For whatever reason God must think I am pretty bad ass and strong or something (I am 1/2 joking) that he'd give me this mitral valve challenge not 2.5yrs after I went through not 1 but 2 open heart surgeries to take out and replace the Aortic valve and to enlarge the aortic root?
Non-the-less, challenge accepted and I know whatever God's intent he is with me every step of the way and I am not going to question why he does the things he does nor when. I am instead grateful that God has given me the faith I have in him, even if it is shakeable and sometimes (probably) a questionable faith on my part.. I am grateful God has given me the Team of Providers (purposely capitalized those 1st letters) he has, that he has placed these Providers in my life and that God is with me through each and every struggle, storm and good moment I have..
Per today's Echo the Mitral valve had again worsened, which this is the 3rd time within a year the gradients have changed. Dr.Earing, my Cardiologist commented they could not get a reading (or good reading?) of the Tricuspid valve measurements and I think there was 1 other area though that I cant remember for sure. The Pulmonary Pressures where already high/increased back in summer so none of it is a good sign nor good for me in general.
He commented, if it where any other Patient of his, he'd have recommended a open heart surgery-valve replacement already a year ago but given I have so many other complicating factors (lung issues/breathing, joint issues/arthritis type issues, the autonomic issues and endocrine issues + the headaches he wasn't in a hurry to go to surgery as 1.We don't know what of your symptoms this will help, though I do think we need to do this'. and 2. 'I know you would tell me when you got to a point you thought we needed to do it and symptoms where to bad, I trust you'. (my paraphrasing). Heart rate today was unusually high compared to how it has been though no real good answer why that is. I am hopeful once this MVR is done and things stabilize, given they keep heart meds for awhile if they in the end would decide to keep anything that they would keep the Ivabradine over some of the other heart meds but we'll figure that out as time goes on. Heart rates in general have been improved on this med, minus today and some days. It hasn't really helped overall breathing/heart symptoms but I have to say in general having a even slightly slower heart rate has been nice!
Timing wise, Dr.Earing has already talked to my Heart Surgeon after I left today, the same dr. that did both prior OHS (with this one I plan to ask more questions and have a better plan in place, have asked if I can meet with Dr.Earing, Dr.Mitchell and with Dr.Taylor the Anesthesia dr. if she is able to do my surgery before the OHS day so we have a better plan in place for after). - I know last summer when Dr.Taylor did the anesthesia for my Heart Rhythm Study and Heart Cath she said to me she wondered if we did end up having to do a 3rd OHS if we should follow a longer intubation/sedation after any surgery and would that make recovery in the initial days easier than it was after the 2nd OHS (1st OHS initial days where easier than was the 2nd OHS though I admittedly don't remember it well). After the 1st OHS they kept me sedated and intubated for 3 days and after the 2nd one they extubated after 24hrs. + was a much more difficult initial recovery.
I am not sure but want to make sure these sort of things are ironed out ahead of time and a plan in place.. I'd also like my Heart Surgeon to talk to me atleast once after the surgery, I feel like you get the best information regarding a surgery a Patient has from the Surgeon who does it..
As far as the actual surgery goes we have time to plan so are likely not looking at doing the MVR replacement till Jan or Febr. after the holidays. This in order to give everyone time to plan and get the best plan in place. Per Dr.Bragg who I got a message from late this afternoon, Dr.Earing had already called her (I knew he was trying, Dr.E's Nurse Jane had called me re what to do with my Coumadin dosing for this wk as the level was pretty low despite being back on it for over a wk. and I'd forgotten to ask them what to do a the Appt.) Jane in turn after telling me what dose to take for this wk and when to re-check again asked for Dr.Bragg's #/best number to call (I hadn't thought to give it to them but gave her Dr.Bragg's Secretary who is amazing) and he must have called her right away and reached her.
They in turn must have talked and Dr.Bragg said Dr.Earing had already talked to my Heart Surgeon who felt we wouldn't need to move the VPL Shunt for this OHS. I admittedly am surprised by this but also happy! I am going to talk to Dr.Bragg more about this on Thurs at my Post-op f/up but if she's comfortable that is great and takes 1 complicating thing out of planning the OHS/getting it scheduled as we'd otherwise need to schedule the VPS move, wait a month after that then do the OHS.
Dr.Bragg also said in her message we could turn down the VPL Shunt at the f/up appt which I think will be good, my scatter brained-ness I am hoping is just bc pressure is a little to high! Today for instance I would be driving and kept thinking I was going the wrong way or in fact 1 time did follow a car the wrong way which not a huge deal, just meant back tracking but seriously! This on a hwy and route I have taken hundreds of times in the past 11-12 yrs! This or like figuring out what time I need to leave to get some place, I literally, no lie but have looked at my phone and alarm and reset it atleast 1/2 a doz. times last night and then still looked at it 2-3 times this morning figuring out what time I needed to get ready and leave. I mean seriously, how stupid but also almost funny bc it IS so stupid! My brain is like up and left the building 1/2 the time!
Anyways so regarding the OHS for the mitral valve I should hear tmrw (Weds) I guess or this wk and can decide when I want to do it. Definitely not before the holidays and most likely Jan or Febr. This means having to get someone to teach my Sun School class for a few wks but i'll sort this once I have a date picked out.. Apparently Dr.Earing wasn't aware I still teach SS as he said to me something along the line 'I didn't know you worked with kids, I'm not telling you not to do it especially if you enjoy it but the germs especially in your case aren't insignificant', lol. LOL =)
Dr.Earing when talking about the continuing, fairly fast progressing changes on the Echo and how unusual my valve changes/appearance are commented how he still wonders if some of my heart/heart valve issues are an Ehlers Danlos/Connective tissue dx in addition to the MPS and commented while he wonders this he has never seen my particular valve issues in any other of his (many) EDS/Connective tissue pts. but noR has he seen my particular valve issues in any other MPS pts. He was glad we're doing the gene testing although cautioned (which I already know) how much time this can take to get answers give it is a research study. To that I just said if it eventually gives another answer, great and if not we've not really lost anything. What matters is we just do our best to treat the issues as we can..
Otheriwse I am not sure what this MVR replacement will mean Coumadin wise. I think if I am not mistaken it means having to do Lovenox/Heparin injections anytime we'd have to go off Coumadin or anytime INR (blood thinner level) is low but I am not entirely sure and forgot to ask. I have to recheck INR on Monday so will ask Dr.E's Nurse, Jane then when they call with the new level. I know in some cases pts. have to bridge before surgeries or do other measures so I am a little curious.
Will update when I know anything further,
Thanks for stopping by,
Erica
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