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Offline KathH

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Major Decision
« on: January 07, 2017, 04:00:48 AM »
Hi my name is Kath I live in the UK. My dad was diagnosed with PKD over 20yrs ago. After yrs of dialysis my mum donated a kidney to him (worst and best day of my life) it was successful and he has been dialysis free for 10yrs. Unfortunately his kidney is now in decline and will soon require dialysis again. I'm dreading watching him fade away, he is only in his early 60's and with a large and loving family around him has much happiness yet to come. I want to help him by being a living donor, I have two young children 9yrs and 12yrs and am scared that what if something goes wrong in the op and I leave them motherless. Am I selfish to consider doing something that would put me at risk.  I know I will always feel guilt if I don't help my dad. Is anyone else in the same position? How do you choose between your kids and your dad? I know the success rate is very good when donating a kidney for the donor but can't help thinking about the worst case scenario. Sorry for waffling on a bit. Any advice would be much appreciated.

Offline elephant

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Re: Major Decision
« Reply #1 on: January 09, 2017, 08:22:51 AM »
Dear KathH,

I donated to my Dad when he was 75, and nearly six years later his kidney function is terrific.  I understand the 'fear of guilt' you are experiencing first hand.  I chose to recognize it was present and move on without obsessing over it. 

There is a small but real risk associated with every major surgery.  There are risks associated with decisions we make every day, including driving the kids to school, going to the dentist, or eating in a restaurant.  But I don't think you are facing a choice between your children and your dad -- might that thinking exaggerate the risk and attach a lot of emotional weight?
Perhaps if you research both the benefits and the risks you will be able to think about donation more clearly? 

BTW, have you been testing for PKD genes?  You do want to know if you have autosomal dominant PKD genes.  I think that's the true risk you need to consider.  Fortunately, it is one that can be assessed with a test.  If you haven't had genetic testing, I think that is where you need to start.  Actually, I'd want to do that whether I considered donation or not.

Love, elephant

Offline CK

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Re: Major Decision
« Reply #2 on: January 11, 2017, 08:28:06 PM »
Kath, you take a bigger risk every time you get in the car and drive, statistically speaking.

If you had PKD, you would most likely know by now - my husband has it and he was diagnosed at age 15, in the 70s.  So I'm assuming you already know you don't have it, and that means you won't ever develop it.

Obviously you have to take your family into consideration, but your risk of dying in surgery is actually quite low.

Offline sherri

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Re: Major Decision
« Reply #3 on: January 17, 2017, 05:37:46 PM »
This is a major decision and only one you can make.

For families with genetic issues it is probably even harder. there is a wonderful book written by Suzanne Ruff- The Reluctant Donor and she talks about her family with PKD and her struggles with the decision to donate. As a related donor, I had in the back of my mind what happens if my children inherited the kidney issues some of my family members have. I would only hope if that happens some kind soul would sign their organ donor card so they would not have to wait.

dialysis is an option for your Dad while you are undergoing thoughts about this. He can do home dialysis or peritoneal which may be less taxing on the body.

All the best to you while researching this and feel free to post whatever your decision.

Sherri

Sherri
Living Kidney Donor 11/12/07

Offline MSoler

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Re: Major Decision
« Reply #4 on: January 20, 2017, 03:49:29 AM »
Dear Kath,

It is a big decision and not to be taken lightly.  I too waffled at first and thought someone else would step up.  When it didn't happen due to people not matching I started doing my research and realized I really didn't need my kidney and could live a normal life.  I decided to donate to a 3rd cousin who was 12 years old and couldn't let him go on dialysis knowing he would stop growing forever if he didn't get a kidney within 5 months.  Once I decided and went through the process I found that as a donor your information is confidential.  The recipient doesn't even have to know you are checking.  There is a chance you may not even be compatible or the correct blood type and may be waffling and stressing for nothing.  The transplant coordinator and team are very selective and test you through and through as well as check medical history of you and your family to be sure you will not need that kidney.  The other item is that is they lose you in surgery their whole program gets closed down at their hospital. They have a vested interest in making sure you come through and can make the surgery like a champ.  This was very comforting for me to find out. 

After going through the process and hearing randing people's stories, when I told them I was donating, about families torn apart due to family pressure to donate, I realized it's easy to just start the process and you really don't have to go through it if you change your mind.  Your family doesn't even have to know your checking it out because it's all confidential.  That way you get educated, completely find out your medical status, and they also will not allow you if you have reservations.  They have an in house and unaffiliated counselor at the hospital go over everything with you to make sure you are not being coerced and are ready mentally yourself.  The goal is to have the donor totally prepared and have full knowledge of what they are getting into.  At one point it almost felt like they were trying to talk me out of it by asking some of the questions I hadn't even thought of like what if one of your kids ever need a kidney.  Wow, I was like, "I'm not going to hoard my kidney because of a what if".  My answer was another family member would step up in that case. Hope this helps! 

Marie
Living kidney donor 1/21/16

Side note: From start to finish it was 4 months before the actual donation due to testing.  If they have any questions the review board makes you retest or do more testing to be sure you qualify by being in perfect health for donation.  This is all after they find you are match which is only after blood testing.     
« Last Edit: January 20, 2017, 03:52:23 AM by MSoler »

Offline CK

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Re: Major Decision
« Reply #5 on: January 22, 2017, 04:35:27 PM »
Just to add because my post was not clear - PKD is autosomal dominant.  So if you don't have it, you won't ever get it, and your kids can't get it either.  If you have the gene, you have the disease, and you can't pass it along to your kids if you don't have the gene. 



Offline Paparafa

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Re: Major Decision
« Reply #6 on: February 08, 2017, 05:55:19 AM »
Dear Kathi,
I think we all experience your feelings.  I have five children with three of them boys still at home that I want to raise as an active dad...I had a VERY concerned wife and loved ones...at the end, it really is your decision.
There is always a risk...in my case...after knowing my brother in law has a new lease in life and will get to enjoy his three grandchildren for a few years more, I am glad I took the risk.
My only regret is that I do not have a third kidney to give him in 7-10 years.
Best to you and your dad,

 

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