Note from Lori: When I started Twirly Girls in December of 2009, a group of friends were scheduled to come with me. Everyone backed out, except one — and that was Rita. I met Rita a couple of years before, not long after she’d had her third kidney transplant. We have certainly enjoyed many adventures together over the years and I wanted to share a little bit about her story to help people understand why Twirly Girls hosts the Lovely Rita fundraiser every year.
This is Rita’s story, in her own words, modified from a speech she gave for the National Kidney Foundation:
Tenacity: the quality or fact of being very determined; continuing to exist; persistence.
I would ask that you keep this word in mind for the next several minutes.
Hello, my name is Rita Pearson. I am a three-time kidney transplant recipient. Today I am here to tell my story of life with kidney disease. This journey began 40 years ago as an 11 year old girl from Reno Nevada who liked to play outside, ride bikes, play kickball and twirl on the “monkey bars.” You would call my family “outdoorsy”, with the Sierra Nevadas as our back drop, who wouldn’t be? On one of many trips in the mountains my father fell and sprained his ankle. It became very swollen. That night, when he and I were talking, he stuck his swollen leg out and I placed my leg next to his. I remember saying “Look. My leg is swollen too.” My very worried mother took me to the doctor the next day. This was the first of many doctor visits, and lab tests that would become a staple in my life. I think I have personally helped many doctors pay back their student loans.
The final result was a diagnosis of Membranoproliferative Glomerulonephritis. These are very long words for an 11-year-old girl and her worried mom. I was put on alternating high dosages of prednisone and high blood pressure medication and sent home. My poor mom. Can you imagine? Adolescence, hormones and prednisone. I gained a round face, mood swings and a sense of not being right or just different. A low immune system kept me away from people. I became withdrawn and lost. Kidney disease does that. It isolates you. Anyone with kidney disease must find inner strength to make sure they are not left behind and are included in life. Somehow, through sheer determination, my mom and I survived and I made it through high school. From there, college. I am the first of my family to graduate college. It is here I met my husband, David. One thing led to another and we have been married for 25 years. It was during my first year of marriage I was to start dialysis. However, I was very fortunate. On the day I was to have the fistula installed I received my first miracle call. A cadaver kidney was waiting. Get here quick. I was 26 years old and a young, professional woman. I wanted a normal life. I wanted to be a mom.
Prior to my first transplant, I had been told I could not have children and even if I one day could, it was not recommended.
Surprisingly, three years after my first transplant I was told that I could have a child. I would need to be at least three years post-transplant and healthy. My husband and I waited the required time. Once again, persistence, patience. I became a mom to a smart, beautiful girl. We call her Kate. She is now attending St. Mary’s College and is spending this school year in Italy. Despite the obstacles, this dream came true.
I then went back to a normal life as a transplant patient, mom, wife and professional. However, in 2002 my transplant failed and I was again forced to decide the type of dialysis to undertake. I chose hemodialysis so that I would be at home with my family. I continued to work while doing dialysis four times per day. It was horribly physically and emotionally draining experience but I and my family soldiered on. During this time, we tested my husband on a lark and found out that he was actually a perfect match for me. While he was going through all of the hoops to donate, a second cadaver kidney became available. We, of course, jumped on the opportunity.
Once again, back to normal life. However, this kidney never really took and in 2007 or so, it failed. This time, I opted for peritoneal dialysis three times per week. No one should ever have to live this daily or weekly torture. But the third time is the magic number and on June 20, 2008, while celebrating my husband’s birthday, we were called about a cadaver kidney and on June 21, I received my third transplant.
And as we say life goes on and here we are today eight years later.
I have been asked many times what is it like to have a lifelong struggle with disease. Here is a list of cons and pros:
I like to end on the positives.
- Energy is needed in life! I just do not have the same energy as others.
- I do not have an strong immune system. I have spent long periods of time isolated because of it. Next time you know of someone who is struggling, go get them and take them on a mini adventure. It keeps them engaged in life.
- I would really like to get back the time spent at doctors, hospitals, and getting lab tests done. Time is a precious commodity in life. Make sure you treat it with respect.
- Mood swings — Prednisone and adolescence do not mix. (I’m sorry family!)
- My little girl watched me through two transplants and several years of dialysis. No child should have to watch their mom get so weak and tired.
Now for the good stuff, the Pros:
- I get to see how precious each and every day is. Actually I know this. Not in theory, or some Facebook post. But I know this to my very bones.
- I realize the importance of being able to walk and think clearly. These are gifts many take for granted.
- I am so very thankful for my family. I know to tell them frequently. Because you never know what the future holds. But I know they know how precious each of them is to me.
- I do not sweat the small stuff. It is the big stuff that matters.
What I would like the medical profession to understand about living with a lifelong chronic disease:
Having to deal with health issues every day touches everything in my life. My energy, my ability to walk, sit, run or just plan or think, my relationships with everyone and more. Finding energy to do anything is a constant re-negotiation each and every day. I hope to be able to do X, if my legs do not swell up, if I do not get dizzy, if I can form a coherent thought in my brain addled with all the extra unwanted chemicals in my system. But it is the isolation from life and people that is the hardest part. Being forced to stay at home and rest my broken body means I miss out on many opportunities and it is sooooo boring. I want to say yes to everything. My mind is there, but my body just cannot make it.
This fatigue and forced rest has not been fair to my family. They have to pick up my slack. I cannot tell how much I hate not being able to go the extra mile for them. Not always being there.
One thing everyone can do today is to call someone who is stuck at home. Better yet, take them out for 30 minutes or maybe it is just 20 minutes. Just a little freedom makes a huge difference.
In conclusion, this journey has made me the person I am. Looking back, I would not change a thing.
A post-script from Lori: I want to thank all of the Twirly Girls who have helped make the Lovely Rita Fundraiser a success in years-past and who are preparing for this year’s event. We really do appreciate all of the time spent preparing routines, as well as the items and money donated. I want to personally recognize Diana for bringing in the bleachers and giving people a place to actually sit (I’ve attended many events where you have to sit on the floor) and also Bel for donating so much studio time to make this such a great event.
Rita ran into some more health problems almost a year ago and hasn’t been able to make it to class in quite a while. I know many new students don’t know Rita personally and have probably been wondering why we put on this event. I hope this helps you understand a little bit more about Rita.
Please save the date! Twirly Girls’ 8th Annual Lovely Rita Fundraiser will be held Saturday, April 22. Ticket sales and raffles will benefit the National Kidney Foundation. We are looking for performers, volunteers, and raffle items to be donated. If you would like to be involved, please let Bel know! And if you have any questions, or would like to drop Rita a note, please feel free to join the Twirly Girls group on Facebook and leave comments there! We look forward to seeing you in April!