I’ve been a social worker working with people on dialysis and with transplants for many years. It’s very common for someone starting dialysis to be depressed, to feel hopeless, and to feel overwhelmed by all the changes. I was always surprised if I didn’t hear what you’re expressing from a new patient. This is why dialysis clinics have clinical social workers on staff. Your social worker can help you look at what you did before and what you’d like to do so the treatment team can help you achieve your goals. You might want to read the module on Kidney School on coping with kidney disease.
http://www.kidneyschool.org
I hope someone has told you that people on dialysis, especially those on PD, can live full lives – working, raising families, visiting with friends, traveling, etc. I’ve known people that have lived 40 years or longer with dialysis and transplants. I’m sure you chose PD because you believed it would fit best with your lifestyle. It still can. Some people find that CAPD (manual exchanges) interrupt their day too much. That is why so many people do CCPD (automated PD using the cycler). Have you talked with your home training nurse about whether you would be a good candidate for the cycler? If so, you could do this overnight while you sleep leaving your days free for other activities, including work or school. You can read about CCPD from the home page of this site under the types of home dialysis.
I’m sorry you had the problems with your catheter that you did. Hopefully those problems are behind you now. If you have more catheter problems, you might ask if you could talk with a different surgeon. Some surgeons are more skilled than others in catheter placement and resolving problems.
You say you had to pay twice for catheters. I hope the dialysis clinic staff (usually the social worker) talked with you about Medicare. You’re young and may think you’re not eligible. Social Security could tell you if you are based on your work record or the work record of a spouse if you have one. People on in-center dialysis have a 3-month waiting period for Medicare, but for people that start home training before the end of that waiting period, Medicare can start the first day of the month dialysis started. This way Medicare can help pay for inpatient and outpatient charges. If you have insurance through your job, hospitals, dialysis clinics, and other providers could bill Medicare second after that insurance for the first 30 months and then bill Medicare primary after that. You can read these two booklets to learn more about Medicare and about options for living a full life:
So far as a transplant is concerned, it’s good that you’re on the list. I hope your living donors are being evaluated now. Having a living donor is definitely the fastest way to get a kidney transplant. Today more transplants come from living donors than from deceased ones. You might want to read this FAQ about living donation, including reading about paired donation in case your donors don’t match you.
http://www.transplantliving.org/livingdonation/questions.aspx
Finally, I used to tell my patients that it takes months to adjust to being on dialysis. I’d tell them it was like grieving after someone dies. You wouldn’t expect to be over a death in a few weeks. So expect to be sad, but I suspect you have people that love you. Reach out to them and let them help you keep your spirits up. Stay active and do fun things. Whatever you do, do not sit in your house with the curtains drawn and feel sorry for yourself for more than a short time. I’m sure you have a lot to live for so as Nike says, “just do it.”