Helen has a donor! Her surgery will be tomorrow, on November 1, 2013.
To follow her journey, click here for her Caring Bridge Site.
Whoever her donor is, thank you.
Tonight’s blog is not about something “pretty.” Please take a look at the image below. The kidney on the right is healthy. The kidney on the left is affected by polycystic kidney disease. Helen Schwarz Jones has polycystic kidney disease, and I would like to share her story tonight as she searches for a donor.
To give you a different context, here is a comparison between a polycystic kidney and a football:
And when those football-sized, diseased kidneys are vying for room inside an abdomen, it looks like this:
I have included a pretty long version of Helen’s story (told by her) in tonight’s blog. If you don’t have time to read all the details, here’s the critical takeaway:
Helen’s kidneys are failing and will shut down in the near future. Ideally, a “living donor” will step forward to provide Helen a new kidney and the prospect of healthy years ahead with her family. (Dialysis is an option when Helen’s kidneys fail but there are many reasons why this is not optimal.) Please share Helen’s story as widely as possible; if a willing living donor is out there, it is imperative that the process begin soon. You can direct people to www.helenneedsakidneydonor.com for instructions.
Here is Helen’s story as told by her:
Hi, I am Helen Schwarz. I am a wife of a fantastic husband, a mother of two wonderful children and a grandmother to three beautiful grandchildren. I need a kidney – in order to continue to live and enjoy my family. On a scale of one to ten, my pain is at a level of seven to eight most days, though I don’t let it show. The pain is there whether I am working, playing or sleeping. In fact sleeping is difficult as the weight of my kidneys make lying down very painful. Polycystic Kidney Disease (PKD) has caused my kidneys to fail. My kidney function has dropped to 10% so time is of the essence.
Nobody knew that I had PKD because people with PKD don’t typically look ‘sick’. I became aware of my kidney condition, PKD in 1980 and proactively managed this genetic disease for over 30 years working full-time and raising the two most wonderful children. Fifty percent of PKD patients’ kidneys will fail and need transplantation and/or dialysis and one in four people with PKD have brain aneurisms.
In 2004 I was diagnosed with three brain aneurisms. I thought that my life was over then, but God had a plan. I was in the hands of the best neurosurgeon, Dr. Raphael Tamargo, who was one of a few neurosurgeons who performed multiple aneurism surgery in one procedure, at one of the best hospitals, Johns Hopkins. These nine years allowed me to continue to work, watch my son become a firefighter/paramedic and my daughter get married to a wonderful man and bless me with three grandchildren. Now nine years later my kidneys are failing and I need a kidney transplant and I pray that I can be blessed with another decade of quality life through a transplant.
I am desperately seeking an “O” blood type donor who would be willing to sacrifice a kidney to save my life. This is the quickest way to get a transplant and once identified as my donor all expenses are paid by my insurance. Another option is to find a donor willing to be in the paired exchange program with me, in this case blood type won’t matter, but the wait could take up to 2 years. Without a donor I will have to wait for a cadaver kidney which can take up to 5-6 years before I would be transplanted.
I don’t have that time – I will be on dialysis if I don’t find a donor soon. Optimal surgery would be to perform the transplant before starting dialysis and that is my goal as well as the goal of my nephrologists. Due to the size of my kidneys if I don’t find a donor, I may have to have a double nephrectomy and live on dialysis, and then when a kidney match is found I would have to undergo a second surgery for the kidney transplant. This would be extremely difficult for my body so we are trying to avoid this at all costs, but in the meantime my kidneys are crowding my other vital organs and daily life is becoming more difficult.
Please help. I am on the kidney transplant waiting list at University of Maryland Medical Center, one of the nation’s largest kidney transplant centers.
It’s far more beneficial for me to pursue a living kidney donor. The benefits to finding a living kidney donor include a shorter wait time and the fact that a kidney from a living donor has the potential to last on average about twice as long as a kidney from a deceased donor.
I need that time – I am “Grammy” to a 3-year old granddaughter, a 2-year old grandson and 3-month old grandson – I want to see them grow up at least through elementary school. I want to be their fun Grammy. My family is very supportive but unfortunately they are not able to be donors – the genetic disease I have is hereditary. My husband, who is my rock, has tried to be donor in the paired exchange program but was not able to be a donor due to a cyst on his kidney which makes him ineligible to donate – thankfully the cyst is a non-medical issue.
Since May 30, 2013, when I was listed on the transplant list I have been blessed with two ‘O’ donor candidates. The first one was about to go to Maryland for her evaluation as she was a match, but due lack of family support had to stop the process, the second one has not been tested yet but her mother suddenly became critically ill so she has to postpone moving forward.
I need to find an “O” donor willing to go to UMMC in Baltimore. I need to have donors to be tested because as the transplant centers tell you – keep sending potential donors because the criteria to become a donor is very strict and many potential donors are eliminated due to one thing or another.
It is an emotional roller coaster and I get through it by praying and with the prayers of family, many friends and strangers. It is said that God helps those that help themselves. I am proactively doing everything I can to stay healthy both physically and mentally, watching my diet, avoiding depression and enjoying every day, working full-time and playing with my beautiful grandchildren.
I would be honored if you would serve as an advocate to let others know about my need. Please help me find a donor, my energizer bunny, who can enable me to continue to receive the blessing of a daily dose of life!
For more contact/follow up information:
Facebook page: Helen Needs A Kidney Donor
Cell Phone: 850-459-4353
Email address: email@example.com
For a collection of blogs of experiences of living donors, visit this site.
For Helen’s boss, Bob Gabordi’s moving blog about Helen, click here.
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.