I woke up this morning feeling blessed. I've had five weeks free of hematuria. My hemoglobin is now 12.6, the highest since last summer. I'm on an "as needed" basis with my urologist. I started LA Detrol a few days ago to address my night time frequency and a mild discomfort in my right lower back . It's been a long, difficult, painful journey to this day. I'm blessed.
Red Palms Current Mood: thankful
How long have you been diagnosed?
What symptoms do you have?
How satisfied are you with your overall treatment? 1=most satisfied
Mean: 3.00 Median: 3 Std. Dev 0.00
How satisfied are you with the support and education you've received? 10=most satisfied
Mean: 2.00 Median: 2 Std. Dev 0.00
Hi! I'm Lou, or Red Palms. I gave myself that name after discovering that red palms are a sign of health, lack of anemia, when you're dealing with a bleeding disorder. My palms have been consistently red for the last month. Yeah! However, since last summer, they've gone from red to white, more times than I'd like to recall. It has been a long, painful, distressing journey. I have had supportive friends and family, but it will be great to share this journey with others who have had or are having similar experiences, can share knowledge, offer suggestions, and just talk sometimes.
This is a sharing, caring community. No concern is too small to talk about. This is also where we become knowledgeable about the condition of radiation cystitis, treatment options, side effects, and resources. Lastly, there seems to be a lack of current knowledge among some urologists about the treatment options. We can make a difference by arming ourselves with the latest, most reliable research on radiation cystitis, and holding practitioners accountable for having that information.
I've added a poll to keep track of exactly what people are dealing with. Answering it is optional. There is an error in the "most satisfied" questions. 10=most satisfied.
Again, glad you're here.