As fairly easy as the 1st heart surgery was this one has literally felt like it is kicking my butt, not only tired but short of breath with stairs or semi-longer distances, swelling (10 pd+ gain over a few days though thankfully seem to be getting that off fairly well now.) On top of that loveliness have been dealing w and very un-successfully trying to control since the weekend a progressively hacking (dry) cough that feels like it is going to rip my chest wires apart. Super uncomfortable. I feel miserable is what it comes down to and have to admit even though I know it is wrong to do so have questioned why does one thing after another have to keep piling up? Can't I just feel ok for awhile? - Late last week I think after I got discharged from CHW there started pretty extensive swelling and bruising with the bruising going from the sternum incision down the entire L side of my upper body and then going across the abdomen. The swelling was in my stomach (think few months preggo look) and ankles/legs and cont'd to get worse Fri so I finally called the Cardiology Nurse.
I Talked to Dr.E's (Cardiologist) Nurse on Fri and initially they increased meds and I had to call Dr.Earing on Sat. morning. He at first wanted me to go to the ER but I was able to convince him we should just watch it for another day on the new doses. Sunday I called again per his wishes and he adjusted another med + instead of seeing them Tues I saw them today (mon) after ERT which made for a long day! Chest and Abdomen Xrays along w an Echo showed there is Fluid building up around the heart (there was a small amount when I was discharged but this has increased some, as well as fluid around the lungs and throughout the abdomen. So far since I was able to get some fluid off in a few days w the med adjustment we are just watching this and will stay on the increased diuretic (gets fluid off) meds which are Lasix 40mgs 3x's a day and Aldactone 25mgs 2x's a day.
Labs also showed that the INR (blood thinner level) is also very high so does explain a lot of the bruising. This med dose was decreased from 6mgs 5 days a week, 4 mgs 2 days a week to 2 mgs until Thurs when they will re-check labs and if needed adjust dose. I can do those labs while I am at an outside but connected hospital. With the last heart surgery this Coumadin (blood thinner) dose was the opposite when I came home with us having to increase the strength at each weeks Echo/Cardiology Appt but likely has to do w the surgery and other things going on + not as great of an appetite due to this cough.
I follow up again with more Labs next Tues and Appt with Dr.Earing + the NP and not sure if they will tack on an Echo at the end again.
The week that I was discharged from CHW the Anesthesiologist stopped by my room again and has asked me if I would take some pictures for her to use. She also asked me if I would be interested in a Therapeutic Yoga program that is run at the same center she goes to for Yoga as she wondered if this wouldn't help some with overall body discomfort/joint issues. I said I was (why not I guess) and so she is going to get back to me with that info. I do PT and starting Cardiac Rehab but figure anything that might help is worth at least looking in to at worst it wouldn't be something i'd be interested in and at best would be useful. She wants to use the pics I've put together and am taking over the next 7 days (mouth opening as she suspects based off the 2 surgeries and having done both anesthesia intubations that having had ERT the day before surgery the 1st time helped w jaw opening vs the 2nd time I had missed the day before due to the holiday and so it had been a week). The other pic is the MPS chromosome tattoo. I don't know if she will end up having time but she said she would still like to write an article of her findings and what she used with these 2 heart surgeries and though she might not get a chance to do it till later in Fall she asked me to send her a copy of these pics. If she is able to write the article that will be good for the MPS community and is non-identifying so no one would know who it was written about.
I'll try to update at least after next weeks Cardiology Appt.
Thanks for stopping by,
Erica
No comments:
Post a Comment