Though I read posts often, it's been a bit since I've been on here. In the last month I lost my father in an auto accident. He was my only living parent and my rock through all of this.
I also won my argument with my hospital and have been put back on the transplant list! My wife is undergoing the tests to donate to me as well. But, I still get this attitude from my co-workers and even some family like I'm not really that sick. Again, I was born with only one (weak) kidney that's not even in the right place. It's down to 17% function, so, I'm teetering on the edge of Stage 5. I've not kept my illness a secret from work, but, they don't seem to care at all and are really nasty when I can't do something. I still work 40 + hours a week, I serve on two nonprofit boards and I'm an active Rotarian. A year ago, people would say, "I don't know how you do it." and I would just say, "aw, it's no big deal." Now when they say that, I think, "I actually wonder how I'm doing it all too!"
I wish for just one day I could look how I feel. Then, maybe everyone would understand how sick I am and how hard it is for me to get through the week. What we deal with isn't like cancer or other illnesses where you can see the symptoms. But, it's like I have a kill-switch inside me and I can't see what the timer says. By the end of today, nearly 130 people will die from CKD in America. I can't seem to make my employer understand and back off of me a little. I'm talking with my wife about maybe just working four days a week instead of five. I feel like I don't have any options. If I talk about my illness, will they decide that I can't do my job anymore and fire me? If I don't, I risk making things worse for my health.
Written by
Dustypye
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I'm sorry to hear of all these struggles you're currently battling. I'm sending my thoughts to you as you grieve the loss of your father.
I am wondering, are you able to apply for FMLA protections at your job? I remember battling with several employers because I didn't look sick. Even now, I have a gfr of 11, and I still hear about how not sick I look. Fortunately, I no longer have to work in workplace. Keep your head up! Things get better.
Unfortunately, we have way less than 50 employees. More like six. I work in a museum. I have to take unpaid leave for every doctors appointment or sick day. My wife and I have talked about seeing if I could maybe do four day weeks, or, even take every other Monday off. Just some way to build some rest time into my schedule.
I am so sorry about your dad; keep his spirit alive in your heart. I know as I have lost both of my parents as well.
As far as CKD it is really an unknown or disorder which is not widely known, so people tend to be dismissive of the intensity of the quality of life that it yields until you say the word "transplant".
I agree about looking into a FMLA..this is a federal act and protects your job for at least 12 weeks of continued absence. I believe that it also protects the right to take off time to go to medical appointments. Google it and see if you can download the form for your doctor to fill out, and or check with human resources.
I had a FMLA in place for the entire duration of my mom's battle with cancer. I was not questioned if I took off a day here and there or partial days.
Seriously look into it and put yourself first.
None of us are thrilled to be blessed with the kidney disorders, but we can help and support each other.
Why shouldn't you do as much for yourself and your family as you can?
The FMLA is simple, just have your doctor fill out the form, keep a copy and submit it to your employer. If you have a human resource office, they should have this.
Actually, my union suggested that I put this in place; several had it incase they needed it
We also had a co-worker who needed a kidney transplant; his wife who also was on staff, worked with us.
Unfortunately, kidney disease/disorders are not well known or publicized. I am from the US and a friend, from the UK..until we were diagnosed, we knew little about it. You are right about Cancer and even Diabetes being the big ones.
Recently, the film "Going in Style" with Alan Arkin featured a kidney transplant issue. I haven't seen the film, but heard about it. The NKF was pleased about it.
Take care of yourself and do what you can to make your life and health more comfortable. It is not easy.
I hear you about "looking sick." I just talked with my manager. He's surprised I'm as sick as I am, since I "look good." Dude, I have the start of a pred moon face. I'm exhausted and I hurt.
I did go part time, and it helped. I work at a small business with a very physical job, and the bosses didn't require paperwork. I suggested having FMLA in place, and they waved it away. We have other people going through illnesses with no management issues. They will augment my job description as needed. I trust them. At a previous job, large company, I had FMLA and it was great. Definitely fill out the forms.
I'm so sorry for your loss. It's always hard to lose a parent, but especially when they are so supportive. Sending healing thoughts and prayers your way.
I am happy for you that you are back on the transplant list and that your wife has lovingly offered you her kidney. I'm glad you have her love and support to get through this. I hope that works out that she is able to donate to you.
I am so sorry for your loss! I can only imagine what the stress of it all must feel like. I'm sending you positive thoughts for strength to get through the work you must do and wisdom to know what to do next. Take care!
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Chronic kidney disease and being alone
UPDATE: Should I be concerned about a 23 (or 10 ) point drop in gfr in a year?
My plant-based diet didn't work 
