Venting

It's been awhile. I'm three years post transplant and things are not too bad. My kidneys have been giving me issues, as well as some side effects from my drugs. I'm tired a lot and, for awhile, I was nauseous almost all the time. The nausea has subsided, thank god, but I'm still tired a lot. The doctors say I can't be feeling symptoms from my kidneys but I think my body's just sensitive to stuff going on. My kidneys are failing but they're not in end stage yet. They're in the third stage. My eGFR, the last time I knew, was 30, which is on the cusp of third stage (moderate) and fourth stage (severe) and that was back when my creatinine was lower. I'm going to see my kidney specialist tomorrow to talk about where I'm at. I have so many questions. Sometimes I feel like I'm being forgotten though. I've known about my creatinine being super high since my three year assessment in July. The Dr. seemed concerned and said I should talk to my kidney Dr. about it. Well I still have not had a conversation with her. She sent me for blood work almost weekly but I was unable to get any answers to my questions. I wanted to know if I should be worried, if I was heading to end stage. I wanted to know if there wasn't anything she could do and that's why she wasn't getting me in. My creatinine was high at 170. That was a year ago. Then in July, they told me it was up to 260! What does that mean? So I've had to wait until now to get answers and in the mean time I've been obsessing over it. I have a nurse practitioner instead of a GP because she's so much better than any GP I've ever had, and I've switched between a lot in the last few years. She's my middle woman. If I didn't have her, I'd feel like no one was paying much attention to me. She gets on people. The first year, everyone's looking at everything and then they basically say you're on your own with your GP. Well most GP don't have a clue what to do and our situations are complicated. I have so many specialists that they all assume the others are looking after it, or at least that's how it feels. I know I don't have anything to complain about really. It could be a lot worse. I'm feeling depressed though because I want to sleep all the time. And, because no one can tell me why this is, I feel like maybe it's in my head and I might just have to live with it. It can feel debilitating sometimes because my whole life seems to exist in my bed. I've decided that I can't just keep going like this and if it isn't anything physiological then maybe it's psychological and I need to just live through it. I'm going back to work. I'm not sure if anything will change so I'll just go on and push through it. Well enough negativity. I do have a lot going for me that's good in my life. Despite being tired I managed to get out and learn golf this summer. It's a great sport! Even if I'm feeling out of breath, I can still do it with the cart. I love it. My husband could not be a better partner to me. He's always there for me. Our relationship is always being tested and we still come out on top. He stood by me through my illness. And now, because of said illness, we cannot have biological kids, which we both really want. It's really hard because EVERYONE we know is pregnant or has kids. We feel alone sometimes. But, we remind ourselves that we have each other and that we'll make the best of it. There's always a positive to every situation, no matter how small. I really hope that all my fellow lung transplantees, who are not feeling well, get better soon. I'm thinking of you. I'll update tomorrow on what my Dr. said. Later, Carla Our new puppy, Norman. He's the best :)