If so please speak up, my boyfriend is 48 and this November he had BOTH of kidneys removed due to bi lateral cancerous tumors. So far, this has been awful. Half the the time I’m not sure if this was the best choice. The doctors are no help, and there is absolutely no support from anyone with the same situation that he is in. He’s depressed, dialysis 3x a week at 5 hours a shot just about wipes him out for days. His disability just got canceled because he was making to much at his part time job, we are constantly fighting about his health, money, everything and anything. We love each other so much and I would do anything for him. It kills me to see him this way, but I just don’t think I am any help in this situation. It seems all I do is nag on him, but really I’m just trying to get him to stay on top of things, stay positive, and fight for his life.
Please help. Or pray. Or both. Thank you in advance.,
Written by
Kristy123
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I'm sorry about your boyfriend's struggles and what it is doing to the relationship. If the bilateral nephrectomy stopped the spread of cancer, it sounds like it was the right thing to do. If the kidney's had stayed the cancer could have spread, then his kidneys may have eventually shut down and he would would have ended up on dialysis and chemo/radiation.
I was on hemo for three years with the same schedule as him then peritoneal for twelve years. The law says that a person on full disability can work and earn up to the dollar amount of their disability before they lose one dollar of their disability. At my last job there were people who the supervisors allowed to regulate their hours so they would not earn so much to effect their disability. It was a government contract that used mainly people with disabilities.
I remember being wiped out for nearly 24 hours after a dialysis therapy, I didn't even try to work while on hemo. I struggled with some depression too, I don't want to suggest what I did to battle my depression because it is unhealthy and illegal. The depression and my desire to self medicate didn't go away until I started living right.
Do encourage your boyfriend to be active in his healthcare. I remember feeling like I had lost control over my life because I was no longer able to do the things I had been able to do in the past, and I thought I had to rely on the nurses and technicians at the dialysis center. That is one reason I preferred peritoneal over hemo; I was able to be more independent and take control of my health. If he has never considered PD or if that is not an option, he can still be in control of his health by means of controlling his diet, fluid intake, and exercise. When a patient is as healthy as possible in their own body and they maintain their dry weight, the dialysis treatment is far less severe.
Hey Kristy123, Dialysis on its own is like a part time job and its demanding. Anyone who does dialysis is a strong person. I had both my kidneys removed almost 12 years ago and continue today with home hemodialysis. I love doing mine at home. Perhaps something like that would interest him. Most people feel so much better doing it at home. Depression is common for anyone dealing with a chronic disease. It can be eased with counseling and medication. It also takes time to ease into a schedule that works. I worked nearly full time for about 7 years while on dialysis. Then we moved twice. I worked from Nov to April for a tax prep company and loved it. Sadly it was a temporary thing, but I hope to do it again next tax season. I'm looking for work now. Encourage him to speak with his social worker about the depression, she should have information on counseling etc.
If he is/was receiving SSDisability (NOT the same as SSI), he can earn $1000/month before it is considered gainful employment and negatively impacting his monthly disability payments. If he is getting SSI, then it is based upon household income and need. He could ask for a Ticket to Work which allows him to earn as much as he wants within a 9 month period before his disability would stop. Vocational Rehab can offer lots of information regarding this.
Have either of you checked out kidneyschool.org ? Its a great informational site on everything from sexuality to billing. There are oodles of social media support groups as well.
You are not alone. Send me a private message if you'd like to. Blessings & Peace
Hemodialysis starts out hard, and while it never gets easy it does get easier over time. Echoing Kidneycoach, taking control of your treatment at home, or learning how to treat yourself at a sympathetic unit, makes a big difference mentally: you start to feel more in control and that can really help with the depression. Also at home you have the freedom to set your own schedule and find the routine that works best for you so you get the best out of your treatment.
Accepting a chronic condition takes time. It's painful. You can feel very lost and very alone. But it does get better as your body adapts to the treatment. I used to get cramps, itching, blood pressure drops, needle pain and terrible headaches, but the body is amazing and it can learn to cope. Your boyfriend may have a long way to go before he feels at all well, but there's every chance that he will reach that point in the end.
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