Great News - UPDATE - One Mo Kidney
Great News – UPDATE – One Mo Kidney
by Brian Coll
I wrote a story at the end of 2016 and followed it up in early 2017 about a local woman who needed a life saving kidney transplant. I checked in with the family a couple times after writing the story and they were so thankful. A few of our readers reached out to them and tried to be donors, but it has to be a very specific match. I reached out again over the holidays and got the best news I could have imagined….. I’m going to share the response I got with all of you…..
Brian! Hi there 🙂 (jamie responding).. thanks for reaching out, I hope your holidays are relaxing and enjoyable! My mom (Maureen) received the gift of life Sunday August 6th, 2017! We were actually all on our way down to wildwood for a family vacation and the hospital (Lehigh Valley Cedar Crest in allentown PA) called and said they had a young man who was sadly not going to survive & who’s family has decided to donate his organs. We don’t know much on the donor at all other then him being a young man- we are hoping his family responds to our letter of appreciation so that we can build a relationship with them, but my moms gfr (kind of “the percentage of function”) was at a 9 on the table the day of transplant. As of Christmas, she is at a 78! My mom has improved back to a version of herself I have not seen since I was a young girl. She was able to be there for the birth of my youngest baby this past October who we weren’t sure she would ever get a chance to meet or hold. She takes about 30 different prescription pills a day now to keep her new kidney as safe as possible but it has been incredible. Without an organ donor, I’m not sure where we would be today! Thank you so much for reaching out and helping support our search through some of our weakest moments!
This made my day/week/month!!!!! I was so happy to hear this news. I have to thank everyone who reached out when we originally ran the story a year ago. We are lucky to have such a great community here. Mo and family, if you are reading this, I am so happy for all of you. If you are ever out and about stop by the shop and say hello. Jamie, congrats on the new little one.
Here is what was written just about a year ago:
I was out taking photos one day and a bumper sticker caught my eye. It was so blunt:
NEEDED: KIDNEY DONOR
GIVE MAUREEN THE GIFT OF LIFE
This was on the back window of a car not far from my shop. It had a Ridge Park school sticker on it, so you know it is a local family in need. I took my phone out and called. I was upfront that I wasn’t in a position to donate, but have this website and maybe I can help spread the word. I talked to a few family members over the course of the last few days and I wanted to share some info I got. Maybe someone out there will read this and be able to help them out.
I actually spoke to a couple of family members and wanted to present one voice in this story, so here is a Q and A.
So…. I noticed a bumper sticker or something recently on a car parked in Conshy. It said something about a kidney needed. What can you tell me?
First, thank you for noticing our bumper stickers/car magnets! We were hoping to gain some awareness by blasting them around town! Our magnets are pretty blunt and bold. They state that we need a kidney donor for Maureen (my mother). We wanted to be short and sweet in our message, we want people to ask questions. The more questions that are asked…. the more awareness that’s gained!
But I’m sure you are looking for a ‘Why?’ to be answered here. Well, Maureen carries a genetic disease called Polycystic Kidney Disease (PKD). It is a genetic disease that took her Father (late Joseph Adams of Manayunk) from our family at the young age of 51 in 1986 after 4 years of dialysis and a kidney transplant. Maureen has the disease, as well as both living siblings and two of her three daughters (Maxine age 22 and Brenda age 28), thus far. An average kidney weighs about 1 pound, give or take a few ounces. My mothers weigh in at about 30 pounds EACH! PKD is when poisonous cysts develop on the kidneys causing them to reduce their function, eventually taking away their ability to work as the filter in the body that they were meant to be and leading to further damage to other organs. There are many side affects of having the disease: high blood pressure, diet restrictions and complications if you do not follow them, medication restrictions, weight, being extremely lethargic and nauseas almost all day every day, swelling of the body (literally the whole body), and so much more.
So this is a hereditary disease and there is a possibility of other family members having this or at some point showing the signs of this?
Yes, as mentioned above two out of three of Maureen’s daughters have PKD. The one who thus far (myself – Jamielynn age 24) has not been diagnosed and was last tested in April of 2015 while pregnant but runs the risk of developing symptoms at any point. Usually, the “clear” is age 30 but, that can fluctuate given family history and as we call it “luck of the draw”. Any children of someone with PKD run a 50/50 risk of developing PKD throughout their lifetime. Therefore, my siblings children are at a 50% risk.
Have other family members tried to donate?
We have had some family members attempt to be “the match”. It is not as easy as you think to find the perfect match! So far, with members that have attempted we have not had much luck. I, myself can not be tested until the age of 30 because of my risk being a child of someone with the disease. My fiancé (Jay Katona age 28) went through all of the testing but unfortunately found out through the process that one of his kidneys was under-developed, leaving him at a small possibility of being a potential candidate.
I understand it needs to be a match in order for it to work, how do they figure out a “match” size or blood type? Does age have anything to do with it?
To be an exact match a candidate would need to be in generally good health and have a generally good family history of health.The first thing following a clean bill of health is blood type, Maureen is a A+ (but any ‘A’ blood types could be a potential donor), next would be the kidney function of the potential donor. There are age restrictions for potential donors as well, mind you- every transplant center has their own guidelines for donating an organ, we are currently going through University of Pennsylvania Hospital in Philadelphia and their age restrictions are between the ages of 21 and 60. Finding a perfect match is like finding a needle in a haystack, but it is NOT impossible! Luckily, there are programs that if someone was interested in donating a kidney but they were not a direct match for my mother (Maureen), they could opt to be involved in a ‘Kidney Paired Donation Exchange Program”. This program would put you into a pool of families needing a kidney you may match, and who they may have in their family be a match for my mom. I try to jokingly explain it as a legal organ trade, but it is a wonderful program that opens so many doors for other families. I remember first hearing about the program at the University of Pennsylvania hospital at a family seminar we went to and hearing that they were involved in a kidney swap involving 28 donors and 28 recipients who did not have matches otherwise.
If someone would like to donate their kidney, what do they do? Do they call you so the right person gets a kidney?
They could always contact me directly with any questions. I have put my phone number on every magnet and some posters that are hung locally. Also, they can contact the transplant center directly. If someone were willing to be tested and/or be the donor, they could do it 100% confidential with no questions asked. There is an online link for the paper application, which would be the initial form to fill out to see if “on paper” someone qualifies to be a potential donor. Many people do not realize, you can be alive and donate a kidney and still function as you do today. Many people are born with only one kidney and are very healthy. There really is so much of the unknown on this topic, I wish it were talked about more!
The link for the application is: https://www.pennmedicine.org/~/media/Documents%20and%20Audio/Patient%20Forms/Transplant/LivingKidneyDonorApplication
How long will this donated kidney keep Mo alive?
I wish I could give an exact amount of time. A healthy kidney transplant could easily add 20 years to my Moms life right now at this point in time from where she is health wise. The longer time lapses before we find a donor, our odds can change depending on her overall health and kidney function.
Is the quality of life good, or is this simply a stop gap with years of medical treatments while they are bedridden?
It is AMAZING for many people with PKD when they receive the gift of life!
We are very heavily involved in the PKD Foundation ( A national non-profit who serves in helping those with PKD directly and the families that are affected with PKD with education information, advice on seeking medical treatment, discussion pages and groups in most major cities for support). I (Jamielynn) am the Philadelphia Chapter Coordinator and my Mom (Maureen) is the Philadelphia Walk Coordinator. So together, we have met some amazing families that are not yet where we are with this disease, some who are exactly where we are and some who have had amazing success stories with transplant time. There are always risks and complications, but our family motto is to be positive to get positive results!
I really hope this helps. like I said, please tell us more, about your group, or about the disease. Anything to help, ages of kids and grandkids?
Maureen found out at age 36 that she was a carrier of PKD after her oldest daughter, Brendaleigh was diagnosed at age 12. Up until that point, it was not known that PKD was genetic and could affect our family years after Maureen’s father loosing his battle to it in 1986 As mentioned before, we are heavily involved in the PKD Foundation. Before being volunteer members on behalf of Philadelphia we were just simply chapter members who joined in the events like every other family to learn about this disease, and how to help in any way we could. We were known as “Team Adams” (Adams being my mothers maiden name) . We had shirts made and participated in every annual walk that is held at Miles Park in Lafayette Hills as well as every event we could! In May we found out my mom was entering into stage 5 PKD and that we needed to begin the process of finding a donor and discovering dialysis options. Our goal is to avoid dialysis and get a transplant before Maureen NEEDS dialysis. Once she is a dialysis patient, there can be more risks to a transplant and in all, it will weaken her more then she already is. In August we held a beef and beer for my Mom and Dad to help with some medical expenses. Traveling for doctors appointments, medications and general every day life bills while being ill can really take a toll on someone. We (my three sisters, our three best friends, some family members and significant others) decided to get together and throw my parents this event as a way to show our support to them and remind my mom she will NEVER be alone through any of this. While planning, we came up with a hashtag #OneMoKidney . Through this journey and once we are past this hurdle we will always be Team Adams but our direct focus at this point in time is #OneMoKidney .
Kidney needed is for Maureen (Adams) Bickings, Age 49 – Spouse is Edward Bickings, Age 49.
Brendaleigh Bickings, Age 28. Mother of both Audrianna, Age 9 & Avaleigh Bickings, Age 4. — Brenda has PKD, diagnosed at age 12. Her children have yet to be tested.
Jamielynn Bickings, Age 24 (fiancé – James (Jay) Katona III, Age 28 – Parents of James Katona IV, age 1.
Maxine Bickings, Age 22. — Maxine has PKD, diagnosed at age 14.
So, I couldn’t just see the bumper sticker and not try to help in some small way. Even if this only helped us understand a little more about how a kidney donation works. I want to wish them the best of luck.
If you share this story, maybe we can add that hashtag. #OneMoKidney
I have one final thought, I spoke to a couple members of this family, everyone seemed so sincere and thankful. Multiple family members have went through the testing and none of them are the perfect match. As I was getting ready to put this story out there I mentioned it to someone who I didn’t realize they knew the family I was talking about and I thought I heard someone say Aunt Mo. I wasn’t sure if I heard that right or not, but it turned out this Mo, who needs the kidney has been a pretty special person to a few people over the years. I hope we can help as a community. It sounds like she is one of the good guys.