Looking for ESRD Support Groups

My 18 year old daughter has ESRD and only 4% of her kidneys are functioning. I am 55 and my husband is in Iraq. I thought she was having an appendicitis attack when I took her to the E.R. The Dr. drew blood and her toxin level was at 10. They put her in the hospital, put in a port and now she has dialysis 3 times a week.

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This happened on April 8th. I still am trying to wrap my mind over all of this. Other than sore throats, she had never been ill. She had never had a UTI. They say they don't know why this happened other than her immune system turned on her own body.

My family lives out of state and she is my only child. Most of the time I have no one to talk to and it is hard at times. Yes, she is lucky to have 3 people offer her a kidney, but from what I've heard, the anti rejection drugs have bad side effects and in 15 years, she will need another kidney.

I have searched websites, but is anyone there that has been through this? I just need to speak to people who know what I feel. I am her caregiver and try to be the best mom I can. I would like to hear other people's experiences with this. God Bless each and every one of you!

By Bev from Butler, OH

June 7, 20100 found this helpful

I have no advice, but I am on a prayer chain with an individual who is on his second transplant. If you want to send your e-addy I will pass it on to them. Please know you and your daughter (and your deployed husband) are on my prayer list. I hope you can respond to this post.

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June 7, 20100 found this helpful

Hi Bev, I'm so sorry to hear about your daughter.

I don't know if this will help but it certainly wouldn't hurt to try. I believe everything comes down to diet when it concerns your health. I had chronic IBS, bloating, inflammation, constant abdominal pain, headaches, major skin irritations, pains in my chest and lower back and all my joints and many other nasty things going on with my body. I found food combining and it saved my life. If you Google "food combining" you will find a way of eating that will take the stress and strain off your daughter's body and may even help her to get well.

You don't need any special food, just your normal diet but combined in the right way. I'm no doctor but I believe that inflammation is the cause of a whole host of maladies that you wouldn't normally associate together.

Try this way of eating for a month and see how things go. At the very least your daughter's body will be functioning better and with less strain which may just allow her immune system to improve the ESRD.

Good luck and please keep us posted on her progress.

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June 7, 20100 found this helpful

Ask someone at the Dialysis Center if they can guide you to a support group. Maybe contact a social worker at the hospital to suggest a group. Google ESRD support groups near your town. Ask your minister for help. Pray with your daughter. I know this has got to be extremely hard for you.

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June 7, 20100 found this helpful

I will hold you both in my prayers. Here is a link to some support groups

http://www.davita.com/kidney-disease/emotional-issues/a/1211

Good Luck to you both.

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June 7, 20100 found this helpful

My personal experience is chronic fatigue and fibro where my body had turned on itself. One saving grace would be that in the 15 years of needing a 2nd transplant, our technology will be increasingly in her favor as each year passes. I have had close friends with family members not have the horrible rejection or issues with medications, so it comes down to a personal experience with it once it happens. Put your faith in the Lord, she is 18, even tho you are mom, it is her right (unless you are guardian) to make the decision. You cannot feel her fears or desire for which ever she chooses. You cannot 2nd guess what you would choose. The Lord will hold you in his hands.

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June 8, 20100 found this helpful

My Friends son has her kidney and it is now 30 years old. So that is not always true about a 15 year kidney. Good Luck.

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June 8, 20100 found this helpful

Please, please consider getting a kidney transplant for your daughter. She is way too young to be on dialysis for the rest of her life. My nephew went on dialysis when he was 23, and it was obvious he was not very healthy, even with the dialysis. It took so much energy out of him. He received a kidney from one of his cousins soon afterward though, and is now very healthy and leading a normal life.

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June 9, 20100 found this helpful

Bev, I can't imagine how awful it is to have something like this happen out of the clear blue. Our experience was quite different but the outcome may be comforting for you. Our daughter was diagnosed with a rare cancer as a toddler, had chemo, and with all the side effects, over the years her kidneys failed (on her 21st birthday, the very day she was dropped off our health plan). She had to drop out of college. She was tired all the time but still had some kidney function. Eventually she had to go on dialysis for 5 1/2 years--a very, very difficult life for anyone, let alone a young woman. We certainly met people at the clinics who were waiting for a second transplant, but in many cases they had made bad decisions (drugs, etc) to cause the transplant failure. Our daughter just passed her 5th anniversary with a cadaver kidney that was a perfect match from a stranger halfway across the country. Yesterday she had her regular appointment at the clinic and her creatinine is 1.6, probably the lowest and best reading of her entire life (she's almost 34). So I can telll you it's tough to watch your daughter suffer, but I can also assure you that the path back to health is there and I wish you a short journey along it.

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June 9, 20100 found this helpful

I have an 81 year old cousin who is in her 28th year as a kidney transplant survivor. The kidney came from her brother so I'm sure that has been part of her success. Her main problem has come from the transplant drugs she has taken for years but at 81, you would expect some of the same problems (brittle bones) without a transplant. I know it must be rough not being near family to help with your stress as well as the actual care. Good luck to you, your daughter and your family.

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