First, let me introduce myself. I am a 30 year old stay at home mother, with a beautiful 3 year old son.
I was diagnosed with type 1 diabetes when I was 10 and have been living normally, until the past few years. In August 2005 my kidneys began failing, and in December I needed to start dialysis. I go to a dialysis center three times a week now.
I am having a really hard time dealing with the physical effects of the disease along with the emotional effects. Physically, I am constantly tired, feeling swollen and puffy, and just generally sick I've been trying my hardest to adapt to the new diet, but it's been really difficult since I am used to eating vegetables and snacks, trying to keep my carb intake consistent. I am also a huge water drinker and having a hard time coping with my fluid restriction.
I feel like my kidney failure is taking over my life. I spend so much time at dialysis, and not enough with my family. I feel like I am not there as much with my son. It's even making me feel disconnected from my husband, like he does not understand what I am going through.
So I ask you -- how do other kidney patients manage to balance this condition along with family life? It's been quite a change in my life, from being generally healthy with diabetes to getting kidney disease. I have the greatest husband in the world, but sometimes I can't help but feel that lately I am becoming a burden for him. If anybody else is in this situation i would love to hear from you. Thank you so much!!
Have you ever considered getting into a home dialysis program. Most home modalities offer more dialysis which in turn makes the patients feel tremendously more energic and healthly. Most home dialysis patients don't have to watch their fluid and diet as with getting dialysis more often their isn't a build up. Check out
www.homedialysis.org. A forum for home patients.
I hope this finds you and yours well and in good spirits. I can not begin to to fortell what may or not happen for you. However, I have had the the opertunity to befriend some folks, like yourself, that made an impact on me and our community. From what you have written, it sounds like you lead a very active lifestyle, thats great. May I suggest that you carry on. Being a parent, the most I hope for, is for our children's health and wellbeing. Please keep in touch and pass-on any concerns, more importantly, thoughts.
I feel you Janetmom76. All I can say is don't let dialysis define who you are. You have what most of us want, a great husband/wife and a beautiful son. Thats your inspiration. Stand tall and true.
Shirly hit it right on head. The technology is changing rapidly and there are so many innovative and creative products for short daily or home dialysis that are coming available. Inquire, ask questions, if you alrday haven't done so, regarding home dialysis modalities.
I began dialysis when I was 27. 14 years and three transplants later I try to stay as active as I can visiting, meeting and speaking with patients on compliance issues and so forth.
Talk to your husband and include him in your experience. Don't follow my lead and shut everyone of your afflicton. Have them stop by for a visit and spend some time around the unit/staff if your center allows visiters.
Take care bye for now
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