Marion

Marion

Hello, everyone my name is Marion I'm a mother of six first time on this site. I was diagnosed with Pkd about 8 years ago, I am 56 years of age I love my children, and my life. I am trying to stay a little longer I am looking into a kidney transplant, I am having all six of my children tested to see who has Pkd. I never had surgery this will be the first time I have had surgery in my life I am petrified everyday is a struggle for me. I go through depression and struggle with my weight. Living here in NY every week a friend or family member will call me to go out but I tend to decline it and stay in the house. My weight gain makes me feel uncomfortable, is anyone dealing with these issues? What should I expect after the transplant? Marion

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  • Marion, first of all you are not alone. The very first thing you need to realize is just chill, I have the disease and have gone through so much, PD, Kidney rejection, Sleepy Kidney, stroke, etc. The first think you need to realize is you have to be careful and just be happy. You can't do anything about it but follow God and chill. Anything else will just worsen your condition. Being in NY you should look to see if one of your children can do a transplant swap. Your kids are generally never a match, but most others are the same. So a swap is you child donates for someone else, and their spouse or child donates to you. It's in your best interest to find a living kidney. Also get on multiple lists. Then chill and wait. Don't worry as it won't help. The surgery isn't all that bad, yes it hurts but only for a couple of weeks, they you are back to yourself and you won't be as tired. Either way stay active as much as you can and take all the drugs and the correct doses the doctors give you. Get a really good Kidney doctor and you'll be good. Good Luck and feel free to ask any questions you may want.

  • Hello, Marion. Make sure you see a kidney doctor to know what your current function is. Hopefully, you will be able to get on the transplant list before starting

    dialysis. Do not be overly concerned with the surgery...when you wake up in recovery, you will instantly feel the difference. The data shows that PKD patients

    due better than average than those with other diseases. Watch your current diet and overall health. Transplant centers will remove patients from the waiting list if health deteriorates. God Bless!

  • Hi Marion,

    I'm Stephanie & I'm also 56 yrs old & I live near Harrisburg, PA.

    My kidneys were damaged by very rare blood disorder (TTP) back in 2000. Disease never occurred again but left me with damaged kidneys. I had transplant on Aug 1, 2015.

    Yes it's very scary knowing you'll be having a major surgery. But try to keep in mind that it definitely beats being stuck on a dialysis machine for 4 hrs up to 3 times a week.

    You lose a lot of your life on dialysis. At least get tested & learn all about the transplant process. Then get put on the transplant list. If your 6 kids are not a match you will still be building up time on the transplant list. You don't have to take a kidney if you get a call if you are not ready. You make the decision, not the doctors.

    I too deal with depression & the weight gain. I've always been a big lady, but even more so now. I feel the same way as you do about going out. Why not ask one if your closest friends to come over instead of going out. Maybe you will be a little more comfortable that way. Talk to them about how you feel.

    I found a new friend about 6 months ago & she knew nothing about kidney disease, but she's the most caring person I've ever met. We can talk to one another about anything. I've never had a friend like that & she's an amazing listener. Her family makes my boyfriend & I feel so welcome. Like part of their family.

    I hope this helps.

    Take care!

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