Cardiology Fup, OHS- Aortic Valve re-replacement, Last wk's Fup w Neurosurgery.

Well, wow? What a few days filled with way to much news? Yesterday I saw Cardiology for the 2 week fup, Labs and repeat Echo (ultrasound of the heart). Not the best news. The Echo continues to show increased leaking (perivalvar) around the new mechanical valve and is to the point now where the leaking is severe.  Dr.E (Cardiologist) said he could hear the difference even more so while listening to heart beat/rhythm and pulses in wrists/feet where much more palpable as well he had concerns due to my hands being so cold - to that I just said if they would turn the AC down a bit we all might not feel like we where artic frost! Kidding aside this is crappy news and not what I wanted to hear although at the same time I said to him and Nancy (NP) that I also didn't know what to "wish" for? No changes but know they expect there will be worsening as it had continued to and just a matter of when? Or wish for changes but know it would mean having to go back in and do most of the open heart surgery (cracking chest, bi-pass, anesthesia, new healing, etc) again fairly soon (next week already it turns out) but then know at least we would be only a fair amount of weeks away from being able to place the current Thoracic Peritoneal shunt back to it's former (pre-cardiac surgeries) location in the Pleural space? No-win really and not a decision that ultimately no matter was or would have been up to me anyways. I guess I got my "decision" made for me by my body anyways although I admit I was pretty surprised when the CV Surgeon's Secretary called me already Thurs afternoon, not long after I had left the Appt and said they where scheduling it for Tues!? I had tried bartering with Dr.Earing to wait and do the surgery at minimum in mid-Sept (not thinking they would rush it) or even mid-Oct. due to a bunch of stuff going on with Sunday School (planning, a 1-day Conference, meetings/Canvassing, etc.) I think he (Dr.E) just thought that was funny that I wanted to wait as far out as Oct. =/ I thought it seemed like a good plan albeit all the longer we'd have to wait on the shunt business!?

The Aortic Valve replacement-revision is set for Tues., next week, Sept 3rd. The plan is to  take out and re-seat the new/leaking valve to get rid of the post-surgery issues or if they feel it would be better they will put in a new mechanical valve and whatever else if anything needs to be done. . What they do depends what they find once I am on bi-pass and opened up. Surgery is scheduled to last from 7:30-1:30.
The Pre-Op Appt  which included an Appt w the NP and CV Surgeon's PA, Chest Xray (see that faint glowing, green light in the distance?) and Labs + was to include an EKG. Surgery will be at CHW again and I requested plus was able to get assigned the same Anesthesiologist as last time so that at least is good given she is familiar w my airway now and she was very nice as well very well recommended by my Cardiologist and the Pre-Op NP last time and both where glad she was going to do my case this time.

Did you know that scar tissue at least in heart surgery peaks at week 5/6 post-surgery? I would have guessed if not told that it would be more like 3-6 months post-surgery! This part could make surgery a bit more difficult/longer but they are familiar with my anatomy, I am stopping the Coumadin (blood thinner) as of Sat. and they will have blood on hand if needed. - In the mean time I get to walk around w these very nifty (note sarcasm) white blood product-ID bands all weekend. Yippee! I strongly dislike the feel of these sort of things so am wondering if there might be a way to remove them and re-anchor without being to noticeable. I've not had a chance to look to hard at this yet.

I've heard from numerous Cardiology/Cardiovascular Providers over the past 2 days at Appts how they are amazed at my ability to " just role with the punches" and how so many of their staff comment they like working with me because I never get upset at them for having to give bad news. I am glad actually that people will share this sentiments b/c while I rarely share how I feel about stuff on the outside it does frustrate me that we have to do this again. Not frustrate in a way that I feel it is anyone's fault just more that I feel tired of the MPS sometimes, of so little knowledge about our issues and that when drs do encounter our issues how come there isn't a place they can go and publish or just share that info for the collective good of the MPS community? I know there is Genzyme's Registry but that is only for enrolled providers (typically Genetics  I think) and even then it seems few providers share what they see at least mine don't because they don't have time. I wish there was a way for our specialists to share what they see or find in us pts to help other providers? Non-the-less my frustration is calmed a bit (perhaps selfishly) knowing Providers think I am doing an ok job and that they like working with me apparently because I do know like anyone there ARE times I am likely not  all peachy and sun-shiny nice and i'd like nothing more than to punch a wall!


Last but not least I saw Dr.Bragg last Thurs for (approx.) 1 month follow up  and I can tell she feels bad about the new cardiac issues though she made the comment (purely joking) something to the effect of "I've not worn your parents in to new complications occurring?" - One of the many things I like about her, she can always put a light spin on a crap situation. Her support and her updating her team + the D6-4 Nurses after the last surgery + I imagine this time (she reads/sees my fb) is nice as those Nurses are in a way like another form of family.

And really, truly last! Last night after Church the  Pastor (around my age, married w a awefully cute 1 1/2 yr old daughter) invited myself, my Sunday School Co-Teacher and another friend over to his  house which was nice. I cant explain it but these are amazing friends and I never have to be anything special around them, they may not totally understand the MPS but both Joan (co-teacher) and Pastor S. are always there to visit in the hospital and Joan and I and another of our Sun. School Teachers have a great time when together either their visiting when I am in-pt, we often do lunch these days after Church when we are all there on Sundays or at our Sunday School meetings. Love them - given I am not much for hanging out with people or going out they really are fun to be around! =)

All for now, since I likely I won't update before Tues's surgery i'll have my Mom update this and fb on Tues and as needed throughout the week. If I am sedated again,  if the same plan as last surgery 5 weeks ago is followed Mom will do short updates till I am able again.
Thanks for stopping by,

Erica