Frustrated ....

[Marina]

Re: Frustrated ....

quick question ... something that my husband brought up to me this morning. When you hit the stage in your treatment right before you start dialysis did anyone experience ringing in the ears ?

I have heard that but only on PKD patients.

[tonjab]

Re: Frustrated ....

Hi. My name is Angel and I am new to the forum and in a nutshell my husband was diagnosed with kidney failure about a year ago. We are going through the VA for treatment. For this year the severity of the situation was always at the back of our minds and although we followed the rules the doctor gave us it didn't change us too much. His levels were holding steady up until a couple wks ago and then they nose dived to 15. Now they are in consultation to have the shunt put into his arm. Reality time ...

I am so confused by all of this and unfortunately no one seems to one to answer my questions. I am hoping that someone on here will know and can explain to me a few things.

They said his eGFR is 15 ... what exactly is his kidney function? Does that mean his kidney function itself is only 15% or is that something else entirely.

His diet confuses me ... they wont pin down exactly what he is supposed to have and not have ... so we've been going off of the basic kidney failure diet chart and monitoring his salt, potassium, protein, and phosphorous levels. The only concrete answer I did get from his doctor is except for strictly forbidden things ... everything else can be ate within moderation.

Medically and financially ... I dont know what steps to follow to get/receive help. He is still currently working ... but that could drastically change at any point and even though combined we are bringing in $2500 a month our financial outage is more per month than what we bring in due to travel expenses to doctor appts (kidney doc 3 hrs there, 3 hrs back - reg doc 1 hr there 1 hr back) ... we have 2 young children so there is always daycare fees for these days too. We've made cutbacks on bills just shy of having nothing other than elec, water, rent and gas. With this I know there is no direct answer, just frustration that I feel most people that are not in this type of situation just do not understand. Just any ideas or suggestions would be greatly appreciated.

I am sorry ... today has just been a bad day for me and I just feel like Im lost....

I see this post is kind of old, but I hope this help. I dont know if your husband has reached ESRD(hopefully he has not) but if he has, this automatically qalifies him for SSD and if he still works he is allowed to make up to $910 a month and that does not include any income you may have. His SSD income is based on his earnings while he was working and he is entitled to it. I have been on CAPD and hemodialysis both incenter an at home for over 15 years. I have worked during some of those years when I was feeling like it and when I wasnt I just collected my SSD. Sometime I just did volunteer work just to keep busy. If it is at all possible try to encourage him to do some kind of work to stay busy i think this helps me not to get sick. Also each state has a Vocational Rehabilitation Center (may be called something different in your state). They are a very helpful agency. It is government funded but run by the state. They will assist with medical bills, medication, travel expenses, higher education costs, entrepreneurship, they find the disabled jobs. They have the ticket to work program where his current employer can b compensated by the federal government for keeping him employed. They have paid for myself and my husband who is also disabled to attend and graduate college. Have also gotten us both employment with the local school system and we sill receive our SSD checks. My husbnd and I both had good careers and became disabled. Some people are ashamed to ask for help. We are just getting what is due to us and your husband should do the same and not be ashamed to take the assistance that is available to him and due to him. Being on dialysis is very expensive as im sue you are aware of by now. Good luck and prayers are with you. let me know how the Voc. Rehab. goes.

[SSDisability]

Re: Frustrated ....

I would definitly recommend applying for SSDI/SSI ASAP, as once you are approved you will receive backpay from the day that you applied. This could turn out to be a large sum of money considering it takes 1.5 to 2 years oin average to move through the entire Social Security Disability Insurance/ Supplemental Security Income process. If you hire a specialized Social Security Disability attorney in your area you will be more likely to receive benefits quicker for your child. I would recommend visiting http://www.socialsecurity-disability.org to find out more information on SSDI and what you can do to ensure your child receives benefits.