This week has been chock full of appts but really today's was the only one that was a fup. I saw Cardiology (NP and Cardiologist) for one month follow up from Surgery 2 months ago. We discussed a potential med for fast heart rate but decided it's liveable and we can always re-visit the issue at next fup if is an on-going "annoyance". Really the surgery healing continues to go really well, pain is pretty much non-existant since a few weeks after surgery. Heart rate is incredibly annoying, semi-fast(tachy) often but still intermittent. Otherwise all seems well with the new valve, VSD closure and the areas around the valve that where enlarged and fixed in surgery.
I fup in 4 weeks and then if things are going okay still Dr.E will set the next fup at 4 month out from that. Right now we are about week 8 or 9 (the 2nd heart surgery was 2 months ago on 11/3).
On a separate note Dr.Earing is involved with our 'Adult Congenital Heart' group and has brought up about doing another 'patient education night'. He brought this up at the end of the appt today as it's something we've been talking about since the ACHD Picnic a month or so ago. He wants to go ahead, schedule this, have the topic based around the new healthcare laws/reforms and how this will/may affect ACHD pts. He will send the information out to myself and the group leader (Patty who started the group) and we will in-turn send the information out to the ACHD community who are part of our group and get feedback. - One thing I just thought of now is would it be informative to ACHD pts for Dr.E to have pts with both forms of private (employer, privately bought) insur., a patient with Medicaid and a patient with medicare share their experiences getting ACHD care? Something i'll run past Dr.Earing in the near future to consider for the meeting.
All Cardiac meds are the same and dosing will stay the same, we talked about lowering or stopping the Lasix (takes fluid off) or the Spironolactone (a longer acting med that works similarly to Lasix) but because I've had issues with fluid retention and pleural and pericardial effusions following the 2nd heart surgery and am doing well on these doses now Dr.E and his NP thought we should leave these meds alone. We'll re-check kidney levels (and other Labs) at the Dec Appt and re-visit whether or not to lower/stop either of them again then. I honestly hate these meds (and when I am going somewhere for instance Sat w my Sister and Mom) I just don't take the morning dose and on infusion days I take the morning dose either very early or if I am going to get home early enough (rare) i'll take it early afternoon then the 2nd dose in the early evening vs having to try to find bathrooms constantly while out. Occasionally I also just skip one of the doses altogether. The meds do make a big difference in fluid retention and thus how I feel so as much as I dislike them I also can't complain to much about them-a catch 22!?
The Coumadin (blood thinner) level was just under the therapeutic range (2 mo after surgery we finally got it back to the 1st surgery dosing) but b/c the level was close enough to the recommended level (2.5-3.5 in the 1st 3 months)the dose will stay the same (6mgs 5 days/wk, 4mgs/2 days wk.) and instead of weekly Lab checks I can go until the next Cardiology Appt in 4 wks without having this drawn as long as nothing adverse occurs. - Adverse things would be: abnormal bleeding/bruising/bloody noses, getting sick/antibiotic use, surgery or anything related. I'll take that break - thankfully it isn't very hard getting the labs drawn since I can just walk over to CHW's Lab when I am at ERT (infusion) any needed Monday if not before a Cardiology Appt but still a break is nice!
I guess the only other semi-new things are the Thoracic Shunt seems to be moving even more or doing something as by the end of the day or more especially when I am sitting forward for any reasons that area on my mid-spine is pretty uncomfortable. Unsure why but a pain in the arsh! I see Dr.Bragg anyways next week to talk about placing this shunt back to drain in the pleural space (if we can given her concern there could be permanent scarring in the pleural space from the OHS-pleural tubes.) so I guess it isn't a huge deal right now.
Last but not least are a few mundane things. I guess my PCP would like an Audiology consult per the Genzyme-MPS I (ERT) protocol but gave me le-way on when to do this as long as I would do it sometime in the next few months. I figure if I scheduled it sometime in Dec or Jan would be around 2 yrs since the last time this was done. Ive not had this testing through Dean before but have some options where I would have it done and have the order to schedule when it works for me. I see the new (recommended by Dr.Bragg's Team) PMR dr at UW in Dec (for Botox) in addition to the Cardiology Appt., normal Cardiac Rehab Appts., Neuro-Endocrine fup and usual monthly Pain Mngmt fup but I also imagine there is never really any good time to do new appts.
ERT was switched to Weds this week due to the Nurse being sick Monday which worked out ok as I had to come to Milw for Cardiac Rehab anyways. Since the rest of the week was pretty crazy I just used Monday to get a little caught up on other things, work on some things for GSF (not that I had much luck with what I was trying to do/find!) and otherwise not to much.
Cardiac Rehab is going ok, we've slowwwllllyyy been increasing the levels of the different things I do and seems to be going ok. I've gotten to know some of the other pts there (older or much older people) so that makes the time on the machines go a little faster or otherwise I use my earphones and watch TV. I am not entirely sure how long this program goes on for but it seems to vary patient to patient, progress to progress.
Sunday School is going well, all of our kids sing on Sunday and otherwise I have just been alternating between Bible Bingo (which the kids love) and bringing in various craft ideas. Joan and I (we alternate weeks and group teach once a mo)
have a pretty easy going group of kids-all girls right now.
That's about all, thanks for stopping by,
Erica
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