It's been getting worse and worse. I am tired during the day. I fall asleep on the couch in the evenings. I sleep in and take naps on the weekends, but when I go to sleep for the night, I can't fall asleep. It's been getting worse in the last month. I lie there for 2 hours sometimes. Part of it is my mind wandering, but mostly, I just don't feel sleepy. What's odd is that I do feel tired. I WANT to go to sleep. So here I am writing this bullshit instead.
Also, I don't have the energy to do the physical activities I used to do. On my good days, I feel normal, but mostly I get short of breath and tired pretty quickly. This morning we walked to the bagel shop for breakfast. It's about 9 blocks one way, but I struggled on the way home because of the heat. It was warm, but I am usually okay with that. In early August I went camping in the heat and hiked 3 miles up winding hills. Now, just 2 months later, I'm a wimp. Tomorrow I'm going to try to go to spin class. I had an Aranesp shot today. I think that takes 2-3 days to kick in. I should be feeling better after that. Sometimes I have an urge to take an extra shot, but the medical studies show it's no good for your heart to take too much Aranesp. They want your hemoglobin around 11-12. Mine was 8.5 before I started taking the shots. I take them every 3 weeks and that seems to work.
I think I'll try to get some sleep now.
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3 comments:
Hi Heather, I just found your blog. My husband was just diagnosed with PKD, so I really appreciate being able to read your story and have insight into how you are feeling. How old were you when you were diagnosed? Do you remember what your creatinine was then? I am so glad for you that you have cousin who will donate a kidney to you. I am keeping you in my prayers. Gayle
Hello Gayle! I'm sorry to hear about your husband's diagnosis and I wish you both well. Thank you for the prayers.
My father had PKD so I, along with my siblings, was tested for it when I was quite young. I have known since I was about 10 years old. I didn't have symptoms until my late 20s when I was diagnosed with high blood pressure. I've been on BP meds ever since. The next symptom was anemia. That started about 2 years ago when my creatinine was starting to become elevated. In November of 2005, my creatinine was 2.1, which means my kidneys were functioning at 50%. Now my creatinine is around 4.4. My creatinine was normal for years and years and only began to become elevated in the last 4 years. I have a nice creatinine chart that I've shared in a blog post.
Good luck to you both. My positive thoughts are with you.
Hi Heather, my name is Mark from New Jersey and I have PKD; I am in end stage renal failure now for about the last 4 years. My Mom had it and passed it on to my sister and I but not my older brother. I truly appreciate reading your story and learning insight on how you feel. I'm on the transplant list and have just started getting calls. I hope it is soon. I was so happy that you have a living donor who is understanding and caring enough to donate. You are in my prayers. Mark
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