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Author Topic: 15 years today!  (Read 670 times)

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Offline Clark

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15 years today!
« on: May 08, 2018, 08:15:24 AM »
For all you considering becoming donors, or already on the path, wondering about the long term, I can speak to 15 years out. My recipient remains well, as do I. We’ve both gone through significant life changes post surgery, some directly as a result, generally positive. May you all have similar success.
Unrelated directed kidney donor in 2003, 58 gallon blood & platelet donor and counting!
Rep to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, & Ad Hoc Public Solicitation of Organ Donors Committees 2005-2011

Offline Orchidlady

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Re: 15 years today!
« Reply #1 on: May 08, 2018, 04:09:01 PM »
Congratulations to you both!
Donated Left Kidney to Husband 10/30/07
Barnes Jewish Hospital
St. Louis, MO

Offline Fr Pat

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Re: 15 years today!
« Reply #2 on: May 08, 2018, 07:59:41 PM »
Congratulations! Buy yourself a cake!
   Fr. Pat

Offline Michael

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Re: 15 years today!
« Reply #3 on: May 08, 2018, 10:10:10 PM »
Congrats to both you and your recipient! A happy success story.
Michael
Living Donors Online
Our mission: to improve the living donation experience

Offline sherri

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Re: 15 years today!
« Reply #4 on: May 09, 2018, 06:49:36 AM »
Wonderful news! continued good health to you and your recipient.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline elephant

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Re: 15 years today!
« Reply #5 on: May 09, 2018, 03:00:02 PM »
Many years of health and happiness to you both! Love, elephant

Offline Quilter

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Re: 15 years today!
« Reply #6 on: May 29, 2018, 11:23:29 PM »
I will be 20 years out on June 8, 2018. My recipient went on dialysis 1 year after receiving my kidney and I have started having kidney function issues about 3 years ago.

Offline sherri

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Re: 15 years today!
« Reply #7 on: May 30, 2018, 06:43:46 AM »
Quilter,

so sorry to hear this. What kind of issues are you having? are you under the care of a nephrologist? Did you go back to your transplant center with your labs so that someone is following this?  Lack of donor follow up has been a popular discussion here. How are we to know how donors are doing long term if there is no collection of data?

keep us posted. would love to hear how you are doing.

sherri
Sherri
Living Kidney Donor 11/12/07

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Re: 15 years today!
« Reply #8 on: May 30, 2018, 10:14:17 PM »
Three years ago my blood work came back with GFR-37, creatine close to 2. I was told to go see a neuphrologist, but since I don’t have any health insurance I went to a dietation at local grocery store.
Put myself on a renal diet, low protein, low potassium, no processed foods, etc. Last blood work 1 year ago, GFR was in 50’s, creative was 1.7. My A1C was still a little high, cholesterol was 305. I have been on blood pressure meds since 2 years post donation.

I am not overweight, 5’6, 135#, and very physically active. Just hiked Grand Canyon twice in April, 55 miles total in 2 hikes, 5 days apart. Hiking is my exercise of choice because of pain in left side post donation. My surgery was the split you in half, take your bottom rib. It took 16 years, asking several doctors, finally going to Mayo to find out surgeon had screwed up and sewed nerve endings with muscles in my side. When nerve endings get irritated/inflamed it hurts! I have a high tolerance for pain, as my children were born (induced) without any type of pain meds.

As I am self employed, my health insurance went up $2400 a year in 1998. Transplant doctor tried to collect from my insurance, and recipients insurance for pre op tests, etc. I no longer have any health insurance, make to much for subsidized ACA, so it would be $1700 a month for $6550 deductible.
My recipient pays $115 a month for $1000 deductible, his wife quit her job, he only works part time, they have 3 kids. Guess maybe my husband of 40+ years could divorce me, maybe I’d qualify then.

Sorry if I sound bitter, my side is on fire lately, not getting much sleep because of pain. I don’t understand how come no one fights for the rights/welfare of the living donor. Their is a lot of help for the person needing a kidney, but no help for the living donor. No follow up care by the transplant hospital/doctors, no following the donors health 10, 20, 30 years later. It seems like every day there is another “donation” story on the media news, but there doesn’t seem to be any stories about not-so-great donation outcome stories. Why? Is it because there is “BIG” money for doctors, hospitals in living organ donations.



Offline sherri

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Re: 15 years today!
« Reply #9 on: May 31, 2018, 04:07:44 PM »
Quilter,

I am so sorry this has happened to you. I do tend to live with the fear that my lone kidney may not be able to compensate as I age. there is a facebook group living donors with complications. you may find it helpful. Those group members also express the same concerns you did, no help for donors with complications. I am a bit surprised there haven't been any legal actions taken against some centers. have you gone back to the hospital where you donated to get some help? where did you donate? is there a patient advocate who can intervene. I believe the one compensation donors should get is Medicare, since by donating they have saved thousands of dollars to Medicare in dialysis payments. you can try to contact UNOS at least to report all your complications. they only follow donors for 2 years so all your complications may never have been recorded.

I hope you are able to maintain your kidney function now. has your recipient been on dialysis since the year after transplant or was he able to get another kidney?

This is a very sad to hear. you may want to post this on an independent thread so that others can hear all types of experiences. I hope now 20 years later the transplant community has improved especially in donor selection.

All the best to you,

Sherri
Sherri
Living Kidney Donor 11/12/07

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Re: 15 years today!
« Reply #10 on: May 31, 2018, 09:47:04 PM »
I have nothing against living organ donation, but there needs to be longer term support for the living donor. No one does any long term follow ups! They sure like to make all news media stories sound how great it is, but never anything about the ones that have complications. Is this because there is vast amounts of money in organ donation?
My concern is for the 20-30 year olds going into this blindly. There is a lot of men having ED issues, post donation, wouldn’t that be great for an otherwise healthy 20 year old, he has a lot of years to live with that. I was 40, it immediately put me into menopause. My periods ceased at 42, what about a 20-30 year old that hasn’t had children yet.
If it is so much cheaper to have a transplant rather than dialysis, then why not put all living donors on Medicare, instead of punishing us for being a giving person. If you can’t have a baby you can hire a surrogate, but it is illegal to be paid for donating a organ. When the donor heads to the operating room there should be a 1 million paid up life insurance policy on them. We had 3 young sons, large farming operation with large hog/cattle herds. My husband would have lost his wife, mother to his sons, hired person (hog operation was my job), and been left in a huge financial mess.
My donation was at St Luke’s in Kansas City, MO-no aftercare at all. I sure hope they have improved in the past 20 years. I never talked to anyone other than Dr James Mertz, my nephew’s neuphrologist. And all appointments for pre op were called to my sister, not me. I really felt like a lamb being led to slaughter as sister and her husband escorted me to all appointments. I felt like they didn’t want my husband around, or me to ask questions.
Oh well, live and learn. I wish the media would tell both sides of  organ donation. No one wants to report about the outcomes with complications., even family members.

 

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