When I think I might need a kidney transplant or dialysis as a 43 year old single woman I’m scared and feel I wasted so much time.
I spent so much time being wasted that the years flew by. When I stopped and looked around me I realized everyone else in my peer group was married with children. I was still going to bars and concerts.
So I never had children or an actual relationship where the other person stays for more than one night. I thought I loved a few but they didn’t love me.
Now it might be too late for anything. Things I always wanted to do. I always wanted to meet Steven Tyler. I’ve met famous people and they don’t ever really live up to the expectation. But I don’t care, I’ve always wanted to meet Mr. Tyler. His lyrics have always been with me. I’ve always wanted to travel. Warm places because I’m always cold now. Living in Rhode Island with Kidney Disease sucks. Places like New Orleans, Australia, Ireland, Greece, at one time Belize then I watched the TV series Mad Dogs and changed my mind. I would want to visit places with beautiful animals and waterfalls. It’s a lot to ask for. I would like to make jewelry again and laugh. I want to laugh with my sister again.
I went to the Urology Specialist at Mass General yesterday. It was a complete waste of time. I have never been so disgusted in my life. Even my twin sister was crying and ready to slap a bitch.
The Dr. had no idea why I was there even though all of my info had been sent to her ahead of time. She didn’t know how to work their new computer system. As she has a scan of my kidneys and bladder on the screen where I can see and she can see, she is making noises to herself and comments. Comments like the following “What a mess!, Oh my God!, What is this?”. I was getting nervous at this point.
She said “You have a LOT going on here. The doctors on your case are very good and did everything I would’ve done. You should have a biopsy where they go through your back though.” I asked her if that was something she would do. She said she wouldn’t take over my case without starting from the beginning and re-doing all the tests and biopsies they had already done. I told her Medicare probably wouldn’t cover that because they had already been done and she said I would have to get pre-approval. No mention of the many financial aid programs Mass General offers. Plus if she thought my doctors did everything right why did she have to re-do everything? I never got an answer for that.
She told me I should see a Nephrologist. I asked if I should see one around Mass General? She said it didn’t matter. She didn’t even try to recommend one. At this point I’m crying. I told her I’m tired and in pain and I really would like to know what’s going on. She said “Of course you are I would be too. You’ve been in Kidney Failure twice, your kidneys are not working the way they should, the right one is barely working. You have to get this figured out before more permanent damage is done.” DUH! That’s why I was there!!!
So it was a wasted trip where I’m worse off than I was before. I have no idea where to go for help when no one wants to help me. It’s even worse because it’s interfering with my Bipolar meds and I’m a mess. I don’t know what to do. I feel like giving up but I can’t.