Well October is always a month of doctors appointments. I had my CF Clinic appointment the other day. It didn’t go as well as I would of liked. My blood work came back all messed up. Kidney function was way off. Normal function level, I was told, is around 1.24. My levels came back at 2.43. Yikkeesss! Normal Liver function, again I was told, is about 1. Mine came back at 2.33. Yiiikkeeesss!!! Surprisingly my potassium level was still in the normal range since I have felt off for about a week. In the past when my potassium level was high I get this tingly burning sensation in my hands, feet and lips. And I have been experiencing this awful sensation everyday for about 5 days now. The problem is I get this same tingly, burning sensation when my Tacrolimis level is high as well. Tacrolimis is one of my anti rejection medications. A normal, for me, is 10-12. My level came back 23.6! Way high!!!! Too high. A toxic high. A plus during clinic my PFTs - lung function test - was at 37%. The highest it’s been in about a year! So I’ll take that!!!
So major dosage change with my Tacro. And more labs next week. The thought is once my Tacro gets back under control my liver and kidney functions will no back to my normal. If not, then we will do more tests. This high Tacro level is also messing with my pancreas and causeing me to have high blood sugars as well. Which means now I have to have a meeting with an endocrinologist about diabetes again. I’ve been down this road before - hopefully this is something that clears itself up as well.
I also have an appointment with a dermatologist this month. I have 2 spots on my face that I think could be skin cancer. I had a spot removed about 2 1/2 years ago on my face that was cancerous. And these look just like the one that was removed. Of course this appointment is like 4 days before I’m suppose to be attending a friends wedding - so hopefully I don’t look too much like Freddy Kruger.
And at the end of the month I have a Transplant Check up in Cleveland. Assuming we get everything figured out by then it will just be routine blood work, chest X-ray, lung function test and meet with my team. Should be a one night stay with no problems.
Overall I actually feel good. I had/have some kind of bug that knocked me down for a little bit with sinus pressure, chest tightness, coughing, sneezing, runny nose, and nausea - ya know the fun stuff! The only thing really left is a runny nose and I still don’t have much of an appetite. I was swabbbed for RSV at my CF Clinic. I’m still waiting for results. But the Drs are thinking it’ll be negative. I’m hoping that this sickness has run it’s course. Every winter I’m at a high risk of pneumonia so I don’t need to be down going into cold weather. If we get everything under control I can move on to the holiday months with no worries. That would be wonderful!!!