Busy day so i'll just jump in and start from the last appt which was Cardiology on down. Rcho was done first per the usual and saw my Cardiologist right after (adult congenital) who said there continues to be progression of both the aortic and mitral valves as there has been for the past 2 years now. We do 6 month fup appts and Echo's and it seems there has been some progression in atleast 1 area in every appt since around fall 2009. I asked some questions but of course didnt think of one that I wonder about now - we are on diltiazem (a calcium channel blocker) and lasix and have been for about 1 1/2 years but if there continues to be this progression I wonder should we re-visit the dreaded beta blockers. Ive tried these in the past, a couple different ones and felt terrible with each med we tried (even after several weeks when ones body is supposed to adjust and the fatigue should improve) so thus we went on the diltiazem which my Cardiologist uses although he doesnt love it for my particular issues (but has less side effects, it just increases something with afterload pressures on valves/heart). I wonder now would something like the beta blocker be less aweful since so many other non-cardiac symptoms are under control. I dont know. My Cardiac issues currently stand at: Moderate Aortic stenosis and mod. insufficency/regurgitation, Mitral stenosis-moderate and mild insufficency. Moderate Atrial enlargement and Pulmonary Venous Hypertension. I fup in 6months but of course can always call or email them if I so desire with my question. For now I think it's fine. Concerns are if breathing issues worsen (Atrial enlargement/PVH) and if sporadic abnormal heart beats would increase to much longer occurences that uncontrollable-longer lasting (changed) shortness of breath occurs with this.
Also had Pre-op appt this morning w/labs which was fine, since this is only the 3rd or 4th pre-op appt in the last 5-6 months for the shunt nothing unexpexted. My PCP was just going to verify with Endocrine dr that cortisol dose should stay the same for this next shunt surgery and talk to Cardiology to verify all was blessed there. We talked about providers and how it seems to be working a bit better with communication and having Dr.Bragg manage the whole neurologic issues (vs having my neurologist) is probably going to work quite well since she is so thorough and also has the Neurologist she works with when it is an issue she isnt sure of. PCP asked how I cope with all this as she said she has concerns when especially younger pts have to deal with a chronic illness and in my case she just said mine is so overwhelming seeming because so many different specialists and issues and concerns to manage. I never really have a good response for that question because what choice do we have? I dont really believe in the 'God doesnt give you more than you can handle' chain of thought but I do think you either sink or swim. As long as I have providers who incorporate me in decision making (and this has gotten 10x better with addition of new providers, although not perfect) and welcome my opinion or concerns and I can have say/control in when things occur (appts/tests/surgeries when possible) that makes a big difference so I can still have a semi-normal (to me) life. I am surrounded by family including my nephews who remind me to be resilient - Zander especially at 5 years old dpesnt stop just bc of the craziness autism brings to his life and his chaotic, unending schedule (insane for a 5yr old) and so I joke that when I need a reminder there is plenty of good around to I just go visit Z or other nieces and nephews. I also have a community of MPS friends who although I rarely talk about how I feel with this all (to anyone) I know some of these friends get it and I can get advice there on the medical stuff. And really it's not about me, it's about making the best of what I do have. Doesnt mean im perfect just that we have to make do with what we do have and can change.
I talked to Lisa at Dr.Bragg's office as I had asked how would we know the infection was gone since I dont have symptoms and she said the particular strain of bacteria (P.Acnes) is susceptible to the antibiotic I am on which crosses in to the CNS very well and wouldnt be able to survive it. If we where to only do the antibiotic and no shunt removal then the bacteria which will maintain to the side of the shunts would grow back but removing the LP and VP shunts eliminates those variables. She also said they would do maintenace dose of the Zyvox (linezolid) after surgery I guess although im not sure how long. I also asked to double make sure if the hardware in my neck was fine and she said because this sits outside the CSF that it will not pose a problem which is good news!
My thought of the day is I wish I was one of those people who could instantly think of questions the minute information is presented to me especially from medical poviders - but im just not. Doesnt matter if I write questions down because frequently questions change based on new or changing information from providers. I usually am so busy processing and I suppose figuring out what if anything new information means that I just dont think of the questions I have. Thus I envy people who can instantly think of questions!
More soon,
Happy Thanksgiving!
Erica
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