and I have decided to co-teach again next year though I let her know I will likely be having the open-heart surgery valve replacements either this summer or fall and may again miss some of the class weeks but also said if needed I could arrange a short term sub. She was fine w this and we both agreed we just seem to make a good teaching pair for our kids. I taught sun and have (I believe) 2 more sunday's left, Joan also has 2 sunday's left.

Other than this all saw Pain Mngmt last week and have a few newer med options we may try down the road, was a long-ish appt but we are keeping meds the same for now. Most of it was spent talking about a mtng my PM dr was at the weekend before and updates she was sharing with me. Potentially scary changes coming down the pipeline. Always good to talk to her, hear her news from what she is involved in as she is fascinating and so full of information + geniunely interested in my care.

Will update sometime after Thur's appt.,

Erica

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