Hi! I was diagnosed with Kidney Disease in 2008 and just recently progressed to End Stage Renal Disease. I am pre dialysis but I think that will be changing soon. I'm scared of what the future holds for me and I wanted to join this group to talk to other people who are going through the same things. I'm so scared of the unknown...especially dialysis. I am hoping to be able to do PD dialysis when the time comes because I have a very demanding job that I need to keep. I have an extremely supportive husband but I cant expect him to understand completely since he isn't going though this. I'm also mad...I'm mad because I had a nephrologist that I was seeing for many years and she had me diagnosed at a much lower stage than I really am. I recently found a great nephrologist but I think that it is too late and the damage is already done. It is gotten to the point where my illness is starting to impact my career and I just need help
Thanks for listening!!
Hi and welcome,
I can't address your exact situation as I'm not yet close to dialysis. However, I can address one of your comments. It is never too late to find a caring and supportive nephrologist. Staying with the same one after you feel they bungled your treatment previously will only be detrimental to your mental health. Change now. Look at the side effects of every type of dialysis and how it will affect you with your current employment. An informed choice is the one you select after doing all due diligence and research. Not knowing your work or work schedule I would suggest that in that decision-making process you speak privately to your HR department and your supervisor(s) about your needs with each method you seriously consider and then make your final choice. Have you informed your other physicians about your status and gotten their input? Keeping all members of your care team informed (including your husband and other significant family members) is very critical at this point.
Whatever you decide, this site has lots of knowledgeable people who have been where you are and will share their stories with you. Best of luck.
Hi! I changed my nephrologist a few months ago. It was probably the best thing I could have done. I've spoken to my employer at great lengths about my situation. They are supportive but for how long...who knows! I already know what route I want to take for dialysis. I am hoping to do PD since I have a very overwhelming and busy job that I need to keep.
I'm really happy that I found this site. I've been looking for a support group but my transplant coordinator says that there really aren't many for people who are pre dialysis so I am super happy about this group!
One other thing to check is what your rights are regarding continued employment under the Americans with Disabilities Act. Your employer doesn't always get to dictate terms to the employee, especially an employee who know their rights. Hang in there.
Thanks! I will!!
I too have just recently became stage 5 so I can relate to what you're saying. My GFR is only 14 and am looking to stay off dialysis for as long as possible. Unfortunately my old nephrologist retired and I got stuck with a bad replacement and am trying to find a new one. I think it's important to find a doctor you communicate well with, even if they can't always tell you what you want to hear. The doctor I'm seeing now is extremely negative and wants me to start dialysis now even though I'm not experiencing that many symptoms - I'm currently only slightly anemic, and a little bit itchy sometimes (I use moisturizing lotion which helps) but otherwise feel good.
Since you already spoke to your HR about it, it's a moot point, but at my last job I was "laid off" about four weeks after I informed I had a medical condition (CKD) that required working from home once a month due to all my doctor's appointment and lab tests. I was only stage 3 at the time and was seeing a nephrologist, cardiologist and a primary care physician. I even got a note from one of my doctor's which confirmed I had a medical condition that required working from home once a month. I felt like they cared and that I trusted them to do the right thing. Yet, four weeks later I got laid off when only four other people got laid off (???). I had long-term medical insurance but had not yet started dialysis. I'm guessing that they didn't want to have to make "accommodations" for me per the ADA and/or felt my job performance would gradually go downhill. I was told my job was being eliminated as they had to cut costs. I spoked to a labor lawyer later as I was thinking of suing them, but unfortunately they were very careful legally in terms of the language they used when they laid me off. I also looked at suing them for age discrimination (I'm over 50), but again, they have corporate lawyers and HR people to advise them on how to avoid lawsuits. I live in California and it's extremely easy to fire or lay off an employee, with or without cause.
In my new job I work mainly from home and it's not an issue (I'm remote anyways), and this helps as I need to sometimes take a nap during the day (I'm mildly anemic). However, to be on the safe side, I haven't spoke to anyone with HR about my medical condition. Maybe I'm a bit cynical after all that has happened in my career, but I believe HR's main purpose is to avoid lawsuits; they don't really care about the individual. At least, it isn't their priority; their priority is to protect the corporation. If and when it becomes medically necessary to start dialysis, I would probably go on long-term medical coverage instead of work if I wind up doing hemodialysis. I will walk in to HR when the time comes with all my "ducks in a row" and inform them that I need to go on dialysis and am not able to work full-time, and have all the necessary paperwork from my doctors.
ESRD is considered a disability per the ADA, and the employer needs to either allow you continue to work if that's what you desire or go on long-term disability if necessary. I have long-term disability insurance with my current employer, but will only make 70% of my current salary on LTD. The ADA requires most employers to make "reasonable accommodations" to remove obstacles to continued employment. ESRD qualifies as a disability under the ADA. This law is in effect for businesses that employ more than 15 people
It's also possible if you're too tired or "wiped out" to work as a result of dialysis, then you can go onto LTD if you have that type of insurance. But you can use the ADA to keep your job even if you do have to start dialysis. I think the ADA's main purpose to keep people with disease in the labor force, but as I mentioned above, it's possible for the employer to find loopholes - they can fire a person due to "business reasons", as opposed to job performance or the reasons.
In the US, ESRD patients may also be eligible for Social Security Disability, even if you're not yet 62. You just need to have CKD AND require dialysis to quality for Social Security benefits.
I hope things work out well you. Best Regards.
Very sad, You must not assume that your employeris going to accept your condition, no matter how long or how good your relationship has been!! They are not walking in your shoes.
My employer is making accommodations for me right now and they seem more than willing to work with me and my illness but I have to wonder how long it will continue.
I love my new nephrologist. He actually takes the time to call me when I have lab results. I never had a doctor do that for me before. My old doctor's office would only call me if there were changes. They used to tell me "no news is good news".
I am totally expecting to start dialysis soon. I am noticing changes in my body that I've never had before. I am hoping to be a candidate for PD dialysis so it doesn't interfere with my job...which I need to keep due to financial reasons.
It is crazy to me how quickly things change. My old doctor had me diagnosed at a stage 3 but I knew deep down that she was wrong. Imagine my surprise when my new nephrologist tells me that I am stage 5 and I will probably need dialysis by the end of the year.
It is very encouraging to me to read the posts in this group. I have a very supportive husband but it helps me tremendously to see that other people understand what I am going through or are going through the same thing I currently am.
Best regards to you as well!
Well communicated, Mr. _ Kidney..
Agreed!
The important thing is to go forward.
It is very hard to change doctors, but often necessary. Having your care team informed and on the same page will only be to your betterment. Invoking family and friends for support is critical; remember, they may not be in your shoes, but they do love you- let them!
The folks on this site are wonderful..reach out and I guarantee that someone will always reach back!
Stay strong..be positive!
B..