Today is DAY +53!! We are over the half-way-to-DAY +100 hump! Today, I think we can officially say that Kevin’s GvHD of the skin IS improving somewhat. It’s a really weird thing because his skin can change a few times from morning till night. The rash is still everywhere it was, but it’s doesn’t look as intense anymore…I think. Like I said, it changes. So who knows what it will look like tomorrow. Hopefully the doctor is satisfied with the improvement and he lowers his Prednisone dose tomorrow.
New development since my last update – Water retention! How do I know? Well he can fluctuate from 120 kg in the morning to 126 kg before bed… AND THEN he will weigh 120 or 121ish kg again the next morning. So that is like 10 or more pounds of weight fluctuation A DAY. The last time this Kevin experienced this was WAAAAAY back when he first started taking his oral chemotherapy, Gleevec for his CML. It freaked me out back then and it kinda makes me worry now, but we are pretty sure it’s a side effect of taking the high dose Prednisone for so long. We have an appointment at the BMT Clinic tomorrow morning so we will try to figure out what the culprit is. I did check with his Diabetes Nurse and she is quite certain that it is definitely the Predinsone.
Speaking of Diabetes, the nurse had to increase his insulin two more times since my last update. His blood sugars are STILL way too high and all over the map. He did have ONE good blood sugar level (11.1 mmol/L or 199.8 mg/dl) on Thursday… but then his blood sugar said NOPE! NOT STAYING THERE! and it has been fluctuating between 14 mmol/L or 252 mg/dl and 20 mmol/L or 360 mg/dl since. So this morning I emailed his counts to his nurse again and she increased his base dose to 25 Units of insulin and the scales slides up to 41 Units, depending on his blood sugar level. I email her his counts every 2-3 days. I love technology and medical professionals that EMBRACE IT!
I have exhausted myself trying to help Kevin’s sugar levels come down with food and monitoring his portions and intake, but the Prednisone demolishes my best of efforts! So yeah, that’s frustrating and a little discouraging. However, we just need to accept that it is what it is and we are trying our best and that’s all we can do.
I am going to donate blood again on Wednesday… or at least try. The last time my hemoglobin was too low and I was DENIED. So I’m trying hard this week to eat and drink well so I can give an awesome donation that will make the recipient want to JUMP out of bed!
Speaking of donating blood, Kevin and I are partnered with Canadian Blood Services and we have a goal to encourage 100 blood donations in 2015!! If you live in Canada, please consider donating in honor of Kevin and joining our Partners for Life team! You can easily register as a member of our team online. Our Partner ID # is AWES070342!
You can also provide our ID number to the clinic personnel when you donate!
At the same time, you should check to see if you are eligible to register for stem cell donation!
Hope you all have an awesome week and I will try to post an update soon after our BMT Clinic appointment tomorrow. =) Thanks for stopping by!