Colleen's Background:
1.) What is your age? 55
2.) Do you have children or grandchildren? 2 children Charlotte 29 and Michael 27 First grandchild on the way in June
3.) How long have you been married? 34 years
4.) Are you on Dialysis Currently? Yes
5.) What type of Dialysis do you currently conduct? Home hemodialysis
6.) What emotional toll has Kidney Failure had on you? At first I think I was in such denial I just thought it was gonna go away and I did everything not to believe it was true. Mainly because at that time I didn’t feel sick. As time went on realty set in that this was happening and it was out of my control. You have a lot of anxiety and depression seems to go hand in hand. Sometimes you wonder if your going to wake up tomorrow so that causes you to have a lot of sleeping problems. You meet people that are in the same situation as you and watch one by one while they pass away not being able to help them at all. You want to live to see tomorrow so you can watch your children get married have a family but you may never see it. Each day is a different day no one day is the same. Today you feel great tomorrow your sick the next day you might be tired and your will to live may get weaker. I try to stay positive and keep myself busy as much as I can. The financial burden that you have causes more depression. I worked for 33 years with the developmentally disabled as an occupational therapist lost my job was able to retire this year but there’s never enough money. The medical bills keep coming in and no one seems to care. All you hear is there is no money for kidney disease its up to the patient to figure out a way for to get donations or money to pay bills.
7.) If you could talk to someone who is interested in donating to you, what would you say? Please consider saving a life you can live with one kidney. I am healthy at the moment I do not have any other medical problems except for the kidney disease. The longer you are on dialysis the more risk of developing other medical issues. I feel my time is running out its been 3 years in May no possible donor. This is because I have an issue with my antibodies which makes me only have a 5% chance of getting a kidney off a list I need a living donor who is either A or O blood type and does not have to be compatible.
8.) What is your blood type? A positive
9.) Where are you listed (name of Transplant Center)? John Hopkins Baltimore Maryland
10.) Once you receive your Kidney, what do you plan on doing with your future? Get a second chance at life. I would like to take s shower I have not been able to take a shower since my chest catheter was place in 2014. I would like to travel to see my children and spend time at my camp being on the water.
11.) What happened that caused you to need a Kidney Transplant? A rare genetic hereditary disease called IGA neuropathy
12.) Do you have a specific religion or religious affiliation? Catholic
13.) How has Kidney Failure/Dialysis impacted your quality of life? Your tied to a machine 5 days a week for 4 hours and then after dialysis your very fatigued sometimes you have to take a nap. No spontaneous unplanned activities, your day is always pre planned around dialysis, drs appointments and how your feel.
14.) What is the first thing that you plan on doing after you have recovered from your Kidney Transplant Surgery? Take a shower and have a drink of beer.
15.) Add any other information which you think may be peculiar to you, and would be of interest to a potential donor. We believe in emphasizing the uniqueness of the individual. I try to keep myself busy I do line dancing twice a week, I go to zumba class once a week, I like to walk every day weather permitting. I enjoy any outdoor activities like camping, kayaking, fishing, hiking, bicycling and sitting around a campfire. I have a go fund web page that has a lot of information on there about my several updates as to what is going on with me if you are interested you can check it out www.gofundme.com/ColleenBerry I also have a newspaper article I will send you. If there is anything else let me know
A Note From Colleen:
Hello,
Thank you for expressing interest and showing your support of my need for a living kidney donor.
I would like you to know that the process of living kidney donation is safe, and if you or someone you know would like to donate, then please send me a message (below). Thanks again!
Regards,
Hear From The Experts:
What is the Altruistic Living Donor Program?
The Altruistic Living Donor Program matches altruistic (selfless) donors with recipients awaiting transplantation. The transplant team is available to fully evaluate all potential living donors, whether living-related, emotionally-related or altruistic. The Renal and Pancreas Transplant Division is experienced in the evaluation and management of all living donors.
Click here to learn about how safe Living Kidney Donation really is.
Click here to learn more about the urgent need for more kind-hearted, generous potential Living Kidney Donors like you!
Colleen In The News:
Colleen Berry and Ellie Donaldson rowed their kayaks in the Ogdensburg Seaway Festival Remington Canoe Race and finished long after every other crafts.
In fact, when they finally completed the trek from Heuvelton to Ogdensburg the only person at the finish line was Race Director Jennifer Cole-Warriner who presented them with medals honoring their determination. Read more...
Colleen's Update:
Well my update is I had a consult with vascular surgeon about fistula I have already had 5 surgeries on my arm to get this working no luck so far. My nephrologist is concerned about long term dialysis having a better acess then the chest catheter. They would like to take a bigger vein in my arm and try to move it or place a graft. My concern is I cannot afford another blood transfusion as I am already in this situation with high antibiodies. I feel like Its been 3 years im running out of time. Im hoping to put it off until fall. This is a major surgery and they are not sure about recovery time. Everytime they go in a loose blood and it takes 6 months to build up my red blood cells with medication and shots. Hoping for a miracle!
Video Testimonial:
Laureen Gerzack is an example of the highly specialized, complicated cases typically seen and treated at Mount Sinai. Over the years, Laureen's kidneys had been badly damaged by diabetes. It came to a point where complications caused by diabetes prevented Laureen from having life-saving dialysis. She needed a kidney transplant or she would die.
Written Testimonial:
“If it can help someone, my goodness yes, do it. What’s the downside?” - Marc (Living Kidney Donor)
Marc is a pragmatic man. A former venture capitalist and the current executive vice president of the Steadman Hawkins Research Foundation, Marc didn’t get where he is today by letting emotion rule the day. To Marc, life is about analyzing the facts and making a decision accordingly. Nothing more. “But, there are times one has to say, ‘What the heck? Go for it,’” he says.
So when his older brother needed a kidney, Marc gave him one, and he did it without a ton of emotion or debate.
“If you see someone standing in front of a dangerous situation, you do something to stop impending disaster,” Marc said matter-of-factly. “It’s what we’re supposed to do.”
Marc’s older brother, Alexander, was diagnosed with kidney disease before he was old enough to walk. Back then, the doctors told Alexander’s parents he probably wouldn’t live to enter kindergarten. But he did. Then the doctors said he wouldn’t live to see his 10th birthday. But he did.
The ominous predictions continued, but his will to live always won out. As medications advanced, Alexander was able to control his disease without dialysis. As children, Alexander’s three brothers probably didn’t know that Alexander’s health—even his ability to live one year longer—was so precarious. “I don’t think that we were ever fully aware of that. We just knew our brother was sick,” Marc recalled.
When Marc was about 12, he remembers telling his brother he would give him a kidney if he ever needed one. Thirty-two years later, in August 1996, Alexander took him up on that offer.
By now Alexander’s kidneys had deteriorated to the point where it was clear he might not survive without a new kidney. Marc immediately asked to be tested to see if he would be a match.
“It was just a no-brainer,” Marc said. Even back then, he didn’t really see it as that big of a deal.
“This is just one of the things I’ve got going on in the next couple of weeks,” Marc recalled thinking. “I’ve got meetings, a new business venture, a new home and other things I’m doing as well.”
Marc was a match—which he always sensed he would be—and the surgery was scheduled. Before the operation, Marc was in great physical health, and his brother obviously wasn’t. For a short time, the surgery flip-flopped that. Now Marc was recovering from major surgery, but Alexander was immediately feeling better because he had a new kidney that was doing its job. But that didn’t last.
About six months after the surgery, Alexander developed complications with one of his medications, and began to have some rejection reactions. The doctors were advising that he get rid of the donated kidney and go on dialysis. He called Marc and asked for his opinion. It was his kidney, after all.
“It’s yours now. You can do what you want with it,” Marc recalled telling his brother. Together they assessed different treatment options that could be done while preserving the donated kidney. Ultimately, Alexander’s condition improved. That was nearly 13 years ago. Today, Alexander is retired and living with his wife in Florida.
Marc said he never really suffered any effects as a result of donating one kidney. An avid bicyclist and skier before and after surgery, he says nothing has changed in his life. Marc doesn’t think too often about his choice to give his brother a kidney. Occasionally, he’s reminded by the scar, but even in retrospect, the decision was simple. And he hopes others will consider doing the same.
Frequently Asked Questions:
Who can be a donor?
To qualify as a living donor, an individual must be in good health, free from any serious medical problems and between the ages of 21 and 60.
What are the risks involved?
Donating a kidney does not have any long-term effect on health. Donors may experience a slight rise in blood pressure and a small amount of excess protein in the urine following surgery. There is no greater risk of developing kidney failure after donating at kidney than anyone in the general population.
Are there activities that I will not be able to do in the future if I choose to donate a kidney?
In general, donating a kidney does not have any long-term effect on health. Some restrictions do apply following donor surgery, including reducing or eliminating the use of NSAIDS and avoiding any activity that may cause injury to the surgical area.
Does the evaluation process have to be completed at Penn?
The entire evaluation process is completed at Penn; however, if the prospective donor lives at a distance, arrangements can be made for some of the initial screening to be done at the donor's location.
Who makes the final decision on potential donors?
Based on the evaluation results, the Transplant team (comprised of nephrologists, nurses, social workers, dieticians and other transplant specialists) decides whether or not to proceed with a living donor kidney transplant as the best therapeutic option.
Who pays for the donor's medical expenses?
The recipient's insurance covers all of the donor's evaluation and hospitalization costs; however, it does not cover lost income, transportation costs or personal expenses. The transplant financial advisor reviews the potential donor/recipient procedures and associated costs carefully prior to the evaluation.
How long will I be in the hospital?
Most donors remain in the hospital for two to three days.
What is the recovery process like?
Most kidney donors resume normal activities four to six weeks after surgery. Donors are not able to drive for three to four weeks after discharge and are not permitted to lift heavy objects. You may need assistance with daily living activities during this time.
How long will I be out of work?
Depending on the nature of the work, donors typically return to work between 10 days and two weeks.
What happens if I decide not to become a living liver donor?
At any point, for any reason, the evaluation process can be stopped. The recipient will remain active on the transplant list and is free to find another potential living donor.
Shocking Stats:
Chief Medical Officer (United Network for Organ Sharing) Dr. David Klassen (Nephrologist) said in a Huffington Post article, "I’ve also witnessed the results of the severe organ shortage in this country. Too often I’ve lost patients because the organ they needed did not come in time. Too many lives cut short. Too many dreams unlived." The following are a few very sobering stats which Chronic Kidney Disease and Dialysis patients should share as well as their loved ones:
90,000 - The number of Dialysis patients that die every year according to Renal and Urology News.
121,076 - The number of people currently waiting for a lifesaving organ in the United States, as reported by the United Network for Organ Sharing.
100,269 - The number of patients awaiting a Kidney Transplant specifically. This suggests that approximately 80.9% of the entire organ transplant waiting list is made of individuals in need of a kidney. It is important to note that living kidney donation is very safe and if found to be a match, a donor would undergo a rigorous health evaluation before donating to ensure good long-term health outcomes.
22 - The number of people who die every single day, waiting for a transplant.
4,500 - The number of Chronic Kidney Disease patients that die every year waiting for a kidney transplant, as noted by the Living Kidney Donor Network.
6 - The number of people added to the transplant wait list every hour, reported by Huffington Post.
0 (zero) - The number of major religions that are against their members donating an organ. All major organized religions in the United States are favorable of organ and tissue donation and most likely consider it an act of charity.
Take A Moment To Learn What A Difference You Could Make:
The Need For Living Kidney Donors
“There are about 90,000 people waiting for kidney transplants in the United States,” says Dr. Gibney. “There are about 14,000 kidney transplants a year. Each year, more people are in need of organs and get added to that list.
So that’s one of the things that makes living donation so important is that there’s a fairly limited supply of organs. If there are friends or family members who can give, that can save lives and really extend people’s lives by years and years.”
Media:
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