Support for son with kidney failure

[cynthia346]

Hello, my son developed kidney failure at age 27. He's doing in center hemo dialysis three days a week for the past 5 years. He tried to work while on dialysis, but had to stop six months ago as it was too difficult. Most days he feels bad. I worry that he is getting very depressed and ready to give up. He's on the transplant list and hoping to get a kidney soon. As one of his caregiver's its very hard to keep him positive. Any suggestions??

[beckums70]

I'm curious as to why, at such a young age, he's doing in center hemo instead of PD or home hemo? In center hemo is super hard on the body. I started dialysis at 43 and have been going strong for 4 years now, working part time and raising my son while on PD. Would he be able to switch to PD?

[cynthia346 in reply to beckums70]

Thanks for replying to my message. My son at age 27 started with PD , but it did not work for him. He's also tried home dialysis, but the doctor said he was not getting enough cleaning of his blood so they put him back into the center. He was working full-time up until this past January, when he got took sick to work.

[barb2454 in reply to cynthia346]

Is he on the transplant list?

[cynthia346 in reply to barb2454]

Yes he's on a transplant list.

[sbeav239]

Stay strong, I went through the depressive state, medication can help even that out doesn't mean it's for a life time. Have faith, I was extremely lucky to have a kidney donated to me so my wait wasn't long, God Bless and good luck

[barb2454 in reply to sbeav239]

How long have you had your new kidney?

[sbeav239 in reply to barb2454]

A little over a year and a half ago and I feel wobderful

[barb2454 in reply to barb2454]

That is super. Good for you. Keep being an advocate for those of us still waiting. I'm sure you are a huge inspiration!!

[Thomas1967]

Get him out of the house! Go to lunch, dinner, to the beach (if possible), join a church group. Make him realize there is a lot more going on in his life than just dialysis. When I get depressed about going to dialysis and doctor appointments, I get going to other places to change my mind on what's going on in my life and it makes a big, positive difference.

[barb2454 in reply to Thomas1967]

That's great advice!!

[LadyLuv]

Because the hemo takes the blood out of your body, my dad was on hemo, it does take a lot out of a person. Can he make the switch to Peritoneal? That is easier on the body. And yes, sometimes it can get to someone. I'm sorry he is on dialysis. Can he get a a living donor?

I know it's hard on you too. I don't ever think that it isn't? Do you get down time? You have to take time for yourself. When he goes to the incenter, go shopping, read a book, just something that you like doing. I like to shop, especially online. That's my go to thing. Find your go to thing and run with it.

RELIEVE THE STRESS!!!!!! That's what my sister and me would do with our dad? And that's what she does now. I go with her sometimes to help her shop. I love to dress her. Take care. GOD has your back. Talk to HIM when things get rough. HE will help!!!!

[cynthia346]

Hello,

Thanks for your reply. Unfortunately, my son cannot do Peritoneal dialysis. He did try home dialysis, but the doctor said he was not doing well, so they put him back to in center hemo dialysis. No one in our family is able to donate a kidney. He had a transplant about seven years ago, but it only lasted 3 years. Right now he considered highly sensitized which makes it difficult to find a good match. He's very depressed and sometimes angry. I try to handle all the insurance paper work and getting him on disability. He got married about two years ago, but his wife is also disable. I'm retired so I spend a lot of time helping them. Thanks for listening.

[barb2454 in reply to cynthia346]

Dialysis can be very frustrating and I can understand his anger. Maybe you can find another man that he could talk to occasionally. Someone who could listen without judging and possibly take him places. What does he enjoy doing? Fishing, playing cards, etc.

I know the thoughts of not knowing being sure about another transplant could get him down, so whatever he can do to forget those things on his "off days" might help.

Praying for you all.

[AlexysB]

Hi! I'm about to get my second transplant here soon. First one lasted me 15 years. I'm telling you, once he receives that new kidney he will feel on top of the world! I know that dialysis really takes it out of you physically and mentally. I'm a EMT and work in hospital and now I'm on disability waiting for my next kidney. Tell him to keep his chin up!! His day will come

[cynthia346 in reply to AlexysB]

Thanks for your positive vibes!

[Heatherlbrown in reply to AlexysB]

Thanks for the positivity! I'm having family friends and even strangers tested and just playing the waiting game but I was scheduled for transplant in dec and at my preop just days before my blood somehow changed and surgery was cancelled, I felt so devastated like this is never going to happen. I try to stay positive but it's so hard depression definitely has his grip on me . Your positivity restored my faith some so I thank u for your story ❤️

[barb2454 in reply to Heatherlbrown]

So glad to here that you were encouraged by another willing to share. I"m sure you will be able to do the same thing one day.

Keep talking to everyone that are able to about your journey. It helps and it makes more people aware of the need for kidney donors. Blessings.

[Heatherlbrown]

So sorry your son is going through this I'm 38 and have end stage renal failure I started out on hemo and just couldn't handle it , I currently do PD but my prescription keeps going up cause it just doesn't seem to be working the greatest any more . I'm in same boat as him I feel defeated most days the depression is the worst , I rarely leave my house and I know I need to keep active but once the depression takes hold it's was said than done . I was all set to get my sons kidney in dec then a week before surgery when went to do my preop something in my blood changed and the surgery had be cancelled my son and I were both devastated . I'm still having my family and friends and even strangers from fb tested to be a donor . I will pray that your son can soon find his hero donor that saves his life , until then just continue to love and support him that's really all family can do .

[barb2454 in reply to Heatherlbrown]

You hang in there too. Keep trying to get past the depression. I KNOW how hard it is. I have severe bone thinning from spending so much time in bed. I recently had two breaks within two weeks. My wrist and a week and a half later, my pelvis. My first broken bones at almost 63 yeaes old. 😂 I'm healed now and I've started water aerobics and will be walking and working out at the gym. I want to be in good condition both mentally and physically just in case it's God's will glr me to get a new kidney. Praying for extra strength for you.💗

[cynthia346 in reply to barb2454]

Great advice. I pray that you will heal well and get a new kidney soon.

[tktagent__64772]

Since he has end stage kidney disease he will qualify for disability.

[cynthia346 in reply to tktagent__64772]

Still waiting for Social Security to approve his disability. Its been 5 months.

[tktagent__64772 in reply to cynthia346]

I think it makes a difference where you get diagnosed at. I didn't qualify for disability until I moved out of Oklahoma and in to Missouri. I got approved 2 months after I moved.

[cynthia346 in reply to tktagent__64772]

Interesting?? My son lives in Memphis TN. They told him it would take 4-5 months for approval.

[tktagent__64772 in reply to cynthia346]

The lawyer I had in Oklahoma said that I wouldn't qualify, I got that one in Bartlesville, OK, I went to Tulsa, OK and got a "disability lawyer" and got approved.. You don't even have to pay them. when you get approved for your disability,. you usually get 2 or3 months at one time and the lawyer will take his fee out of it.

[Heatherlbrown in reply to cynthia346]

In Ga I had to be on dialysis 6 months and my coordinator at dialysis clinic did all paperwork for me I just signed some paperwork she submitted everything. Then when time came I did a phone interview with them that was it my social security disability and Medicare were taken care of also my coordinator got me hooked up with American kidney fund to help offset the cost of my primary insurance which is expensive so definitely ask financial coordinator to help u with some grants and things to help the

[cynthia346 in reply to Heatherlbrown]

Your coordinator must be an angel. The social worker at my son's dialysis center doesn't seem to know anything about applying for disability or Medicare. My son had to go to the social security office to apply for Medicare in person. They would not accept an online application. I spend most of my time calling her to get her to take care of issues that come up. I found out about the AKF on my own. I contacted her about getting my son's medical premiums covered by the AKF. This is part of the reason my son is so frustrated about being on dialysis. Thanks for replying to my message.

[Heatherlbrown in reply to cynthia346]

I'm so sorry that your social worker is not very helpful which I don't understand that's what they supposed to be there for to help navigate through that kinda stuff

[barb2454 in reply to tktagent__64772]

Not necessarily. Depends on your work history. I stayed home and raised my kids, I have EndStage Renal Disease and I don't qualify for disability. It's okay though.

[Heatherlbrown in reply to barb2454]

Have u at least got Medicare?

[cynthia346 in reply to Heatherlbrown]

Yes, but it took one year to get on Medicare.

[barb2454 in reply to Heatherlbrown]

Yes, I do have Medicare and we also have TriCare for Life so we are fine.

[cynthia346]

Thanks I'll keep that in mind.

[Dialysiswoman]

I see this was 2mo ago hope he is feeling more hopeful and positive. I've been on dialysis for 2 yrs now and I'm 35 for me it's very easy to get depressed but I try to do as many thing that I used to do and having family and friends around always helps. My brother is on it as well it help to have somebody going through the same . Does your son have anybody at dialysis that he's friends with or comfortable to talk with? God bless hope that helps

[cynthia346 in reply to Dialysiswoman]

Hello,

I appreciate you replying to my message. My son is doing a little better. Unfortunately he now has to have parathyroid surgery. His depression got really bad. The neurologist put him on a medication for pain in his feet (neuropathy) but also helps with depression. I'm praying that after the surgery he will feel better.