I can't believe I haven't blogged in 12 days! I think it's mostly because there isn't anything exciting to report and that's probably a good thing.
The biggest thing going on is continuing to tweak his meds. His prograf levels are still high but slowly coming down to a normal level. The last check was 14+ (therapeutic is 8-12). He had a day where he had the shakes. Apparently that's a common side effect especially when your levels are high. I had found some heart transplant facebook groups and there was a whole thread about this. Of course, in typical Carlos fashion, he didn't mention this until we were at a check up. He got the lecture about calling if anything came up. It's the 'if you even think about calling us, call us' line of thought.
He had one day, where he was dizzy every time he was standing up. Despite no unusually low blood pressures, they opted to stop his cardizem. There hasn't been a repeat since. Dizziness can also be a side effect of prograf. His blood pressure is high when he first gets up but then drops as the day goes on. He keeps a log of his daily weights, temps, a couple blood pressure checks. His weight has continued to drop everyday except for today. He has lost 12 pounds since discharge.
We are at Mayo today for weekly biopsy. He's having xrays, Labs and an echo done as well. His biopsies have all been a 0 so far and we hope to continue that. That indicates the amount of rejection of the new heart. A 0 is none and 3 is major rejection. A 1 is common and nothing gets done with that.
While we have felt very supported by family and friends, it came to my attention that there are those out there who think that the heart failure Carlos had was his fault and that he hasn't been getting good care. I guess they think he wasn't taking very good care of himself. Obviously they haven't read his story or maybe don't believe it. It makes me mad because this wasn't his fault. He didn't smoke, wasn't doing drugs, rarely drank alcohol. He may have been a little overweight but that's it. Never had high blood pressure. Never had high cholesterol. In fact, when he was first diagnosed, they couldn't find any reason why this happened. No coronary artery disease, nothing! The doctors have always felt it was genetic. They have isolated a gene associated with dilated cardiomyopathy and suspect it runs in Carlos' family. I wish people would mind their own business or talk to us directly instead of speculating based on second or third hand information. I also take this stuff personally because it implies I haven't taken very good care of him. We accept only positive voices in our lives, no negativity. Fortunately there are many who contribute that positivity :)
We have been receiving meals almost every night and want to thank everyone for your assistance! Those meals make a huge difference for me. Last week was a very hectic week and I really started to struggle by the weekend. A major meltdown occurred and I'm embarrassed by it. It was just a combination of stress, poor rest, and feeling overwhelmed. I'm anticipating a lighter week this week so expect things will be more manageable. Only two trips to Mayo this week! Yay!
The kids are handling everything well. It's amazing what we all can adjust to...