Went back to Dr M’s office today to have all of those labs drawn only for the girl to not be able to get my blood. Not surprised, I will have to go to the hospital on Monday as one of the tests has to be drawn before 11 AM and it’s too late to get there today because I have a follow up with the heart dr next.
The heart dr agrees that I need a heart cath done but he feels now is not the time as I am still in work-up stages and have not really started any treatments for the autoimmune disease yet. He does change my migraine medication to Norvasc. He explains that this will control my heart rate/blood pressure and is also a first line treatment option for some types of pulmonary hypertension so I will take that as a Win-Win situation if it works. (Hoping it keeps my migraines at bay too). He explains that even though my pulmonary hypertension is close to moderate, my heart structure and function are fine. He then tries to explain World Health Organization’s classes for pulmonary hypertension and that right now I’m probably in the lowest class because of the echo results. I don’t quite get it but I at least understand why we are waiting on an invasive procedure. I can read up on the other stuff. Follow up in two months to discuss again.
Overall, I had a good day at home. I was able to prepare MOST of dinner without oxygen – another plus to the day. Still no CellCept at the pharmacy, guess I will have to check on that on Monday when I’m at the hospital
(I think I may need to explain here why cooking, cleaning, laundry, etc are difficult with interstitial lung disease and pulmonary hypertension. Any activity where I need to bend over, reach over my head, carry additional weight all add stress to a system that is already struggling. Heck just standing up and walking a few feet can raise my heart rate. Faster heart rate = blood moving faster = less time for the oxygen and carbon dioxide to exchange in a system where there is scar tissue blocking the way) So the longer I’m up and moving the more likely I am to need the assistance of oxygen. But looking back on it now, I didn’t WANT to need oxygen, I WANTED to be normal, so I did a lot of things without it and thought it was a win if I got through it – I’m not so sure that’s a good thing now (three years later)