Jefferson recently celebrated surpassing 1,000 liver transplants since starting the first program in the Delaware Valley over 30 years ago. Each of those 1,000 transplants is a miracle. A patient, donor and families are impacted forever. Denise Benckert-Frank, the recipient of the 1,000th liver transplant at Jefferson, shares her story here.
I was first diagnosed with Polycystic Liver Disease (PLD) after my pregnancy with my third child in 2001. I was 33 years old. I also have Polycystic Kidney Disease (PKD) which I was diagnosed in 1996 following an incident with kidney stones and high blood pressure. However, it was during my pregnancy, at the beginning of my 2nd trimester, that I started having severe agonizing pain in my diaphragm, up in my rib cage, and I felt as though I could not breathe. I went to the emergency room at my local hospital roughly three times during my pregnancy, but was never given a diagnosis. I was told by my ob/gyn doctors that it had nothing to do with my pregnancy and that my baby was fine. It seemed that while my son was growing, my cysts were multiplying.
After the birth of my son in September 2001, I followed up with my nephrologist who specializes in PKD and he diagnosed me with PLD. He referred me to Dr. Steven Herrine at Jefferson, who specializes in PLD.
I did not have further symptoms after my son’s birth but a few years later, the symptoms returned. I always felt “full” as though I had eaten a full five-course meal. I could not eat. After a few bites of something, I felt as though my stomach was going to explode. I had upper right shoulder pain which would radiate under my rib cage and down my back. It was difficult to breathe. Over the years it got to the point that I could not bend over. My abdomen grew to the size of a woman who was 10 months pregnant with triplets. Everyone assumed I was pregnant and due to give birth any day. My muscles were wasting away. I felt I was all skin and bones but with a huge protruding belly. I was weak, dizzy, lethargic, and always nauseous. I could not walk any distance, bend over, or sleep lying down. I suffered severely with Irritable Bowel Syndrome symptoms. I could no longer dance. I could no longer play with my grand-daughter or even hold my newborn grandson. I missed out on so much with my family due to this disease.
Dr. Herrine referred me to Jefferson’s Transplant Institute in 2014. I got “the call” on May 25, 2015! My transplant was a huge success. It is not an easy surgery to recover from, that’s for sure! My surgeon even said that recovery is slow-it takes roughly 3-4 months to finally feel like “yourself” again – and it’s true. But the more you get up and walk around, and do the exercises that your physical therapist and/or occupational therapist suggest, the sooner you will feel better in no time!
It took me about seven or eight months to finally feel completely healed. I can now exercise, dance, play with my grandchildren which I could not do before. I have energy, I am not sick like I was, and most importantly, I feel ALIVE! I do not take life for granted because every second is so precious to me.
My advice to those who are suffering with this disease is please DO NOT give up HOPE! I almost had. I almost resolved myself to the fact that I was slowly dying. But do not give up, keep fighting. If your doctor does not listen to you regarding your symptoms (unfortunately, many do not listen), find a doctor who will, and choose someone who is familiar with PLD. It’s an agonizing disease, but one that does not cause liver failure. That is why so many people with this disease suffer and succumb. Listen to your body, find a doctor who will listen, speak up and be your biggest advocate. I found mine at Jefferson! The Jefferson Transplant Team, starting with my surgeon, Dr. Warren Maley, all the other doctors and nurses, including my transplant coordinator Sarah and social workers are all so kind, compassionate, empathetic and caring. I will never forget what they’ve done for me! Jefferson was there to say, “We are here for you, we can help and we care.”
And never forget your donor and his or her family. Without them, living would not be possible.