Polycystic Kidney disease chat & community

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Hi everyone my names Mary I have been here before sometimes talk others not. Well we just found out tonight were going on round 2 with PDK...That is the transplant my husband recieved is failing... It's NOT all bad tho it lasted 12 years and the doctors were very pleased with that us too he got to see his daughter get married and now two beautiful grandkids come to life and for that Iam so thankfull.

But theres another side of me the anger the thoughts of going through it all again! The pain this man will suffer and not much I can do but stand by! I am in noway giving up the fight however just not my style! My daughter and I are going in next week to see if we can donate (hers of corse depending on her DNA) I sure one of us will be able to give ..... It just makes me feel so tired and hopless at times is it wrong or selfish to have these feelings? I mean frist time around we just did it but now I know whats going to happen and Iam freaking mad as hell.... someone please tell me this is normal.......

or if Iam nuts thats ok too.....

I am sorry that your daughter was diagnosed with PKD. After a car accident last year our middle child was diagnosed with PKD. It is heart breaking news. You did not say how old you and your daughter are. If she is not having symptoms it will probably be years until she needs a transplant, if she needs one at all. They say that the average age of failure is in the 5th decade. How old will you be then? Too old to donate? Try not to worry and stress over the future.. I am optimistic that my son will have treatments available for him in another 20 years that will not require a transplant. Do what your heart leads you to do now. Take care.

Hi Donna shes 28 not sure how long it will bw as she needs to see her doctor to see how far along she is my husband was 36 when he went into failure GUESS IAM JUST SCARD THATS ALL....

hi i am 31 with pkd and understand how scared you are with your husband and your daughter....stay strong bc they too need to see someone strong bc like you they don't understand i am going on 5 years and don't understand all but that what this group is for if not for the caring people i too would give up.. i was told that we are not given something we can't handle and that has been my backbone so to speak.... take care and i hope all goes ok

Thanks all for the well wishes I went in today started my testing I sure hope nothing else goes wrong.... Iam trying my best to hang in there I cant seem to get through to my daughter shes very depressed ,,, I just want her to take care of her family and not worry about us ,,, she has two little ones who need her... I could go on all day theres this helpless emptyness Iam so feeling, BUT I CANT LET IT GET TO ME!

I usually think that the best inspiration comes from those who have had the same challenges. Unfortunately, I have not walked in your shoes. But one of the other members here just sent me this story (thanks, artsyannie!), and it seems to fit.

A carrot, an egg, or a coffee bean?

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil.

In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil, without saying a word. In about twenty minutes she turned off the burners.

She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she asked, "Tell me, what do you see?"

"Carrots, eggs, and coffee," she replied. Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, "What does it mean, mother?"

Her mother explained that each of these objects had faced the same adversity -- boiling water. Each reacted differently.

The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak.

The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

"Which are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?"

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level?

How do you handle adversity? Are you a carrot, an egg, or a coffee bean?

Hi everyone just a fast note:

Tuesday is the day I have cleared for donating....

Scared yes, happy yes...

Just not sure who's going to take my role as care taker lol...

Mary! What wonderful news. Please keep in touch and let us know how everything is going.

I will keep you and your in my prayers daily. God bless you!

Hi all well its done ,,,,,Iam in a hugh amount of pain,,, but its getting better with each day,,,,

My hubby is doing great he got to come home today and cant sit still I dont mind saying Iam a bit jealous,

My kids have come trough like troopers that they are and cant wait to feel 100% again Iam telling one thing giving your kidney sure make you have a complete new prespective on the whole transpalnt picture...

Congradulations on being able to donate to your husband I hope everything is going better now and you are both feeling much better soon!!!

Mary , congratulations ! I'm so glad to hear that hubby is home and all is well with both of you.

I think it is wonderful that you were able to donate for your husband. My husband says when the day comes he will be there for me also.

I hope that this message finds you all well. Take care and get your rest.

Well I am starting to feel better , not normal bu better. I almost think there should be a place for donors to write up just what it takes to give .....lol

Anyways I think its sooooooooooo sweet you husband offering to do this for you,,,, it really is alot for one to go through, but when its your loved one life on the line I guess theres no question as to what you have to do!

Again I would like to thank all of you for your thought and parys,,, and lets hope someday soon PKD will be a thing of the past!

i've read board for yrs. but seldom post. my husband is awaiting transplant. i'm not eligible to donate because i have high blood pressure. glad to hear you are recovering from your ordeal. just wanted to encourage you about your daughter. there is always a cadaver donor, but better yet, a nephrologist told us he thinks that we are only a few yrs. away from medication that will slow or stop the progression of the disease. hang on!

you are NOT nuts, if that were me i would also be very frustrated and angry.

Hang in there and i hope all goes well, i will be thinking of you and your husband.

Hi all well we are doing great! Starting to feel more like me ... And my hubby hes doing fantastic....

Thanks so much for posting about the new meds they are working on I told my daughter and god I wish I could show you how her face light up!

Its been a hard year so far I had 2 family memebers with cancer , a grandson with autism, and us, alot to handle BUT WE ALL MADE IT!

Do I believe in the power of pray,,, yes you can say so,,,,Do I believe in the power of never giving up,,,yes you can bank it!

I would like to thank all of you for your kind words prays and thoughts and strength .

Important Announcement The MSN Groups service will close in February 2009. You can move your group to Multiply, MSN’s partner for online groups. Learn More
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