It has been another long while since I've written here. I update on fb but not very good about coming here to update. Sorry for any who read this and aren't on fb!
Not actually a lot to update really. Still struggling with the ever annoying, ever increasing in size parastomal hernia and ostomy. I saw my General Surgeon the other week who then talked to a colleague of hers on the colorectal side and saw that dr. earlier this wk. This 2nd opinion was very nice but clearly very skeptical to do anything with the ostomy prolapse and hernia due to my underlying MPS I and the cancer. Honestly it is very frustrating when drs. repeatedly go around to how this cancer will be terminal and she wasn't sure fixing it would help longer term. I do understand this thinking but feel quality of life is important in the grand scheme. She in turn talked to Dr.Henkel who sent me a mychart msg today.
The plan is after I have the CT Scan for Oncology and see him then my General Surgeon will talk to him, see what his thinking is and if stable (please God, I beg that it is ) she said we could discuss how to deal with this. I pray (as much as I don't want surgery) that we can somehow fix this and make it less noticeable and thus also the ostomy not leak so much. Please pray if you will.
Otherwise I saw Rheumatology last wk and restarting the humira (was my decision to stop it for a little while). The benefits are worth the small increased risk for infection and heart failure so this should perhaps help the seeming increased joint stiffness.
I see Cardiology next months with Echo. Sadly my Cardiologist (for 11yrs in August :( ) has left CHW and moved to a new practice in Chicago (where he is originally from so I was not to surprised even if it stinks). I am seeing 1 of his newer colleagues; Dr.Gerardin who trained at both UofMn and Emory - 2 MPS treating centers. I've emailed with her numerous times since she has been at CHW re our mutual interest in MPS and see seems very nice so I am hopeful she will fill Dr.E's very tall shoes! I will definitely miss working directly with Dr.E's nurse (Jane) who is woeking w/other Cardiologists now. There where concerns for R heart failure and some other pulmonary-heart issue on last scans so hopefully that isn't a big issue (but no one seemed overly concerned so maybe a good thing).
I say it every time but will try to update again sooner then this last time!
Thanks for stopping by,
Erica
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